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10 Research-Backed Truths About Endometriosis
What Endometriosis Patients Want Healthcare Professionals to Know
Kristina Kasparian, PhD
March 13, 2022

If you read that title again, it may seem strange to you. Patients wanting physicians to know more about a medical condition? Isn’t that a little backward?

Although this debilitating health condition afflicts nearly 200 million individuals globally,^1,2 endometriosis (en-doe-me-tree-O-sis, “endo” for short) remains misdiagnosed³ and ineffectively treated⁴ due to the scarcity of research funding⁵ and specialized medical training,⁶ as well as due to stigmas⁷ and biases^8,10 that impede patients’ timely access to healthcare.

Studies have shown that it can take six to twelve years¹¹ and consultations with five or more doctors¹² to diagnose endometriosis. Once a person is finally diagnosed, management remains challenging given the systemic¹³ nature of the disorder and its impact on the patient’s whole body, mental health, and quality of life.

Endometriosis patients have the added burden of having to be tireless advocates for their condition to catalyze change in how endo is perceived, discussed, diagnosed, and treated worldwide.

Here are 10 research-backed truths that endometriosis advocates would like medical staff (and the general public) to know about endo.

1. The definition of “endometriosis” needs updating in clinical practice

Endometriosis is a condition where tissue similar (but not identical) to the lining of the uterus grows elsewhere in the body.^14,15 This tissue creates inflammation, internal bleeding and fibrous scar tissue formation, restricts normal organ functioning, and causes chronic pain, interfering with fertility.¹⁶

Traditional definitions describe endometriosis as a condition where the endometrium (the lining of the uterus) grows outside the uterus as an ectopic or rogue form of the “normal” endometrial tissue. However, research analyzing immune cell dysfunctions and genetic pathways for endometriosis has demonstrated that endometriosis lesions have qualitatively different, pro-inflammatory and fibrotic properties than the “normal” endometrium that lines the uterus.¹⁷ Endometriosis lesions also have the capacity to produce their own estrogen¹⁸ from the local production of aromatase, which is not typically found in the uterine lining.^19,20

Despite these findings, many prominent clinical centers and high-ranking websites continue to inaccurately define endometriosis as a condition where the endometrium grows outside of the uterus. Why is this such an important distinction to make? Besides ensuring that clinical practice reflect actual scientific data, it’s important to get this distinction right because it informs medical treatment.

Treatments recommended for endometriosis typically include hormonal suppression, pregnancy or even hysterectomy, all with the same underlying goal of suppressing estrogen production by the ovaries and blocking menstruation. Unfortunately, these “treatments” do not necessarily stop the progression of endometriosis. A hysterectomy that leaves behind endometriosis outside the uterus is obviously ineffective. Hormonal therapies cause considerable side-effects and are not a one-size-fits-all solution for all patients. Though pregnancy is often encouraged by physicians as a method of rendering any endometriosis dormant, scientific findings have shown that pregnancy is not reliably associated with the regression of endometriosis lesions nor with improved symptoms, and that endometriosis may continue to advance²¹ during pregnancy.

(Side note: Patients find it psychologically triggering when offered pregnancy as a cure for their illness, when not all patients wish to become parents and over 50% of endometriosis patients struggle with infertility.)

2. A painful period is not the only symptom of endometriosis

Traditionally, endo is described as a (horrendously, debilitatingly, life-interruptingly) painful period. Very often, this (horrendous, debilitating, life-interrupting) pain is normalized and trivialized.²² Though painful menstruation is one of its hallmark symptoms, it is not necessarily the first symptom to appear, nor is pain limited to the time surrounding one’s period or ovulation.

