From a Family Member (who has no idea I do what I do, and that they just became ‘a post’):
“You can put ice on your belly and it helps endometriosis?”
Now, let me explain why I chose to take this innocent comment and turn it into a post. Nearly every day I have a post from 2009 that gets a hit. Sometimes a few people stumble upon it. Sometimes more. This is usually because someone’s emailed our Facebooked the post. The post then? Put Ice On It?
This was a post where a Twitter follower (back in those days) told me to swap the heating pad for an ice bag. For the record, it works.
Why?
It numbs the tissue, at least temporarily. Think of it as Lidocaine for your pelvis.
It stops the pelvic nerves from sending pain signals. Again, at least temporarily.
Alternate cold therapy with heat, which alters the pain signals being sent to the brain (i.e. your brain is focused on heat not pelvic pain), for best results.
Of course, thermal therapy will only get you so far in treating endometriosis pain. Some people have had great success with diet modifications, medication, acupuncture, and medications. Always talk with your doctor, though, before trying a new medical or diet.
Does having endometriosis cause pituitary tumors? – L
L,
While having endometriosis doesn’t guarantee you’ll be diagnosed with a pituitary tumor, or another endocrine tumor, it does increase the odds.
First, some basic background. Endometriosis is an endocrine disease causing aninflammation in your pelvic cavity (and any where else you have implants). Because these implants bleed with the monthly release of hormones but are unable to shed from the body, the contents remain inside. That’s where they fester, the implants continue too grow in size and depth each month and cause varying degrees of agony.
There’s always a concern that endometriosis may turn into endometrial cancer — or cancer of the urine lining. And while some studies are still arguing whether endo women need to be concerned about uterine and endometrial cancers, a a study out of Denmark says there’s real concern for endocrine cancers. Researchers studied over 114,000 women with endometriosis. They found women were more likely to develop “brain and endocrine cancers, such as cancers of the pituitary or thyroid glands, but a reduced risk of cervical cancer.” according to HealthyWomen.org.
And of special importance:
The Institute of Cancer Research’s Minouk J. Schoemaker published in 2009 that women who have gone thru surgical menopause, or early menopause, are at an increased risk for pituitary tumors. Women with endometriosis often resort to partial or full hysterectomies due to excessive bleeding (menorrhaghia) or unmanageable pain (dysmenorrhea). Shoemaker also found a correlation between women who had given birth before turning 20, and later being diagnosed with a pituitary tumor. He does stress, though, that, they “are usually benign but are associated with substantial morbidity.”
Just because you have endometriosis doesn’t mean you’ll get a pituitary tumor. Tumors of any kind are not something to mess around with. Speak with your doctor about your personal medical history, and chances of getting an endocrine tumor.
** If you experience a combination of these symptoms, see your personal physician. Remember, this blog is for educational purposes only, and is not intended to diagnose, treat or replace your doctor. **
I’m way behind on these, so please be patient as I catch up on “Ask Endochick” posts. As always, if you have something to contribute, leave a comment! You never know who you may help.
Brooke writes:
Does the CA-125 test check for endo? My friend said I can do that and not the surgery. I searched and see it also tests for cancer and endo?!? Will my doctor know which I have?
You are not the only one confused. While popular, the belief that the CA-125 blood test is a one-stop shop diagnostic tool (or a way to tell if you have a particular disease) for endometriosis is false. Although, women think a blood draw will give them a definitive “yes” or “no.”
Above all, CA-125 measures an inflammatory protein called glycoprotein. Cancer causes inflammation, so does endometriosis. Because the blood test measures all available tumor marker in your blood, it can’t tell endometriosis from cancer cells. Unless the marker counter is really high, in which case you’ll most likely be sent to a gynecological oncologist, you’ll be faced with treating symptoms or confirming with surgery.
