Contrary to what many may mistakenly believe, the transitioning process does not cure endometriosis or rule out the development of endometriosis in the future in individuals that were assigned female at birth. As a matter of fact, it is possible that endometriosis may present as commonly in reproductive-aged transgender individuals that were assigned female at birth as it does in reproductive-aged cisgendered women. Thus, approaching related symptoms should have a largely similar work up. (1) Despite this, evaluation for endometriosis—a disease that is already elusive—is often underutilized in transgender patients. (2) In this article we will discuss why endometriosis is difficult to diagnose and treat, how the limited understanding of the disease and the lack of effective treatments mean that the transition process doesn’t cure or rule out the possibility of the disease. We then conclude with the importance of endometriosis being considered in the realm of possibilities for transgender individuals and the prudence of a referral to an endometrial specialist with an understanding of transgenderism if symptoms are present.

What is endometriosis and why is it so difficult to diagnose and treat?

Endometriosis is endometrial-like tissue that resembles the endometrium lining (the lining of the inside of the uterus), but which is found outside the uterus where it doesn’t belong. It can be located anywhere in the peritoneal cavity, can implant on organs, and in rare occurrences has been found outside of the peritoneal cavity on organs such as the lung and brain. (3, 4)

A significant reason that endometriosis is often difficult to diagnose and consider is the wide range of symptoms of the disease. These include menstrual cramps, pelvic pain, pain with penetration, burning or pain with urination, fatigue, infertility, constipation, and several other symptoms—or none at all. (5-7) Furthermore, it can be coexisting with other conditions with similar symptoms such as IBS, fibroids, fibromyalgia, IBD and autoimmune conditions, other gynecological conditions, and some cancers. Imaging has been found to be ineffective in detecting the most common manifestation of the disease and specific imaging for pelvic diseases is only somewhat effective in detecting more severe cases. To read more in depth on the difficulty of diagnosing endometriosis through imaging, click here. These many factors that complicate the diagnosis of the disease can mislead physicians into attributing your symptoms to other conditions due to a general lack of awareness of endometriosis and its wide array of symptoms. (8) As a result, the delay from the onset of symptoms to diagnosis on average is 7 years and includes seeing an average of 7 different physicians. (9, 10) As one can imagine this is a process that takes both a mental, physical, and financial toll on patients.

Several factors yield the vast majority of treatments for endometriosis ineffective, and thus, treating the disease is highly complex. The causes of the development of endometrial implants have yet to be proven and there are several postulated origins, several of which may be accurate. (11-14) As a result, eradication of existing endometriosis implants may or may not be vulnerable to a recurrence of the disease in the future depending on the causes of the disease in the patient. Hormonal medications that are used to treat the disease have very high side effect profiles and do not necessarily permanently eradicate endometriotic lesions, but suppress symptoms for a short period of time (read more about this here). Surgery is difficult to conduct as endometriotic lesions come in various colors and can be in many locations within the peritoneal cavity. Effective surgery should be carried out by a specialist in endometriosis excision surgery to maximize success rate and minimize effects of the surgery, however, this often isn’t the case. (15)

Transgender individuals that were assigned female at birth may still have endometriosis despite having a hysterectomy with or without bilateral oophorectomy and long-term testosterone treatment and/or GnRH agonists hormonal treatment. This is often overlooked by physicians due to incomplete understanding of endometriosis and it’s development, along with it’s complex presentation.

Physicians without a deep grasp of the complexity of endometriosis may assume a history of a hysterectomy with or without an oophorectomy rules out endometriosis as a possible cause of symptoms. However, it has been found that while these procedures may relieve symptoms, the only method to successfully resolve the disease itself rather than manage symptoms is by removing the endometrial implants completely. (16) This also keeps the risk of recurrence of endometriosis as low as possible. (16) Due to the many different postulated origins of endometriosis, the removal of the uterus and ovaries doesn’t necessarily rule out the possibility of endometriosis symptoms persisting, developing, or worsening.

Hormonal treatments utilized in the transition may be suppressing symptoms over a short period of time and may resolve symptoms in some patients, but they do not act as cures for endometriosis itself. (2) Subsequently, physicians should not rule out the possibility of endometriosis in symptomatic patients being treated with testosterone currently or that have been treated in the past. As for patients previously treated with GnRH agonists, which are used in some reassignment treatments, one cannot rule out endometriosis-related symptoms in the future due to high recurrence rates associated with the treatment. (17, 18)

Key takeaway: If a transgender individual is presenting with one or more symptoms of endometriosis, they should be referred to an endometriosis specialist.

Endometriosis is estimated to affect as many as 10% of reproductive aged women, which extrapolates roughly 190 million individuals globally. (8) While specific studies determining the prevalence rate in transgender individuals have yet to have been published, there may be a similar prevalence rate in transgender patients that were assigned female at birth. Physicians must take this grey zone into consideration.

With this in mind, there are many barriers that may keep transgender individuals from seeking care for symptoms that may be related to endometriosis. In a 2015 United States survey, it was found that the year prior, 33% of respondents reported experiencing negative interactions with healthcare providers related to their gender identity and 33% reported not seeking care as they could not afford it. (19) Furthermore, nearly one-quarter of survey respondents did not pursue care as they were concerned about being mistreated due to their gender identity. (19) Many transmasculine individuals report an additional stressor in seeing gynecological specialists due to further concern of discrimination and unwanted attention. (20) This stigma, discrimination, and lack of access to healthcare can further postpone the already lengthy time that it takes to diagnose endometriosis in transgender people, worsening their health outcomes and further marginalizing them as a group.