Endometriosis is a complex, whole-body disease that impacts every bodily system.²³ Though not all individuals with endometriosis will have the same range or severity of symptoms, the condition can afflict the digestive, respiratory, urinary, reproductive, immune, lymphatic, musculoskeletal and nervous systems. As a result, the condition can cause a wide range of symptoms,²⁴ often clustering together, such as: extremely painful periods, painful sex, painful or difficult bowel movements, difficulty getting pregnant, bloating, abdominal/pelvic pain any time during the month, back pain, nausea and vomiting, constipation, diarrhea, food intolerances, allergies, brain fog, leg pain or numbness, urinary pain or dysfunction, chest pain, difficulty breathing, lung collapse, heavy or irregular bleeding, chronic anemia, fatigue, mood disturbances, vulvodynia, pain with tampons, migraines…Phew, that’s a long list!

Patients who complain about urinary or digestive issues are often misdiagnosed with urinary infections or irritable bowel syndrome,²⁵ though endo should be suspected and discussed early on. General practitioners, gynecologists and gastrointestinal specialists — who are often the first physicians seen by patients seeking to get to the bottom of their symptoms — must attentively listen for clues and ask the right questions to evaluate the patient’s full range of symptoms and how they may cluster together.

“It could be endometriosis” should be a sentence that patients hear during their first appointment(s) and not after a decade since their consultation with that very first physician who sent them home with Tylenol.

3. Endometriosis is not “just” a gynecological or reproductive condition

Endometriosis is not limited to the ovaries, nor to the pelvic region. It is not as rare as previously thought for endometriosis to involve extra-pelvic regions²⁶ like the urinary system (eg, bladder, ureters, kidneys), the digestive system (eg, intestines), and the thoracic region (eg, diaphragm, lungs, liver). Endo disrupts the functioning of the nervous system causing central sensitization,²⁷ a heightened response²? or hyperexcitability of the nervous system as a result of persistent pain. Given its whole-body nature, the treatment of endometriosis should not solely rely on a gynecologist but requires the involvement of a multidisciplinary team^29,30 with targeted pain management strategies.³¹

Research has also increasingly shown that endometriosis may not have one single disease pathway³² and has not yet been reliably associated with specific biomarkers.³³ Alterations and abnormalities in the endocrine and immune systems have been documented,^34,35 suggesting once again that the condition deserves more attention as a complex systemic disorder.

Endometriosis needs to be defined and treated as a systemic, multi-specialty condition and not “simply” a gynecological or reproductive disorder.

4. Imaging and colonoscopy are not enough to rule out endometriosis

One of the reasons for long diagnostic delays is the way that scans such as ultrasounds, CTs or MRIs are ordered and interpreted by radiologists and physicians. Extra-pelvic regions are not always thoroughly investigated when a physician orders a scan focusing on the pelvis. In addition, “normal” findings are typically interpreted as a lack of disease, and the patient is left without an explanation for their debilitating symptoms.

Experts argue that endometriosis cannot currently be ruled out by imaging. Endometriosis lesions are highly variable and take on many different appearances. Even on MRI, certain types of lesions and locations are more difficult to visualize.³⁶ Researchers focusing on the diagnostic accuracy of ultrasound methods have shown that sonographers should be trained on a systematic approach³⁷ to detect endometriosis. The sensitivity of imaging methods for diagnosing endometriosis is experience-dependent; results depend on the expertise of the person interpreting the scan.³⁸ Additional training and research are required before imaging methods can be considered a reliable tool for early diagnosis.

Patients complaining of digestive disturbances and intestinal issues are sometimes sent for a colonoscopy, but given that endometriosis rarely goes through the full thickness of the bowel’s layers, it would not be seen during a colonoscopy. A normal colonoscopy, however, cannot rule out endometriosis on the bowel or involvement of nearby structures irritating the bowel due to inflammation or fibrous adhesions. A study comparing pre-operative colonoscopy results with surgical findings showed that colonoscopy failed to detect 92% of cases of bowel involvement in endometriosis patients.⁴⁰