A high CA-125 value can indicate you have endometriosis, assuming you’re having symptoms that suggest the disease, like pelvic pain, dysmenorrhea (painful periods) and/or menorrhaghia (heavy bleeding). And know a low result doesn’t put you in the clear, especially if you’re symptomatic. In the end, you and your doctor may decide a laparoscopy is the appropriate , plan of care.
Going through with the blood test is a personal decision. However, your insurance company may require it as part of the “exhaust all non-surgical intervention” phases before they will approve a diagnostic laparoscopy.
Back on March 3, 2009, to celebrate Endometriosis Awareness Month (#MarchBloggingMadnessForEndometriosisAwareness), I wrote a highly visited post – The Stages of Endometriosis. This post was the introduction to my 2009 Endometriosis Blogging campaign. Somehow, though, it became so much more to my readers.
Over the past 4 years that post has been seen by 59, 780 people (as of press time) and received 190 comments. (I will take this opportunity to note that I do not confirm all comments submitted to this blog. Hateful comments directed at another poster, a group of people, or religion, or myself are not posted.) One of these posters asked if I would be writing more on the topic of endometriosis staging in the near future. Seeing as March was around the corner, I couldn’t pass up the opportunity to expand the Stages of Endometriosis topic with a second post.
Enjoy, and thank you for your continued visits, e-mails and comments! (And for trudging through my non-endometriosis related health posts lately.) Happy Endometriosis Awareness Month! Together we are stronger!
Disclaimer:Please keep in mind, each person’s personal pain threshold and response to symptoms are different, regardless the disease staging. How you may feel with Stage I or Stage II may be the same as how someone else feel with Stage III or Stage IV. The “mild” implants and adhesions of Stage I and II may send you to countless doctor appointments, or your surgeon may coincidentally discover Stage IV severe — and symptom free — endometriosis while performing an exploratory laparoscopy for infertility. Each symptom section is meant for general knowledge, and is no way a reflection for how you may feel or how you should feel while in that particular stage of the disease. If you have questions regarding which stage you are in, or how you should fee, please consult your personal physician.
Stage I
Severity: Stage I is classified by a “dusting” of endometriosis that’s only on the pelvic organ surfaces. Endometrial implants may be found — in small amounts — on the outside of the uterus, the ovaries and fallopian tubes or the walls of the pelvic cavity (or cul-de-sac). Implants will be few in number, are small in size and are present on one ovary. Those on the pelvic walls or peritoneum will be less than 3 centimeters, and any on the ovary will always be under 1 centimeter in size. If adhesions are present, they are thin, transparent and few in quantity.
Diagnosing & Treatment: Unless you are experiencing unusually heavy menstruation (menorrhagia), unusually painful periods (dysmenorrhea) or pain during intercourse (dyspareunia), your doctor may take the 1) wait and see approach or 2) prescribe hormonal birth control.
Hormonal birth control is now available in varying doses and delivery methods, and has become a useful non-surgical tool if your doctor suspects endometriosis. Although, it is not fool-proof and in no way replaces a diagnostic laparoscopy.
Whether you’re on “the pill,” “the ring,” “the patch,” or “the shot,” hormonal birth controls are designed to produce the same biological result: to stop your menstrual cycle. This does not always equate to stopping your period. Some pills taken non-stop, meaning you skip the weekly dose of sugar pills and continue taking the hormonal pills for four months — like Seasonique — can stop your menstrual cycle.
The Mirena is a hormonal releasing intrauterine birth control device doctors use to halt the progression of endometriosis, as well. Unlike the pill, patch or ring, a trained doctor, midwife or nurse practitioner must insert Mirena. Because the cervix is dilated, Mirena is best used in women who have already had children, or at least been pregnant. Some women’s menstrual cycles are stopped with the Mirena, but without the menopausal side effects that come with medications like Lupron (which will be discussed later). It’s important to note, though, that not all women get this response. Others report heavy bleeding and cramping with Mirena. This can be so bad that the device is removed way before its 5 year expiration. Some women experience side effects that are worse than their endometriosis complaints.
