Endometriosis – Not Just a Reproductive Disease

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Endometriosis is generally thought of as a reproductive system disease, probably owing to the fact that one common symptom is painful menstrual periods, and that it can cause infertility. The truth is that this is not solely a reproductive disease at all. It can affect the reproductive organs, but it also commonly affects other organ systems such as the intestines and bladder. More rarely, it can also affect areas outside of the pelvis altogether such as the sciatic nerve, the diaphragm, and lungs, and even the calf muscle. In addition to pelvic-specific symptoms such as pelvic pain, bowel and bladder dysfunction, and painful intercourse, many women with endometriosis report systemic symptoms such as fatigue and general malaise, and women with endometriosis have a higher incidence of many diseases such as autoimmune diseases, allergies, inflammatory bowel disease, and even a slightly increased risk of ovarian cancer. The links between endometriosis and these other diseases are not well understood.

Many people may be familiar with the fact that endometriosis is caused by misplaced tissue in the pelvis that forms lesions, cysts, and nodules. However, given its reputation as a reproductive disease, most people expect that it usually grows on the reproductive organs—the ovaries and the uterus. This has been found not to be the case, and even though the work demonstrating that the most common locations for lesions are not the ovaries or uterus was published in the medical literature 24 years ago, the misconception still persists to this day, even among physicians.

Dr. David Redwine, a pioneering laparoscopic surgeon, published a study of the distribution of endometriosis in the pelvis by age group and fertility in 1989. This study described the locations of endometriosis in the pelvis in 132 consecutive patients undergoing laparoscopic surgery. The most common area where endometriosis was found, in all age groups, was the cul-de-sac, which is the area behind the uterus, between the uterus and the rectum. The next most common areas were the ligaments of the pelvis (the broad ligament, and uterosacral ligament, with the right side being involved more often than the left). After the ligaments, the bladder was most commonly involved, and then the left ovary. Then the fundus of the uterus (the top end, opposite the cervix), the sigmoid colon, the right ovary, then finally the Fallopian tubes, the round ligaments, and the abdominal wall.

This study also suggested that, contrary to the popularly held belief that endometriosis spreads to more pelvic areas over time, it does not in fact spread. Lesions can grow and deepen over time, leading to more significant symptoms and potentially organ damage. However, in this study, older women as a group did not have more areas of the pelvis involved by endometriosis than younger women, which is what would be expected if endometriosis did spread in location over time.

The most interesting thing about this study is perhaps not the results themselves, but the fact that 24 years later, the results and their implications for treatment have not been incorporated into practice by many physicians treating this disease. First of all, endometriosis as a multisystem disease requires surgical expertise that often goes beyond what most gynecologists are trained to deal with. And yet many gynecologists who do not have the surgical skills to remove endometriotic tissue from sensitive areas like the sigmoid colon still continue to treat these patients, even those with complex disease, rather than refer them to specialists.

More importantly though, the dismissal of endometriosis as simply a reproductive system disease seems to lead to a lack of understanding of the debilitating symptoms it can cause. Studies on the quality of life for women with endometriosis have shown that women still continue to suffer from frequent symptoms including chronic pain, that impair their quality of life, even after treatment for their endometriosis. The severe pain experienced by many patients with this disease is dismissed in a way that pain from other diseases doesn’t get dismissed. Nancy Petersen, a recognized patient advocate, and Founding Director of the first Endometriosis Excision Treatment Program in the U.S., has compared the pain of endometriosis to the pain of acute appendicitis. During acute episodes of endometriotic pain, patients are often offered Tylenol or naproxen by physicians—would physicians even consider offering those medications to a patient with acute appendicitis? How long will the undertreatment of endometriosis pain persist by many physicians because of the misguided perception that it’s just a “women’s problem” and therefore can’t be that serious or painful?

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12 Comments

  1. Endometriosis and treatments left me disabled and lonely I can barely do things for myself anymore and feel I’m dying slowly. Getting treatment they treat me as a drug addict I am at a loss. I went years in pain finding during first lap I had urerters and bowel stuck to uterus with uritine prolapse also prolapse caused artery to be pressed and not flowing after partial hysterectomy I was pain free for a year they also burned endometriosis in Douglas pouch. 6 years later found excision specialist had excised right side abdominal wall, urosacral nodule and appendix that was impacted I had cried for years with pain right side. They also took scar tissue off ureter and bowel from previous surgery All took 8 hour surgery. After I have no relief still right side pain and rib as well as migraines daily and now spinal problems. Before excision I was on Lupron then provera every other month I had urogynocolist during excisions checking function having a double ureter now I burn my whole lower quantrant I have hard time with bathroom.