Though imaging protocols and interpretations should definitely be improved and standardized for earlier diagnosis and better surgical planning, the only definitive way to diagnose endometriosis remains laparoscopic surgery and histopathology of the excised tissue.⁴⁰

5. Early teens can have endometriosis before their first period

Patients are sometimes told they are “too young” to have endo, which continues to be erroneously defined as a menstrual problem. Clinical reports and research have shown that endometriosis lesions are found in young patients even before their first period^41,42 and that 70% of teens complaining of chronic pelvic pain were later diagnosed with endometriosis.⁴³ Diagnostic delays of up to twelve years can be reduced if young patients’ first complaints of abdominal or pelvic pain are taken more seriously.⁴⁴

6. Excision surgery is the gold standard to treat endometriosis

Surgery is typically considered a last resort and medical management of endometriosis is commonly suggested as the first-line treatment for endometriosis. Although hormonal therapy may effectively mask endometriosis symptoms in some — but not all — patients, the gold standard to remove the disease is to cut out (excise) the aberrant tissue from its root⁴⁵ rather than to burn it off the surface (ablate). Ablation or coagulation is a superficial approach that leaves the disease behind and results in poor outcomes, higher reoperation rates, and increased pain.⁴⁶ Despite these results, ablation (rather than excision or resection) remains the most widespread surgical approach for endometriosis.

Though minimally invasive, this surgery is not to be downplayed, unlike the way it was recently portrayed on Grey’s Anatomy (S18e10), where the patient was almost immediately diagnosed with endometriosis at the hospital, recommended surgery and told, “Let’s see if we can get it done today!” Endometriosis surgery is one of the most complex and specialized types a surgeon can perform.⁴⁷ According to surgical specialist Dr. Aileen Caceres, a patient’s anatomy is often so distorted by endometriosis that it can take two or more hours to establish normal anatomy before any endometriosis excision can even begin. Excision surgery is not a simple surgery any gynecologist can perform. The multidisciplinary input of colorectal or urologic surgeons is also often necessary.

Additional funding and medical training are imperative to increase the number of specialists worldwide for a condition afflicting 200 million people. Surgery is neither promptly nor financially accessible to patients, many of which have to travel and pay out of pocket for expert care.

7. Chronic pain must be treated in parallel

Access to pain management is a human right^48,49 and endometriosis pain should never be underestimated or dismissed as attention-seeking, drug-seeking, or depressive behavior.

In spite of being the only method of removing endometriosis, excision surgery is not a magical fix that alleviates the patients’ symptoms overnight. There are a number of possible pain generators besides the lesions themselves. After years of persistent inflammation, pain and physical/emotional trauma, the central nervous system has adapted to endometriosis and must be retrained. It has been well documented that persistent pain leads to poor posture and impacts the musculoskeletal system. Endometriosis patients frequently also suffer from pelvic floor dysfunction, vulvodynia, interstitial cystitis, and other pain syndromes due to higher muscle tension and a decreased ability to coordinate or relax muscles.³¹ The central nervous system has learned to live under repeated threat, in fight-or-flight mode, which heightens the brain’s perception of pain.⁵⁰ Shorter diagnostic delays would reduce the damage caused to the nervous system.

Complementary measures help decrease inflammation and tone down the heightened response of the nervous system, such as physiotherapy and pelvic floor rehabilitation, osteopathy, dietary changes, mindfulness, pain medication, muscle relaxants, cognitive behavioral therapy, or transcutaneous electrical nerve stimulation (TENS). A multidisciplinary approach is most effective in managing endometriosis, in parallel with surgical approaches.^29,30

8. A diagnosis is not optional, even if the condition is “benign”

Many healthcare providers prefer managing endometriosis medically, with an official (surgical) diagnosis considered optional and unnecessary. In their view, if symptoms can be attenuated through medical management, with hormonal therapy or pain medication, it’s a win for everyone. A risky surgery is avoided, wait times are reduced, and surgery resources are reserved only for those patients for whom all other treatments fail.

