The Stages of Endometriosis

Your doctor enters the office for your post-op visit with a print-out of pictures. There’s your uterus, cul-de-sac, ovaries. Yep, they’re all there. But what’s that covering them? What’s that red stuff? That dark, oozy looking, purplish, bruisy stuff growing where it shouldn’t? Then your doctor starts throwing about terms like endometriosis and stage… and the words become jumbled in the world of Medical Terminology Land, and you become lost.

Let’s just clear those stages up then, shall we?

Stage 1: Just a few endometrial implant; mostly found in the cul-de-sac and pelvic area.

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Stage 2: moderate levels of endometriosis to mild levels that not only affect the above areas but can now affect the ovaries.

stage22

 

Stage 3: moderate amount of disease and in extensive places around the pelvic cavity, with adhesions.

endometriosis_and_adhesion

 

Stage 4: extensive endomtrial implants sprinkled all throughout the pelvic cavity with adhesions; higher probability of infertility.

endometriosis1

 

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!!!!

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198 responses to “The Stages of Endometriosis

  1. Endochick,

    Cool pictures! I think it’s important at this point to make note that women with “mild” endometriosis can *sometimes* have debilitating pain and women with Stage IV/severe endometriosis can have no pain in *some* cases.

    It sounds bizarre but it’s true. The amount of endometrial implants and the size of them does not necessarily correspond to the degree of pain.

    Granted there are also women with “mild” endometriosis whose pain is “relatively minimal” and there are women with Stage IV endo who have horrific pain. However, this isn’t always the pattern.

    The point is that the stages don’t necessarily correspond to the pain level. Microscopic endometrial lesions can cause excrutiating pain in some cases.

    Clearly Stage IV endo can lead to higher odds of infertility if only because there are physiological issues going on (i.e. perhaps the fallopian tubes are blocked or possibly the ovaries are so encased in endometriomas that they are having trouble functioning).

    In any event, I think that sometimes women with “mild” endo (mild as defined by the stages) end up feeling that doctors don’t take their pain as seriously. We with invisible chronic illnesses all know that “seeing is believing” for some people. Smart doctors realize that “mild” endo patients potentially suffer just as much as patients with severe cases.

    Jeanne

    • So true Jeanne. I just had surgery and they discovered stage 3-4 endo and I never has a single symptom. It is so important to find an OB/GYN who is thorough enough to take the time to truly palpate your ovaries an follow up on any abnormalities past the usual tests. Mine could have balmed them on hyoithryroidmism, oncoming menopause or just not being able to palpate them due to my being overweight. Instead, she ordered an ultrasound and then a ca125 test and then she supported my decision to have open surgery instead of laproscopy.

      I am an RN and so I know how important it is to find a good OB/GYN who looks beyond the symptoms (or in my case, lack thereof) and go the extra mile.

      • Diane, Hi my name is Mary lou was he surgery a success? What did they do when they open u. My daughter has a severe case of endometriosis, she has been hospitalized twice for pain control and stopping the heavy blood flow. They have takes 1 ovary and 1 fallopian tube. i wish I could take her pain away. How are you?

      • Mary Lou, just letting you that unless Diane is following this thread, she will not see your comment and be able to respond to you. People mistake this post as a forum all the time, when it’s actually comments on a blog post.

    • christelle barnard

      i feel strong im by stage 2 of wat i read and wat my results say talk about inflammable cells and the pain please help im 30years old married for 6years have 2babies 5 and 3years old

      • The important thing to remember about endometriosis, Christelle, is that your pain and symptoms will not always correlate with disease stage. I’ve known women who merely had heavy bleeding and were found to be stage 4. And others who are incapacitated from the pain, relying on heavy pain meds, who had stage 1. Really, focus should be on managing pain and symptoms.

    • Just stumbled across this blog and wish I had 3 yrs ago. First off I am a stage 4 endo woman had laproscopic surgery to remove 40 adhesions that radiated to my appendix(removed during my surgery) and intestinal wall. My 4 hr surgery lasted 8 hrs due to the fact of ther also being a large fibroid that went thro my uterine wall (my Dr. stated it looked like a bomb went off in my uterus). I was diagnosed at 30 after a chocolate cyst ruptured (worse pain then the endo surgery) prior to that I had SEVERE CRIPPLING Pain during sex and after and pain prior and during my periods. They would be every month and then stop for a month or two and then come back with a vegenace.
      My post op regimen was Lupron which I was pain free and no period BUT I gained weight and my hair started to get thinner Ie coming out in the shower alot and Became very depressed. After Lupron had Dexa scan Because Lupron affects Bone density becasue Lupron is like a premenopause. That sucked and so did being on birth control after Lupron. I didn’t feel like a person I felt trapped and scared.
      SO I took my self of the birth control and I have not had any symptoms luckily so far.
      I am 35 and have no children—wanted to wait for the right person and be more financial secure—But I want all the women who have no children and unsure if you can like myself that this Disease DOES NOT DEFINE WHO YOU ARE!!!! You are no less of a woman if you cannot have a child of your own. There is always adoption if you want to be a mother that badly(may be my only option and my future husband is understanding and supportive of this idea). I belive you are all BRAVE— this disease is hard…

      Lastly for a few years I was Endo…I let it consume my life but I am a woman with endo and the way I deal with this being a Part of Me— NOT ME. It Is who I am as a person and how I deal with lifes challenges thatREALLY makes me a Woman LIKE THE REST OF YOU. Keep hope and keep being strong….
      We are the faces of endo and we as woman can share this knowledge with other women who do not know or are affected by this disease.
      I wish I came acrss this sooner would have helped me then as I hope my writing helps any of you now. ALL MY BEST

      Niecy

      • Thankyou, I have been in pain for years and switched to a new doctor. She listened to my symptoms and took action. I dont know what stage I am at but it was very helpful and comforting to read your story. No matter what stage I am at I will not let it define me. Thanks again.

      • Kristin, so glad you switched and found a doctor who will listen and take your concerns seriously! Hope you find the answers you need! Good luck!

  2. Jeanne is correct about the pain levels. I had stage 4 endo and never even knew I had it until I had a chocolate cist burst and needed emergency surgery. I have pain now, though some of that is understanding my body better and responding correctly to the pain. Looking back I had symptoms but they were never bad enough to seek help.

    My sister, years ago, was doubled over in pain from endo but had very little adhesions.

    I am not a doctor but I have read just about everything there is to read about endo and there really is no pattern. The location and persons pain tollerance factor in for sure.

    Best of luck to everyone.

    -C-

  3. I was diagnosed with Stage IV Endometriosis in January 2009. i had 3 chocolate cysts that were about the size of grapfruits. They took 2 out and 1 is still there. It is attached to my bowel (bowel movements are agony!) and so during my next surgery they will have a specialist come in and remove it. My ovaries were “kissing”.

    I have had crippling cramps since I started mesturating (at age 13, I am now 39) but I just thought it was normal cramps. Thank goodness my Doctor referred me for an ultrasound. My laprascopy was January 16, 2009 and I have been on Lupron since March. With Lupron I get really bad migraines, hot flashes and just general body aches.

    But to be quite honest, it feels good to have a diagnosis! I feel empowered by being able to research more about endometeriosis and put a name to it other than “cramps”.

    I have never had kids although I would love to. My FSH levels in October were 15, so I am not even sure if having kids is a possibility.

    i just had my first transvaginal ultrasound since the surgery today due to sharp pains on my left side (just under my rib cage and travelling downwards) . This is the site of the tumour they could not remove.

    My Specialist does not want to go to surgery, but if we do go, then the next surgery will be in September. But truth be told, I would rather go to surgery now and just get it over and done with!

    Best of luck to all of you going through this.

    Cindy

    • Cindy,
      I am now 10 days post op from a total hysterectomy and removal of ovaries, fallopian tubes and cervix as well as the uterus. I had the surgery the day after I turned 45. I am still single and also wanted kids so it was a tough decision and yet it wasn’t. I can totally understand your desire to have your surgery now and get it “over ad done with”. I was blessed to have an OB/GYN who took the time to feel my ovaries and followup on enlarged ovaries with a pelvic ultrasound instead of just blaming it on hypothyroidism, menopause, etc. She also gave me the immediate option of open abdominal surgeyr when the ca125 came back elevated. While it was tough to have my dream of having children come to a dfinite end, knowing they got everyhting and I was cancer free and didn’t ave to worry about future issues was well worth it. When I went into surgery they thought they were going in because of a tumor on one ovary, cysts on teh other and a large uterine fibroid. What they found was stage 3-4 endo. I had absolutely no pelvic pain, irregular periods, etc.

      While the abdominal incision is fom top to bottom and it hurts, I am glad I did it. I honestly didn’t want to mess around with months of homrone treatment and always wondering if it could be cancer. If your MD won’t support your desire for surgeyr, find another specialist. It’s your body and your choice. I am not an advocate for needless surgeries but I also know that dragging things out wears you done physically and emotionally ans can actually increase your risk of developing cancer.

      Hang in there!
      Diane

      • i was stage 4 endometriosios for years just had surgery for total hysterectomy and an ileostomy which was told is reversal should have done it years ago

  4. AM just abit confused at the moment as i have just been told i have Endometriosis stage 3 and since am only 27 and i have never had kids i just feel scared. Alot of questions are going through my mind? what did i do wrong? was is it my diet? Things like that. I hope i get it sorted soon…

    • Jerry,
      You didn’t do anything wrong! There is nothing you could’ve done to prevent this from happening – no better diet, exercise, or positive thinking. It’s not your fault.

    • Jerry,
      I can totally relate to your situation. I am 28 yrs old and in July 2010 I had surgery to remove masses on both ovaries. Turned out, I have Endo stage 4. I suffered from chronic cramps and I constantly went to my primary doctor. Of course, her response was that it was normal to have chronic pain. Just like you, I have so many questions and what really pisses me off is that my doctor keeps canceling on my appointments so I’m really bitter. Makes me think, she feels guilty or embarrass. I hope you find all the answers to your questions. I will continue to research this disease and hopefully in the future able to have my own kids. Why not be optimistic.

    • I am 25 and had surgery at 22 to remove an endometriotic cyst which resulted in removing the ovary because the dr said it had taken over my ovary and couldn’t be separated. I had severe pain before that which resulted in me crawling to my car when it would hit while in public. Very embarrassing!! Took Lupron for a year after surgery.. Hardest thing I’ve been through.. Teeth are falling apart now. Been on LoEstrin 24 for 2 years now take straight harmone pills for 6 mo, then sugar for 4 days! All of that helped the pain but the biggest difference has most definitely been changing my diet. Started what’s called “clean” eating 1.5 yrs ago and the days I cheat I typically have terrible pain.. Crazy I know but I feel amazing now!

      • Brooke, my daughter was diagnosed today with stage 4 endometriosis. She was supposed to have some cysts removed but the Dr. said when she went in that everything she touched bled so she closed the incision and decided to treat it with medication before attempting surgery again. Morgan is 26. Please tell me about “clean eating” so I can suggest this form of therapy to her. Thank you, Kay

  5. Jerry,

    Endochick is absolutely right… it’s not your fault that you have endometriosis. Blaming yourself for having endo is akin to blaming yourself for having breast cancer or rheumatoid arthritis.

    While doctors have several theories, there is no proven cause of endometriosis. However, research has shown endometriosis to sometimes run in families.

    While this is not always the case, there are a fair number of patients who appear to have been genetically pre-disposed to endometriosis. Obviously they didn’t ask for the endo genes. My mother has endo. So do I. I didn’t ask for it. I just got it.

    It is common and very normal to be confused when diagnosed with endometriosis. If you’re like me, you possibly never even heard of endometriosis until your doctor began to strongly suspect it or actually made the official diagnosis.

    It’s difficult to understand an illness one knows little or nothing about. (Most people in our society who don’t have endo don’t understand it. Loved ones of patients might “get it” better than most other non endo patients).

    So being confused is to be expected. It takes times to absorb all of the information. I wish you the best of luck in getting less confused and more comfortable in the knowledge that it is NOT your fault you have endometriosis.

    Best of luck to you,

    Jeanne

  6. This is to all women that suffer from this:
    I had a lot of questions relating to endometriosis as well. I have always had really bad periods and migraines since I was 11, now I’m 30. I didn’t know I had it till I was 26, had it removed in Oct. of ’07. I had an HSG test done in Aug. of ’08, and I have been seeing a fertility doctor since Feb. of this year. I finally couldn’t take it anymore, and I went to see a Dr. that specializes in endometriosis, and he said I was in stage 3. What is really weird, is that I was completely clear when I had the HSG test,and when I had the surgery three weeks ago, my ovaries,tubes,some of my intestine area and my colon were covered. We meet with the fertility Dr next week, hopefully he has some good news for us. I also have a tilted uterus, and I have polycistic ovaries. The Dr. says I have tilted uterus because of the endo. I have heard a lot of women that have this, after they have it removed they still have to have IUI or in-vitro, is this true? I would appreciate any feedback, thanks-Jennifer

    • Well, my mom is haveing a procedure done because her OB / GYN thinks she has Endometriosis. As I was trying to get more info. I found out that if she does have it most likely so do I. My aunt had a hystoectomy a few years back and i think it was for the same thing. My mom has 4 kids (26yr old (me), a 22 yr old, a 18 yr old & a 7 yr old. I jus got married a year and a half ago and have been trying to get preagnant since March 2009 with no results. I have had an irregular period since I was 12 yrs old. I have constant bleeding and it last me between 3-6 weeks. My lifes dream was to be a mother and I am scared out of my mind. I know this site is for woman who have already been diagnosed but does any one have any advise for me.

    • I am now 33, I had my first period when I was 11 and it was painful even then, and they all last 9-10 days with extremely heavy flow. I was diagnosed with endo after several years of misdiagnosis a finally a laparoscopy in 1996. I think my stage was 2 – but I would stay in bed for a couple days a month because of the pain and how tired and grouchy it made me – I had adhesions, cysts and it was on my bladder and colon. I got pregnant in 1997, had my daughter in 1998. I felt the pain come back that same year. Went on Hormone treatments for several years until I got married and wanted more kids. In 2006 I had a daughter and in 2007 had a son. Now my symptoms are so bad that my husband is asking me to think about surgery again. Yet I didn’t feel the pain as strong until last month and again this month. I guess I just want to say that it is possible to have kids after diagnosis. But having no cure I hate the fact it is affecting me again. I was the first in my family to be diagnosed, but several others have the symptoms and then my sister was diagnosed as well. Thank you for sharing your experience. It helps.

      • I am now 18 years old, my period started at the age of 11 with pain I could not bare. My period were irregular. Every Gyn. I’ve been too told me it would take a miracle for me to get pregnant. In 2009 my Gyn suggests that I should go for a laproscopic and a histroscopical surgery, I was then diagnosed with Stage 1 Endometriosis. Every month is hell, time and again my mother found me passed out in the bathroom or kitchen, I would wake up in the hospital. I am now Matric. My school teachers could never understand why I am absent almost 1 day every week. They’ve told me I use my condition as an excuse just too stay home. My question is, how do you cope in life with this pain almost everyday with people around you that don’t have a clue what Endo is, when they constantly think you’re just lazy and just not in the mood for school, well who would be if they are in such pain?

      • Celestia, I’m sorry you feel isolated in your pain. Invisible illnesses are hard because no one understands unless they have it. For me, I find solace in those who know my pain and offer support. Sometimes you just need to cry on someone’s shoulder. Feeling alone makes pain worse. I also find solace in my faith. Come here anytime and I’m an email away If you need to talk.

  7. The mood swings good gosh im its so hard but finally i know im not crazy a true crazy person i cant control any hormones most of the time because of my pain.

  8. hi, im 14 and i just found out today that i have endometriosis, im not sure what its all about, but i need some help and i need info about treatments, i have a big decision to make, and i have a massive cyst closing off one of my fallopian tubes. i would really appreciate some info if anyone has any. my email is (email removed for privacy) and i dont want any pervs emailing me

    • Hillary,

      I removed your email so that no one can use it to email you unwillingly. I understand how shocking the diagnosis of endometriosis can be, especially for someone so young! Being so young, there are many treatment options available to you.

  9. I’m stage 4, one wk out from my big “fit it”op where I have no control on what i keep or what I loss – which I hate. My endo was mis-treated for yrs with my GP telling me the pains were normal and just have something for it. Till I colasped last xmas with a fever of over 40C. My endo caused me to get PID which has caused an infection and attacked my kindey, and pretty much everything else there. Don’t let Dr’s tell you to handle the pain. It sucks.

    • I haven’t been diagnosed with endo but every doctor I have seen in the past 3 weeks for the stabbing pain in my lower right abdomen has pretty much bet all their money on it. I have had to go to the ER twice in one week, both times sent me home with pain pills. I have to follow up with a surgeon which makes me a little nervous but at the same time i want answers. After reading all these posts I really feel that this may be a good indication of what I have been suffering from for a long time. I have always had debilitating “cramps” and migraines. Two years ago I was diagnosed with IBS. After avoiding every food in the book and taking the recommended amount of daily fiber I was still irregular. After reading more and more about Endo it talks about how it can affect your bowel movements.

      How come the hospitals or my ob/gyn couldn’t tell me with with a CATscan of my lower abdominal area or an internal sonogram? Or with blood work if I have Endo or not?

      I have to consult with a surgeon tomorrow morning. I am scared. Surgery is scary but I this pain is intense and I can’t take it anymore. Any words of adivce?

      • I know this isn’t quite a recent post, but I wanted to post anyway to anyone else that might be reading.

        In order for endo to be diagnosed, it HAS to be through a laparoscopic procedure. PAPS, U/S’s, and the like won’t show the whole picture, or anything at all, in my case.

        The IBS, migranes, thyroid problems, pains… all is assosiated with Endo. I have found a website that gives wonderful information, though it is a bit intimidating. Everything that has ever been wrong with me is because of this disease.

        This is a great website for gathering information and answers a lot of questions anyone may have. Good luck to you all.

        http://www.endo-resolved.com

    • i had stage 4 but had a total hysterectomy but ended up with a stoma
      hope you get sorted just keep asking

  10. Jenny,

    I am subscribed to the comments for this post and saw your question to Endochick. Since your consultation is tomorrow, I thought I’d comment on some of what you said here.

    First, I am sorry you are suffering so much. Two trips in a week to the ER is clearly no fun!

    I think it’s very normal to be apprehensive about the potential for surgery. At the same time, laparoscopic surgery is the definitive method to diagnose endometriosis at this time. Blood work will not tell you if you have endo. Nor will a CATscan.

    There are other illnesses whose symptoms can mimic endometriosis. The only way to know for sure if you do/don’t have endo is to have a laparoscopy. It is important to have a surgeon who is highly skilled at recognizing and removing endometriosis. Not all doctors are.

    IBS is one of many conditions that potentially co-exists with endo. Migraines are another condition that affects many women with endo.