According to the Cleveland Clinic, some 30 to 40% of the estimated 5.5 million women in North America who have endometriosis experience infertility. In the past, women with suspected endometriosis — especially in an early stage — were advised to have children. Women with the disease were encouraged to have children as early in the disease progression as possible. It was and still unknown exactly why infertility is so common among women with endometriosis. Current research is exploring possible endometriosis related causes that effect infertility, but science has yet to prove the myth that pregnant cures endometriosis. In fact, there is ample evidence — from the millions of women who still have endometriosis after delivering children — that pregnancy doesn’t cure the disease.
Remember, regardless the stage, there is no cure for endometriosis.
Stage II
Severity: Stage II is classified by the presence of deeper endometrial implants, along with the superficial implants seen with Stage I. Also present may be the thin, filmy adhesions on the ovaries, fallopian tubes cul-de-sac and uterus. Adhesions should be thin enough to measure under a 1/3 of an inch. If they are thicker, you may be progressing into Stage III moderate disease. Deep endometriosis implants will be over 3 centimeters in-depth, and contained to the peritoneum. There will be signs of superficial endometriosis on both ovaries, with implants being at least 1 centimeter. And there will be thin adhesions noted on one ovary.
Diagnosing & Treatment:
Because of Stage II is still considered a mild form of the disease, doctors may be hesitant to perform diagnostic laparoscopies in women who have not had children or may want children in the near future. This is because any pelvic or abdominal surgery can create adhesions, which can bind to the ovaries and may interfere with fertility.
Treatments are the same for Stage I and may include Non-Steroid Anti-Inflammatory medications, such as Ibuprofen. Using heat and ice during your menstrual cycle, or when cramping is present, can also relax the pelvic nerves and muscles. Some women have found pain relief through meditation and biofeedback, though this does not resolve issues with bleeding or halt implants growth.
During your cycle, your ovaries produce estrogen and progesterone. Endometrial implants feed off the estrogen, using this hormone to spread and grow in size. Hormonal treatments meant to halt the ovaries estrogen production are aimed at the later, more sever stages of endometriosis. Stage I and Stage II are considered mild enough — at least clinically — to be treated with surgical excision or removal of implants via laser, and hormonal birth control.
Some doctors will offer estrogen-suppressing medication to Stage II patients once all other medication and surgical options have failed; however, due to the cost insurance company’s bear, doctors must often prove the patient has exhausted all other options. Be warned: Some insurance must have documented proof of this. Your doctor’s testimony may not be enough to get that expensive monthly Lupron shot if you’re Stage II.
Stage III
Severity: There is a marked difference between Stage III and Stage II endometriosis. With this stage, there can be both superficial and deep implants in the peritoneum, along with a partial obliteration of the cul-de-sac. Often, there will be deep endometrial implants on one ovary. The presence of chocolate cysts are common with both this stage and Stage IV. Adhesions will vary between thin, filmy, dense and massive, and cover the ovary — or ovaries — and fallopian tubes.
Diagnosing & Treatment:
Often, but not always, by this stage, women seek medical help for their endometriosis symptoms. Pelvic pain, urinary urgency, sexual discomfort and/or excessive menstrual bleeding or bleeding in between periods causes concern. When this stage causes discomfort, it can be a mind-numbing, isolating pain that leaves the sufferer bed bound for days out of each month.
Evidence, such as extensive adhesions, chocolate cysts and an abnormally thickened endometrial layer may be seen on an ultrasound, MRI or CT scan, and can point your physician toward a diagnosis. While these signs are likely to be endometriosis, a diagnosis of endometriosis cannot be made without a diagnostic laparoscopy. A doctor should make visual, and preferably histological, confirmation of endometriosis through laparoscopy.
Stage IV
Severity:
Stage IV presents with a range of superficial and deep implants scattered across the peritoneum. The cul-de-sac is completely obliterated by this stage of the disease and at least one ovary will have deep implants that are at least 1 to 3 centimeters in width. At least one ovary and/or fallopian tube will be covered in a thick blanket of adhesions.