  2. Hi, I am a 67 yo woman who has had endo.etriosis since 1963. Finally I had a hysterectomy removing my right ovary and another surgery for a giant cyst on my left ovary which I still have. Pain has persisted in kidneys, frequent and painful uti’s with an area in my bladder which is “scabbed” over and seeding uti’s throughout my life. No antibiotic worked. Always told it was in my head. I also had surgery for suspected appendicial cancer. Turned out to be endometrial tissue verified on appendix and a portion of my cecum, so removed part of that also and resevted bowel. Migraine headaches chronically since childhood. Brain mri revealed a plaque like substance in my brain unlike alzheimers plaque. I asked maybe endo in my brain too? No they said. Impossible! I had my hysterectomy in 1997 so lots of time to spread endo tissue. I am hypothyroid and continue to have pelvic pain, pain with bowel movements, chronic migraines, have had several bouts with sciatica and asthma with several bouts of pneumonia. Still nothing is done. They say I do not have endo anymore. I say it is still there causing many other auti-immune and pain issues. Is there any help out there? Sorry for the long essay.

    1. Joan, would you be interested in sharing your health story in a blog post? The possibility that the abnormal brain plaques may represent endometriosis is something that should be published and seen by other researchers and physicians. Please let me know. I edit this blog.

  3. I wish everyone could understand this because I sometimes feel like I’m going insane and people look at me like I’m crazy.

  4. What great comments. For all those who are new to our site, we also post personal stories of health struggles so that we can learn from each other. If you have a health story you’d like to share, send us a note. Scroll up to the Write for Us link in the upper right column for details and contact information.

  5. This is a really great article. I am 18 years old and over the last couple years I have had my right fallopian tube removed and just recently I was sent to a specialist in September in Akron, Ohio. His name is Dr. Marchetta and I recommend him to any woman out there suffering with severe endometriosis. He specializes in Robotics surgery, which most gynochologists do not. Instead of just burning the endo with the laproscopic surgery, the robotics actually dig out the endo and it reduces the risk of it coming back. I had the surgery and I am still currently recovering. My symptoms from the endo have already started to go away. I was getting hot flashes 24/7 and pelvic and lower back pain. I also had bowel problems that are now fixed with the help of this surgery. I hope that this helps someone out there, and feel free to ask me any questions. much love xoxo

  6. I have known this for several years having suffered since 1995 I can not tell you how little attention is being paid to this condition. I have had complete hysterectomy and am again experiencing pain after all these years you would think they’d know more about this. I have a nodule in the lung and it seems to have moved everywhere.. and have no pain meds

  7. Thank you all for your comments!

    Amanda, I am sorry your endo has been so persistent. There is definitely a lot that we still don’t understand about endo, and it can be so different in different people. I hope you have found some relief from the pain.

    Cassie, I hope you are feeling well!

    K, I agree. I think we have made some progress, but it is frustratingly slow. And when I had an ER doctor prescribe naproxen to me (again) recently, after 25 years of living with endo, and 4 surgeries, that was exactly my thought–like I haven’t tried naproxen, tylenol, etc time and time again?

    Steph, I am glad that you were able to have effective surgery with a specialist who understoof your condition. Hope you are feeling well now!

  8. This is an awesome article. I had extremely bad endo. I was so blessed that my OBGYN sent me to a specialist. That specialist saved my life. My endo. was everywhere and was going into my bowel. I had 2 bowel obstructions because of the endo. The specialist not only reconstructed my bowel but also did a complete hysterectomy and even took out my appendix all in the same surgery. I hope one day to help get the word out to the other generations that they don’t need to suffer like we have. 🙂

  9. Wow. Amazing article. And here I thought in 2013 we had made progress… looks like we’re right where we were in 1989. I also can’t believe OTC pain meds and BC pills are considered a viable means of relief. As if in our 3…7…20 years of experiencing pain we haven’t tried either of those.

  10. This was a wonderful article! I’ve had this disease for around 15 years and only in the last few years have i even heard of it!!!

  11. Thank you for this great article. I have suffered from endo since I was 16 and though I agree with your article mine extends well into my kidneys. I have had a total hysterectomy and still suffer from endo that keeps coming back. I hope they continue to research as I spent so much time in pain because my doctors believed some ibuprofen could cure the pain.

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