    If you have anyone you trust (friend, relative) who might be able to go with you to the appointment, that can help. Taking notes can be helpful. Taking a list of questions can be useful. These are just a few suggestions.

    Try not to be scared about going in to meet a surgeon. The pain that’s sending you to the ER twice in a week sounds pretty scary. I am sorry you are going through so much.

    You may find posts on my blog (linked here on this comment) with more ideas that might help you. If you go to my blog and click the endometriosis category or use the search box (right sidebar) to look for something specific, you may find it more easily. I’ve had endo 27 years now. I’m now 40 years old.

    Best of luck at your appointment! :)

    Jeanne

    P.S. Endochick, I didn’t think you’d mind if I chimed in since her comment is time sensitive.

    • No problem, Jeanne! Thanks for helping seeing as you know I’m so busy at the moment and couldn’t help this lady myself. Thanks for taking the initiative on my behalf. :-) That’s what friends are for, right?

  11. Thank you so much for the kind words of encouragement and wisdom. I would have never thought to take a list of questions with me. My consultation isn’t until Friday. I was in the ER Friday and the doctor that examined me told me to consult with a surgeon ASAP…I called first thing this morning and my appointment isn’t until Friday??? I’m in so much pain….what should I do??

  12. Jenny,

    I’m really sorry you’re in so much pain. I know what it’s like and it’s scary. :(

    Believe it or not, it’s not uncommon to have to wait 2-3 months to get in with a specialist familiar with endometriosis well enough to recognize and remove it. All doctors are definitely not created equal. This is especially true with a condition like endo, which is often difficult to see and can also be quite difficult to remove. I’m not sure what type of surgeon you booked an appointment with but it really is crucial to find a doctor who is experienced at treating endo.

    Unlike other illnesses, there is no automatic answer on who to see for endo. In other words, someone with neurological problems sees a neurologist, someone with diabetes sees an endocrinologist, someone with cardiac problems sees a cardiologist… but who does an endometriosis patient see? Who does an endo patient go to when looking for a surgeon? A gynecologist? Maybe but some (not all) gynecologists are pretty clueless about endo. A pelvic pain specialist? If you’re lucky enough to have one near you, this might be a good option (especially since you obviously have pain as a symptom). A reproductive endocrinologist? Maybe… infertility affects many endo patients so this is another possible specialist to see if one has endo.

    While some doctors call themselves “endometriosis specialists”, there is no accreditation process for becoming an “endometriosis specialist”. So it can really put an endometriosis patient (or person who is suspected to have endo) in a bind. There is no simple answer to how to go about finding the right doctor for you. If you have an endo support group in your area, its members could be a very valuable resource for finding good care.

    Now, I know you are concerned with the short term right now… the question of how you will deal with the pain between now and Friday. The reason I gave this other info first is that (I’m afraid) there is no magic answer as to how you’ll manage your pain (but I will give you some ideas in a minute) and that the info I just gave you is important for you to have for long-term management of symptoms, including pain.

    I don’t know that much about your pain at this moment. In other words, I don’t know if what you mentioned is all of it or part of it. There are many ways endo pain can manifest itself (ovulation pain, menstrual cramps, pelvic pain that’s not period-related, abdominal pain, intestinal pain, etc.) How endo pain displays itself varies from person to person. However, here are some ideas for getting through this difficult time.

    1) Relaxing music. This is one of my biggest coping tools. When I am in severe pain, my muscles tense (as do everyone’s). When muscles tense up, pain worsens. Anything that help with stress reduction and relaxation potentially helps relax those muscles.

    2) Deep relaxation breathing, progressive muscle relaxation exercises, and mindfulness meditation. These are different techniques for relaxing the body and mind. You can find info online on these.

    3) Try to make sure you’re getting enough rest. Sleep deprivation can worsen pain. Do whatever you can to get sufficient sleep.

    4) Distract yourself. It may sound impossible because it sounds like you’re in a lot of pain but try to find an activity to distract yourself from the pain. Since your pain is so bad, you may be spending more time at home because you’re not up to your normal activities. Maybe you can watch something on TV that will take your mind off the pain at least a little bit. I am famous for borrowing DVDs from the library down the street. I hunt for comedies. We don’t have cable or dish so the library DVDs are my way of watching something funny that will help me through the rough times.

    These all may sound very insufficient. You may be thinking, “a DVD is not going to cut it, Jeanne. What I need is morphine. You don’t understand”. I have had endo for 27 years. I have numerous other conditions that cause severe chronic pain. Believe it or not, these simple (and cost-free) things can help.

    For long-term, I would highly recommend acupuncture. I cannot say enough about how much it has helped me. I wish I’d tried it sooner. (I’ve been going for 8+ years). I was afraid of the needles before I tried it but it doesn’t hurt. I should have tried it sooner!

    Endochick has tons of awesome posts and if you do search of her blog on what you’re looking for, it will pull up older posts that might be of interest to you. Endochick knows all about pain!

    I misunderstood and thought your appointment was sooner. I know Friday seems worlds away to you with such pain but it actually gives you time to prepare yourself for that appointment. The better prepared you are going in, the more you’ll get out of the appointment!

    As much as I wish I could make your pain go away, I can’t. However, if you try the ideas listed here (however simple they may sound), you might be surprised to find that they help somewhat. When it comes to pain management, every little bit helps. Any improvements you can make, anything that can even take the edge off is worth trying.

    Best of luck to you and I’m sure we’ll cross paths again. :)

    Jeanne

  13. Hi just an update from my post op awhile … after a 4 hr op most of my cysts are gone I did lose my right tube, but i had my 1st pain free period this month! Going to start IVF in a few months. If anyone is in Sydney Aust and is looking for a dr look up Dr Sam Soo in Westmead. He is great and will look after you and not treat you like a case study!
    I know I am not fixed for good but I am for awhile. Plus now at least I can try IVF.

    I hope your all going well.
    Ree

  14. Hello ladies.
    I just wanted to say how great I think this site is for the advice and support needed for endometriosis.

    I was diagnosed with endo earlier this year (at 23yrs old) after a whole year of excruciating cramps and painful intercourse. My doctor told me I had IBS and I believed that the whole year. After recording my diet and cutting out what I thought where problem foods (feeling no improvement), and a few trips to A+E, I decided to research myself. Thats when I read about endo. I decided to lay it on thick with my doctor just so that he would refere me to a gynocologist. It worked. Within a month the gynocolgist performed a laporoscopy. I had stage 3 endometriosis and the scare tissue had stuck my fallopian tube to my pelvic wall. Luckily my tube was freed. This has left a kink in my tube but I am still fertile. THANK GOD!!

    I now have the depo provera to stop the build of of the endomitrium. My only concern now is that this is starting to increase my weight. I was wondering what everyone else does to keep endo at bay? and also, what happens when i come off the depo to have kids? I know pregnancy is the best thing for it but what about once the baby is born? Back to birth control?

    I am also curious to know what happened to Jenny. What happened after your consultation??

    thanks again for this site xx

    • You are very welcome! Thanks for reading it, Chloe! I’m glad my writings on endometriosis can help other women like yourself. I’m not sure what happened to Jenny. Hopefully she will comment again and update us on what she found out.

  15. So, I have read most of the posts and I am in tears, I have had three surgeries the last year and half, I had two laprotomy’s to remove chocolate cysts, one being 12 cm and the other 8cm. I went to specialist after spec. and sent away feeling like a freak. This past May I found a director of IVF and ovarian issues and he did a laproscopic procedure and diag. me with endo. he said severe (didn’t state stage) and he found a cyst, nogels, adhesions, and my right ovary and right tube where completely covered with scar tissue. I am still having some pain and I am only 30 this started when I was 28 and I feel like it is not going to end. I once had a beautiful stomach, that now has a disgusting scar and is very bloated and feel terrible, does it get any better, and my husband and I would really like to have children! I am so frustrated with this!

  16. Dear Girls,
    I’m afraid I’m only adding to the stories, here with my own.

    I had painful periods from near the very begining when I was 12. Very painful: On day one every month I would be up in the night vomiting and being unable to leave the toilet. My then GP tried me on iron tablets, B6 and all manner of pain relief-one after the other -as though he didn’t dare give up and refer me. I was told it was something I’d grow out off.
    Years later i met a girl with endo. She told me to go back and get it check out again. I only wished I’d been more informed and understood the only route to a firm diagnosis was a laparoscopy- I didn’t- even with her advice.
    Further visits to different GP’s over the years resulted in me been given the pill, mefenamic acid, anti-inflammatories etc. Never was there a mention of a laparoscopic investigation. Whenever I expressed concern about endometriosis I was told- by numerous GPs- I would have more symptoms.
    At 38 I returned to my GP, now in a relationship and unable to get pregnant, I got referred. And guess what? …A huge endometrioma on my left ovary. I’m now recovering from laparoscopy where they removed two cysts, one 8cm, and have had reconstructive surgery on one ovary. I have many adhesions linking my bowel, bladder and uterus-which they couldn’t tackle.
    It is still uncertain if I will be able to concieve. But in the area I live in th UK I do not qualify for IVF from local PCTs as my partner has a child from a previous relationship and, come next month as I hit 39, I no longer qualify anyway. They will not take into account the length of time this has remained undiagnosed.
    Anyone esle been in a simiar situation and had…success?
    Geo

    • Oh Geo, I just want to reach over to the UK and hug you. I feel for you. I do. This age limit on baby making is disgusting. The drug companies and doctors should not be in charge of mommies becoming mother’s. I understand when it comes to an age when they must weight the safety of the mother, fine. But you are still at the age where carrying a child is safe! And it shouldn’t matter that your partner has biological children! That’s bullocks! Sometimes I wish I lived where you live, and then sometimes…

  17. Okay, so i’ve been having some problems, and a friend told me about this. Since i’ve started menstruating i’ve had extremely bad cramps, i would throw up and feel dizzy. Ever since i’ve been sexually active, it always hurt, way more than i know it ever should, almost unbearable at times. I have an extremely heavy period also. I always thought that was normal and I was unlucky so I started the pill a few years ago and it helped ease the cramping so I wouldn’t throw up and I would be able to function normally. But all of this cant just be a coincidence can it? The pain during sexual activity puts a strain in my relationship and i would very much like it to be fixed.. This is frustrating for me and i’m hoping i can figure out if this is what it is, the symptoms seem to be spot on. I cant think of anything that could possibly be causing this. Any thoughts?

    • Cheyenne,

      Hopefully you read this comment. I am not a doctor and seeing one should be your next step. See a good gynecologist and explain your symptoms. If you feel that endometriosis could be the culprit, ask for a laparoscopy. It took me a long time to get a doctor who would take my painful periods seriously enough to operate, and I even had an EXTENSIVE family history of the disease. Hopefully you won’t have as much trouble. Thankfully, more doctors are aware of the disease and now acknowledge that it’s not just a really bad, painful period. They do try to identify it early and treat it. Here’s to hoping you find out what’s going on soon and get some relief.

  18. hi i ave endro going through pain for the last 2yrs just wanted to know if i go surgery wil i go to menopause n wil i put on extra weight i am 37yrs, ave 2 kids and i am in kenya. instead of a surgery is there a medicine that can help??
    I would really appreciate any feedbacks… love this blogg

    u all are life savers!!
    thanks

    • Hi,

      It just depends on the surgery and the medicine. Laparoscopic surgery will not leave you in menopause, but a hysterectomy will. And some women have found many of the hormonal treatments used for endometriosis to cause a slight weight gain. Exercising and eating a healthy diet can help with this side effect and minimize it. Glad you enjoy the blog!

  19. Hi
    Thanks for the reply.. please advise me with something – i want to go through a laproscopy, but i am scared as the doctors here are insisting that they will give me medication for 6 months after the laproscopy which will lead to menopause, what should i do?? And they are also insisting that i should have injections on my stomach after the surgery, is it advisable?? plese advise me what should i do?? i dont know what stage i am in but have consistant pain evryday.

    thanks

  20. Hey Ladies,

    I am sitting here reading all your stories and trust me, my sympathy goes out to you all. But not only that I can also empathize with you as I feel that I am reading about my own experience. I have been having terrible menstrual pains since my very first period when I was 12 yrs. old, until now I’m 39 yrs. My Obs/Gyn. diagnosed me with endometriosis in year 2001 and it was at stage 3. Before then I have never heard of this term, hence u can imagine my level of shock and confusion. I have been married for 13 years now and i have a very, very supportive and caring husband. (Thank God for that.) otherwise my level of fear would be more intense.

    My endo is now at stage 4 and we still do not have any children. However, my Dr. is still trying to make that possible with surgeries and after-care medication. He has has also been very supportive of us in our desperation to conceive. So far, I have had one laparoscopy and one laparotomy. In fact I am presently recovering from the laparotomy, after my last ultrasound revealed 2 large cysts of 8cm each, one covering each ovary. these cysts were removed, thankfully, but not without one half of my right ovary being removed. However, my Dr. says that I could still conceive with one ovary so he has put me on Lucrin 3.7m injection for three months and ensures us that we still have a chance of conceiving after trying one month after my last injection. We are praying for this to happen, and be assured that I am personally praying for all you ladies on this blog and all the other ladies with endometriosis. This is a terrible disease and I believe that all ladies who are diagnosed should seek as much support as possible, this blog being one of them. Thank you for this.

  21. Hope everyone is well.

    I am not sure if I have endometriosis, but I had a laprascopy performed last week and I will get the results from Gynecologist next week. I have never had irregular periods nor any that hurt so much. I just took an aleve for the first day of my cycle and then didn’t take anything else. The flow was moderate and I never really felt week. As far as I can remember they have always been this way and come on time. Three months ago I was visiting my Dads farm. There were a few sick animals that I had held and given medication to. That night I had intense nausea. But that was all I had. I thought I had given myself an infection because of all days my hygiene that night had been bad. I might not have washed my hands properly while changing sanitary products, so thatgives you an idea.

    A few hours later I was nauseated. I went to my doctor who checked my white blood cell count. It was a little elevated and gave me amoxicillian. A week later I had lower abdomnial pain on my right side. So when I went to the ER they scanned everything. They said I had a cyst on my left ovaries and that one of my fallopian tubes had water in them. I stayed in the hospital for 5 days and my white blood cell count continued to rise till it was at 15,000. I had nausea, some pelvic pain (minor) and a little pulse of pain by my buttom. Nothing really to complain about. I had my Dad’s doctor and the general doctor of the hospital looking at me. The hospital doctor said I had a cyst on my left ovary and I had water in one of my fallopian tubes. He then asked me if I was active, which I said no. he didn’t believe me because every day that he was there he asked me if I had been active. I was majorly confused. I 23 years and I have never had intercourse before. On the 5th day I was at my breaking point, my white blood cell count finally fell to 11,000 and I was allowed to go home.

    After the hospital I was not my self. I was somewhat weak. I was never bed ridden. I walked around did stuff, but I felt week and then i started having a little pelvic pain than came and went as well as a few plses of pain around my bottom. Everytime I visited my doctor for tis and did a white blood cell count I had an elevated white blood cell count. Anout an 11,000 to 12,000. It always went away with antibiotics, but it kept coming back. i never took antiobiotcs for more than a week. I started seeing my Dads doctor because my previous doctor kept on giving me pelivc exams even though I was not sexually active. They couldn’t explain what was going on. So I finally went to my Dads doctor. I saw my gynecologist before I saw my Dads doctor. She had ordered an ultrasound a month after the hospital and it showed that the cyst had gone away but the fallopian tubes looked like they had water in them or they might have something on them. She wanted to see me in a few weeks.

    I went to see my Dad’s doctor and he looked at my report from the hospital. He knows me well so he knows that I am not active. He said that the report says hydrasalphinx, meaning that my tubes had water. But he believed that there was a cyst on the tubes and close to the ovaries. He said I should go ahead with a laparscopy. So I saw my gynecologist who decided a laparoscopy would be the best route. She said she needed to see what was going on inside. So a week ago I had a laparoscopy. There was infact a cyst on my tubes close to my ovaries. She removed it. This is where it gets confusing. My Momsis not sure what the Doc said but she said my pelvic organs were healthy but then she mentioned something about specs of something. I see her next week for a follow up so then I we will go over the report. But I know that the hospital doctor was wrong. I did not have a hydrasalphinx, I had a cyst by the ovaries that was close to the fallopian tubes that made it look like it was a hydrasalphinx. But the bouts of pain around the pelvic area and my but however mediocre they are I can’t explain. I also can’t explain the rise and fall of my wite blood cell count. I will ask my doc if I do have endometriosis, I pray that I don’t. But are these symptons.

    I have never had pelvic pain before, nor have I had irregular periods. I am currently on one and have not taken any meds. All of this began a few months ago. Is this typical for endo. Do you have a white blood cell count for endo and is the pelvic pain constant. Is it normal to have a little pelvic pain. I don’t understand, and I honeslty want answers. My gynecologist and Dad’s doctor are really good, but these are questions I have and I don’t really want to wait for next week. I mean is it even possible to have something else. By the way when I got out of the hospital I had a cough that turned into chest and back pains, that have almost receded. I was put on an albuterol machine for 5 minutes and that evening it felt like I had gained 97% of my strenght. But I was told I didn’t have asthma we weren’t given a prescription for it. Side info, I though you should know. Please, some give me answers.

  22. Seems like we all have stories without any answers! My last laparascopic surgery was on august 14th and now the doctor is telling me that i once again will have to have a hsg test, which i had 6 months ago. I am really getting sick and tired of being sick and tired.

    I can not have intercourse comfortably, can not get conceive , and the cramps and the pain all the time is just horrible. So, when I go for the hsg, (they think the right side is blocked) if it is then they have to remove it, because of the 2 large cysts 8 and 12 cm that have already been removed, and the amount of scar tissue and adhesions on the tube and ovary that have also been removed.

    My question is how many more times do i have to go get a procedure or surgery to still have the same amount of pain. This sucks and is making me so depressed. I also have gained 20 pounds and workout and nothing. I had a trainer for a while and i did not lose a single pound I have always been a thin and healthy women have always worked out and been active, and now I can not find the energy because i just cant get this weight off. someone please help me.

    lisamarie

  23. I know, this illness can really be depressing. I am also experiencing difficulty having intercourse without a lot of pain. it hurt so badly sometimes. of course, i have them before, during and after intercourse. therefore, you can understand why intercourse for me now is purely for my husband and not for “US” as is supposed to be. when i looked up all the symptoms of endo. i find that i have been experiencing all of them. Had it not been for God Himself, I’m sure i would be experiencing depression right now. i know that this is frustrating, but we can’t give up, we have to believe that prayer is still power and that Jesus is touched by all our infirmities since He was once in human flesh and experience pain and torture on the cross. Let’s just keep praying for each other.

    Re Krystal’s medical problems. I have never been told or ever read that my blood count and any other symtoms she described have no bearing on endo. However, i cannon say that it does not either, seeing that this illness is so mysterious anything is possible. I’m sorry that i have no answers for her, but i am equally curious to know the results of her tests.