The problem is that medical management is not a viable solution for a huge proportion of endometriosis sufferers, including patients who wish to become pregnant. The side-effects are often debilitating, sending patients spiraling further into despair as they don’t feel like themselves and can’t get a handle on their daily routine. This trial-and-error wait-and-see strategy may seem like the less invasive option, but it allows endometriosis to invade every facet of the patient’s existence and costs them years of their life.

The relief reported by millions of patients worldwide when they recall waking up from surgery and being told they had advanced endometriosis is proof that a diagnosis is a crucial first-step (not a last resort) to healing.

Endometriosis is categorized as a benign condition though research has documented its association with a number of severe comorbidities, including certain forms of malignancy — endometriosis has been linked to several other chronic⁵¹ and autoimmune⁵² diseases, a higher risk of ovarian⁵³ and breast cancer,⁵⁴ thyroid cancer,⁵⁵ melanoma,⁵⁶ and cardiovascular⁵⁷ disease. Patients with endometriosis are often also diagnosed with adenomyosis (endometriosis found in the muscle wall of the uterus), fibromyalgia, interstitial cystitis, fibroids or hernias, leading them to experience more pain. It is important for providers to consider the possibility of comorbidities.

Dr. Leonardi, endometriosis surgeon and sonographer, argues that “endometriosis is ignored because it is benign; it is time to treat endometriosis as if it were cancer.”⁵⁸

As a benign condition, endometriosis should not be fatal, but it has been. Patients have died from complications of their undiagnosed and untreated endometriosis, and 50% of endo sufferers report having contemplated suicide.⁵⁹

9. Endometriosis care is negatively affected by unconscious bias

The word hysteria originates from the Greek word for uterus. Historically, women’s complaints about pain have been taken less seriously. A study investigating gender bias in the treatment of pain revealed that women who went to the ER with acute abdominal pain had to wait longer to receive medical treatment for their pain than men presenting with the same symptoms.⁶⁰ Another study showed that men were more likely to be recommended analgesics for pain, while women were more likely to be recommended psychological treatment.⁶¹

Endo symptoms are taken even less seriously in people of color. African American women, for example, have reported being faced with myths that lead to their dismissal, such as beliefs that Black women are more likely to have painful periods or that they are drug seekers.⁶² Studies have shown that African American women are perceived as being less sensitive to pain due to thicker skin and less sensitive nerve endings than white patients⁶³ — biases that influence how likely they are to receive the care they deserve.

LGBTQA2S+ patients also run into serious barriers when trying to access healthcare. Not all individuals with a uterus identify as “woman”, but language in healthcare is not inclusive, with endo described as affecting “girls” and “women”. Gendered medical spaces like fertility clinics or gynecologist offices also leave patients feeling underrepresented and isolated. Trans or non-binary patients report hiding their gender identity from their physicians out of fear of not being able to access appropriate care.^64,65

10. Endo impacts quality of life and costs our economy billions

Endometriosis is a global health crisis that drastically reduces people’s productivity,⁶⁶ autonomy, social engagement, and overall quality of life.⁶⁷ Living with debilitating symptoms has a tremendously detrimental impact on patients’ mental health⁶⁸ and relationships.⁶⁹ Endometriosis incurs a cost of billions of dollars a year on the economy^70,71 and constitutes a serious global health crisis.

Endometriosis is a complex and severely debilitating condition that warrants multi-specialty care. Much can be done to increase research funding, specialized training opportunities, and public awareness of endo.

Above all, patients would like to remind practitioners that empathy can drive change. Empathy is what allows us to remain open-minded as humans, to listen attentively, to keep our biases in check, to recognize when something is beyond our realm of expertise, and to be curious to learn more to make lives better.

Empathy makes the invisible visible.

Follow Kristina Kasparian on Instagram for more endometriosis resources!

