Endometriosis is an invisible chronic illness. It’s invisible because it’s internal; it affects our inner most organs, our ovaries, uterus, fallopian tubes, and pelvic cavity. It can slither around to our bowels and invade our bodies – a noxious, vile demon on a painful destructive warpath. And the only outward signs we have to show the world of our illness are our laparoscopic scars and tears. If we’re lucky, we find a wonderful surgeon who can remove the tissue and place us on a treatment that successfully keeps it at bay, giving us relief for sometimes years at a time. But there is no cure, and we know this. Oh, how we know this.
And too often we may find ourselves curled up on our couches in the middle of the night, crying into our throw pillows, hugging heating pads to our tender stomachs desperately waiting for the pain medicine to work. Too often, some of us bleed ourselves into anemic conditions, requiring even more medication to make us feel normal. And all of this – this surviving with an invisible chronic illness that no one else but those who have it, is exhausting.
Because our husbands, our boyfriends, and even our non-endo friends, cannot relate to our pain, we can sometimes feel isolated by it. The pain from endometriosis and the side effects from hormonal medications can wreak havoc on our careers and relationships; and the surgeries, which can sometimes be many and costly, cost us to lose work, lost time from loved ones and daily activities, and possible social stigma. The only ones who truly understand how someone with endometriosis feels is someone else who has endometriosis.
As someone who has endometriosis and has had it for years, I find that I am getting an increased number of searches for “endometriosis suicide” and “endometriosis and suicide” very alarming. Never should your pain be so bleak that you feel your only way out is through suicide. If you, or someone you know, is considering suicide (because of endometriosis pain or any other reason), PLEASE seek help! The number to call is: 1-800-SUICIDE
When I was a teenager my cousin committed suicide. She left no letter and no reason. But it wouldn’t have matter if she had. The devastation left in the wake of her suicide left holes in the hearts of many family members who still cannot look at her picture without tearing up – and it’s been over ten years.
That is why I am writing this post today to urge anyone searching “endometriosis suicide” to seek help. Anyone who believes the pain is so intense they can no longer live with it – call 1-800-SUICIDE. If you’re newly diagnosed with endometriosis and fear you will never have children, do not lose hope! There are many women with endometriosis who are not infertile. But, if you have endometriosis and have struggled with infertility and are losing hope, please check out these resources:
RESOLVE – Stepping Stones – ASRM: Mental Health Professional Search
Endometriosis: the silent life sentence 
Thank you for the awareness post. It is sad to realize that some are so isolated and in so much pain that they have suicidal thoughts.
Not related to endo, but my husband’s grandfather committed suicide this past November and the devastation of this tragedy is more than I could ever imagine.
You’re welcome. Thanks for stopping by and commenting. The fact that the term “endometriosis suicide” even comes up in how people have arrived at my blog made me aware that this post had to be written. I recieved the final one this morning that linked from a site that had such a sad story of a woman who’s boyfriend had left her, she lost her job because of the pain, and she was facing the reality of possible infertility because of endometriosis. Seeing that account was the final straw. This post had to be written.
Sorry to hear about your situation. Suicide, no matter the catalyst behind it, is truly devastating for those left behind. Any awareness we can provide through our blogs to draw attention to the matter, the better.
Yes, thank you indeed!!!! I hope no one ever feels that hopeless and desperate for a way out. I had a guy in our church commit suicide after we all left for college. It is SOOOO devastating for those that are left behind. And, devastating to think that someone would feel that low. I can’t believe there are so many searches; even one! That literally makes me sick.
Allison,
Endochick and I get daily searches on our blogs on “endometriosis and suicide”. Yesterday, it was the most common search phrase in my blog stats.
This is why we’ve been blogging about it and why we posted the suicide prevention hotline number on our sidebars.
Jeanne
Endochick,
First, let me say again how sorry I am for your pain and that of your family members regarding your cousin’s suicide. It is very tragic. I was also aware of Alicia’s husband’s grandfather’s suicide in November. I am saddened to hear that Allison too knows someone who committed suicide. Very sad. 😦
Sadly, the vast, vast majority of people who commit suicide are found to have had untreated depression. (I have done a fair amount of reading on the topic and the stats are just astonishing. Dr. Kay Redfield Jamison’s book on the topic of suicide was mind-boggling to me). Needless to say, depression is a treatable condition. (Yes, it can at times be complex to treat but there are treatment options available that can make a big difference).
As you and I discussed recently, I too have been getting alarming search strings that have landed people on my blog such as “endometriosis and suicide”.