  24. Hi,

    I am 28 years old and need some advice – I have always had heavy periods and intense unbearable pain during my periods – this did get better and more manageable over the years.

    Last month, I had sudden unbearable abdominal pain (during my ovulation time) and ended up in the ER – they couldnt diagnose it and suspected an appendicitis – they gave me pain killers which helped for a few hours but the pain came back with fever which reached 102.6 C and extreme abdominal pain and tenderness – I went to ER again. They again gave me pain shots – my white blood cell count reached 14000. They did an ultrasound and found that both my ovaries were enlarged and cystic, they then did a trans vaginal and said I most likely had endo.

    I met a gynae and she said I likely had a chocolate cyst rupture / leakage. Further ultrasounds revealed that I have 3 chocolate cysts (1 in one ovary and 2 in the other) – 2 of them are fairly large. She recommended laparoscopic surgery.

    Now, I and my husband do not want to have children. Second, except for this incident, the pain does not interfere with my life in a big way. Therefore, I would really want to avoid surgery and just do soem pain management when needed – I am prepared to live with the risk of another potential rupture. But what I dread is a surgery where one or both of my ovaries end up being removed (I have read about this happening to so many people because the cyst was too complex / big / attached to the ovary). Also, I have read about so many people whose endo and cysts come back after surgery and they need repeat surgery.

    Given the above, do you think its okay to not go for surgery if I do not want children but want to preserve my organs and am okay with just managing the pain? This is a very difficult decision for me and I do not want to undergo surgery unless its absolutely necessary – please help me – I have nt been able to think of much more for so long and have spent endless hours researching this.

    Thanks!

    • Madhvi,

      First, only you and your doctor can determine what is right for you in this case. As with any surgery, there are always risks and complications. That’s why it highly important that you talk everything out with your doctor and do your research. If you’re nervous, seek a second opinion. Take with you your ultrasound results and your concerns.

      But, what you must also consider – and why I’m sure your doctor is suggesting surgery – are the potential risks involved if one of those chocolate cysts continue to grow (which they most likely will) and then rupture. It can also get bigger and cause your ovary to twist. This would not only result in a surgery, but could result in an open laparotomy vs. a laparoscopy (which is a simple key hole surgery) and could have the potential for major internal damage to your pelvic organs. While these cysts may be small enough to go in and safely remove them now, waiting until later could result in the loss of an ovary and/or fallopian tube.

      I understand your fear towards surgery. Laparoscopies for endometriosis aren’t necessarily for the purpose of restoring the pelvic organs for baby making. The surgery is usually to restore the pelvic organs to a pre-endometriosis state. In your case, your ovaries have endometriomas on them. These endometriomas are large enough to threaten your health, and to warrant a doctors concern. Because adhesions will form every time the abdomen is formed and insides are messed with, doctors are hesitant to perform laparoscopies. Doctors are more likely to say a woman has “suspected endometriosis” and presrcibe birth control pills for years. So if your doctor is urging for an operation, chances are it’s warranted.

      I wish you luck and hope you get feeling better soon.

  25. Thanks endochick for the excellent, well thought out and well-balanced advice. I really mean it – its amazing that you take out so much time and effort to advise complete strangers and very touching too – thanks again – it means a lot.

    I have now decided to go for a laparoscopic surgery this saturday after consulting 4 doctors – one of my cyst is 6 cm in diameter (my right ovary cant be differentiated from it in the TVS) and the other is 8 cm (in the left ovary which has another small cyst).

    I am just hoping and praying that I do not lose an organ / or have loss in ovarian function post surgery since I am only 28 and dread going in HRT given its cancer risk and my family history.

    Will keep you updated.

    • Madhvi,

      That’s what I’m here for. Good luck with your surgery. I’m relieved to hear that you got a second, and third, and even fourth opinions! We need to hear all options so we can make an informed and educated decision. I’m here to help, and very happy to do so.

      Again, GOOD LUCK!!! Let me know how the surgery goes! My thoughts are with you!!!

    • Good luck with your surgery! My friend just had a large cyst removed and she is a bit sore but is doing fine. I wish you the best!

  26. Thanks again endochick! All I can say is that you are an amazing person and it feels very good reading what you say – I am overwhelmed by your support and a simple thing you said that you will keep me in your thoughts especially at this time. I sincerely wish you all the best in life – as I can see, you make such a big difference to so many people here! I am glad I came across your blog – will keep you updated after the surgery.

  27. Hello everyone. I am so sorry I haven’t been able to respond the comments left about my disappearance since this summer during my initial inquiry! :-)

    In July I was told that I could possibly have Endo. I ended up having a laproscopic exploratory procedure to investigate what was causing my pain. It ended up being appendicitis!

    After 2 trips to the ER in the summer due to pain and test results showing no signs of appendicitis I was turned away with pain meds! Finally I was referred to a surgeon who suggested the exploratory.

    I had the surgery on August 13th. I am a school teacher so I had to go to work on August 21st for back to school meetings. I was still in recovery-mode and think I may have returned too soon….

    Now I am back in the surgeon’s office with what he believes in an inguinal hernia and or Endo. He did check my reproductive organs for signs of scar tissue but did not find any during the first surgery. Is it possible that I may have it after all? Does and or can scar tissue go away on it’s own and return?

  28. Hi,

    Reading this has been inspiring, and provided the realisation that there are some much braver women than me! I feel like i’m cracking up!! I have had extremely painful, heavy, prolonged, irregular periods for the last 12 years. I have had a 6cm ovarian cyst and more recently cervical polyps. I have had severe pain in the right lower side of my abdomen come back time and time again, now my doc who has been very good (after rulling out infection, IBS etc,etc!) suspects endo. I’m 26 and have a cousin of 30 who has suffered immensely with this and due to a botched hystorectomy is on morphine every day. Whilst i want them to find an answer i’m scared of getting a rubbish doctor and ending up like my cousin, my horses are my life i couldn’t stand to be as physically impaired as she is. So my question is; is it sometimes better to carry on with the terrible pain i have or risk being another statistic of the failings of the NHS where i am in the UK?

    • Hi Kez

      i have also been diagnosed with endo and I have horses so I know what you mean. Go and get a laparoscopy. You will have referred pain for two days or so but should be able to drive after three days. Once that three days was gone I could do all the horse chores but stayed with lunging for about 7 days after that as I did not want to risk hitting the pommel of the saddle with my abdomen. If you can get a helper for a few days it shouldn’t have that much effect.

      For the pain. My doctor has suggested that when the pain gets too bad they do two things – first have alaparoscopy to get rid of what is already there (about a week or ten days recovery) then block hormone production from the pituatry gland. This puts you into chemical menopause so you shouldn’t get any more buildup. This seemed to me to be the least invasive procedure given that I am very active and can’t just stop. a hysterectomy is a worst case scenario situation i think. You can try progesterone tablest to blled them off first and regular laparoscopies to scrape it off as well. Talk to your doctor but do get a laparoscpy and get diagnosed.

  29. Just wanted to keep you updated endochick – I didnt have my surgery on Sat since I wasnt feeling completely comfortable with my surgeon. Have met with another surgeon for who endometriosis is a special area of interest and she specialises in laparoscopic procedures – now I am having the procedure next Monday – will let you know how it goes

  30. I am only 16 and i have endo. I am always in a lot of pain and i have been given birth control in order to control my endo.It always make me feel so sick. Im not really even sure if it is a very serious problem and the docs have made me feel kinda stupid about it.
    Any advice?

  31. Pingback: 16 with endometriosis: a reply « Endometriosis: the silent life sentence

  32. I finally had my surgery on Monday, 30th November. It went on to be a 3 hour surgery because I had 2 chocolate cysts – one in each ovary (8cm X 8cm and 7cm X 7cm) and a follicular cyst and extensive adhesions (my ovaries were stuck to each other, then together to the uterus and then to the lower end of my bowel).

    They were able to strip away the cyst on the left ovary but could only drain and fulgurate the one on the right (to prevent damaging healthy tissue). I ended up spending 2 nights in the hospital but am back home now and feel perfectly fine. Have to meet my doc for post op now and have decided that I will not go for Lupron or progesterone shots. Most likely will have to be on oral progesterone – please let me know if any of you have had any experiences with it.

    Once again, want to thank all of you, especially endochick for this amazing forum – I got so much info and support from here. Thank you!

    • Madhvi,

      I have been wondering how your surgery went. I am glad they were able to get everything addressed. 3 hour surgery. Oh my! I hope you are taking this recovery time to rest, pamper your body and spirit, and help your body to heal. I’m so happy the operation went smoothly and you are on the way now to hopefully feeling much better. Endometriosis is a long and tough battle, a chronic marathon through lava, but there are lulls of peace and calm and this is one of them for you. Take it and savor it while you can. :-)

  33. Madhvi,

    Endochick is so correct about the importance of resting and recuperating following surgery (especially one as involved as yours). Sending positive energy your way!! :)

    Jeanne

  34. I am happy that your surgery went so well. Congratulations! I am also glad that you look at rest and recuperation as being very important with this surgery. I am now seeing that I apparently have not been taking it as easy as I should have. My surgery in September lasted 8 hours and I think that I have been doing too much, hence I’m now having pain at nights.I am now on Lucrin 3.75 mg. for 3 months and got my last shot on Dec. 3. This is supposed to suppress the hormones and clear up any remaining lesions that still remains.This injection is quite an interesting one, though. I had so many side effects with it that it is just too much to mention. It tends to literally take over your life pretty much, as you have to move and behave as it allows you to. I much say that intense hot flushes is its main hallmark, as you have them night and day. Insomnia and decreased libido were other strong effects it brought on. Overall, I experienced 90% of the total side effects that it brought on. Therefore, you can imagine how very happy i was after receiving the last one. My doctor assures me though, that with the next move of getting another medication to bring on ovulation I should be able to conceive, so I am praying for this to work as I am still very hopeful about this.

  35. i am 19 and is severley suffering from endometris a university student and is contemplating wat is the possible and best solution. i am extremely stressed. i really don’t know wat to do

  36. I’ve Just read through all the posts and I find the whole thing very interesting. I have been suffering for the last 18 months with low abdominal pain on my left. It usually starts around ovulation and can then last a few days or sometimes for a few weeks. The pain is felt when pressing on my tummy or when changing position from standing to sitting or leaning and stretching. I also feel it when picking up my three year old and when lifting my left leg up to put on a shoe or get in the car. If I am sat still of an evening or when sleeping at night, I don’t feel any pain. It is less usual for me to get the pain when I have my period although it has happened once or twice. I also occasionally get pelvic pain which is dull and achy. I have no pain during intercourse and can also go for months with no pain at all. I’ve been looking on this site now due to suffering pain for the last week after not suffering since August.
    I’ve been to see my doctor on numerous occasions and never really gotten any answers. I have had a scan on my ovaries which came back as fine. Just wondered if anyone had any opinions on any of my information.

  37. I just had the NovaSure procedure done for my endo. Has anyone had any experience with this surgery? I am only 36 and didn’t want my ovaries removed yet, so I chose to give this a try.

    • I have no experience with the NovaSure surgery, but perhaps someone reading this blog will and will comment. Good luck in your recovery and I hope it helps.

  38. Hello all!

    I am a 24 year old girl living in California. For the last two years I have been stricken with periodic crippling pain in my lower abdomen. i thought perhaps it was IBS or some other gastrointestinal affliction, as I occasionally had blood in my stool. All of my doctors were dismissive when I told them of the pain (it was so bad, it once took me to the floor in the cereal aisle at the grocery store), and ignored it. Then, this September, I was diagnosed with Polycystic Ovarian Syndrome, and thought maybe that was the origin of my lower abdominal pain. I have been on birth control (NuvaRing) since. For the past two weeks I have been in excruciating pain (10 out of 10 on a pain scale, which I have NEVER had before even with a completely ruptured knee ligament) in my uterine area, middle abdomen and back. I have also had some blood in my stool (I do have a history of internal hemorrhoids), and intensified pain with pushing during a bowel movement or urination. I also have a bloated stomach (I look about four months pregnant), and my periods have been irregular for about four years. The pain also went OFF THE CHARTS after recent intercourse with a new boyfriend who I’m sure, after seeing me writhing in pain and crying, will never touch me again (joke). It felt like there was a little person in my uterus trying to pry it apart to get out. The pain was shredding, stabbing, violent pain.

    My mother (a nurse with 26 years of experience) and I (a pre-med student) decided that it was pretty likely that I was suffering from endo (she has a history of endo too). I am TERRIFIED that I will never be able to have children, which is INCREDIBLY important to me. I have an urgent care appointment with my gynecologist on Friday to discuss my beliefs and I am scared to death that between the (possible) endo, the PCOS, and another autoimmune condition (Hashimoto’s thyroiditis) that I will not be able to conceive in the future. Any advice, stories, or words of wisdom would be greatly appreciated as I am beside myself.

    Thanks in advance!

    Warmest regards,
    Lindsay

    • Lindsay,

      First, take a breathe. OK? Now, wait to jump to conclusions until you talk with the doctor, the tests have come in and you know the answers. Endometriosis has a common link, at least it did for me. Since your mother has it, I would mention that your doctor.

      Once you know, you can know how to handle it. As for the hashimoto’s. I, too, have it and endometriosis and was told I wouldn’t have kids. I was given a period to try and have kids and was unable to. I thought “wonderful, I’m a failure!” but then I got pregnant not once but twice. You never know. But please make sure your doc gets in there and gets a good look and takes care of any lesions while you can!! Get some good treatment now so that when it comes time to make babies, you organs may be in a condition to perform.

      • Thanks so much for your advice, it helped calm me down! =) I will let you know what the doctor says tomorrow!

      • Good luck, Lindsay! And thanks for reading :)

      • Hey Endochick!

        So the gyno did a transvaginal u/s and found that I had a recently ruptured ovarian cyst, and a 1-inch intact cyst on my other ovary. She told me to continue on my birth control and if I was still in pain in 7 weeks we would discuss doing a lap. So kind of disappointing, but I will keep you posted…

        -Lindsay

  39. Hi, my name is Shannon and I am 24 yrs old. I have had crippling menstrual cramps since I started my period at 13. It was so bad at times, in school I would be throwing up and my sister literally had to drag me through the halls of the school because I couldnt move. When I was 20 (April 2006) I had surgery done and was told I have endometriosis. My doctor never really told me what stage it was, but I could tell from her expressions (and from the pictures) it was pretty bad. She was confident however that I would still be able to conceive. She said one tube was completly blocked, but that my other tube was fine. Almost 5 years later and my boyfriend and I have still not conceived. It is the only thing I have ever wanted in life is to be a mother. I have since seen a fertility specialist who is also pretty confident. I on the other hand am not after all these disappointing years. I know I am still young but the longer I wait the more my chances diminish. I will be getting married in June and after that I am going to try and have the surgery one more time before having to turn to fertility treatments. Hopefully it will work this time (I will be going to a specialist this time around)!!!

    P.S. I also have had very painful intercourse since the beginning…The doctor who did my surgery told me that most people with endo also have interstitial cycstitis (sorry if its not spelled correctly) anyway she went ahead and tested me for that during my surgery and sure enough I had it. I was told that was probably where most of the pain was coming from during intercourse. I was given bladder treatments (horrible i dont recommend it) and that didnt work (they put a catheter in and insert fluid that is supposed to help build the damaged lining of the bladder). However, I was then prescribed the only drug on the market for ic and I am here to tell you it has been a MIRACLE drug for me. I no longer have any pain during intercourse. I quit taking the drug since because it is really expensive (300.00 monthly with no insurance) but I still dont have any pain and it has been almost a year since I quit. *drug name edit out*

    • Hi Shannon,
      I just came across this sight while searching “stage 4 endo”. I’m not new to the tribulations of the disease. I know that yours was not a recent post, but I feel compelled to respond. In hindsight, I probably had endo even during my pre-teen years, age 11, when I started my period. I always had horrendously heavy and painful cycles, putting me in the floor with my head in the toilet, and eventually to bed in a fetal position. Of course, that was the early 70’s…I only heard “endometriosis” in 1993 @ age 32. I had seen more doctors than I could count, endured extensive (and expensive) tests, and basically remained in a fetal position starting to believe what they told me. Perhaps I was “crazy”. Perhaps it was “psychological”. My OB/GYN of 12 years had told me that I needed a glass of wine nightly to RELAX, and suggested I do “visualization exercises” to SEE my way to wellness. I’ll fast forward from him, as I left his office in tears for the last time in 1992. By the summer of 1993, I had been diagnosed with endometriosis, which I knew nothing about. Keep in mind, I did not have the technological resources that we now have. I endured a botched LAVH, followed by LAVO to remove ovaries and tubes. I was in and out of the hospital for the next year until a 100 mile ambulance ride to the nearest major hospital. I was in excruciating pain, ultimately liver failure. I was seen by a nationally renowned Oncologist who referred me to OSHNERS MEDICAL research facility in NOLA, because he feared liver cancer. Within the week, I was diagnosed with Stage 4 Endo (lesions were blocking the common bile duct of my liver) and sent back to the cancer center for major surgery. The oncologist, Dr. Richard Boronow, performed open abdominal surgery from my breast bone to my pubic bone. He said that I had the worst case he had seen in his career, describing the endo as a “shotgun blast” to my abdominal cavity. He said he touched every organ to remove the mutant lesions. He was unable to remove it all, because it was too extensive. I was unable to take HRT, because of it “feeding” the endo. I took Megace for several years to supress the growth of the remaining endo. I finally could no longer endure, so he allowed me to try “compounded HRT”, now known as “bio-identical” harmones. The side effects were unbearable, and the pain returned with a vengeance. FOOTNOTE: Intercourse had ALWAYS been painful, before becoming impossibly painful, then just impossible. In 1994 I found out that my husband was having sex with other women. (of course “it was my fault…because I wouldn’t have sex with him”) We separated in the midst of my physical and psychological hell. I have never recovered from either. Even though we reconciled through extensive marital counseling through our pastor, my heart never healed. We’ve been together since I was 15 (36 years). He is the only man I’ve ever had intercourse with. It was ALWAYS painful. We’ve not even attempted it since 1997. It’s far too torturous for me. Through the grace of God, we have survived, though not thrived…nor will I ever do so again. Endometriosis continues to “shadow” my every function, from extreme pelvic/vaginal/rectal pain to chronic constipation, hemorrhoids requiring 2 surgeries, several more cancer scares, and of course all of the psychological issues. I’m feeling very hopeless as I await yet another appointment with a urologist tomorrow. I’m experiencing kidney/flank pain and UT problems (more than MY normal) since October. My GP of 2 years is apathetic towards this symptom, as with pretty much my entire medical history. After 3 rounds of Bactrim for a possible UTI, I called the urologist who FIRST said the word endometriosis to me 1n 1993. I’m hopeful he can at least check out my UT before the endo reclaims my kidneys and bladder. I’m at yet another crossroad, as my GYN/ONC and my GP of 25+ years both retired last year. I NEED a new doctor to help me to manage my issues, but I can’t find one. I was trolling the internet this morning in a futile attempt when I found “Endochick” website. When I read your post, I thought “Wait! Here’s someone who’s found a way to have intercourse without torture. Is that possible, when a mere pelvic exam leaves me writhing in gutteral screams?” You said you found a treatment that aleviated your pain during intercourse. I then noted the date of your post, so I know I’m too late. I was neutered in 1993. I have no sexual desire. I just hurt and I suffer. I can’t imagine allowing yet another “probe” enter my vagina, when it hurts just to tinkle and the skin often tears when I wipe. I constantly feel that I am being violated with a serrated edge knife in my vagina and my rectum, both canals of which were consumed by a freakish mass of endo. My belly from my naval to my pubic bone is bloated and painful 90% of the time. I can’t eat. I can’t sleep. I can’t poop. I seriously need help. I saw a FEMALE gendered GYN/ONC last year at a major “women’s hospital” who, once again, took me reeling back to my post-diagnosis days. She said the CT revealed no masses, and she thought I should seek PM. I’ve had to be my own health advocate since my epiphany in 1993-1994. I KNOW that pelvic exams, scans and colonoscopy exams don’t necessarily reveal the most hardcore cases of this hideous disease. She should have been more proactive, too, considering she specializes in GYN cancers. She was more interested in what my husband had to say. She seemed “intrigued” that a man was more concerned for his wife’s well-being than for his own sexual needs. I was offended on so many levels, as I thought perhaps a WOMAN DOCTOR would understand me. I’ve pretty much given up after 2 nervous breakdowns in 28 years, and what seems like a lifetime of fighting for my survival. I don’t expect a miracle. I would be content with simply “possible”. Thank you for listening. I apologize for rambling, but believe it or not, this is the edited version. Perhaps I should delete. Oh, how I wish I could delete this curse called endometriosis that we women have to endure.