References

(1) Zondervan, K., Becker, C., & Missmer, S.A. (2020). Endometriosis. New England Journal of Medicine, 382, 1244–1256.

(2) Bontempo, A. C., & Mikesell, L. (2020). Patient perceptions of misdiagnosis of endometriosis: results from an online national survey. Diagnosis, 7(2), 97–106.

(3) Greene, R., Stratton, P., Cleary, S. D., Ballweg, M. L., & Sinaii, N. (2009). Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis. Fertility and sterility, 91(1), 32–39.

(4) Rolla E. (2019). Endometriosis: advances and controversies in classification, pathogenesis, diagnosis, and treatment. F1000Research, 8, F1000 Faculty Rev-529.

(5) As-Sanie, S., Black, R., Giudice, L. C., Valbrun, T. G., Gupta, J., Jones, B., … & Nebel, R. A. (2019). Assessing research gaps and unmet needs in endometriosis. American journal of obstetrics and gynecology, 221(2), 86–94.

(6) Leonardi, M., Lam, A., Abrão, M. S., Johnson, N. P., & Condous, G. (2020). Ignored because it is benign–it is time to treat endometriosis as if it were cancer. Journal of Obstetrics and Gynaecology Canada, 42(4), 507–509.

(7) Sims, O. T., Gupta, J., Missmer, S. A., & Aninye, I. O. (2021). Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay. International Journal of Environmental Research and Public Health, 18(15), 8210.

(8) As-Sanie, S., Black, R., Giudice, L. C., Valbrun, T. G., Gupta, J., Jones, B., … & Nebel, R. A. (2019). Assessing research gaps and unmet needs in endometriosis. American journal of obstetrics and gynecology, 221(2), 86–94.

(9) Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences, 113(16), 4296–4301.

(10) Lowik, A. J. (2020). “Just because I don’t bleed, doesn’t mean I don’t go through it”: Expanding knowledge on trans and non-binary menstruators. International Journal of Transgender Health, 22(1–2), 113–125.

(11) Ballard, K., Lowton, K., & Wright, J. (2006). What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertility and sterility, 86(5), 1296–1301.

(12) Ballweg, M. L. (2004). Impact of endometriosis on women’s health: comparative historical data show that the earlier the onset, the more severe the disease. Best practice & research Clinical obstetrics & gynaecology, 18(2), 201–218.

(13) Taylor, H. S., Kotlyar, A. M., & Flores, V. A. (2021). Endometriosis is a chronic systemic disease: Clinical challenges and novel innovations. The Lancet, 397(10276), 839–852.

(14) World Health Organization (WHO). International Classification of Diseases, 11th Revision (ICD-11) Geneva: WHO 2018.

(15) International Working Group of AAGL, ESGE, ESHRE and WES, Carla Tomassetti, Neil P Johnson, John Petrozza, Mauricio S Abrao, Jon I Einarsson, Andrew W Horne, Ted T M Lee, Stacey Missmer, Nathalie Vermeulen, Krina T Zondervan, Grigoris Grimbizis, Rudy Leon De Wilde, An international terminology for endometriosis, 2021,, Human Reproduction Open, Volume 2021, Issue 4, 2021.

(16) Bulletti, C., Coccia, M. E., Battistoni, S., & Borini, A. (2010). Endometriosis and infertility. Journal of assisted reproduction and genetics, 27(8), 441–447.

(17) Giacomini, E., Minetto, S., Li Piani, L., Pagliardini, L., Somigliana, E., & Viganò, P. (2021). Genetics and inflammation in endometriosis: Improving knowledge for development of new pharmacological strategies. International Journal of Molecular Sciences, 22(16), 9033.

(18) Mori, T., Ito, F., Koshiba, A., Kataoka, H., Takaoka, O., Okimura, H., … & Kitawaki, J. (2019). Local estrogen formation and its regulation in endometriosis. Reproductive Medicine and Biology, 18(4), 305–311.