What is even more alarming to me is that since I published my mid-December post on this subject (National Suicide Prevention Lifeline), I have been getting DAILY hits on this subject on my blog. DAILY!
While I am fully aware that this is a very bad time of year regarding suicide rates, I have been taken aback by the fact that my blog is getting DAILY traffic on this topic. It makes me sad on many levels.
Our society stigmatizes suicide. The way it is covered in the media is part of the problem. Few people understand that the suicide cases they see on the news, typically, are not representative of the majority of suicides that are committed. (Long story… I won’t get into a media analysis).
Chronic illnesses have been tied to depression in study after study. Depression has been tied to suicide and suicide attempts in study after study.
For me, daily traffic on search strings such as, “endometriosis and suicide” just underscores how profoundly endometriosis effects patients and how important it is to support them, increase awareness, and refer them to appropriate help (help managing endo symptoms AND help managing suicidal thoughts and/or depression when appropriate).
Needless to say, no blog can fulfill that role (providing the actual professional help). However, we can use our blogs as a tool to reach out to readers with information they can use to get appropriate professional help for their symptoms.
Hopefully, posts such as this will help get the word out to endometriosis patients (and others) that there IS help available. There is no shame seeking professional help… whether it be therapy/counseling, medication, both (studies show getting both is most effective), support groups, etc.
Sadly, our society stigmatizes mental illness to the point that people fail to seek treatment for fear of being judged, misunderstood, “labeled”, called names, discriminated against, etc. The fact is that seeking help for depression can vastly improve quality of life.
Unfortunately, “health insurance” companies have a long history of discriminatory practices (i.e. covering physical illnesses while denying mental health claims or covering them at 50% co-pays). Mental health parity laws need to be strengthened nationwide so that no one ever lacks proper health care because of such discriminatory practices.
Thank you for posting this!!
Jeanne
P.S. Thank you for including all of the resources you did. I know Alicia’s Yaya Stuff blog has been extremely helpful to SO many infertile couples!
Thank you for the thoughtful comment, Jeanne. This was one of those posts I wish a blogger would never have to write. Hopefully the resources I listed can provide help to those in need and encourage another way besides suicide to deal with the situations they face.
Depression and suicide is a growing problem that does have a stigma. That’s sad. Before society can change their outlook towards those with mental illness though, the insurance companies really need to evaluate their coverages. I know my insurance offers excellent copays for doctor’s visits and dental coverages, but for mental health therap one will pay $100 dollars a session with the insurance covering the remainder. Then, the patient is only allowed 6 sessions per calendar year. Yes, that’s right – 6! Alarmingly depressing in itself. How can someone with a mental illness obtain treatment with 6 sessions? That needs to change.
Endochick,
Six sessions of “coverage” per year isn’t coverage at all. It’s a joke. It’s all very sad.
Jeanne
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It’s nice to know I’m not the only one that feels like I’m being eaten alive 😦 I’m currently on a Lupron treatment that is putting me through menopause in the attempt to stop “feeding” my endo… I hate it… People don’t understand “cramps” and why you are so sick…
Elizabeth,
You are NOT alone!
Jeanne
I was diagnosed with endo at 26 years old…I was able to have a pretty decent life living with endo and having surgeries, until I had my 8th surgery at 46, exactly 20 years later. …There are still no new treatments for this horrible life stealing disease…
Lost my job, husband and health insurance…I have no family support as no one believes that I am really sick even though I have had multiple surgeries…My pain clinic doc does not think or believe the surgeries and the endo are capable of causing my chronic abdomina painl…The more pain I endure and the longer my pain exists the more desparate and cranky I feel. I’m afraid that I will not die fast enough…I simply cannot continue in this pain for the rest of my life….I never thought I would give in, but this chronic pain is torture…
I know I will pull myself up again, but we must stick together and help one another….And I don’t see a lot of kindness out there in the world where I live….
Endochick,
I hope you don’t mind if I chime in… I know you’re swamped now.
Elizabeth,
I hope you get some relief soon!
Michelle,
I came across your comment just now (as I just wrote a related post on my blog a few days ago). I was unable to get your site link to work but wanted to let you know that I’m sending kind thoughts your way!!!
I’ve had 7 surgeries myself and I’ve lived with endometriosis for 28 years. Hang in there!!!
