March is endometriosis awareness month. March is also women’s history month. It seemed like the perfect time to discuss how poor detection and treatment of the disease affects the welfare, social, economic health, physical health, and quality of life of women. Endometriosis is a feminist issue.
Here, at this blog, we have extensively discussed treatment and various options for endometriosis. Although there are many treatments available for managing endometriosis, the time it often takes to get a proper diagnosis and referral to competent clinicians is often so long, that the disease may progress to a point where pain is a lot harder to treat and fertility is impacted. Endometriosis is a gynecological disorder, that according to the Women’sHealth.gov currently affects more than 11% of people with female anatomy in the United States.
Older material, in fact, posts on this page used to define endometriosis as a condition in which endometrium (the lining of your uterus) grows outside the uterus. Now, in most of the recent literature referring to the tissue growing outside the uterus, call it endometrium like, because the tissue bears some resemblance to endometrium but isn’t quite the same. Endometriosis can show up clinically in a whole host of ways. It is estimated that up to 59% never have symptoms and may only discover that they have endometriosis, if they have abdominal surgery and legions are spotted. Infertility may also be the only symptom. For those who do have pain symptoms, it can be really bad and debilitating. If you have heard of endometriosis before, you are probably aware that it can make periods intolerable, but that’s not the whole story. Endo, as it is called for short, can cause pain that extends well beyond menstruation, it can cause issues with constipation, low back pain, urination, bowel movements, and fertility. Pain with endo can be severe. It can keep you from work, and school, or even land you in the hospital. The time someone with female anatomy spends trying to get a diagnosis for the pain caused by endometriosis can take up to 11 years according to the American College of Gynecology fact sheet cited below.What Causes Endo?
As you may have gleaned from the intro to this story endo is poorly understood and frequently misdiagnosed. Up until recently, we weren’t even entirely sure what the deposits left by endometriosis were. The research community is divided on what causes endo and have offered many different theories to its origin, but the specific cause of endo is unknown.
We do know endometriosis is an estrogen dependent disease, which is why it affects mainly people with female anatomy. One common theory of how endometriosis is caused is the theory of retrograde menstruation. This theory posits that endometriosis is caused by shed endometrium that escapes the uterus and deposits itself in the abdomen. This theory is supported by animal studies that have produced endometriosis like legions when endometrial tissue was deposited in the abdominal cavity. The theory fails to explain cases in which endometriosis deposits are found far away from the uterus in tissues like the lung. It also fails to explain the rare cases of people with male anatomy who develop endometriosis with estrogen therapies. In many circles, this theory is falling out of favor and is completely disregarded by others. Another similar theory is the lymphatic vascular theory. This theory hypothesizes that endometrium travels to outside spots via the lymphatic system. Again, this theory doesn’t explain the rare cases of male endo nor does it explain that the tissue found in these outside sites. It also fails to explain that the tissue found outside the uterus is “endometrium like” and is different than normal endometrium within the uterus.
The theory of coelomic metaplasia is based on the fact the both endometrium and peritoneal tissue comes from the same embryonic ancestor, coelemic epithelium. The theory posits that certain immunologic or hormonal factors may transform this tissue into the implants we see in cases of endometriosis. The third theory is the embryonic rest theory. It purposes that endometriosis caused by stem cells derived from the embryonic müllerian system become transformed in endo deposits. This theory is supported by the rare cases of people with male anatomy with endo, as they, as embryos, have the same embryonic müllerian system, before it regresses as the male embryo develops.
What’s kind of crazy is the level of pain a women experiences is not directly related to the amount or size of the endo deposits she has. One theory of why a women with very little endo found surgically can have a lot of pain, is the concept of centralization, where the brain becomes more likely to perceive stimuli as painful. Read more about this process in our blogs Navigating Life with Chronic Pain 1, and Navigating Life with Chronic Pain 2 here.
One, all, some, or none of these theories could explain how endo is formed and maintained. The truth is we don’t fully understand the pathogenesis of this disease, yet. We need to know the cause. If we know the cause we may be better able to design treatments to ease the pain of endo and optimize the fertility of its suffers. Knowing the cause of endo will at least, aid in diagnosing the disease earlier or possibly curing or preventing it all together, which brings us to our next section.
Why does it take so long to get an endo diagnosis?!