(19) Bulun, S. E., Fang, Z., Imir, G., Gurates, B., Tamura, M., Yilmaz, B., … & Deb, S. (2004, January). Aromatase and endometriosis. In Seminars in reproductive medicine (Vol. 22, ?01, pp. 45–50).

(20) Mikhaleva, L. M., Radzinsky, V. E., Orazov, M. R., Khovanskaya, T. N., Sorokina, A. V., Mikhalev, S. A., … & Sinelnikov, M. Y. (2021). Current knowledge on endometriosis etiology: a systematic review of literature. International Journal of Women’s Health, 13, 525.

(21) Leeners, B., Damaso, F., Ochsenbein-Kölble, N., & Farquhar, C. (2018). The effect of pregnancy on endometriosis — facts or fiction?. Human reproduction update, 24(3), 290–299.

(22) Rubinsky, V., Gunning, J. N., & Cooke-Jackson, A. (2020). “I thought I was dying:”(Un) supportive communication surrounding early menstruation experiences. Health Communication, 35(2), 242–252.

(23) Taylor, H. S. (2019). Endometriosis: a complex systemic disease with multiple manifestations. Fertility and Sterility, 112(2), 235–236.

(24) Nezhat, C., Vang, N., Tanaka, P. P., & Nezhat, C. H. (2020). Optimal management of endometriosis and pain. Endometriosis in Adolescents, 195–204.

(25) Chiaffarino, F., Cipriani, S., Ricci, E., Mauri, P. A., Esposito, G., Barretta, M., … & Parazzini, F. (2021). Endometriosis and irritable bowel syndrome: a systematic review and meta-analysis. Archives of Gynecology and Obstetrics, 303(1), 17–25.

(26) Andres, M. P., Arcoverde, F. V., Souza, C. C., Fernandes, L. F. C., Abrão, M. S., & Kho, R. M. (2020). Extrapelvic endometriosis: a systematic review. Journal of Minimally Invasive Gynecology, 27(2), 373–389.

(27) Zheng, P., Zhang, W., Leng, J., & Lang, J. (2019). Research on central sensitization of endometriosis-associated pain: a systematic review of the literature. Journal of Pain Research, 12, 1447.

(28) As-Sanie, S., Harris, R. E., Harte, S. E., Tu, F. F., Neshewat, G., & Clauw, D. J. (2013). Increased pressure pain sensitivity in women with chronic pelvic pain. Obstetrics and gynecology, 122(5), 1047.

(29) Agarwal, S. K., Foster, W. G., & Groessl, E. J. (2019). Rethinking endometriosis care: applying the chronic care model via a multidisciplinary program for the care of women with endometriosis. International Journal of Women’s Health, 11, 405.

(30) Opoku-Anane, J., Orlando, M. S., Lager, J., Lester, F., Cuneo, J., Pasch, L., … & Giudice, L. C. (2020). The development of a comprehensive multidisciplinary endometriosis and chronic pelvic pain center. Journal of Endometriosis and Pelvic Pain Disorders, 12(1), 3–9.

(31) Mechsner, S. (2022). Endometriosis, an Ongoing Pain — Step-by-Step Treatment. Journal of Clinical Medicine, 11(2), 467.

(32) Tosti, C., Pinzauti, S., Santulli, P., Chapron, C., & Petraglia, F. (2015). Pathogenetic mechanisms of deep infiltrating endometriosis. Reproductive Sciences, 22(9), 1053–1059.

(33) Hudson, Q. J., Perricos, A., Wenzl, R., & Yotova, I. (2020). Challenges in uncovering non-invasive biomarkers of endometriosis. Experimental Biology and Medicine, 245(5), 437–447.

(34) Herington, J. L., Bruner-Tran, K. L., Lucas, J. A., & Osteen, K. G. (2011). Immune interactions in endometriosis. Expert review of clinical immunology, 7(5), 611–626.