      • Oh, Kathy, reading this made my tear up. Your words reminded me of my own mom. She had a hysterectomy at an early age due to endometriosis and experiences problems to this day. I wish more doctors understood both the PHYSICAL AND EMOTIONAL ramifications of their actions.

      • Thank you so much. I’m intrigued, but confused about “endochick”. I couldn’t help but grin when I saw it! :-)Back in the day…You know, when phones had cords…It requires a freakishly dark sense of humor to live my life…I used to say that “somehow, some way I need to shout this from the rooftops to save other girls/women from not only the heartache of this disease, but the degradation of assinine doctors”. I’ve not done so, for various reasons, not the least of which, was shame. When I saw “endochick”, I thought “WOW, kudos to you!”

      • Kathy,

        My heart breaks for you!!! I am 33 and I too have stage 4 endo. After years of suffering much like you (fetal position etc.) I had a LAVH less than a year ago (leaving only my right ovary to prolong menopause). I am thankful that after years of unsuccessful attempts I was blessed with an amazing baby boy. My second pregnancy was not so good. I lost my baby at 20 weeks and had to deliver him. I’ve read the endometriosis can cause miscarriages however it has not been medically proven.

        After my hysterectomy I had a follow up with my OBGYN and he apologized, he said, now I understand how much pain you were in. He had always said we don’t want the endo to spread to my uterine walls … which it had and was not diagnosed until after my surgery because there is no way to see in the uterine walls without it being removed. The fancy name for that is Myometrium Adenomyosis. He also said that having MA in a few spots is painful in itself however mine had spread everywhere. I also had several Leiomyomas (fibroid tumors) in my unterine walls as well.

        In my early 20’s I had been diagnosed with Dyspareunia (pain during intercourse) so I can empathize with you. When it came time for my exams (which was every 3 to 4 months) since I was 16 years old; I cried…I clutched the table and cried. Ever since I was 16 I consistently had cysts on my ovaries. I had to go for monthly ultrasounds for almost a year. They would burst and the next ultrasound I would walk in and say … its on my right ovary …or its on my left …or I think its on both. Even though most women never even have symptoms, I did … 10 fold. My first OBGYN was going to do a hysterectomy at 18 (he also mis-diagnosed me with varicose veins on my uterus at 16 after my 1st diagnostic laparoscopy). I am thankful that I found a second opinion otherwise I would not have my beautiful miracle.

        Of course the LAVH was not a “cure” however it has helped a lot. My endo had spread everywhere (like you). Often have issues with bowels and other pain and still have my right ovary which too is affected by endo, however the areas with the most severe endo is gone….

        Back to you … again, my heart goes out to you!!! I am happy that you and your husband were able to stay together. You will never forget … however if you forgive … you have to truly forgive with all your heart! Hopefully I am not being too personal .. maybe you can find other ways to bring the passion in your life (can’t give suggestions on this site.) I know as a woman … one of the worst feelings in the world is not being able to fulfill our partners desires. And they can’t even begin to sympathize or empathize with us because they have no idea the pain that is felt during intercourse and often feel as if we are giving them an excuse, or we’re not attracted to them, and the worst … being accused of cheating on them because we are not having sex with them.

        Even though I don’t know you…your story made me feel as if I do.

        HUGS!!!!

        Best Wishes,

        Rachael Gilmore

    • My name is Kathy. Earlier today I clicked on “leave a reply” for Shannon’s comments. I poured out my heart and soul. I saw it instantly underneath her post, “waiting for….” Did it get deleted? If so, why?

      • Thank you. I’ve not posted here before, so I don’t know the procedure. After I realized the date of Shannon’s post, I wish I had just posted in general on this endo website. Perhaps someone would have input.

      • No problem! A lot of people land on that old post and think this blog is a forum. They post there and get upset when people don’t reply. I try to get to comments on a daily basis, but don’t always get to them as they come in.

      • Hi, again. If I posted on an old sight, will it not be seen by anyone now? I now know what “newby” means. I feel stupid, but I want to finally open up where others can either help or be helped. Thanks.

      • Kathy – this isn’t an old site, just an older post. Most of the people who have commented click follow post. This way, when someone comments they get an email and can follow up on it and reply if they want. I have no control over who does this, though, so it is best to keep questions or comments on this thread very general and not directed at one person. If you have a specific question that I feel others may benefit from, I can always make it an “Ask Endochick” post too.

      • Kathy – Hi! I hadn’t approved the comment. I moderated comments on this blog. And I don’t always get to them on a daily basis. I replied to your comment since I don’t know if Shannon will see it. Unless she’s subscribed to get e-mails to that thread (which not everyone is giving how old the post is) then she won’t see it. Thanks for commenting and reading. Please visit my other posts. If you go to the search box and type “endometriosis” a slew of posts will pop up. – E

  40. Hello, My name is Crystal I have been experiencing extreme pains since the age of 17 im going onto the age of 21 here in march.. I haven’t been able to fully live a happy life… My life has been joined with pain and also suffering… It started at 17 my pains were extreme cramps, i wasn’t seen into a doctor until I was 18. at the age of 18 I went threw different tests blood work pap smear’s more blood work more pap smear’s it got to the point where in less than 4 months i’ve had over 20 paps and alot of blood drawn, I dont even want to get a pap.. it scares me… doctors didn’t understand why i was having severe pains so they ordered me a CT, nothing showed there but still the pains were there.. they prescribed me Darvecets “sorry spelling is a little off”, Vicodens , naprosens, … it just gets ridiculous with the amount of drugs i was on (just for the pain).. at the age of 19 I was admitted into surgery.. Exploratory search surgery is what i was told… the results came back and i was told I have two ovarian cysts… trying to pin point it i could see why i was having pains.. I thought my questions were answered… but they told me they wern’t able to do anything for me… so continuing to take medications for the pain i just stopped going and stopped taking medications all together, NO body can help me.. every door i knock on they open and slam it in my face… November of 2009 I was rushed the the emergency room, I could not walk I was bent over in pain with tears flowing.. My stomach felt like something was trying to rip its way out.. My lower back was very uncomfortable, and i felt everything worse then regular… on an every day base my pain ranges from 4-7 from what i could handle.. and i was rushed to the emergency room because i couldn’t deal with this pain… they treated my pain and gave me another CT he wanted to see if it was my kidney stones.. the doctor had other guess’s to my pain… I then let him know i was diagnosed with two ovarian cysts.. coming back from my CT he told me everything looked fine.. “SO where is this pain coming from?” he told me there was no ovarian cysts.. and i stood there ready to cry… ready to scream more than cry… so he gave me anti inflammatory medicine and told me to follow up with an OB/GYN. I did so and at the clinci he gave me a pelvic exam and attempted to give me a pap smear. he wasn’t able to give me a proper pap because it caused me way to much pain and went ahead with the physical.. after i was dressed and so uncomfortable me and my boyfriend phil sat in his office while he told us the news.. “there is nothing I can do for you, you have a hernia. you need to see a surgeon.” he wrote me another medication and sent me on my way… at this time I feel all hope is gone, no one will help me no one will take time in helping me.. i need help and im suffering please make it stop hurting… so i leave it alone and try my best to go day by day.. for the last 4 days 3 nights… I cant sleep for more than 2 hours waking up in tears.. Im in constant pain in my lower… it hurts to do ANYTHING.. to walk to sit to talk.. to move any muscle in my stomach i am in pain.. My boyfriend called the ambulance i wasn’t able to move today… my body locked up stiff.. i was scared for the first time… they took more blood and gave me medicines to lower the pain.. but the medicine never helped i was laying on that bed for 8 hours crying in pain.. begging for help… they cant help me… and now the doctor tells me it could be endometriosis, he said he’s not diagnosis. but for me too talk to my family doctor… my only fear is they will keep giving me medications for the same pain i’ve been having since i was only 17.. im almost 21 and im still seeking help for the same pains… im constantly racking up medical bills for the same pain.. My mother had endometriosis in 2008 and had a hysterectomy done April 15, 2009 my mother also told me her sister (my aunt) had endometriosis at a younger age.. if im not mistaking i believe she was 32 when she had her hysterectomy.. thank you for reading.. and i wish the best of luck for anyone going threw the same or any kind of pain.

  41. Am Phannie am 29 years have been diagnosed with stage 4 endo.My uterus,ovaries and tubes are all stuck together.I have bilateral endometrioma with the rigth one measuring about 4cm /4cm and the left one about 3cm /4cm/I have been living with this disease fir the past 5 years and have been through 3 surgeries already .Right now am am having difficulty getting pregnant.

  42. Hi to all you amazing people :)

    Just reading all of your stories makes my pain worse! I think you are all so strong to put up with what you have to do to get through day to day life. I am fortunate enough at this time to only get severe pain for a few days each month but I haven’t been officially diagnosed with endo. All of my symptoms seem to fit but as I work in a pharmacy I understand there may be many things that can cause this kind of pain. I have been to the ER twice now and for blood, urine, MRI ultrasounds, xrays etc but all have had varying results. Anything from adhesions to cysts on my ovaries left and right, and hydrosalpinx have also been mentioned. My most recent visit showed a cyst on my right ovary and no fluid in my tubes any more so my left one may have ruptured but they can’t be sure.

    I have an appointment to see my Gyno next tuesday who will be able to give me more info but I’m not in a position to pay $2000 to have the laparoscopy so I am also on the public hospital waiting list here in australia. :/ Although my pain is quite debilitating when I have it, I also understand I’m not the only one with this condition and I’m lucky to not have the pain on a daily basis. I do feel it when I work too hard and pull my stomach in a strange position at work etc but it doesn’t last long when it happens that way.

    Well I won’t bore you with the details as I really just wanted to give my support to all of you and let you know that there are plenty of people out there who really understand the sort of pain you go through. I think most people are underestimated by the severity of the pain but it’s not something that can be judged by appearances etc. Just remember to look after yourself but nurturing your body and realising your capabilities. There are not many others out there who will truly know what you are going through so just trust your own instincts and know your limits.

    Thank you to you all also for making me realise that I can have a normal life because there are ways to reduce the discomfort and the pain. I will be visiting this blog regularly and I will let you know how my appointment goes with my specialist next week :)

  43. I’m new to this wonderful place where know one is telling me it’s in my head….As I read your posts of pain I realize that yes I’m really in pain and no matter how much everyone want’s me to stop with the crying I can’t when I’m in pain…My family says You always tell us you have pain…what do you want us to do….It’s nothing new! Get over it!
    I feel so much better and I feel validated…Thank you all for sharing your stories…I am reading them all and will offer my endo experiences so others don’t have to suffer the same indignation I’ve felt, being told it’s all in my head….
    Sincerely,
    Michelle

    • Michelle, I was told by my doctors that I was crazy and I was not allowed to go back to the clinic until I had a psychiatric evaluation. That was extremely depressing and hard for me. I went, and after the first 5 minutes, the doctor said I was totally fine.

      As hard as it is sometimes, I just have to keep my mouth shut and act happy. My family is tired of me always saying I am in pain, but at least now they understand.

      It’s not in your head and you need to keep finding a doctor until one DOES help. It took me 15 years just to finally get diagnosed! I have PCOS, Endo Stage 3, and PAD (Pelvic Adhesion Disease). I also have chronic pelvic pain associated with all of this. Not to mention the very painful sex and tremendous stress on my marriage.

      I had my 2nd laparoscopy July 14, 2010 and my post-op apt is August 9, 2010. I will be asking for a full hysterectomy.

  44. hi everyone. im 21 and was diagnosed with endo 3 years ago, had my first surgery 2 years ago. im told i have stage 2-3 endo. my problem is that my pain has kept me in my bed for the past year, and i cant find a single doctor to listen to me. i live in a small town in arizona, and have gone to every gyno in town. im in the er a couple times a month now, and still after being diagnosed im getting no help. i have a the lowest insurance you can have, so the surgeons ive tried seeing just keep turning me down. and the first surgery i had, the doctor was absolutly horrible. he barely even knew what endo was. all the while i wait for help the problem gets worse. i havent had a period in years, and ive been trying to get pregnant for over a year now, with the fear that im too late. i could just really use some support from anyone who knows what im going threw. any feedback would be very appriciated!

  45. Hi All,

    I was diagnosed with endo when I was 19 (now 23). I have surgery nearly once a year & it grows back every time. I’m on depo provera for treatment. I have just taken out private health cover but can’t go through the private system for a year, so once again on the public waiting list. Get very frustrated with the Mater Hospital as they always lose my paperwork. Cairns Base now refusing to operate on me anymore as they don’t have the specialists required to remove endo from the bowel.

    I’ve been receiving chrio appointments since december 09 & have started a healthy food plan with my chriropractor which I have found incredibly beneficial. I’ve cut out potato, bread, rice, pasta & most preservatives & junk food (sometimes hard to give up chocolate so as a treat no more than once a week I have 2 squares of dark, 72% or higher cocoa chocolate. I have a salad for lunch everyday, omellette for breakfast & meat & vegies for dinner. I allow myself 2 gingernut biscuits a day, and when I crave sweets have a coffee or handful of raw macadamia’s and almonds. I have 5mls of fish oil everyday & it really does help. Green tea helps me heaps – used to hate it, make myself have it now. Not sure if anyone is in the same boat, but I used to be dairy intollerant, now I’ve cut out all this stuff I can drink goats milk & eat eggs :) I avoid pork and fatty stuff. i know it sounds bland & at first it’s very hard to stick to, but it really does help.

    Have had a lot of constipation issues. At first was diagnosed with IBS & put on colfac – no good. I’ve also had my gal bladder removed (runs in family) & had MRI’s (MS also runs in family but I don’t have it)etc. I’m sure most of you have been through the hurdles of other tests they sometimes put you through before a laparoscopy. To help constipation, walking 30mins a day or just plane exercise, doesn’t have to be intense. I also have a quarter of a teaspoon of blackmore’s ‘colon care’ it’s the only thing that’s ever really worked but make sure you drink at least 2 litres of water a day with it.

    Despite all this I still get severe pain for approx 3days, every 2 weeks. I take strong painkillers for this – digesic & panodol have had the least side-effects for me, including less constipation than other pain killers. My other best friend is my hot water bottle. Work is great & really understanding. I can sit at my desk & do my paperwork with my hot waterbottle – being able to work with the pain is great because it’s a distraction – one of the reason’s I’m so glad I got into Business. December 09 I was diagnosed via a CT Scan with cysts on both my ovaries – nothing like this has ever shown up. The docs aren’t convinced it’s poly-cycstic ovaries. Has anyone ever experienced something like this after having been diagnosed for several years? Could it be a big mound of scar tissue or heaps of endometriosis or do you think it’s definitely cysts of some sort?

    Sorry to keep rattling on, I hope this helps someone, and I hope someone can please help me with my queries. Good luck to all you gals out there with pain management. And make sure your man looks after you as mine has done since day one!

    Erin

    • Erin – it sounds like you are really doing the best you can with diet and exercise and using the medical system as best you can. I feel so bad for you and you are so young doing all this, but at least you are getting somewhere. It took me almost 10 years to get to the point where you are.

      I have PCOS and it was only diagnosed after I had not had a menstrual cycle for 3 years, even on birth control and taking progesterone. I never bled. The only fix that the doctor had at the time was to put me on an IUD, but it made all my other symptoms worse.

      Cysts come and go and some pop or twist. The pelvic pain you are having is probably due to that, but there really isn’t a whole lot to do about it without permanently removing your ovaries. I’ve tried everything – diet, exercise, pain pills, every birth control, etc… and it either didn’t do anything or it made it worse.

      I have never been diagnosed with IBS, but I know I have it. I am constantly constipated and have trouble with bloating. Changing my diet has helped and I eat very healthy, but it’s still not working.

      Just take one day at a time and keep seeking medical treatment!

  46. I just turned 30 last month. My pain started when I was 13 or 14. I didn’t start my period until I turned 15. I have ALWAYS had a pain in my left side and after numerous trips to the ER and doctors, they all told me that “nothing is wrong, you are seeking attention, you are a young girl with hormones,” etc…It was very frustrating. I would be doubled-over in pain and no one did anything. By the time I was 17, my mom was so frustrated, she took me to every doctor that she could. I had a colonoscopy but that revealed nothing and the doctor told her that I was making it up and could not be in so much pain.

    I married at 20 but sex was excruciating. It felt as if I was having sex with a knife, then when it was over, someone poured acid and salt on me and then lit me on fire. I was put on every pain pill imaginable, with no relief, including birth control – the pill, the ring, IUD, etc…

    Luckily, I was able to get pregnant, and everything went perfect. After my son was born, I saw every doctor imaginable in my area that insurance would cover and they all said that nothing was wrong. One doctor had the nerve to tell me that I am not “sexy” enough and told me to masturbate, watch porno movies, dress sexier, use more lubricant, and wear lingerie under my regular clothes. He also prescribed lidocaine cream for me, which numbs me for about 5-10 minutes – just long enough for my husband to have sex and me to not feel it.

    Fast forward about 4 more years and the doctor put me on estrogen cream. He said my skin is too thin and my muscles are weak, so I just need to build them up. The side effects of that were so great I had to stop it after about a week.