Diagnosing & Treatment:
Some women have Stage IV endometriosis and have absolutely no symptoms. Other only experience mild cramping or unusually heavy periods.
For women with surgically confirmed Stage III or IV endometriosis, though, doctor’s have medicinal and surgical options for treating the disease.
Remember, there is no cure for endometriosis. Any treatment or surgery’s goal is to temporarily alleviate pain or disease progression.
Medicinal Options Often Reserved for Stage III & IV:
Due to their long and short-term side effects and insurance costs, doctors are not likely to turn to these medications as a first line defense.
Zoladex – this medication comes in pellet form, which is then placed under your skin by injection. A nurse or physician must inject a new Zoladex pellet into your subcutaneous belly fat every 28 days.
Lupron – A common medication that’s available in month or three-month injections. You must see your physician for this shot, as well.
Synarel – Harder to control, but easier to stop if you experience unwanted side effects, Synarel is a twice daily nasal spray you self-administer.
Purpose & Side Effects:
GnRH agonists shut down estrogen production, which in turn, slows down the growth of endometriosis. Abruptly withdrawing estrogen mimics an immediate menopause — complete with hot flashes and mood swings. Unfortunately, your body’s estrogen levels don’t experience a gradual decline but a sudden plummet. This can negatively affect both your bone and mental health. As it stops estrogen, though, GnRH medications will stop your period. For women with excessive bleeding and pain, this may be a welcome change.
Be cautious: GnRH antagonists are not to be used for an extended period. And consider getting a second opinion if a doctor is a) too eager to prescribe GnRH medications (look for medication freebies littering the exam room that advertise a particular drug), b) doesn’t suggest trying other options first or c) hasn’t confirmed your diagnosis via a surgical laparoscopy.
Progestin Treatment:
Progestin mimics the progesterone your ovaries naturally create; fooling the body into thinking it is pregnant. For women with endometriosis, this is an ideal state (hence. why gynecologists once told women to get pregnant) because progesterone reduces the endometrial lining. Since it reduces the endometrial lining in the uterus, it also reduces any endometriosis implants contained in the pelvic cavity.
Progestin is available in several pills, by a 90-day Depo-Provera injection and the 5-year, slow releasing Mirena intrauterine device. Progestin treatments can stop your monthly period due to their ability to thin the endometrial lining and slow ovulation.
Surgical Options:
Besides laser or excision removal during a laparoscopy, some women opt for a hysterectomy to ease their endometriosis symptoms. Unfortunately, many women experience a resurgence of their disease despite the removal of their ovaries and uterus.
In order to starve endometrial implants, you must remove estrogen from the body for a minimum of 6 months. I’ve heard this includes even estrogen from plant and food sources, but this may be going to the extreme.
If you are close to menopause, or already entering into a natural menopause, then surgical menopause — which includes the abrupt removal of estrogen producing organs — may not be too severe. If, however, you are young and have a high pre-op estrogen level, this sudden drop can cause drastic mental and physical side effects.
Unlike GnRH antagonists, pills and UIDs, a hysterectomy is a surgical remedy that holds no guarantees and you cannot reverse. On that note, though, if you have severe bleeding that does not abate with other medical interventions, a hysterectomy may be your best bet. As always, a hysterectomy — or whether to take a pill or use a patch — is a purely personal decision. I do not endorse one treatment over the other. Speak with your doctor and make an informed decision concerning your personal medical history, diagnosis, estimated progression and personal preference.
Steve asked: How can I best support my spouse who has endometriosis?
First, let me thank you, Steve, for an excellent question; and secondly, for being so patient with me. Steve is a regular reader. He e-mailed me with this question, and it’s sat my in box collecting virtual dust since. Steve, it’s been my hectic schedule keeping this post at bay, not your question.