Jeanne
I’m dealing with endometriosis and depression myself. If there’s anyone else out there like me, I think a lot of times chronic illness sufferers rationalize their depression away instead of getting it treated—I’m depressed because I feel awful, I feel awful because I have this incurable condition. There could be some truth to that, but its probable that the mental state and physical state are multiplying each other.
I also think its difficult with endometriosis because it’s hard to diagnose, and it can impact someone so many ways. As you mentioned in another post, it’s so difficult to find understanding in friends and family if they aren’t going through the very same thing themselves. It’s hard to ask for help and when you do, its frustrating when no one can quite understand.
I’ve already had one surgery and I feel overwhelmed because I realize I’m still having issues and will probably need surgery again in the future.
classyfiasco,
Having a chronic illness like endometriosis and also having depression is not at all uncommon. There are studies that show it can become a vicious circle with each feeding off the other (i.e. pain resulting in depression, depression can result in physical pain).
Medical attention for depression can be very helpful. Our society doesn’t always make this the easiest thing to do… but professional help can make all the difference in the world.
Please hang in there! I’m sending positive energy your way!
Jeanne
Pingback: Endometriosis, Depression & Suicide « Endo • Depression • Life
Thank you for addressing this. Just knowing that I’m not the only one who has performed this search online makes me feel less isolated.
Erin,
You are far from the only person who has searched online about this topic. Endochick and I have received many searches on this topic. Please know that you are *not* alone and that there is a 24/7, free lifeline number posted here on Endochick’s blog and on mine as well. This is a topic that she and I have written about quite a bit.
Take care!
Jeanne
I feel like my life is a constant struggle. I was diagnosed with endometriosis when I was 21 via a laparoscopy. I was told that I would still be able to have children and that birth control should keep the pain under control. They were right I missed two doses on the birth control and ended up with a yes on my pee stick. I was SO excited! I couldn’t wait to tell my husband. Four months went by with no complaints, until on night I started bleeding. My husband rushed me to the ER. But it was to late my baby was gone. I thought okay not this time, but next time I will carry to full term. Three months after my miscarriage I was back in the ER with pelvic pain but only this time I had blacked out a work because the pain was so intense. It turns out a cyst had ruptured and was bleeding into my abdominal cavity. They did emergency surgery and I lost both fallopian tubes and ovaries due to infection. I was devastated, I couldn’t believe that I would never be able to have biological children. I have had two surgeries since then to remove lesions. I am still not pain free even with lupron. I have one more surgery coming up and that is to remove my now infected uterus. I feel like death is knocking at my door everyday telling me to give up, I’m barely hanging on these days and my poor husband has been by my side through all this. It pains me even more to think that he will never see the sweet face of our child. God please help me stay strong, do not let this life snatching endometriosis take me because right now it IS wining the battle:(
If anyone is feeling alone or isolated, please e-mail me anytime. Would love to make friends who suffer from this pain, because unless you suffer from it. You can’t possibly know how it feels & no it’s not in our heads. I feel your pain, I suffer from Endometriosis too and totally understand your fustrating. I have three kids and the pain slows me down & can get so fustrating. I have cried many nights to myself because I just want to feel “Normal”. Usually by the end of the day, I feel so tired and can barely move and get wait to get to bed & use my heating pad. It gets to you emotionally, I really hate my husband & kids to see me in bed all the time. Sorry, for the long message…please don’t ever feel alone. You can e-mail me anytime and I may even give you my number so we can chat. Most people who see me think, I’m young and full of energy…if they only knew my pain. I suffer in silence most of the time, only my family really knows that I go through. You will always have a friend…please e-mail me. Lots of Love : )
Endo Sister,
Patricia (Look Me Up On Facebook)
I was diagonsed with this crap at 12. Which NOBODY could tell me why I was in pain. It took one female doctor to say you are not crazy which other doctor’s had said to my mother. I was put on depo which caused me to gain weight and helped me to become sudicidal. IT IS HELL NOW!! I’m in pain all the time which has gotten worse I can’t work, It’s hard to go to school and pretending i’m fine is hard as hell. for two days I was stuck in the bed because I could not move without pain. I feel like a bother to my husband and nobody gets the pain. It’s hard I’m only 24 and it seems to be getting worse. I just needed to vent I guess sorry about the long post.
onepain,
You are NOT alone. There are many fellow patients who “get it” and really, really care!!! If you are having thoughts of suicide and live in the U.S., please call 1-800-273-TALK and talk to the trained staff on the hotline. If you are outside the U.S., please refer to one of the hotlines listed here: http://www.iasp.info/resources/Crisis_Centres/. I am so sorry for your pain. There are MANY people who care and “get it”.