(35) Kyama, C. M., Overbergh, L., Mihalyi, A., Meuleman, C., Mwenda, J. M., Mathieu, C., & D’Hooghe, T. M. (2008). Endometrial and peritoneal expression of aromatase, cytokines, and adhesion factors in women with endometriosis. Fertility and sterility, 89(2), 301–310.

(36) Foti, P. V., Farina, R., Palmucci, S., Vizzini, I. A. A., Libertini, N., Coronella, M., … & Ettorre, G. C. (2018). Endometriosis: clinical features, MR imaging findings and pathologic correlation. Insights into imaging, 9(2), 149–172.

(37) Leonardi, M., & Condous, G. (2018). How to perform an ultrasound to diagnose endometriosis. Australasian journal of ultrasound in medicine, 21(2), 61–69.

(38) Alborzi, S., Rasekhi, A., Shomali, Z., Madadi, G., Alborzi, M., Kazemi, M., & Nohandani, A. H. (2018). Diagnostic accuracy of magnetic resonance imaging, transvaginal, and transrectal ultrasonography in deep infiltrating endometriosis. Medicine, 97(8).

(39) Milone, M., Mollo, A., Musella, M., Maietta, P., Fernandez, L. M. S., Shatalova, O., … & Milone, F. (2015). Role of colonoscopy in the diagnostic work-up of bowel endometriosis. World Journal of Gastroenterology, 21(16), 4997.

(40) Rafique, S., & Decherney, A. H. (2017). Medical management of endometriosis. Clinical obstetrics and gynecology, 60(3), 485.

(41) Marsh, E. E., & Laufer, M. R. (2005). Endometriosis in premenarcheal girls who do not have an associated obstructive anomaly. Fertility and sterility, 83(3), 758–760.

(42) Troìa L., Biscione A., Colombi I., Luisi S. (2021) Management of Endometriosis in Teenagers. In: Genazzani A.R., Nisolle M., Petraglia F., Taylor R.N. (eds) Endometriosis Pathogenesis, Clinical Impact and Management. ISGE Series. Springer, Cham.

(43) Yeung Jr, P., Sinervo, K., Winer, W., & Albee Jr, R. B. (2011). Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary?. Fertility and sterility, 95(6), 1909–1912.

(44) Youngster, M., Laufer, M. R., & Divasta, A. D. (2013). Endometriosis for the primary care physician. Current opinion in pediatrics, 25(4), 454–462.

(45) Abbott, J. A., Hawe, J., Clayton, R. D., & Garry, R. (2003). The effects and effectiveness of laparoscopic excision of endometriosis: a prospective study with 2–5 year follow?up. Human Reproduction, 18(9), 1922–1927.

(46) Pundir, J., Omanwa, K., Kovoor, E., Pundir, V., Lancaster, G., & Barton-Smith, P. (2017). Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis. Journal of minimally invasive gynecology, 24(5), 747–756.

(47) Redwine, D. (2013). Why is laser vaporization best avoided in the surgical treatment of endometriosis? Retrieved from http://endopaedia.info/treatment2.html

(48) Lohman D, Schleifer R, Amon JJ. Access to pain treatment as human right. BMC Medicine. 2010;8:8.

(49) Brennan F, Carr DB, Cousins M. Pain management: a fundamental human right. Anesth Analg. 2007;105(1):205–221.

(50) Nijs, J., George, S. Z., Clauw, D. J., Fernández-de-las-Peñas, C., Kosek, E., Ickmans, K., … & Curatolo, M. (2021). Central sensitisation in chronic pain conditions: latest discoveries and their potential for precision medicine. The Lancet Rheumatology, 3(5), e383-e392.

(51) Kvaskoff, M., Mu, F., Terry, K. L., Harris, H. R., Poole, E. M., Farland, L., & Missmer, S. A. (2015). Endometriosis: a high-risk population for major chronic diseases?. Human reproduction update, 21(4), 500–516.