I asked if any readers could lend some advice.. So before I get to my answer, Margaret has this to share (Thanks!!):
Steve could get a copy of Dr Andrew Cook’s book : Stop Endometriosis and Pelvic Pain, what every woman and her Doctor need to know …. It has much information on supporting a patient with Endo. Even some comments from our patient’s spouses.
Now, to the heart of the matter…
1) The #1 thing you can do for your spouse/significant other who has endometriosis is just be there. Stand by her side through every cramp and mood swing and hormonal treatment. Don’t trade her in for an unbroken, slightly newer model once the going gets tough; she’s not a used car.If she can’t have children, you as a couple can’t have children. Don’t ever blame her for biological war that’s being waged inside her body; believe me, we get drafted into a battle zone.
After running this blog since 2006 and interviewing women whose lives have been devastated by this disease, there are two groups. One group has supporting partners, the other doesn’t. I have received e-mails and comments, and conducted one-on-one interviews in which women have related how their significant others have left them for a “healthy” girl, or broke up in the pre-op suite(!), or got another woman pregnant and placed the blame on his wife’s endometriosis… and it can go on.
I don’t hear those stories from supportive, present significant others. Instead, women are not afraid to share their symptoms, their pain tolerance, reactions/medication side effects and feelings. For those with chronic conditions, communication in relationship is important; but for women with endometriosis, and the significant others who love and care for them, it is vital.
2) Familiarize yourself with The Joint Commission’s “Speak Up!”™ steps for patient safety and empowerment. Then have your loved one read them. See my post on this subject: “Speak Up!”™https://endochick.wordpress.com/2010/01/14/speak-up/
3) Encourage your significant other to do for her self. Yes, there will be certain times of the month, or after surgery – or even if she’s reacting badly to a medication, when she’ll need to lean on you. But too much of a good thing here can breed resentment. Again, be honest about your feelings and have an open dialogue – even if the situation cannot be changed. And never assume because she relies on you, perhaps more than you normal, that her pain is not. Perhaps a visit to a better doctor is in order because her pain or symptoms may not be adequately controlled.
4) Take care of yourself. Take some time each day for you. Feed your body nutritious food. And keep your stress down. Watch for signs of depression and ill health, and do not ignore them.
Karen asked: I searched “endochick” and found a hit for YouTube. Is that you?
Randomly, I do see the search term “endochick” as how people get to my blog. To me, that’s sorta cool that someone can search “endochick” and find posts I’ve written or that others have written about me. I’ll admit, though, I’ve never searched it myself. Until preparing this post.
To answer your question, Karen, no. I am not the Endochick on YouTube. I am looking into setting up a YouTube account to begin vlogging… but that’s not me. Believe me, I wish I could have that account name!
Searching through the net did give me a chance to see there a other Endochick’s out there. And I knew this. To clear the air… once again, I no longer have a Twitter account. You can contact me through this blog, e-mail or Facebook. I do not have an independent website and I’m not active on social media sites for parents and writers.
As always, if you wonder if it’s me just ask! If I do get a YouTube account, you guys will be the FIRST to know. 🙂
** A friend pointed out that I do have a presence on Twitter. This is a OLD, defunct and locked account that I no longer have access to. If you friend it or DM it, I will not reply. Sorry for any confusion.
I’ve been meaning to tackle an “Ask Endochick” question for sometime, so I’ve pulled up my e-mail and found one sitting in limbo. This is a simple one and will not take long to answer.
“Dear Endochick:
My 17 year old daughter was newly diagnosed with endometriosis after surgery to take out a cyst. Her periods are irregular and VERY heavy. She missed a lot of school last year from the pain. Her bleeding can last for 9 days!! Sometimes 13!! She will sometimes spot throughout the month, experiencing back and leg pain. She’s prone to migraines during her “time of the month,” and these can be down right nasty! She’ll get nauseous and moody, and very sensitive to light and noise. The other day a pop-up for a high school home study program came on my computer and I clicked on it out of curiosity. It looked promising. While I worry about pulling her away from her friends, I wonder if this will offer her body the necessary respite it needs to heal. Do you have experience or suggestions regarding online education for students with endometriosis? – Sharon”
Sharon –
First, while the flexibility of home study will provide your daughter the opportunity to set her own schedule, let me emphasize that endometriosis is a chronic, incurable condition. No matter how much respite you provide, your daughter’s body will never fully heal from the disease as it will never be eradicated until science discovers a cure.