Peace,
Jeanne
onepain,
Also, I’m sorry that a Dr. told your mother that you are crazy. This is just unconscionable. Sadly, there are a fair number of doctors out there who chalk endometriosis pain up to being “crazy”, neurotic, or “hysterical” (see the root word “hyst”? The stigma associated with endo is rooted in many things, including sexism. The notion of endo patients “just being hysterical females” still thrives with certain doctors with a caveman or cavewoman mentality). I’m glad you found another doctor who took your symptoms seriously.
I have lived with endo for 28 of my 41 years. For me, it HAS gotten better! (I had 7 surgeries over the years and there were many times I did NOT see hope for it getting better). There ARE other treatment options besides Traditional Western Medicine’s “drugs and surgery”. There ARE numerous “alternative medicine” options that provide symptom relief to many endo patients.
Hang in there!!!
Jeanne
Thank you for blogging about this. I haven’t been diagnosed with it officially but my doctor is quite sure thats what I have and thinks that I should do the diagnostic surgery. The pain came out of nowhere earlier in the summer and I lost my summer job and has been to the ER multiple times just to be given strong pain meds through IV. Im at the point where I’m already tired of seeing doctors, no one knows whats wrong with me and I have no one. I’m a student far away from home at school and i have no support and I’d rather just die then go through this pain. Its so emotionally tolling as welly as physically tolling. I feel selfish even complaining considering many of you been suffering for over 10 years and I’m just in the beginning stages.
My left ovary is fused to my bowels. My pain is overwhelming at times. They put me on depo to stop my extremely heavy periods, it caused me to have my period for 78 days straight then a two week break from it and then it came again for another month and a half. The fatigue is crazy. The pain, unrelenting. I have not had a “plan” of suicide but I have had thoughts that if I were to ever need lifesaving medical intervention..I would tell them no. I wouldn’t even mind if I was in a horrific accident that resulted in immediate death. I want them to remove my uterus and ovaries. They won’t do it for fear that it will put me into early menopause….Give me a break! I welcome menopause! Hell, they haven’t even done the laproscopic surgery to diagnose me…they have diagnosed me through the MRI that showed several masses throughout my body and cysts in my ovaries. My uterus is so thickened that my doctor said that the opening is smaller than the ball on the end of a ball point pen. I don’t want to go on anti depressants. I don’t feel that I am depressed. I am just angry. I just want someone to do something for the endo and it needs to happen very quickly. My husband was supportive up until all the bleeding. Bleeding=no sex…the support is gone. I go to work everyday but my ability to do my job grows less and less. I know I can’t fake it forever. Job loss is next. It took me an hour to shower today because of the pain and it made me think to look up endometriosis/suicide rates because I am sure that there are women out there with worse symptoms than me and I don’t know how they do it! God bless my endo sisters out there and all who fight the invisible diseases that are plaguing us. I also have fibromyalgia which is not helping the situation. Pain from the inside out! Aye carumba!!!Need some relief soon from somewhere!
I am in pain right now, I have not been diagosed yet but I believe I have endometreosis. I tell people I get a really sore lower back when Im on my period. No one understands, and my husband says, it probably because I look normal. I do look normal when I dont have my period. I get sore when ovulating and during my period, I am on day 3 of my period and the pain is severe. I take ibuprofen alot but its started to stop being effective. I started getting this after I had my second son who is now 6. I am going to try and get an appointment with the doctor tomorrow. I have suffered for so long and I dont know anyone else with this problem. Its ruining my life 😦
I am to the point that i want die because of the pain. No doctors will help me, they assume I am drug seeking. I can find nothing over the counter for this pain, I think something is wrong with my intestines too, because I’ve been having bloody diarrea so I don’t want to try advil for fear it will hurt me more. My husband doesn’t care, it’s terrible. The heating pad isn’t helping. I cannot go to a doctor for help because I have already been accussed and dismissed as a drug seeker. I don’t know what to do…
Don’t give up! You know you’re not a seeker and that is what is important. You are not alone!! Our spouses can’t understand what we are going through. They don’t have the right parts to begin with! And this disease can be so isolating. Don’t give up. There is hope. Talk about and seek out another doctor and another until one listens!!
Is there anything holistic that would make the pain go away???
Some have found exercise, changing their eating habits, biofeedback, and talk therapy to help cope with the pain. But none of these are likely to eradicate the pain completely. I hope you find something that works for you.