    Fast forward 2 more years. I had seen every doctor in the medical hospital and all of them said nothing was wrong. One doctor, after me filing a complaint against the medical group and her, did a laparoscopy. She said she found nothing (although prior tests and ultrasounds showed that I had cysts). The last doctor I saw said that I am not allowed to come back to the clinic until I’ve had a psychiatric evaluation. Not only was that depressing, it was humiliating! I saw the psychiatrist and she said nothing was mentally wrong and go back to the doctor. I saw a new doctor that ordered an MRI and sure enough, she found cysts. She recommended me to get the Mirena IUD and use more lube for sex.

    I got the IUD and within 4-5 months, I gained 40 pounds. It was painful – I could feel the IUD, I had constant cramps, pain, bleeding, blood clots, etc…everything bad that could happen, did. I had it removed after 2 years because I had to find a doctor that would do it! She diagnosed me with PCOS.

    May 2010, I had the IUD removed and a bunch of blood tests and a pelvic ultrasound and transvaginal ultrasound. The doctor told me I had cysts. He also said that my CA125 blood test was elevated. He said that I had endometriosis. I could not believe that because my whole life (last 15 years) I’ve been told that I do NOT have anything wrong. He said that he wants to do another laparoscopy.

    July 14, 2010 I had my 2nd laparoscopy and he found that I have Stage 3 Endometriosis, PAD (Pelvic Adhesion Disease) and many cysts. I have my follow up appointment on August 9, 2010.

    For the past 15 years, my symptoms have been: painful sex, NO period (I have not had a cycle since 2004), cramping ALL the time, bloating, pelvic pain, cysts.

    I am going to ask for a full hysterectomy. I know that it may not ultimately “cure” me of all my problems, I certainly believe it will cure me of a lot of them. Then, if at that time I have more problems, at least everything “female” related can be eliminated!

    As long as all of my problems are related to PCOS and endometriosis, then I should be “cured” with the hysterectomy. If the painful sex is due to Vulvodynia, then I have a long way to go still.

    For all who left a comment here and are not getting help – it may take a while, but you have to keep going to every doctor you can and see specialists – not regular OBGYNs.

    I’m still in denial that I do have Endo Stage 3 and PAD, but at least now I have something to go off of. At the same time, I am SO angry that it has taken this long for ONE doctor to take the time to actually care and help me.

  47. Hello,

    I have read and shared numerous stories with all of you. I will now share my story and hope it helps everyone. I believe my started when i was young very young when i was in first grade i started haven very bad headaches when to the eye doctor 20 20 vision, went and had two catscans since they thought i might of had tumors everything came back fine. So the years passed and when i started my period at age 12 it was bad always, painful could hardly move last 7days. most of my friends only lasted 4 but not mine heavy and 7 days. When i was a senior in high school i actually missed the day that i was suppose to take the sats because i woke up in the middle of the night in a fetal position in severe pain in my abdominal area that lasted for two days. (this was when i had a cyst and it broke) then when i became sexually active it was painful very painful everytime and alot of the time more painful like 3 hrs after. The whole time my family doctor said it was all normal signs of your period. so i didn’t go anywhere or do anything i just though that i was unlucky to have such bad pain. when i was 21 years old i moved away and went to visit an aunt and the same thing that happened when i was a senior happened again woke up in the middle of the night in the fetal position in severe pain and was in pain in the abdominal area for two days. i was so sore i couldn’t even touch my stomach on the outside and again a cyst had bursted. but the pain always went away with the periods except with the pain during sex. so i delt with it, i took a hole bottle and a half in 7 days of premycin for cramps that was the only thing that helped and i believe it helped cause it put me to sleep. So now im 23 and married and trying to have a baby no luck. Went to the gyno and tried many thing and the whole while im very very moody and this caused extreme stress on the marriage and got divorced. Never finding the reason why I couldn’t get pregnant. Then met the most wonderful man in the world and got married again and started to try for children again. No time during all these years and all this pain did anyone mention endo….never had a clue or mention of it…ok back to the story…So after many test and hormone shots and everything else to get pregnant. i was at work one day and had one of those very bad pain to where i couldnt walk whole stomach area (which was a cyst bursting again) was in bad pain called the gyno and he said to imediatey go to the er since i was under meds to get pregnant he thought it was piv pelvic inflamatory diease went to the er and thats what they diagnosed me with my gyno gave me some meds and said we still might be able to get pregnan an my obgyn suggest invitro fertilization so we said ok and we did it and it worked i was pregnant in jan 2001 at age 27 turned age 28 and had a beautiful baby girl never even knew that i had endo the whole time. I was small and had to have a c-section and the doctor that preformed the c-section said that my ovaries were black and cemented to the walls of my abdomnal, I said what caused this and she said your probably had an infection and this is what happened and again no mention of a laproscopy or surgey to see why.. so i continued my life in pain with every period and very moody like all my life but my husband stood by me through it all. Then when i was 29 it happened again always during my period i woke up in the fetal position and in sever pain for 3 days couldn’t hardly walk or touch stomach and just thought it was severe cramping like ive been told my whole life. but i now know it was cyst on my ovaries bursting, and at this same time my mom was haven issue and had a hysterectomy her diagnose was fibroid tumors. so she suggested me to go to her gyno and get checked out. so i made and apt and she did a sonagram and found cysst on my ovaries one on each and said one was the size of a grape and the other was the size of an apple so she put me on meds for a month, meds that put you through a temperary mentapause and let me tell you it was bad hot flashes and mood swings that felt like hot flashes very very bad so finally when it was time to go she if it workded when i went back the grape on was gone but the apple sized one got bigger the size of a grapefruit now so she said we had to schedule laproscopy to remove them and clean it up. I went in for laproscopy and came out find out that i had sever endo past stage four she said i could of possibly been born with it…she said in her25 years of being a gyno she has never seen a case this bad as soon as she went into my stomach she saw the endo everywhere on my ovaries, abdomin, uterus, stomach, the walls of my inside everywhere, and thats when she told me that all those times in my life that i had the sever pain during my periods that left me in such bad pain for days was when i had cyst that bursted and she was amazed of how i lived through all of them cause she described it as a sac of blood exploding inside your body but the blood was somewhere is shouldn’t be and she said it was like acid inside of the body causeing extreme pain she said most people wouldn’t even be ale to stand the pain.. she said how did i do it i told her it was bad really really bad but i would take premysin pain pills, i took 2 every 3 to 4 hrs and it was like this every period. I don’t even know if they make these pills anymore. So she explained to me different options I had, she said we could try for another baby but didn’t guarntee that i would carry it the whole nine months she said most cases this bad of endo dont even carry the baby full term and she was so surprised that i carried and had a health baby she called her the miracle baby… We went home and discussed it and we decided we didn’t want anymore children that one was enough for us and i was tired of all the pain. I decide on a hystrorectomy but she would leave the best lookin ovary so i would still have hormones and i wouldn’t have to go on hormone therapy. That was the best decision i ever made i no longer live in pain and no longer am moody like before, much much happier marriage and life…of course i couldn’t of done it with out my wonderful husband to be there with me through it all and my gyno told him that it was going to be very rough throuhg that temp menopause and that i couldn’t control it and to look at it that way my boby was going through some extensive changes and i couldn’t control it..but we made it…i did gain weight from it and im managing it now I’m going to be 36 this year and im glad i finally found out the reason why…still have the headaches though just about every day…I only hope my daughter doesn’t experience that same problems that i did…It worrys me since she is starting to get headaches just like I did around the same age and she often says her stomach hurts but not bad, i’ve let her doctor know and they said could be many things growing pains, gas pains etc…i guess time will tell but this time im more knowledgeable about the whole situation. I wish there was a way to determine it earlier and other than a laproscopy to detect it….I hope my story livin with endo helps someone else and dont always depend on one doctor to dignose what is wrong….:):)

  48. if anyone has an answer for my daughter on what to do for her please respond i would hate for it to be too late…thanks again…lisa

  49. I recently went to the dr’s office for left sided back pain and right sided abdominal pain. I was told that I probably was not dying and we would have to see how it played out. He stated that there was no correlation between the two pains.
    I took it upon myself to see a ob/gyn, immediately he ordered an ultrasound where we discovered a baseball sized cyst. After ordering blood work and finding elevated levels of AC-125 a laparoscopy was suggested to remove the cyst.
    When they went inside, they discovered bilateral cysts and bilateral endometriois. I was diagnosed with stage 4 endometriosis. One of my tubes is completely destroyed, endo and scar tissue. I was devastated.
    My gyn is starting me on Lupron injections in hopes that it will help with pain and hopefully lessen or stop the growing of the endometriosis.
    I am grateful that I have a wonderful 5 yr old daughter, but really dreamed of having more children. I was told we have to wait until the injections are done in 6 mos and see what happens.
    Anyone have any info on the Lupron injection?

  50. i bumped into this site when i was searching for info on retroverted uterus.
    i have had cramps during menses ever since it started but never unbearable, and it used to go off after popping a few pills. i first went to a gyn after i got pain during intercoursefew months into marriage. she did an ultrasound scan and said that there is a cyst in the right ovary about 5cm showing blood, and that she was not sure if it just bleeding into a cyst or if it was a chocolate cyst and asked for a followup scan after a month, which showed no increase in its size, so she told us not to worry. but she also said that my uterus was retroverted and fixed on vaginal examination. but she didnt say anything further about it. the scans were otherwise normal, and except for mild cramps for the first 3 days of my period and occasional pain during intercourse, i’m fine now. but this “fixed retroversion” has been bothering me especially since we are planning to concieve now….

    Does anyone want to comment? coz after going through the posts, i’m wondering if i have endometriosis…
    is there any other way to diagnose it without a lap surgery?
    does it show up on ultrasound?

  51. i forgot to mention that i’m 27yrs now and i’ve also been diagnosed with irritable bowel syndrome…

  52. Ami: From all the research I’ve done and having gone through endo myself, no doctor can officially diagnose endo without the laparoscopic surgery. Ultrasounds and other tests can’t show it, they have to literally go in there and look around. I don’t know much about the condition they say you have, but if those are all the symptoms you’re showing, I doubt you have endo.

    Jasmine and everyone else: I’m sorry to hear about all the damage this illness has affected everyone here. I was diagnosed w/ stage II endo after suffering a miscarriage over 2 years ago. Since then, all the docs have done for me is say that I need to get preg, I need to get preg… Well how can I do that?? Both my tubes were blocked, though they were able to unblock one and the other is useless. So 2 years and no children later, just went to see a specialist and have to go through this all over again, though he seems really helpful. He and i are both afraid it’s turned into Stage IV, as I have been having severe pain during urination and bowel movements and excruciating pain with/after sex. Kinda hard to make a baby that way! lol. Anyways, hopefully we can get on the right track and get things done before it’s too late. And good luck to everyone else on your journeys.

    Sorry, I needed to rant to people that would understand. :)

  53. Hello – This is my first post, and i hope someone can help. I had terrible cramps when i was a teenager and the doctor just put me on the pill right away. I stayed on it for 8 years and didn’t have too many problems at all. I went off the pill about 3 years ago and every month since then the pain has gotten worse and worse… Ovulation and my period are extremely painful – and I was sent for a colonscopy because of digestive issues. I’ve had a bunch of pelvic and vaginal ultrasounds but none see anything – my gynocolgist felt thickening of the ‘ligaments’ though – so he thinks that I probably have Stage 2 endometriosis. I’m trying to get pregnant (for 8 months) with no luck…. and don’t know if i should go for the surgery because he said if i have stage 1 or 2 endo, that it won’t help that much. QUESTION: is it possible to have stage 3 endo but it not be seen on any ultrasound???
    Thank you!!!

    • Cara,
      Thanks for the comment! Welcome to my blog. Ultrasound cannot diagnose endometriosis. For this, you will need a laparoscopy. I will tell you what my gyno told me before I was officially diagnosed. I was trying to get pregnant and couldn’t. The doctor said to give it a year because her concern was the lap would cause adhesions. I did get a lap AFTER my first child. Stage III was found. All doctors differ on when they will do a lap. You may just need to hold out for a few more months before the doc will agree to do one. Good luck and don’t give up looking for answers!

      • Thanks for your reply.

        I’ve read that the only way to definitively diagnose endo is through lap – but wasn’t sure if i could be in stage 3, given they’ve seen nothing on an ultrasound – Were you in stage 3 and they didn’t see it on any ultrasounds?? and were able to get pregnant without surgery? I just wasn’t sure if part of the definition of stage 3 is that they see/find it on your ovaries.

        I have surgery booked in March – so by that time it will be almost a year of trying to get pregnant, so think it will be good to get it done.

        Thanks again!

      • I had a D&C and hysteroscopy. That took care of some little fibroids I had. The one thing my doctor saw on U/S that clued her into it most likely being endo (coupled with symptoms and family history) was a thickening of the endometrial layer that did not correspond with my time of the month. But they could tell for sure yes or no or stage from that. I was able to get pregnant without the lap. But not everyones endo or bodies are alike. My doctor wanted me to wait on the lap because she said it would cause adhesions. Adhesions can bind to tubes and ovaries and hinder pregnancy. She didn’t want me to have 2 things going against me. Even after my last lap, I can still feel the adhesions. Good luck. March will be here before you know it.

  54. Hi Cara, how did your surgery go? Hope all went well.
    I just found out I have stage 3 Endo (Yesterday). I’m 27 years old, have the most regular cycle you can ask for :28 days, never missed a cycle. For as long as i can remember I’ve always had severe menstruations cramps, even ovulation cramps time and again. Back pain just thought it was associated with the cramps. After four years of TTC and yearly checkups with my Gyne as well as blaming my husband for his men being all out of whack, little did i know, i was the problem. I am so furious at my gyne tho, as every year, he would tell me the same thing “Its not my time” surely some sort of alarm should have rung after the fourth year? I’ve never been on any kind of birthcontrol. I then decided to get a second opinion at a fertility specialist which completely caught me off guard when he told me i had endo. So i’m scheduled for surgery 08 June partially scared, partially relieved, at least I now know what it is and it is one step closer to having a baby.

    • Hi Tracey,
      Your story sounds so similar to mine, I am just a few months behind you. I am due for surgery on Monday next week and am very stressed. What did the doc say about your chances of pregnancy after the op? I am so hoping it was possitive! I can’t believe how gynae’s just dismiss this disease. I am so grateful that a doctor finally took me seriously. My new gynae is a fertility specialist, so i am hoping that I will soon get some good news.

  55. I am 47 years old. I have never missed a period – like clockwork – every 28 days since I was eleven. I have two wonderful children who I conceived and gave birth to in my late thirties. I went to the ER at our local hospital two weeks ago today with bad pain in my stomach, thinking I might have an ulcer caused by worry over an aging parent. It was there that they found an ovarian cyst on my left side – about 7.5 cm. I had never had pain, not even much with my menstrual cycle. I saw a couple of OB/Gyn’s and both recommended that it be removed due to the look of it. I had surgery June 7 and they found stage 4 endometriosis. The doctor took the ovary and uterus but left my perfectly healthy right ovary. I am currently very depressed. I really had no choice in the loss of my uterus and now feel like an incomplete person – I had so wanted to still have that part of me when my daughter started her cycle – to share in that new burden with her. Anyway, I am searching for the reason why it went that way and am due for followup visits to the doctor, of course, but right now it is very sad for me – to lose the home my children lived in as they grew inside of me. If you pray, please pray that I find the answer to this question WHY?. It is encouraging to know that I am not alone.

    • I am so sorry for the loss of your uterus and ovary, and will pray for continued healing . At your post-op take someone with you and ask “why”. Did the doctor ever discuss taking your uterus?

  56. In the past year I have seen so many doctors and spent I don’t know how much money until I found my Angel Doctor and that is what I call him. The doctors before did other tests and when I would go in I would tell them how I was feeling and what problems I was having. They basically blew off what I was saying and told me that this will get better. Well it never did and I was in pain constantly. The Gyno doctor told me that it must be something to do with my bladder and sent me to a urologist. The Urologist looked at me like I was crazy when I described what I was going through but said he would do some barbaric types of test on me to prove the other doctor wrong. I didn’t do them but found yet another Gyno doctor. The first day I met him I was truly defeated and started to tell him what was going on. He looked at me and said I am not sure what the other doctors were thinking but I believe you have endometriosis. He order an internal ultra sound and discovered my uturas is enlarged, my right ovary was in large with a large cyst on it and my left ovary had a cyst on it as well. I had laprascopic surgery last tuesday to take the cysts away and to make conclusive proof that I have endro. It turns out I do have stage 2 endro. I go back next week for my surgery follow up and get more info on what is the game plan from here. I can’t thank my doctor enough for all the help he has given me thus far. But I can’t tell you how angry and upset and violated I feel from the other doctors who basically brushed me off as a complaining woman that should just take some midol and get over it.

  57. Thank you for posting this, with pictures. It helps me better understand what the heck is going on in my own body. I have been on the endometriosis train for almost 2 years now, and may have adenomyosis as well. It’s infuriating to know that there aren’t many acceptable treatments available. I had my first surgery last March, and already need another (probably). And I’m at that stage where every period is so painful and heavy that I wind up on the couch for the day or in the ER (to get the bleeding under control). To manage endo after the surgery, I have some very limited choices. Possibly a Mirena IUD. Possibly nothing. I can’t take systemic hormones because I have an antibody that makes me more likely to have a blood clot (hormones make that risk higher). I can’t do Lupron because I suffer from depression. My surgeon has already trotted out hysterectomy as an option, but I am going to think very, very carefully about that. I don’t want to go there unless it’s absolutely necessary.

  58. Hi guys, I have an encouraging storey….
    I was diagnosed with Stage 4-5 endometriosis after I began having urinary incontinence while away on a trip. I had just had a full physical before I left and reported painful intercourse to my family physician but she said it was likely just hormones – I never had any other pain, even during my period.
    So I had laprascopic surgery in 2005, at the age of 28. The surgery took about 2 hours; they said I had extra tissue growing everywhere even my diaphram. The point of this storey is that my biggest concern was that I might never be able to get pregnant; and I wasn’t in a relationship with a man who was willing to find out. In 2009, after a careless night with my boyfriend, we got pregnant, and gave birth to a lovely little boy. Endometriosis aside ladies, anything is possible through prayer. God Bless :)

  59. I have been diagnosed with endometriosis in February of this year, although looking back I can see the symptoms for as many as two years. I am 29, and my husband and I have been trying to have a baby for almost 3 years with no luck. I have done just about everythign (I also have a huge problem with cysts that like to rupture, I have three right now on my right ovary). I have done birth control, had 2 laparoscopic surgeries, I have been on provera, and now I am about to start Lupron. I want to have a baby but I am feeling very defeated now! My pain is severe, my doctor has been on pain medications to deal with it, and sometimes I get these terrible pains that shoot all the way down my leg. sometimes I have to stand still for a few minutes before I can even walk because of the pain. I know I want a child, but I also want the pain to go away. my OBGYN recommended after 6 months of Lupron that we start fertility drugs. If I don’t get pregnant, I am seriously considering a hysterectomy. Good luck to you out there dealing with this, I pray one day they find a way to treat it that is easy!!