Here’s the deal. The gold standard for endometriosis diagnosis is laparoscopic exploratory surgery with pathological biopsy confirming a lesion. Before laparoscopic surgery was a mainstay of medical practice, it was often believed that endometriosis was a disease that did not affect adolescents, as it was only seen in laparotomy, a more invasive technique reserved for more severe symptoms and conditions. When laproscopy became widely available in the 1980’s the diagnosis of endometriosis grew rapidly in all people with female anatomy and especially tweens.
There are other tools available to detect endo but they are not definitive like surgery and may miss cases. Even laparoscopic surgery can miss endo especially in adolescents, because the endo deposits may be better disguised because of its color, usually clear or red in younger folks. Endo is also not suspected often until after the start of a kiddos first menses, new recommendations suggest that abdominal and pelvic pain complaints in youngsters with female anatomy be investigated for endo at the start of breast bud development (Brosens) as endo was found in between 50- 62% of adolescents undergoing laparoscopy for chronic pelvic pain ( Agarwal and Chaichian).
Doctor’s need better, less invasive tools to detect endo and get people with female out of pain. Although laparoscopic surgery is considered non invasive, the recovery from it can be difficult, dissuading patient and physician alike from using it as a diagnostic procedure. There is emerging science working on less invasive ways to screen or even detect for endo. More research dollars should be spent to develop early diagnosis and treatment in order to save people with female anatomy the years, lost work and education secondary to pain, and infertility from prolonged endometriosis.
Conversely, people with female anatomy without true endo are undergoing surgery needlessly, sometimes sustain hysterectomies to “cure” endo that is in fact not even there (also hysterectomy does not cure endo, Endo by its definition is a disease that occurs outside of the uterus). 25% of 4000 of people with female anatomy studied who underwent hysterectomy for suspected endometriosis pain, were found to not actually have endo, which is outrageous on so many levels. 1. Hysterectomies do not cure endo. 2. Infecting infertility and the risks of major surgery on a person who does not need it, regardless of whether they has endo or not, is awful. 3. Those 25% of people who had their hysterectomy likely have more pain and were not given a proper diagnoses so they can pursue the proper intervention for their pain.
Why is Endo Such a Big Deal as Feminist Issue?
Endo is a disease the effects mostly people with female anatomy and only in very rare cases, those with male anatomy. If you get 10 of your gal pals in a room, statistically 1 of them will have the condition. Before I start in with this next argument, I want to make clear, that a diagnosis of endo does not necessarily impair one’s success later on in life; however, it can make achieving life’s milestones a lot more challenging.
Kiddos with painful endo symptoms miss more school a month than kiddos without endo (Brosens), setting them up for a harder battle to succeed academically and potentially limiting college options. In the workforce, they may continue to miss more days limiting their chances for raises and advancement. These missed opportunities have the ability to compound and further place women with endo at an economic disadvantage.
As people who present as women, it is sometimes harder to have our pain taken seriously. In a shattering article in the Atlantic, Joe Fassler, describes the ordeal his wife had to go through to have her potentially life threatening ovarian torsion taken seriously. He recounts how many times his wife was told to buck up, while she was actually in the process of losing her ovary. He also sites the disturbing statistic that female presenting individuals wait approximately 25% longer than men in the ER for pain relief. There is evidence to support that if you are a woman of color, you are even less likely to be given an analgesic at all when you go to the ER for pain. The fact our pain, as women, is taken less seriously means that in order to get a timely diagnosis women may have to scream louder and longer just to be heard.
The longer people wait for diagnosis, the more likely the pain is likely to enter a centralized state in which stimuli that were previously not painful are perceived as pain. Centralized pain is a lot harder to treat and will take longer to resolve than non centralized pain, possibly leading to more time out of the workforce, and requiring more money spent on treatments. People with endo must be taken seriously. Our financial independence and personal lives require it.
What Can I Do If I am In Pain?
So we talked about the larger systemic issues affecting women with endometriosis. But what are some realistic steps you can employ to help with your pain?
- Get moving! A review by Bonocher and colleagues, found exercise may help women who are already suffering from endometriosis related pain. The pain caused by endometriosis is thought to occur because of inflammation caused by endometriosis implants outside of the uterus. Exercise has been shown in repeated studies to increase anti-inflammatory chemicals in the blood and therefore reduce pain caused by inflammatory processes.
- Stretch it out. Zahra Rakhshaee, published a 2011 article that found yoga could ease painful periods and may be helpful in managing the symptoms of endometriosis. In this study, a yoga routine consisting of daily 20 minute sessions had a significant effect in reducing pain in the study participants.