With that out of the way, let me tackle the meat of your question – online education. I selected this out of several “Ask Endochick” questions that are waiting to be answered because I do have experience with online education. I battled endometriosis while in college, both undergrad and graduate school, and took a mixture of old school classes and online classes to fulfill my degree requirements. I also worked as an online mentor to help incoming freshman taking their first online classes.
What did I learn? I remember a Tuesday morning that should have been a normal Tuesday morning, but that quickly turned into a Bloody Tuesday on my way to Psychology. By the time I walked across campus, I had bled through my pants. Thank goodness for January and my coat. I was able to change but not make it to class, or any class that day. Or the next. The cramps were horrific. For two days, I was in hell. Every month, the same thing.
Then came online learning. My period came and I could sit at my desk with a heating pad, my Midol, my pajama pants, and I could still focus on my work. My grades and my participation did not suffer.
That is the key. Participation. As silly as it sounds, traditional classes still count participation points. If you show up, raise your hand, answer some questions, etc., you will get varying amounts of points added to your grade. When factored into your quizzes, tests and paper grades, these helped to make up your overall scores. With online learning, participation scores are made through posting on message boards or blog/journal entries and comments.
For the most part, online participation can be done when you feel like it. I had a class where all blog posts needed to be posted by Friday and you had to comment on two of your classmates posts by Monday. That was it. There would be days I wouldn’t feel like posting my blog assignment until Friday and commenting until Monday evening. And other times, I was on the ball earlier in the week.
And in many online classes, you are allowed and even encouraged to work ahead. Traditional classes, this practice is not encouraged. I took one online journalism class that required a number of articles to be done by the end of the semester. But the professor never said I couldn’t do them ahead of time. Since I worked for a newspaper at the time, I worked it out with the professor that I would submit my newspaper articles for class credit. After submitting them to my professor, I fulfilled the class requirement within the first two weeks of class.
Sharon, my experience with online learning is solely college. My own sister finished the last year of high school via an online high school due to a medical condition, and there are some things you need to consider before making that leap to home schooling your daughter.
1) Make sure the school is accredited. Research the school and make sure they are legit are backed by the Better Business Bureau.
2) Make sure colleges will accept the school. Not all online schools are recognized by colleges and universities. Before making the investment, make sure it’s worth it.
3) Make sure your child is self-disciplined for independent study. Once a student’s in high school, they should be responsible for their own educational success. If they need constant prodding and reminding, home study may not be the best fit unless you will be home and able to provide that.
4) It’s easy for chronically ill people to feel isolated, and when they remove themselves from social situations like school, they are more likely to feel the emotional effects of their illness. Making time to reconnect with friends is important.
There are but two days left in March, but the campaign to increase awareness and urge research into cause and elimination of endometriosis does not need to end. Our voices remain strong as we continue to band together – on-line and off. Regardless the media carrying out message, it is still being disseminated to the many millions of women world-wide who need to hear it.
With that being said, I am making this post (which, depending on my schedule could very well be the last one for March) pack a mighty punch. It will be fact ridden, and I promise you, validate what many women think about hysterectomy and failed endometriosis treatments.
The subject being discussed is the quality of life and sexual function in women post-hysterectomy. This is a very delicate subject, and for some, may be upsetting. If this is the case for you, you want to skip this article. On the other hand, if you have had a hysterectomy and are experiencing pain and depression and obtaining inadequate support from your health care provider, this article may give you the information you need to sway their opinion.