    • Don’t rush into a hysterectomy, Sabrina. Make sure you have done your research and tried all options. It a surgery to which there is no return.

    • I agree. Don’t rush into a hysterectomy. It’s “final” for children and will NOT solve your problems 100%. I’ve had pain since I was 11; had 3 Laps and Oct ’10 had a complete hysterectomy only to find after another Lap that it is still at Stage 3-4. Knowing that I STILL have Endo after that really ticks me off! I recently just got off of Lupron and Danazol, neither of which helped, but felt to make it worse. These drugs do not stop or prevent Endo but lower the levels of pain and response to the disease. I have tried EVERYTHING and I mean all. I am still very uncomfortable and in yet another depression which require drugs or I’d lay in bed and die because of lack of food or water. I’m fortunate enough to have one child and some days that doesn’t even motivate me to get up.

      I really hope you and your doctor can work something out and make the Hysto an absolute last resort.

      • Kim, I can’t no longer count the number of women who have emailed me experiencing endometriosis after hysterectomy. It’s astounding. And it shows that physicians need to seriously consider the surgery last resort and an archaic remedy.

      • I’ve 100% changed my diet, don’t eat any food with hormones (meat, etc), processed, preservatives, etc…and all that got me was 35# less pounds! Ik glad for that but it just amazes me that Endo is not considered “chronic cancer” or something! I had my 2nd Lap post-op with my Dr last week and all he did was give me 3 more RXs! I’m not going to take them because I know it won’t work and I don’t want all those chemicals in my body for “no reason.” It just kills me that I still haven’t had just one day to feel normal. My marriage is on the ricks again because sex has become so painful again. All my Dr did was give me lidocaine cream. I just want to scream at the top of my lungs!

  60. Hi, thanks for all your posts…. I am currently experiencing horrible pain and uncontrolled Uterine Bleeding. Have been doctoring for the past week….have had my period for 4 weeks now! In 1997 I was diagnosed with Endo -stage 3. I had laporoscopy surgery and then for 6 months after was on Lupron (caused headaches, severe hot flashes and night sweats). They told me at that time that because of the location of the Endo that I would probably never have children…. I now have 2 beautiful boys, ages 7 & 5. So for those of you that are worried about having children, I can still happen! Now tomorrow I am headed to the Mayo Clinic to see a GYN MD …. has anyone else ever had Endo and uncontrollable uterine bleeding? I am soooooo extremely tired, very painful cramping and the bleeding won’t stop. I have done tons of research and lately have talked to some women who have had Hysterectomies and said they would have it no other way. But I have also read tons of stories of women who say Hysterectomy is not the answer either. I know that the MD tomorrow will probably say that Hysterectomy is probably one of my options or another proceedure is the Uterine Ablasion (anyone had this done?) All I know at this point that the bleeding must be stopped and I cannot take the pain anymore…. since my surgery in 1997 I have not had any problems with ENDO until 4 weeks ago when this period started and now will not stop! They have already done the pelvic ultrasound and it only shows 2 small cycts on one of my ovaries… so I am 95% sure that my ENDO is back….but not sure about all this bleeding? Any replies would be appreciated…. off to see the GYN MD tomorrow. Wish me luck!

  61. Hi, thanks for all your posts…. I am currently experiencing horrible pain and uncontrolled Uterine Bleeding. Have been doctoring for the past week….have had my period for 4 weeks now! In 1997 I was diagnosed with Endo -stage 3. I had laporoscopy surgery and then for 6 months after was on Lupron (caused headaches, severe hot flashes and night sweats). They told me at that time that because of the location of the Endo that I would probably never have children…. I now have 2 beautiful boys, ages 7 & 5. So for those of you that are worried about having children, I can still happen! Now tomorrow I am headed to the Mayo Clinic to see a GYN MD …. has anyone else ever had Endo and uncontrollable uterine bleeding? I am soooooo extremely tired, very painful cramping and the bleeding won’t stop. I have done tons of research and lately have talked to some women who have had Hysterectomies and said they would have it no other way. But I have also read tons of stories of women who say Hysterectomy is not the answer either. I know that the MD tomorrow will probably say that Hysterectomy is probably one of my options or another proceedure is the Uterine Ablasion (anyone had this done?) All I know at this point that the bleeding must be stopped and I cannot take the pain anymore…. since my surgery in 1997 I have not had any problems with ENDO until 4 weeks ago when this period started and now will not stop! They have already done the pelvic ultrasound and it only shows 2 small cycts on one of my ovaries… so I am 95% sure that my ENDO is back….but not sure about all this bleeding? Any replies would be appreciated…. off to see the GYN MD tomorrow. Wish me luck!

  62. Hi everyone! You’re all very brave. Here’s my story. I’m 40 years old w/ MS and thought most of my pains were related to the MS- shooting pain in legs, lower back pain, migraines, shooting rectal pain, etc. Couldn’t handle the pain anymore & was getting very depressed & discouraged. Two weeks ago I had pain so bad I was popping Tramadol like it was candy. That helped a bit, but then I ran out. Finally went to the ER last Tuesday and they did an ultrasound. Found a 6cm chocolate cyst on my left ovary and a 5cm complex cyst on my right ovary. The ER doc sent me to an OBGYN & she suggested to give it the weekend and if it didn’t get better- do the laproscopy on Tuesday to drain the cysts. Well of course the pain got worse so I went in for the surgery. Right before the surgery I gave her permission to remove both ovaries & my uterus if something wasn’t right. Woke up Tuesday night after surgery and found out I had Stage 4 Endo! My left ovary was completely encapsulated by my uterus (along w/ the cyst) and fused to it! So she took out the left ovary & uterus. My uterus was tilted from the endo & stuck to my bladder & pelvic wall with a bunch of scar tissue. I was able to keep the right ovary- she drained that cyst & thinks it will be okay. I was just discharged from the hospital two hours ago. I never would have known about the endo had it not been for the cysts & probably would have gone on for years still thinking it was from MS. I’ll let you know how my recovery goes!

    • Wendy, your story just breaks my heart, but it is so informative. You are the second person this week that I spoke to that has MS and Cysts. I recently starting acting as a “caregiver” for a woman (age 43, diagnosed MS at 29) and she had a hysterectomy a few years ago, but because of the MS. There was no indication at the time that there were other problems, but the doctors soon found cysts as large as grapefruits on her ovaries and uterus. She was not diagnosed with Endo, but I am very curious now to know how many MS patients have Endo and/or Cysts and if there is any correlation with the two diseases. I have Stage 4, even after a full hysterectomy and last year the doctors thought I had MS after a series of “shocking” headaches and numbness in my left hand and left foot. It’s been ruled out, but I don’t honestly think that I am in the clear, since my hand/foot are STILL going numb. I just turned 31, which I have read is the average age of MS diagnosis. I hope you are able to get relief from your surgery and I’ll be praying for you for healing. Have you been trying any alternative treatments for your MS? Feel free to email me at kkandktomlin @ yahoo.com if you want to keep this off the forum. Thanks! Kim

      • Kim – Thanks for your comment!

        1) Let me remind everyone commenting on this thread that this is my personal blog. This is not a forum.
        2) Has your doctor checked into basilar artery migraines? They produced the symptoms you are describing. I have been free of them for a little over a year now, but during the 5 years I had them, was plagued with MRI’s every 6 months looking for MS.
        3) I’m curious as to how the women in your care MS was helped with a hysterectomy. If you don’t mind letting me know.

      • (2) My doctor has done MRI, vision exams, etc… I don’t have migraines, it just feels like every once in a while someone is hooking up an electric cord and shocking my head. It only lasts 2-3 seconds but I’ll have a mild headache afterward. I have problems with tension headaches and have for about 5 years now. The pain I have is usually on my right side, but my numbness is always on my left.

        (3) When “Kat” had a seizure, she became 99% disabled and paralyzed. Because she was having a lot of pelvic pain prior to that, and then with extremely heavy and debilitating cycles, blood clots, cramping, etc…, she figured it would be easier to have a hysterectomy so anyone changing her would not have to worry about that monthly “extra.” It wasn’t until the surgery when they found all the cysts. The hysterectomy lessened some of the back and pelvic pain she was having, but I don’t think that it actually stopped or slowed the MS specifically (less nerve/pain response, easier hygiene care). Her doctor said that it helped, but she nor her husband could tell me or remember what he said. I saw her in the hospital on Saturday when we discussed this. She did mention something interesting though, that before she was paralyzed, after the hysterectomy, her pain seemed to gradually increase and sex was painful. This seems concurrent with Endo, or what I am experience post-Hyst. I’ll see her later this week when she is discharged from the hospital and try to find out more info for you.

      • Painful sex is a common complaint in post-hyst women. Your hormones play a vital role in preparing the vaginal canal for sex, and on the libido. When these hormones are not present, it can cause a wide range of issues. Also, pelvic adhesions – from hyst or endometriosis – can cause a great deal of discomfort when having sex or moving bowels or bladder.

        Your numbness is interesting. My numbness – despite the migraines clearing – is always on my right. I had total body numbness once – which didn’t last long – thank goodness – and my neuro was concerned. My doctor said it has to do with my autonomic dysfunction and something I may just have to learn to live with. I don’t like this answer, but I haven’t found anything too promising.

      • I have had painful sex since 2001 and wasn’t diagnosed with Endo until 2010, Hysto 2010. Since then it has become increasingly painful again which seems to me to be a big indication that Endo is increasingly getting worse/coming back. The doctor will not consider other diagnoses such as vulvodynia.

      • Kim –

        Endometriosis returning post-hyst is a fairly common occurrence. This often results from 1) leaving estrogen producing ovaries in place, or 2) starting HRT too soon. Most docs will advise a 6 month window between the hysterectomy and starting HRT. It is believed that this window will allow remaining endometriosis implants to slowly starve and die away. Of course, HRT comes with it’s own laundry list of issues, but I won’t get into that right now. The younger you are, the harder it is to wait out this 6 month window, which is why endometriosis often continues to be a problem in young women post-hyst.

  63. Hi,

    I would like to know if the are people with Endometriosis stage 4, who have managed to conceive.Im 32 and was diagnosed in 2008 …had an ectopic pregnancy in 2004 and 2 Laporoscopic surgeries..mylast one was in Feb this year but i still experience pains… im worried

  64. Wow, I am so happy to have come across this blog. I’ve suspected endo for some time now due to some obvious symptoms. Ibs is amazingly my worst and most consistent symptom, coupled with alergies and moodiness and weight gain. However, it was only when my cycle became irregular and my migrains and cramping became unbearable, that I looked for advice. I see my gynae every year and every pap is fine. I’ve seen her 5 times this year and even though I asked about endo, she dismissed me and sent me home with hormone tabs. This just resulted in weight gain and more confusion. After more than a year of ttc I consulted a fertility clinic. It took one visit for the doc to diagnose stage 3 endo and I am booked for surgery next monday. I am terrified of what they will find, or worse, being told that I will never have children of my own. Is there any hope for me? Are there people out there who have conceived after stage 3 or 4?

  65. Hi Maggie, I am sort of in the same boat. I am 31 and have been diagnosed with stage 3, possibly 4 endo. I am heading for my first surgery on Monday. I am desperate to have children and my extremely fertile family is putting pressure on my husband and I too, which makes it so much harder. I am feeling so uncertain about the results and really don’t know how to face the idea of infertility. Are there people out there who have conceived and birthed healthy babies after surgery for stage 3 or 4?

  66. I always had trouble with my cycles from age 12. I was always sick. Always had every kind of infection you could get. kidney, urinary, bladder, etc. and the pain was so severe i would vomit where ever i was. the pain was so bad i would end up on the floor screaming in pain. working was impossible. i couldn’t walk. it was horrible. i had my first daughter when i was twenty. however, after her birth the infections were worse. the pain was worse. the bleeding was worse. i finally had a job with insurance. i had every test you could think of. the doctor kept thinking i had lupus because of the pain and muscle problems and unable to not be sick. couldn’t gain weight either. i was finally diagnosed with stage 4 enodmetriosis. went in for laser surgery but they just closed me up and said it was too bad to even start the laser. because of my age they didn’t want to do a hysterectomy. i was put on danocrine. and miracle of miracles it helped. then i lost my job and insurance. the cost was unreal and i couldn’t afford the danocrine. so i suffered for eleven more years. liver count went high due to the amount of tylenol i took. had to stop taking it. then somehow i became pregnant. had a healthy baby girl but the endometriosis kicked right back in with my first cycle. i decided to go on birth control not wanting any more children. so i went on depo provera. another miracle. i’ve been on the depo for thirteen years and absolutely refuse to go off. no periods. no pain. i’m healthy. no infections no sickness. it was like a miracle cure. but, i’m terrified to go off the depo. i get bone density tests regularly to make sure my calcium isn’t being depleted. but it was like a miracle drug for me. recently i read an article that said the body of women with endometriosis acts like it has an auto-immune disease, because the body is always fighting the implanted endometrial tissue. often times it is confused with things such as lupus. that was me. one hundred percent. i haven’t had pain one. almost never sick and rarely even get a stomach ache.

  67. I have stage 4 and am 32 yrs old. Since I was 16 I’ve had 4 laproscopic surgeries. I have dealt with pain for almost 17 years. I am to a point where I do not want to deal with the pain anymore. I am currently on Paragard BC and today my doctor prescribed me the BC pill to have more horomone to see if the pain goes away. Intercourse is unbearable!!! I am thankful that I have an 18 month old boy. After several failed attempts to become pregnant and speaking to my doctor about my options, I gave up on my dream of being a mother. 2 months later I was pregnant :) April of 2011 I delivered my 2nd child stillborn, still do not know why he did not survive. Today, my doctor told me that we can do another laproscope however that will not change the inevitable….my uterus must be removed before my endometriosis spreads inside my uterus. It is already on the outside as well as my tubes, ovaries, and bowls. I want to try to have another baby, I don’t want to deal with the pain another year!!! I feel for all of you woman, I do. My advice to those who do not have a child yet do so quickly if you can. Be persistant with your doctor, heck…my doctor at 16 wrongfully diagnosed me with vericose veins on my uterus not endometriosis and then wanted to do a hysterectomy at 18. If I would have listened to him, I would not have my miracle baby. Wish all of you the best!

    • Rachel – thanks for your comment. I want to clarify something from your comment, both for your understanding and those reading it. Endometriosis is a condition in which endoemetrial tissue – tissue found inside the uterus and shed during menstruation – grow outside of the uterus. The condition in which doctor may feel warrants the removal of the uterus is called adenomysis. This is when the endometrioma tissue grows WITHIN the uteran wall. This can lead to a boggy uterus. Removing the uterus will not eliminate endometriosis. It will stop periods. To reduce endoemtrial implants growing, the ovaries need removed – an oopherectomy – and the patient should refrain from taking estrogen replacement for at least 6 months. The dramatic withdrawal of estrogen in a pre-menopause woman can have devastating reactions. This is not a surgery to enter into lightly. And it is not a cure. To have just the uterus removed can also cause structure weaknesses such as bladder and bowel dropping and issues with adhesions. good luck with whatever you decide and remember to enter into any decision – especially a non-reversible surgery – once you have had all your questions and concerns answered.

    • Hi Rachael,

      I am just wondering if your OB/GYN possibly suggested they give you a drug to temporarily throw you into menopause??? According to the surgeon I had it sometimes cause a stop to endometriosis. I just can’t, for the life of me, remember the name of the medicine. I had surgery last June – one week after discovering I had an enlarged ovary and having gone in for bad stomach pain – not the location it would have been for endometriosis. They only gave me the possible scenario for cancer – not even a discussion about possible endometriosis. So it was quite shocking when he removed my uterus for a different reason. I wonder sometimes, looking back, if there could have been another, non-surgical way to have dealt with it. I really believe that God has given us great mental ability to learn about things like the human body – but only He is the Great Physician and always knows what is best for us.

      I just hope that in your case, the doctor has offered all of your options before surgery because who knows, perhaps God has something different in mind for you as well. May God guide you down the right path. (I realize you may or may not be a believer – but I just thought I would share anyway :-) ).

      • Sorry Jamelyn. I just saw you post.
        I was on Lupron for 6 months. It was the worst experience of my life. I went from psycho to happy to an emotional crying mess and the cycle repeated itself daily for months. I grew excess hair on my face (mustache, chin, cheeks). There is no other word to describe it other than hell.

        Last week Tuesday I had a vaginal hysterectomy with laparoscopic assist. My uterus, left ovary, left tube, right tube, and cervix was removed. He left my right ovary so I do not go into early menopause. The “talk” came about when I scheduled an appointment with my OBGYN. I was sick and tired of the pain, It did not matter if I was on my cycle or not. It was nothing but pain every day since I delivered my 2nd child stillborn (which I was told that endo could have been the cause). I could not even be intimate with my fiancé without crying. My OBGYN says well it’s time for a hysterectomy (was previously told the last thing I wanted was my endo to get in the walls of my uterus and I was postponing the inevitable.) I was in a panic…can’t we just do another scope? I don’t want to make rash decisions. He said yes, so the scope was scheduled. I doubted myself and spoke to family and came to the conclusion it was time for the hysterectomy. So back to the doctor I went.

        This Wednesday I went for my week post op. The pathology report showed that when they cut into my uterus I had adenomysis, in other words the endo had spread into my walls. My doctor said that having it in a few spots is painful in its self…I had it everywhere. On top of the endo spread everywhere, tubes, bowels, ovaries, now it was in my wall. Had I just had the scope my doctor would have never found it in my walls. I also had several fibroids as well. I felt like screaming…”finally someone understands my frustration.”

        He also removed my Appendix. He said he had never seen anything like it. My appendix was twisted with my right tube. My appendix was all dried out. He said it is supposed to be soft and it was like a big callus. Also the artery that goes to the appendix, mine was like a zig zag shape. He said had he not decided to remove it, I would have ended up in the ER within months.

        I am thankful to have an ovary in case someday we decide to have a child with a surrogate. I know that can be costly but I am thankful that the option is there. I cry…one I never thought I could bear children. My miracle Hunter is the greatest gift and I thank God for him everyday. My world changed the day he was born and then again the day I lost Harley. I try not to dwell on the fact that I will never be able to even try for another child because I have no uterus to carry a child. My endo was the worst it had been in 17 years (hormone changes after pregnancy etc.) Like my doctor has said, there was no guarantee that I would have become pregnant again.

        I know I made the right choice. I hope my story helps other women whom suffer from endo. My heart breaks for you. Stay strong!!! Lots of love to all of you.