Consequently, it is important to educate both physicians and society at large about the potential prevalence of endometriosis in transgender individuals that were assigned female at birth. This will ensure sooner, more appropriate treatments and encourage transgender individuals to seek the care. This will additionally promote much-needed research into the prevalence of endometriosis in transgender patients and encourage investigation into better diagnosis and treatment methods for all individuals. It is further important to educate physicians, gynecologists, and endometriosis specialists that the disease may manifest itself in the transgender population and for these physicans to have a strong grasp of transgenderism to minimize any negative interactions and accommodate individuals of all genders.

If you are a transgender individual and believe you may have endometriosis or exhibit one of the many symptoms detailed above, it is important that you seek the expertise of a specialist in the disease that also understands transgenderism and hosts an accepting and safe environment for people of all genders. Schedule an appointment with CEAPS online, by email at info@iceaps.com, or over the phone by calling (703) 505-0444 to discuss evaluation and treatment options for endometriosis.

Authors:

           Gaby Moawad, MD, FACOG

Charbel Marche

Citations:

• Obedin-Maliver J. Pelvic pain and persistent menses in transgender men. https://transcare.ucsf.edu/guidelines/pain-transmen. Published June 17, 2016. Accessed September 8, 2020.
• Shim JY, Laufer MR, Grimstad FW. Dysmenorrhea and Endometriosis in Transgender Adolescents. https://www.sciencedirect.com/science/article/abs/pii/S1083318820302370. Published June 11, 2020. Accessed September 8, 2020.
• Sarma D, Iyengar P, Marotta TR, terBrugge KG, Gentili F, Halliday W. Cerebellar endometriosis. AJR Am J Roentgenol. 2004;182:1543–1546.
• Huang H, Li C, Zarogoulidis P, Darwiche K, Machairiotis N, Yang L, Simoff M, Celis E, Zhao T, Zarogoulidis K, Katsikogiannis N, Hohenforst-Schmidt W, Li Q. Endometriosis of the lung: report of a case and literature review. Eur J Med Res. 2013;18:13.
• Gallagher JS, DiVasta AD, Vitonis AF, Sarda V, Laufer MR, Missmer SA. The impact of endometriosis on quality of life in adolescents. J  Adolesc  Health  2018;63:  766-72.
• Nnoaham KE,  Hummelshoj  L,  Webster P, et al. Impact of endometriosis on quality of life and work  productivity:  a multicenter study across ten countries. Fertil  Steril  2011; 96(2): 366.e8-373.e8.
• Rush G, Misajon R, Hunter JA, Gardner J,  O’Brien    The  relationship  between endometriosis-related pelvic pain and  symptom  frequency,  and  subjective  well being.  Health  Qual  Life  Outcomes  2019; 17: 123.
• Ballard KD, Seaman HE, de Vries CS, Wright JT. Can symptomatology help in the diagnosis of endometriosis? Findings from a national case-control study. BJOG 2008; 115: 1382-91.
• Ballard K, Lowton K, Wright J. What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertil Steril 2006;86:1296-301
• Nnoaham KE, Hummelshoj L, Web-ster P, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011; 96(2): 366.e8-373.e8.
• Sampson JA. Peritoneal endometriosis due to the menstrual dissemination of endometrial tissue into the peritoneal cavity. Am J Obstet Gynecol 1927;14:422-69.
• Gargett CE, Schwab KE, Brosens JJ, Puttemans P, Benagiano G, Brosens I. Potential role of endometrial stem/progenitor cells in the pathogenesis of early onset endometriosis. Mol Hum Reprod 2014;20:591-8.
• Suginami H. A reappraisal of the coelomic metaplasia theory by reviewing endometriosis occurring in unusual sites and instances. Am J Obstet Gynecol 1991; 165:214-8.
• Jerman LF, Hey-Cunningham AJ. The role of the lymphatic system in endometriosis: a comprehensive review of the literature. Biol Reprod 2015;92:64.
• McMacken M. Laparoscopic excision of endometriosis. Published December 11, 2014. Accessed September 8, 2020.
• Rizk B, Fischer AS, Lotfy HA, et al. Recurrence of endometriosis after hysterectomy. Facts Views Vis Obgyn. 2014;6(4):219-227.
• Magon N. Gonadotropin releasing hormone agonists: Expanding vistas. Indian J Endocrinol Metab. 2011;15(4):261-267. doi:10.4103/2230-8210.85575
• Becker CM, Gattrell WT, Gude K, Singh SS. Reevaluating response and failure of medical treatment of endometriosis: a systematic review. Fertil Steril. 2017;108(1):125-136. doi:10.1016/j.fertnstert.2017.05.004
• James SE, Herman JL, Rankin S, Keisling M, Mottet L, Anafi M. The Report of the 2015 U.S. Transgender Survey. Published January 2017. Accessed September 8, 2020.
• Stovicek A. He Is 1 in 10: A Trans Man Shares What Life is Like With Endometriosis. Endometriosis Foundation of America. Published June 4, 2018. Accessed September 9, 2020.