One night I was doing research and found the article I will discuss below. It caught my attention because a 35 year-old woman had e-mailed me the day before. She had chronic pelvic pain and decided on a hysterectomy. It was always assumed she had endometriosis, and adhesions were found, but no implants. 7 months after lap, she decided to have a hysterectomy. Her pain had caused her to go on medical leave from her job and she had had enough! She then found my blog 3 years post-op because the pain had never stopped. She had been tossed from doctor to doctor with no answers.
In a 2004 study published in the October issue of The American College of Obstetrician and Gynecologists, Dr. Katherine E. Harman, Cindy Ma, Dr. Georgine M. Lamvu, Patricia W. Langenberg, Dr. John F. Steege, and Kristen H. Kjerulff, the researchers state, “In the United States, more than 60,000 hysterectomies are performed each year; of these, 10% of women have pelvic pain as their primary preoperative indication for the surgery” and that of these 10% “22% of patients with pelvic pain before hysterectomy continue to have pain after surgery”.
I don’t find these statistics too surprising. I have heard from countless women – on a global scale – reporting the same. They had hysterectomy for unrelenting pelvic pain. Their endometriosis was being controlled. A few were just tired of living with ovarian cysts. But after the surgery, and the recovery, the pain remained. It returned. It was… there.
This study aimed to take a population sample of women experiencing pain and depression after hysterectomy. 1,299 women were included – women who had hysterectomy for pain resulting from benign conditions. I stress benign because one could expect depression in women having a hysterectomy for malignant conditions – such as cancer.
They measured these women on functionality, both at 6 and 24 months post-op. Measurements evaluated the “presence of pain, health-related quality of life, and sexual function”. Three groups of women were studied: (a) women with pelvic pain and depression, (b) depression alone, and (c) just pelvic pain.
At 24 months post-op, the women with preoperative pelvic pain and depression had “3 to 5 times the oddd of continued impairment of quality of life”.
What is not discussed in this article is the use of hormone replacement therapy during the study period. The participants were 18 years of age or older.
The authors note, “Gynecologic surgeons are appropriately concerned that patients who are struggling with depression and/or pain before surgery be at especially high risk for poor operative outcomes such as slow recovery, persistent pain, or developing new symptoms.” They conclude that performing a hysterectomy on women with pelvic pain and depression could actually do more harm than good.
From what I see, there has yet to be a long-term follow-up study concerning post-op hysterectomy health and function.
This study does focus on women who had depression and pelvic pain before surgery. And by doing so, may contain a bias towards the belief that women with depression have lower success rates for treatment. But one should ask, how many of the women’s depression was a result of the pelvic pain? This needs to be studied and quantified.
To me, this study read more like evidence to support the attitude some clinicians have with chronic pain patients – just pass them off.
How does this article relate to “why we need awareness”? If you’ve stuck to this point, you deserve an answer. This article reinforces the depressed pelvic pain stereotype. It reinforces attitude that women with preoperative depression are more likely to be unresponsive or under-responsive to the surgical therapy. Having these prejudices and stereotypes circulating can lead to increased mental anguish.
I am not condoning hysterectomy for endometriosis in this post. That is something for the patient and her physician to discuss. I am not a doctor. I do not have the ability to condone hysterectomy; it is merely my personal belief that not all pelvic pain should result in hysterectomy.
Three years ago I sought the advice of a trusted, and seemingly competent, gynecologist. The pain was well over 20 on a 10-point scale, and like many women I’ve heard from over the years, I had “given up”. I was done! I wanted this busted uterus gone from my body. I wanted those blasted, estrogen producing ovaries out of my body. And I wanted, more than anything in the world, for this endometriosis to stop cursing me with monthly agony. I just wanted to be free from being chronically ill.
It was at the consultation when my physician’s nurse practitioner closed the door gently behind her and asked me, “is this really what you want?”