  68. I feel for you ladies and my heart goes out to you. I have never told anyone my whole story. I had monthly periods since I was 12. They never lasted more than a few days, but very regular. Cramping was ‘normal’. When I started having sex it was fine more painful than it should have been, but I didn’t know the difference. When I was 16 I went on birth control to avoid getting pregnant. I gained 5 lbs in 2 months. I freaked out over that and went off it. The next month I got pregnant (I was barely 17) and gained 50 lbs from it. I know, ironic right? I had a normal pregnancy, long but normal labor and delivery and a beautiful healthy baby girl.

    I went on the depo shot right after she was born. I bled for 6 months on that and decided I wasn’t going to do that any more. Sex was still painful, but ‘normal’ for me. Like I said, I didn’t know any different. Then after a few couple years (again everything normal-ish), not on birth control but sexually active, I felt like something was wrong. I had decided by the time I was 20 that I didn’t want more kids. The drs of course wouldn’t even consider tying my tubes at that time.

    When I was 21 I had my first cyst burst. I was doubled over in pain. We went to the hospital not knowing what it was. They put me on meds, did an ultrasound and sent me home. I followed up with my dr the next day. He gave me a lecture on how careless I was and how I should not be sleeping around (which I wasn’t) and that I had PID because of it. He put me on very strong antibiotics and sent me to a OBGYN for my ultrasound results. The OB took one look and said I had a cyst burts, not PID. No reason to stay on th othe meds. It would pass.

    Within the next month I got pregnant. Now, I know most women would jump for joy at this, but I could help thinking that something was wrong. I had approached my drs about endo in the past, but they said I didn’t have any symptoms so there was no reason to explore the idea. I miscarried at 9 weeks. I actually felt somewhat relieved. Not because I didn’t want it, but because I felt like there was something wrong that I couldn’t explain. I had a D&C and life went back to ‘normal’. A month or so later I had another cyst burst. I was in so much pain that I was throwing up. I went to the hospital, they put me on drugs and sent me on my way.

    I approached my dr again about endo and he brushed it off. Things were ‘normal’ again for a few years. Regular periods, regular cramping, and regular intercourse pain. Then I had an abnormal period. I went to walk to the bathroom at work and from my desk to the bathroom I had bled through everything-tampon, pad (I always used both), undies, and soaked my pants. It was strange. Then back to normal. Then about a year later that happened again. But the drs told me it wasn’t completely abnormal.

    A few months after that I moved to a different state. Another year later I had another cyst burst. I worked through that one. Then a few months after, another one. I worked through that one too. Then the following month the worst one yet. I went to the hospital. Not even morphine could touch this pain. In fact I refused the second dose of it they tried to give me because it wasn’t helping. They did another ultrasound and referred me to an OB to follow up with the following day.

    She was the most amazing dr I’ve ever had (and I’ve had alot). She took one look at my results and said “there’s something very wrong here”. I told her I’ve been saying that for years. Turns out I had PCOS (polycystic ovarian syndrome). Now we’re getting somewhere! Both my ovaries were filled with 3 golfball size cysts and many other little ones. I told her I wanted her to take everything out. I didn’t want anymore kids and had no reason to keep parts I don’t need. I still felt like there was more wrong. She didn’t take my decision lightly. She wanted to make sure that’s what I wanted.

    We scheduled my surgery for 2 months after our first visit. She was planning on removing what she needed and leaving the things that were ok. So I went under the knife (knowing/feeling like I knew there was more to what was wrong with me.

    Before I went under I had asked her to take pics of my parts after she took them out. I was curious as to how bad it really was. When I woke up she came in and sat down with me. She said “well, you’re the second patient in my 25+ years of practice that was absolutely sure something wasn’t right”. She continues to tell me I had to have it all removed. My ovaries were 10 times the size they shoud have been. My one ovary looked like hamburger, literaly. It was a chocolate cyst that was growing hair (ew I know) and turning my blood colors it shouldn’t be. But, while she was in there she found out I was covered in endometrosis. Stage 4. She said all my parts had to come out and even then she couldn’t get it all. My parts were starting to seize together it was so bad. I knew it! The hardest part is that drs won’t go off of a feeling. They have to have some sort of symptom.

    I found out that I shouldn’t have been able to have my daughter and if I hadn’t had her when I did, I wouldn’t have her at all. I’m very lucky in that regard. I had considered giving her up because I got pregnant so young. But am so glad I didn’t. She’s amazing.

    I was barely 26 when I had my total hysterectomy. I’m now alomst 33. I know my decision isn’t for everyone, but I’ll take the hot flashes and menopause junk over what was wrong with me anyday. Although being thrown into menopause is not the funnest things in the world. I went 3 years without hormones because I didn’t like the testing n such to find the right one. Finally I came to my senses and tried a bioidentical hormone which has been great.

    Anyway. I know its an extremely long story to make a point, but if it helps someone then great! I know if I could go back and do it again I would have insisted on finding a dr that would take a closer look, even if it was just because I had a feeling.

    The point is, you know your body better than anyone. Trust your feelings! Drs see hundreds of patients and people aren’t all the same.

    Thanks for letting me get this out in the open and if anyone has any quesions, feel free to ask.

  69. christelle barnard

    i feel strong im by stage 2 now of what i have read and seen on the web and my results im 30years old the doctors dnt know wats wrong please help im married now 4 6years my babies is 5 and 3years old

  70. I was diagnosed with Endo when I was 15 year old, at the time i was told hat I was one of the youngest in the world to be diagnosed. At that point I was not holding down foodmy pain was so bad. I didn’t know what was wrong with me and neither did any of the 10 doctors I had been to. At 15 I was a stage 1. I am now 27 and it has gotten severly worse and as the years go by my pain seems to just be getting worse. For me this was a genetic thing, my mother and grandmother both had endo and didn’t want to tell me because they “hoped taht it would skip me”. THis has been an on going battle for me physically and mentally. I was told at 15 I had a high chance of not being able to have children. I can tell you that at that point being told that more than eats you up inside.

  71. hi i have recently been diagnosed with endo after years of pain, and specialist recomends laproscopic surgery, but my husband and i arent ready to start trying for children as yet, but will be in next 2years or so, should i have lap now ?? or should i wait until ready to try for children before having it done so they dont come back? im very confused :(

    • Decisions like this must be made between you, your spouse, and your physician. Ask your doctor if there could he consequences to delaying the surgery. Also, what would the chances of adhesions developing and how your fertility may be helped or hindered with the surgery. Thanks for reading!

    • Dear Kara,

      Endo is a disease which keeps coming back after surgery unfortunately. The best time to try for a baby (and this is based on medical studies) is within 6 months of a laproscopic clearance surgery. Therefore, if the pain is not unbearable and not affecting your life a great deal, I recommend holding on to the surgery till you are ready to have children. This is true es[peciallyt if you have endometriomas (i.e. cysts inside the ovaries). With every surgery to remove endometriomas, some of the healthy ovarian tissue containing eggs is also stripped off tyherefore depleting your reserve to some extent. All the best to you.

  72. christelle barnard

    im feelling great now i gave my pain to the lord im not converted but im a believer just trust and ask christelle barnard

  73. hello… I came to this sight by the grace of god..my daughter was diagnosed a year ago with endometriosis… it all started when she was 12 but at age 13 we did a diagnostic surgery… the obgyn came out from what was suppose to be a 30 min surgry was a 2 hr one looked at my family and I and said her diagnosis is stage 1 endometriosis of a 32 yr old woman they’ve never seen in a 13 yr old… these last four months shes been in chronic pain can hardly sit walk showr ect…she cries beggin for me to make her pain go away… Ive tried callin the obgyn and all he says is she has to tough it out till shes 17… I find it inhuman to make a lil girl suffer in pain like this… Ive decided I want a second opinion from another doctor… It angers me to know her life is on hold cause of her pain activities are limited and ect… I dont know what else to do ..

    • It brakes my heart to hear of girls needing surgery at such a young age for endometriosis. I, too, was in pain in my early teens and NO ONE took it seriously. I am glad they found it, but her pain needs to be addressed. Make sure to get physical copies of her surgical report and all doctors notes that go a long with the diagnosis and treatment of this condition. Then find a doctor who will take her pain seriously. If that doesn’t work, enlist the services of a patient advocate.

  74. daylight_dancer

    So glad I found this site.

    I’m 28 (29 this year).

    Went for a routine gynae checkup in Oct 11. Had an ultrasound, doc saw a 4cm cyst. Said to wait till my next period and come right after (she suspected it might just be build up- soit might disappea).

    Went back right after my period. It was still there. Only solution: laproscopy surgery. My doc is wonderful- she explained the entire procedure, drew out the diagrams, told me what we’d do post-surgery.

    Took my mum with me for support .Mum had horrible endo, had a full hytrectomy at 38). My mum’s uterus had somehow turned ‘backwards’. But she did have us at a young age. I remember her periods being so horrible, she’d curl up in bed for days.

    I had no symptoms. My periods are regular, lasts 3-5 days, no cramps, no serious PMS (just cravings for chocolate/ salty food!).

    I had finally had the laproscopy done 2 weeks ago (never had surgery in my life, freaked out- so I was such a horrid mess!). It was easy, quick & went well.

    Doc’s put my on Lucrin to stop my period for 6 months.

  75. daylight_dancer

    Oops hit send before I finished, sorry!

    Anyway according to my doc, everything else looks fine & healthy. Just my uterus was tilted to the left. She’s put it back in place.

    I feel no pain. Nothing.

    I know there is a chance I might have problems conceiving. I dont know how I feel about this- I’ve always maintained the fact that I don’t want kids, but I am not married now so this might change in time.
    Just bothers me for now, but I suppose if it’s meant to be for me it’ll be fine.

    I suspect I got endo probably because it’s genetic. And I’ve been super, super stressed out for the last 6-8 months.

    Anyway thanks ladies for all your post. It really helped to know I wasn’t the only one going through all this.

    I hope you all are doing great.

    • There seems to exist a genetic link with endometriosis, though, I am not sure of a link between it and stress. Stress can increase pain, or lower your pain tolerance. Those with a chronic condition should learn to properly address their stress in efforts to reduce it and it’s effect on the body. I am glad you have found some relief. Thanks for reading!

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  77. Is there anyone died because of endometriosis- severe pain.

    • Endometriosis and the pain associated with it are not terminal. That means one does not die from it as one could from cancer or heart disease. Stating that, though, chronic pain does have a way of wearing a person down. Some of us endometriosis bloggers have noticed a trend in the past couple years of women searching for the terms “endometriosis suicide”, writing about the topic and desire on their own blogs or on message boards, and there have been news accounts of women who do commit suicide because of the pain. Living with this disease and getting proper, adequate treatment can be difficult for many women. If you’re pain is not being met by your current physician, I urge you to find another one. Soon! If the reality of prolonged, severe pain has become too burdensome for you, I urge you to please seek psychological help. Medications and talk therapy does exist that can help someone cope with the reality of long-term or severe pain.

  78. Im 25yrs old no children n my. Boyfriend has no kids. I was diagnosed with stage 4 endo in 2009. My first surgery was June 2009 dr stated I would never have kids because the severity of my case my tubes ovaries were all knotted up n attached to my uterus my second surgery was february 2011 I’ve been taking 50mh clomid trying to conceive it so hard I’ve become depressed because this is the one thing I want n I can’t have so i don’t know what to do anymore just pray n keep faith I guess

  79. I can’t believe how glad I am that I found this. I have been going through severe pain for the last 10 months. I have spent several days going in and out of the emergency room and it’s to the point of them not treating me anymore, and I know they think I’m faking it. I went to Gastro doctors, my regular doctor, and finally ended up at my OB/GYN. My whole family [all women besides my father] have experiences of some type of problem. My mother has endo and has had multiple reaccurences, even after a partial hysterectomy. [Everything was taken except her cervix and right ovary because she was 45] My older sister suffers from PICOS and my younger sister also suffers from PICOS but has had a large cyst removed that caused her right ovary and Fallopian tube to be removed also. I always thought that my womanly health was pretty normal until I had horrific pain the week before, of, and after my period. It was mostly focused on the right side. I have been on the nuva ring for about 5 years and so I thought the pain I was having was cramping. After the pain got more severe I decided to visit the emergency room because I thought it was my appendix. After more and more visits and no answers I had, had 9 CT’s, an endoscopy, a camera capsule swallowing test, and tons of blood tests..still nothing. I then went to see my OB/GYN and she suggested that by my pelvic exam that I could have endometriosis and to go through with a diagnostic laparoscopy. I had the laparoscopy last friday [5 days ago] and she found stage 1 endometriosis on both ovaries, my cul de sac, uterus, and pelvic wall. It answers a lot of questions and helps me recognize why I have the pain I do. We have discussed possible treatments and I will start Lupron shots on my next cycle [the end of this month] along with another hormone to help with the side effects. I’m only 23 and without any children or any prospects of having kids in the immediate future. The surgery did not work well with my body as I ended up with a pretty intense infection and they do not know the source so I am now on two different antibiotics to try to cure it. Although I’ve hit a little bump I’m quite confident that I can make it through this, especially after seeing so many people like me.

    • I am sorry for the pain that you are going through. Unfortunately, it’s a chronic disease and you have to live with it. Most treatments are temporary and they havent found a cure yet. The pain is worse in the initial stages when you have the so called active implants but it generally gets less severe with time. I don’t want to scare you but please search lupron really well before you go for it because some of its effects are permanent. Just google lupron victims and similar stuff and go through. People have different experiences, some of them really bad but pls do your research. You are very young and it can be very bad for some people. I wish you all the best.

  80. I am 34 and wast just told 1 week ago I have Endo thru blood work. I do have a cyst in my left ovary. Can the test results be false? It would explain a lot of my un answered symptoms like migrains, horrible cramps, mood swings just to name a few. But this is all new to me and dont know what to expect.

    • I don’t think there’s an actual “endometriosis blood test,” but if your doctor checked your CA125 levels and they were elevated, it could be an indication of Endo as well as some cancers and other illnesses. The best, and only “real” way to test for it is through a Laporoscopy. Two of my three surgeries showed Endo, but only one time was my CA125 elevated.

  81. I am 25 years old and just had surgery yesterday… The doc told me I am stage two he said he found endo and costs and scars along the bowls and ovaries…. I told him I knew it wasn’t all in my head… I said this because I have gone for regular paps Since as long as I can remember and I have always told the nurse practioner that I had pain she never paid any attention… Always saying well periods aren’t suppose to be pain free… I would even go to urgent care for pain and they looked at me Luke I’m crazy… Well in April I had my Healy pap and something told me to schedule it with my real gyno and not the NP I am thankful I did he did an exam and said right away what he thought I had and the ball went rolling from there….. I am relieved to know it wasn’t in my head

    • Sorry you were diagnosed, but glad that you have answers! I hated when doctors make us think what we are experiencing is in our heads. Thanks for reading and commenting!

  82. Hi Ladies,

    I just wanted to write and say that there can be hope! A few years ago, I had a few misdiagnoses before finding out that I have stage 4 endo. It was scary and I wondered what type of future I would have and I feared pain, but I am happy to say that 4 years after my surgery I continue to get better and have less pain.

    The first time I had unbearable pain was when I was 22 on a study abroad trip, my right lower abdomen was in quite a bit of pain, what I always described as feeling like a tube was being stretched and pulled. I had ultrasounds, saw doctors abroad, and then again, when I returned home to the US and there was no evidence of anything. I even had all of the STD tests when I wasn’t even sexually active, so it was embarrassing. I didn’t have the pain again until 4 years later. Again, I saw my doctor, new doctors, was referred to an obgyn and was not diagnosed. Then I had the pain again when I was 29 and was treated for urinary track infections twice and each episode lasted about two weeks. What I did not realize is that I have a very HIGH threshold for pain, therefore, I did not know how badly I was feeling. Instead of feeling pain, I felt tired.

    At 31, I began having lower pelvic pain and this is when my problems escalated. I was treated for 6 urinary track infections before being sent to a urologist who confirmed I had not had a single urinary track infection after analyzing the samples. He said that it couldn’t be endometriosis due to the fact that I had regular, normal cycles and tolerable pain (i.e. normal cramping the first two days of my cycle). He said I had the classic case of interstitial cystitis, which ended up being false and really scared me. I eliminated all acidic foods and still had the lower abdominal pain, the only relief from pain was exercise. I lived 9 months this way, knowing something was wrong but not knowing who to see or who to trust.

    Finally, I was diagnosed after getting off an international flight in such pain that I really couldn’t walk. I went to urgent care and they confirmed that my appendix was fine so they sent me away with a pain pill that I had to go get at a pharmacy. I was doubled over waiting at the pharmacy in tears. It was difficult to walk out of there in so much pain and fear, not knowing what was wrong. I drove straight to my primary doctors office and stood crying to the receptionist, and they saw me on the spot. They ordered a catscan and the CA125 test. A cyst was found on my ovary and also suspicion of endometrial tissue. The cyst was actually obstructing my kidney and that was the cause of the pain.

    The CA125 levels were high, but this test scared me too because my doctor said that CA 125 indicates tumors in the pelvic area and that they would need to have a pathologist test the cyst during my surgery to rule out cancer. I was terrified, not knowing what the outcome would be. There was a chance that they would remove all cancer. I was in so much fear. My primary care doctor predicted that they would remove the cyst and maybe the ovary it was attached to; this was exactly the outcome.

    The surgery took 5 hours to remove not only the cyst and ovary but to remove excessive endometrial tissue found on my entire abdominal cavity. Upon awaking, my doctor had called in a prescription for Lupron. I was upset again, not wanting to take such a harsh drug that may cause bone density loss.

    My remedy for suppressing the endometrial growth was taking Yasmin continuously (3 packs in a row skipping the cycles until every 90 days, therefore having less periods, less chance of endometrial growth) however, I got yeast infections monthly. I tried this for one year before trying Depo-Provera, which I tried for another year but I had weight gain and depression. I tired the Nuvaring and the patch and I was allergic. Finally, I decided to try going off all drugs against my obgyn’s wishes. My primary care doctor supported and understood my reasoning and agreed to support my decision. I am happy to say I feel fine. I have just reached 1 year drug free and my cycle is not too painful. I do have pain on my lower right side where the cyst and ovary were removed, but it is a dull ache that lasts up to 1 week after the end of my cycle.

    Do not give up! Keep trying what feels and is right for you and your body. For me, I exercise and that helps me very much. I also eat very healthily, mostly a vegetarian diet with little dairy and no processed foods.

    • I am glad you found something that works for you. As I’ve stated before, what works for one person doesn’t always work for another. Exercise has been proven to help with blood flow and pain reduction. Personally, and I’ve written about it before, a diet limiting processed foods and meat has helped me as well. I’m glad to hear you are feeling better. Thanks for reading and commenting!