- Put a pin in it, or you! Acupuncture is an ancient Chinese healing practice and can be used to treat many conditions. In a review by Leong in 2014, acupuncture reduced painful periods in 92% of study participants. The review also cited an article in which 73% of participants reported an improvement in their symptoms versus 42% receiving a placebo (fake) treatment
- Physical therapy treatment can be helpful in treating many of the issues associated with endometriosis. In a study by Wurn in 2011 , physical therapy was shown to have a significant effect on reducing pain and improving sexual function in women who have endometriosis. Physical therapists are trained healthcare practitioners who can guide you in strengthening and stretching programs to help ease your pain, apply hands-on techniques to restore mobility lost due to endometriosis and other conditions, as well as guide you through lifestyle modifications you can make to ease your pain symptoms.
For more on PT and how it can help endo pain, check out Amy's Video
What do we do for everyone affected by endometriosis or pelvic pain?
Seems pretty bleak, doesn’t it? It’s not. Collectively people with endo and endo specialists are working to advance the awareness, diagnosis, and multidisciplinary approach to treating endo. It is an exciting time with new discoveries being presented in the literature, and more women and doctors becoming outspoken about this condition. But we have a heck of a long way to go to help out our sisters with endo.
The first thing you can do is speak up. If you feel you have not been diagnosed correctly, seek a second opinion. Also feel free to share the articles below with your doctors in order to broaden their exposure to endometriosis, I particularly like Brosen’s article. Share this blog and others on endo so more people and practitioners know about it. For those of you with the resources to do so, consider donating to an organization like the Endometriosis Association or the International Pelvic Pain Society (IPPS). Both are organizations that study and advocate for effective diagnosis and treatment for people with pelvic pain, including those with endo, as well as advocate for a multidisciplinary approach to healing. Together, we can improve society’s awareness of this disease and reduce the challenges that endo has on women.ACOG. Endometriosis Fact Sheet. https://www.acog.org/about_acog/news_room/~/media/newsroom/millionwomanmarchendometriosisfactsheet.pdf. Accessed March 12, 2018
Agarwal N, Subramanian A. Endometriosis- morphology, clinical presentations and molecular pathology. J Lab Physicians. 2010; 2(1)-19
Bonocher C, Montenegrow M, Rosa e Silva, et al. Endometriosis and physical exercises: a systematic review. Reproductive Biology and Endocrinology. 2014, 12:(4)
Brosens I, Gordts S, Benagiano G. Endometriosis in adolescents is a hidden, progressive and severe disease that deserves attention, not just compassion. Human Reproduction. 2013; 28(8) 2-26-31
Dickasen M, Chauhan V, Mor A, et al. Racial Differences in opiate administration for pain relief at an academic emergency department. Western Journal off Emergency Medicine. 2015; 16(3) 372-80
Chaichian S, Kabir A, Mehdizadehkashi A, et al. Comparing the efficacy of surgery and medical therapy for pain management in endometriosis: A systematic review. Pain Physician. 2017; 20 185-95
Fassler, Joe. How Doctor’s Take Women’s Pain Less Seriously. The Atlantic. October 15 2015
Leong F. Complementary and alternative medications for chronic pelvic pain. Obstetrics and Gynecology Clinics of North America. 2014, 41:(3): 503-10
Mowers EL, Lim CS, Skinner B, et al. Prevalence of endometriosis during abdominal or laparoscopic hysterectomy for chronic pelvic pain. Obstet Gynecol. 2016 Jun;127:1045–1053.
Rakhshaee Z. Effect of three yoga poses (cobra, cat and fish) in women with primary dysmenorrhea: A randomized clinical trial. Journal of Pediatric Adolescent Gynecology. 2011;24(4):192-6
Sasson I, Taylor H. Stem cells and the pathogenesis of endometriosis. Ann N Y Acad Sci. 2008; 1127: 106-15
Stratton P, Khachikyan I, Sinaii N, et al. Association of chronic pelvic pain and endometriosis with signs of sensitization and myofascial pain. Obset Gynecol. 2015; 125(3) 719-28
Womenshealth.gov. https://www.womenshealth.gov/a-z-topics/endometriosis . Page last updated: March 05, 2018. Accessed March 12 2018
Wurn B, Wurn L, Patterson K. Decreasing dyspareunia and dysmenorrhea in women with endometriosis via a manual therapy: results from two independent studies. 2011;3(4)