Of course it was! I begged for this! I pleaded and screamed and kicked my feet until I found a gynecologist who would do this surgery on someone under 40. Was this lady daft?
She must have taken my look of “wtf?!?” to mean I was unsure. Either that, or she just didn’t care. She was looking out for her patient and holding true to the first tenet of medicine -“first, do no harm”. I remember her heavy sigh as she took my hand in hers and said, “you should not get this hysterectomy.”
Who was she?!?! She had no clue about my pain. She had no clue how this affected my life. Then she said, “I have been where you are now and I have seen the other side. It is not one to walk down lightly.”
She proceeded to recount her experience with endometriosis. Her tale was strikingly similar to my own, and to many other women with the disease. Years of heavy, painful periods. Days spent sitting out of life, clinging to heating pads and pain reliever bottles. Treatments tried and failed. Being a spectator in ones own life.
She then told me that having a hysterectomy was akin to buying another used car when your previous junker has clunked out. With your current car, you know what you’re getting. You learn to know its noises, and how to get it started even when it makes that “put-put put ” sound or smoke bellows out the exhaust pipe. But when you trade it in – for a hysterectomy – there can come all these new problems – problems you couldn’t conceive of. And there is no Lemon Law. They can’t graft back in your ovaries – your uterus. There is no turning back. And you could awaken in that recovery room a miserable mess. And she described the sudden loss of estrogen – like going 80 and slamming on the brakes.
And hormone replacement therapy increases the risk for heart disease and cancers. And one must weight the decision to have a hysterectomy with the possibility of life without estrogen.
I left her office that day confused. I took a long, hard look into my life with endometriosis. A very long look. And I came to the realization that my endometriosis – much like an old car – is predictable. I’ve lived with it for so long I know how it acts, when it acts, and how to mask it. I know what works, what doesn’t, and what my body will not handle. And I made the personal decision not to cross into the unknown frontier. No thank you Captain Kirk, but I will not be going boldly where others have gone before.
And I stress, this is a personal decision. Some cases may warrant a hysterectomy. This is something for you and your physician to work through.
But we need more awareness as to the myriad treatments available. I was told Nuvaring failed, BCP failed, the shot failed… time for surgery. They gave up and I almost gave up on my self.
March 2009 – Jeanne from Chronic Healing and myself banded together to increase endometriosis awareness. My contribution that month included posts such as:
And Jeanne created a petition to increase awareness that continues to be signed. If you have not, please do sign this petition. If you are a blogger, please consider adding the petition to your site. Please spread of the news of this post, all endometriosis awareness posts, and the petition through Facebook and Twitter.
Why do I point out what we did 2 years ago?
Despite our petitions and posts, incorrect information about how endometriosis is diagnosed and treated continue to be disseminated in the media. An appallingly dismal amount of research is being done into the cause of this disease. And women continue to be misdiagnosed by their doctors.
Search terms such as “endometriosis suicide” increase in frequency with little recognition from the health care establishment regarding the impact chronic pain can have on an individual. Chronic pain patients presenting with depression are sometimes treated for the depression and not the pain. This can create a vicious cycle in which the pain never ceases, goes severely under-treated, and the depression fails to respond to treatment and can worsen. This is when search terms linking endometriosis and suicide occur.
I should not have to use one hand, let alone two, to count how many people reach my blog every month using the search term “endometriosis suicide”. I should not have to read heartbreaking e-mails from women who are at the breaking point. Women who are turned away because of their pain, because of their need for answers. These women are fed up and tired of the “take this pill, give it 6 months, and call me if you’re still in pain” regimen. These women are tired of their bodies being cut on and disfigured because there is no final solution for this disease.
Their hearts break because of infertility. Their bank accounts run negative because of costly treatments and surgeries. There are stories of lost wages and termination because of excess time off.
But above all, the most common complaint I have found… “no one understands what I’m going through”.
All of that – that is why we need awareness. And we need it now more than ever.
Endometriosis: the silent life sentence 