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  84. i jst want to knw how many chances r there to concieve after being undergoes laprascopic hysteroscopy…

  85. Nammo, I am going through the same thing and have been asking the same question. Unfortunately for me, i had stage 4 endo, it was really bad. On the good side, my tubes were clear and after my lapro, my doctor was positive. I have been on clomid foe a couple of months now and even though i now ovulate, i have had no luck. However, i am starting my first course of IVF later this year, With endo, IVF can be a really positive solution. I have 2 friends who both managed to conceive beautiful twins with IVF and one of them had had to have endo ops every year for about 7 years prior to that. There is hope for all of us, you just need to stay positive and realise that you could be in for an emotional ride. Ensure that your doctor is one of the best-my first doctor told me that there was no way that i had endo…i wasted almost a year with her. I am now with the top fertility specialist in the country and i am grateful for that every day!

  86. When I initially commented I seem to have clicked on the -Notify me when new comments are added- checkbox and from now on each time a comment is added I recieve four emails with the same comment. Perhaps there is a means you can remove me from that service? Kudos!

    • You should be able to remove yourself. I’ll see if I cam, but I believe this is something you will have to do.

  87. Hi! This was very informative! I can’t thank you enough! I’m from egypt and over here noone and I mean NO ONE has a clue what endo is! I suffered for years and was misdiagnosed so many time I started to feel like I was going insane until I finally had a exploratory surgery and was diagnosed with stage 4 endo. It almost felt like a relief despite the bad news.
    I just wanted to put some love out there and wish all the lovely ladies here a pain free life.
    Xxxxx

  88. I had been diagnosed with endometriosis when I was 30. Had my womb removed in few weeks time after diagnosed.
    When I was 39, my one ovary has been removed and I am now 46, I’ve never been to my gino again, and never had pain again. He wanted to see me every year, but I gave up. I am so thankful for not having pain anymore. I believe I am healed through the blood of Jesus Christ.

  89. jackline koki ndawa

    jackline
    i suffer from endometriosis itsnot easy bt with your visuals on it i got to understant what it is n also the diet you have reccomend is very helful

  90. dear endochick,i am also diagnosed endo on my right ovary 5.cm 2 months ago,i have 1 son 14 yrs old.my question is if this will affect when u get sexual intercourse?because i had my 2 trans-v lately it gets 6 cm now pls reply.thanks

    • Madel, little confused on your question. Hope you don’t mind me replying to you. Are you asking if your endo can affect intercourse? It can indeed. I couldn’t even have intercourse without breaking in tears it was so painful. I just had a hysterectomy a month ago, only have my right ovary left so I don’t go into menopause. My endo spread everywhere. Tubes, uterus, left ovary was worse than the right, my bowls, even the inside of my uterus walls. Had fybroids too. Wish I had advice for you. I dealt with the pain for 17 years and was fortunate enough to have one healthy pregnancy. My son is now 2. My second I delivered stillborn. Any advice I can give is DO NOT take Lupron…it was 6 months of hell for me. Take care.

  91. Hi, I’ve written before stating my pain had improved, but now I found out I have another cyst on my left ovary (I had my right ovary removed with cyst). This scares me because I do not want to go into menopause. I read that acupuncure can help. Is this something you know about and could recommend where to start looking? i do not eat processed foods and exercise and that seems to help but I’m not sure what else to do.

    Thanks!

    • Nadia,

      I know a lot of women who have found relief through acupuncture. I can’t have it, though, but I recommend you head over to chronichealing.com. She gets it all the time for various conditions. She swears by it as it’s really helped her. Good luck.

  92. Hello endochick,

    This blog has made my night! All of the stories sound like “my story”. I have suffered from extremely heavy and extremely painful periods since 2002 (after I had a c section with my son). The bleeding would be so bad that I would have clots the size of my fists every menstral cycle, painful intercourse to the point of tears, and painful cycles that would have me bedridden and popping pain medicine as if they were candy.

    June 17th I was in the ER with the worse pains I have ever had (worse than labor). I was nauseaus, couldn’t walk, and doubled over in pain. After ultrasounds and transvaginal ultra sounds it was determined that I had a 10 cm and 5 cm cysts and was immediately admitted to the hospital and rushed into surgery. The surgeon couldn’t do the operation laproscopically so she had to open me up. I lost the right ovary and tube and spent 6 days in the hospital due to the infection. It was then that I was told I had an endometrioma and stage 4 endometriosis with lots of adhesions, fibroids on the outside of my uterus and polyps in my uterus…may even have adenomyosis (can’t diagnos that until the uterus if out). FINALLY a diagnosis to the pain and the reason why I have been unable to conceive the past 5 years. . I am now 6 weeks post op and the doctor put me on birth control. I am OVER the pain and OVER the heavy bleeding (it even ruined my cruise to the bahamas with the break through bleeding…to the point I had to go to the ER while docked in the Keys). My doctor has suggested a hysterectomy. I’m 38 and yes would love more children and have always wanted more children but never became preganant and am happy to at least have had my son 11 years ago.

    My question is should I go for the total hysterectomy? I have one ovary left and her suggestion was to take that so not to risk another chocholate cyst forming becasue they thrive on endometiosis. I dont’ know about the instant menopause…does that outway the painful periods, trips to the ER, missing work due to heavy bleeding and pain? Is it true that endo can still come back after you have your ovaries and uterus removed? How is that possible?

    • The decision to have a hysterectomy is a personal one that should be made after careful research and discussion with your personal physician. Remember that the operation is irreversible. While hormonal therapies that stop periods do have side effects – that some women can or cannot tolerate – are reversible. They can at least buy time until the women enters natural menopause. When a young woman has a hysterectomy for endometriosis, it is advisable that she abstain from taking ANY hormonal replacement therapy for at least 6 months. This is starve any remaining endometriosis in the body. These implants can hide EVERYWHERE. Autopsies have found implants in the brain, even. The closer you are to natural menopause, the easier you are LIKELY to handle to this transition without hormones. But it’s still going to be rough. Your body is going to go cold turkey! If you’re young, this is going to be really hard. My doctor said it would be the hardest thing I’ve ever done. I decided not to do it. If you take hormone replacement before the 6 months is up, or even after because that number isn’t a magical guarantee, the implants will thrive on the estrogen and grow. You can still get pain. I know a woman in her 40’s took early hormone therapy 2 weeks out from surgery, ended up with severe pain 5 months out. About a year later they finally worked her up for a gall bladder and decided to do a lap and guess what they found… all over her gall bladder… endometriosis.

      It’s a gamble. A personal one, Terri. How much pain are you in? How old are you? What are your options? Good luck and GET A SECOND OPINION.

      • Thanks Endochick. I appreciate the reply. Yes, this has been a very long and confusing journey for me. I am 38 years old with one 11 year old son, that was born via c section which was the beginning of the scar tissue problem which led to where I am today. (I dont’ remember painful heavy periods prior to this). I recently went to have a 2nd opinion from one of the top Gyns in my area that specializes in endo and da vinci robotic surgeries. After reviewing my medical file he agreed with my first doctor that I have stage IV endometriosis and didn’t think he could do the surgery laproscopically because of the extensive adhesions and scar tissue that I have (which is why they had to open me up in June). The endometriomas that I experienced (10 cm and 5cm and caused me to lose one ovary/tube) do have a chance of coming back. Agreed with putting me on birth control to stop ovulation to give me relieve. I am terrified of going into menopause cold turkey and am having a hard time making my decision because the pill really has helped with the chronic pain and has made my period much lighter (only 6 days versus 8-10 days). So I guess I am just coming to terms with the fact that I will not have any more children but am so thankful that I was able to have one and realizing that I have an incurable condition and what is the best way for me to manage pain and live a life not being ruled by endo. I’ll keep you posted on my decision.

  93. Hi,
    I was wondering if anybody could help/offer advice. I had a laparoscopy in April this year and was diagnosed with Stage 4 endometriosis, kissing ovaries with bilateral endometriomas, blocked right tube buried in adhesion, obliterated Pouch of Douglas. They only drained the cysts during the surgery. I have also had pretty much daily bleeding since last October. I’ve had one opinion from a fertility specialist – to take the depo provera shot for 8 weeks then launch straight into IVF. The NHS gynaecologist’s opinion was that I should have a laparotomy to remove all cyst tissue, as my ovaries and eggs are probably severely compromised and then try IVF, or to make a decision for quality of life and try GnRH therapy after the surgery, or look at total pelvic clearance. This is a lot of information to process and in the meantime I feel that the endo may be getting worse. I suffer badly from constipatiion, back ache and cramping outside of my period, pain with bowel movements, intercourse, full bladder, emptying bladder etc. I’m 38 and would dearly love to have children. I just don’t know how you’re meant to make a choice if the Doctors can’t agree. Has anyone been through anything similar and what/how did you decide? Forgot to mention I’ve been suffering with bowel and period problems for 8 years without being diagnosed, even though I kept going to the Doctor.

  94. Stuff I forgot with the first post:

    I don’t qualify for NHS funded IVF as my partner fathered 2 children in a previous relationship. So I’m trying to weigh up if the chance of success with IVF is worth me 1) taking on a debt to cover the costs and 2) postponing treating the endometriosis. I saw my GP yesterday, she said that whether for health or fertility, I am going to have to make a decision about a course of action sooner rather than later, but felt I may end up having to go through the cystectomy laparotomy.

    • Wendy – sorry you don’t qualify for the NHS funding. What I can share with you about health loans is that the interest rates are hefty. I had one and it took years to pay off! So whether you want to venture down that path, that is something you need to research before getting into it. And discuss with your physician how surgical treatment may decrease chances of pregnancy vs. Remaining in pain and how that can increase or hinder those chances.

      • Hey, I got pregnant when I was 16. I lost it to cysts. Ever since I lost it(I am 20 now) I have had cysts like crazy on my ovaries. The last one that I got checked out was 5.7cm by 4.9cm. They just said come back after you have your period and we will do another ultrasound. I went back and they said it was gone. Since the age of 16, I have been experiencing horrific pain. During my period, after, before, after sex the one night, I couldn’t move. I got rushed to the hospital and they gave me pain killers and sent me on my way. I am still having those pains 4 years later. (Also, when I lost the baby, a month went by where I jut would not stop bleeding. I went in and the same surgeon had told me that he may have punctured a whole in my uterus.) when I have my period, I can’t stand, sit, walk and I cry the whole time from the pain and no matter what I take, it never seems to go away.
        I started reading up on what it could be and endo has all the symptoms and everything that I have been having for 4 horrible years. I just don’t know what I should do. I’m scared I may never have children, I already have depression. And to add on to it, cancer runs in the family.
        I read all your stories and I am very touched to hear that there are ppl out there that may have the same thing I do.

  95. Pingback: My Battle with Endometriosis and Migraines - Hormones Matter

  96. Hi everyone, I am 23 years old and have had alot of surgeries due to stage IV endo and adeno as well as pcos. My most recent surgery was the beginning of september to remove my right ovary and my appendix. The doctors had alot of trouble during the surgery and said they can no longer do anymore surgeries to help me. I was wondering if anyone else has been through this? Whats next for me? Do I have anymore options? Thanks

  97. Pingback: Endometriosis and Neuropathy - Hormones Matter

  98. my name is meagan and i found out i had endometriosis when i was 13 i was doubled over in pain and my parents thought i was just trying to get out of going to school . I have had 4 surgys now on this from the size of grapefruit size and baseball size chocolate cycsts. i now 22 and just got married 9 months ago and found out i am in stage 4 of endo . I suffer all the time and sometimes i go two weeks at a time in so much pain i live in the bath tub and no pain medicine will touch the pain. I get so depressed and just want to live a normal life . I have went to many different obgyn drs who think that the pain was all in my head and dont understand how much it controls my life. I finally found a Dr. who wants to do a full hystorectomy on me. I am going to try depo lupron as a last resort its just nice to hear everyones storys so i feel like i am not alone in this. me and my husben want kids and im scared that it might never happen for us. I cant keep a job every job i get i end up getting let go because of my health i just feel hopeless and scared that i will never get better or live a normal life at the age of 22. and if getting the hysto really is the best choice to make and best way to get back to being a normal young women .anyone who has any advice of how they over came there depression and how to get threw that depo lupron without running my husben off lol please at this point i want any advice i can get. im in despriate need of advice. PLEASE HELP.

  99. How do you know what stage you are in? I had a burst cyst ON my ovary which was removed, and have endo in my ovary – causing my ovary to be larger than my uterus.

    I dont think there are sporadic growths? The surgeon who did the cyst did not report it in my file – didnt send cyst to lab etc – said i had appendix on my file – he verbally told me about the cyst.

    After 2 months of pain went to gp who called surgeon + sent to gyne. Gyne said I have endo. Anywhoo – point is if i dont have lots of sporadic growth what stage am I in?

    • I’m not your doctor, so I can’t comment on your staging. But since he did say you have endometriosis, I would ask how closely the doctor examined your pelvic structures for implants. If the surgeon is unfamiliar with endometriosis, you may need a second look to get a clearer staging. Of course, treatment is the same regardless the stage. You treat the symptoms the same whether it’s Stage 1 or 4.

  100. 15 yrs ago my mother was diagnoised with endo…8 yrs after she had me..im 23 today. it tookl her 5 yrs after the surgery to get preg. even after the docs said she was infertile from the endo. she still managed to have one and proved everyone worng…..like i said im 23 my daughter is 3 and ive been havein pain as well…sex hurts and sometimes jus standin sitting hurts and bends me over in pain…i spoke to my male gyno about it and suggested maybe it was endro. and he said if it was that he wasnt gonna do anything about it till i was done having kids…even tho i was in pain….and if i did have it it could cause me not tohave kids….I told my mom and she was livid! she made me find another doc. so i did and she did a pap and touched my uterus gently and the pain shot me thro the roof!!! she told me that for me to be in pain for 2 yrs that we needed to do a laprisopecal surgery and see what we find. so Next week on the 18th i have my surgery to see if i do have it….im nervous but ready…I know i can do and make it thro anything as long as i have God my husband my babygirl and mom beside me keeping strong! WISH ME LUCK!

  101. Superb post however I was wondering if you could write a litte more on this topic?
    I’d be very thankful if you could elaborate a little bit further. Appreciate it!

  102. I dont have all the details but a person I know has either endometriosis or endometrial cancer and. The person explaining it to me said it could spread through her body and adhere to her organs. She was disgnosed a year ago, refused a hysterectomy but has had to have two big operations since tgen and has severe pain. At this rate of proression i was wondering what tge prognosis is as far as life expectancy is, she will be 40 in a coupke months.

  103. I am so happy I found this blog. I have a similar story to many of the above stories and it is comforting to know I am not the only one. I started my period late in life at age 16 and didn’t have any cramps to accompany it for the first few years. At age 18 I had an appendectomy and immediately following that and still up to this point my cramps with my period have become progressively worse! It is to the point where I am bedridden the whole first day and most of the second day. I am in tears, feel dizzy when standing, have passed out, have many bathroom issues… it is just two days full of extreme pain. Tylenol, Midol, Ibruprofen don’t even touch the pain I go through – in fact once I was prescribed Vicodin for a different reason and had some left over so I decided to use that while I was at home – I could still feel the pain through that. I have a heating pad at my bed side every night. Not only when I have my period but all the time I have stomach pain that has not been diagnosed yet. I have had 3 colonoscopys and an endoscopy to look for chrones or celiacs but they found neither. I have constant back pain, almost daily headaches, and pain with intercourse. Finally I found a new Dr. after years of tests that did nothing for me and a Dr. that just didn’t seem to listen because I’d have to explain my story over and over every time I met with her- like she couldn’t remember anything or at least make some notes in my file. So this new Dr. thinks I have endometriosis and wants to do a laparoscopy in March. I definitely want to go through with it to see what things she can find or do for me. However, I don’t have the best insurance. Does anyone know the average cost of a Laparsocopic surgery? I am now 27 years old and after almost 10 years of extreme pain I can’t think of not going through with the surgery- but I fear they won’t find anything once again and then I will be paying off yet another giant bill. Any words of advice or opinions would be greatly appreciated. I feel I am going through this alone because everyone I talk to about it has never even heard of it before-to them because it is such an unknown disease they feel it is not as bad as pain as I make it seem. They are starting to think I am a hypochondriac because of all the tests my previous Dr. had me go though that showed no results. PLEASE, I am begging for any words of wisdom or advice. I can’t go through with this pain any longer!
    Thanks!

  104. Pingback: The Stages of Endometriosis: Part Two | Endometriosis: the silent life sentence

  105. Pingback: Getting Much Needed Surgery for #Endometriosis | Amanda Michelle Jones

  106. Staying healthy requires some work.

  107. I’m a 28 year old female with stage 4 endo. My first surgery was in 2009 to remove 2 chocolate cysts from in between both ovaries and Fallopian tubes. I’d had horrible heavy painful periods since I was 10 and in summer 2009 I buckled over with abdominal pain. After six months of testing and scans the doctors finally put me on for surgery but said removal of any organs was out of the question due to my age. After the operation they started me on only birth control, and said I was clear and that it would take many many years for any adhesions or cysts to come back. I never had tons of solid abdominal or pelvic pain other than the periods and at the time I was prolly between stage 2 and 3. In June 2011 I was rear ended and although walked away from the accident (luckily) still needed an MRI after months of physical therapy. On 11-11-11 I had the MRI done of my mid and lower back, and the scan showed a large mass on the lower right corner of the image. The Radiologist didn’t bother to wait to send the results to the other doctor, but pulled me into his office and said ‘the good news is that your spine hasn’t been severely damaged, but the bad news is that you have a tremendous mass on your uterus or ovary. I’m not able to scan you again but you should notify your doctor immediately. It could be a number of things.’ I knew right away that theaters had returned. I went to my doctor (different than the one who had done my first surgery) with the images and medical records. Fast forward to November 2012 to my second surgery where a team of 4 doctors had to scrape and burn ‘countless’ adhesions and removed one ovary and one tube that had been smashed behind my hip bone by the tumor/cyst/mass and remove part of the other tube and ovary..and here I am now on lupron, elavil, tramadol & Motrin every day. I begged the doctors to take out my reproductive organs and they said I was still too young and if I ever wanted to birth a child then I’d be out of luck. I had told them I had wanted to adopt since I learned about it as a child. They were adamant and I just wanted things done so I cooperated. I was greatfull that they had a team of experts and an oncologist come in and kept me in the hospital for six days to make sure I was okay, and I’m happy albeit scared of the treatment plan & pain management I’m on, but it’s still a lot. My step dad gets confused sometimes and when he askes me about it he says it sounds like a cancer, and I say it is not the same but like a cousin. I’ve had doctors tell me it can be worse in the sense that there is no remission and little understanding, but as time goes by and people speak up about it they can find out more. I’m 28 now and looking to try to get it under control by my 30’s. just trying to stay strong & all I can say to anyone else is even if endo gets you physically, don’t let it get you mentally! It got me for awhile and I was like, ‘oh no! You’re not gonna bring me down!’ Sounds silly but a positive mind sometimes can help wonders. P.S. thanks for the post and blog, I’ve been thinking of starting one as well, more for myself or anyone who happens to stumble onto it – kinda like I did yours. : )

  108. Good wway of describing, and nice paragrah to obtain information concerning my presentation topic, which i am going
    to deliver in institution of higher education.

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