(52) Shigesi, N., Kvaskoff, M., Kirtley, S., Feng, Q., Fang, H., Knight, J. C., … & Becker, C. M. (2019). The association between endometriosis and autoimmune diseases: a systematic review and meta-analysis. Human reproduction update, 25(4), 486–503.

(53) Gaia?Oltean, A. I., Braicu, C., Gulei, D., Ciortea, R., Mihu, D., Roman, H., … & Berindan?Neagoe, I. (2021). Ovarian endometriosis, a precursor of ovarian cancer: Histological aspects, gene expression and microRNA alterations. Experimental and Therapeutic Medicine, 21(3), 1–1.

(54) Kvaskoff, M., Mahamat-Saleh, Y., Farland, L. V., Shigesi, N., Terry, K. L., Harris, H. R., … & Missmer, S. A. (2021). Endometriosis and cancer: A systematic review and meta-analysis. Human reproduction update, 27(2), 393–420.

(55) Gandini, S., Lazzeroni, M., Peccatori, F. A., Bendinelli, B., Saieva, C., Palli, D., … & Caini, S. (2019). The risk of extra-ovarian malignancies among women with endometriosis: a systematic literature review and meta-analysis. Critical reviews in oncology/hematology, 134, 72–81.

(56) Kvaskoff, M., Han, J., Qureshi, A. A., & Missmer, S. A. (2014). Pigmentary traits, family history of melanoma and the risk of endometriosis: a cohort study of US women. International journal of epidemiology, 43(1), 255–263.

(57) Mu, F., Rich-Edwards, J., Rimm, E. B., Spiegelman, D., & Missmer, S. A. (2016). Endometriosis and risk of coronary heart disease. Circulation: Cardiovascular Quality and Outcomes, 9(3), 257–264.

(58) Leonardi, M., Lam, A., Abrão, M. S., Johnson, N. P., & Condous, G. (2020). Ignored because it is benign–it is time to treat endometriosis as if it were cancer. Journal of Obstetrics and Gynaecology Canada, 42(4), 507–509.

(59) Bevan, G. (2019, October 6). Endometriosis: Thousands share devastating impact of condition. BBC News. Retrieved March 12, 2022, from https://www.bbc.com/news/health-49897873

(60) Schäfer, G., Prkachin, K. M., Kaseweter, K. A., & de C Williams, A. C. (2016). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618–1625.

(61) Chen, E. H., Shofer, F. S., Dean, A. J., Hollander, J. E., Baxt, W. G., Robey, J. L., … & Mills, A. M. (2008). Gender disparity in analgesic treatment of emergency department patients with acute abdominal pain. Academic Emergency Medicine, 15(5), 414–418.

(62) The Endometriosis Summit. (2020). Race and Endometriosis: Exploring Myths and Misconceptions. https://www.theendometriosissummit.com/blog/myths-and-misconceptions-perpetuating-racism-in-endometriosis-infertility-and-pelvic-pain.

(63) Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences of the United States of America, 113(16), 4296–4301.

(64) Cheng, P. J., Pastuszak, A. W., Myers, J. B., Goodwin, I. A., & Hotaling, J. M. (2019). Fertility concerns of the transgender patient. Translational Andrology and Urology, 8(3), 209.

(65) Dutton, L., Koenig, K., & Fennie, K. (2008). Gynecologic care of the female-to-male transgender man. Journal of Midwifery & Women’s Health, 53(4), 331–337.

(66) Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., & Raine-Fenning, N. (2013). The social and psychological impact of endometriosis on women’s lives: a critical narrative review. Human reproduction update, 19(6), 625–639.

(67) Della Corte, L., Di Filippo, C., Gabrielli, O., Reppuccia, S., La Rosa, V. L., Ragusa, R., … & Giampaolino, P. (2020). The burden of endometriosis on women’s lifespan: a narrative overview on quality of life and psychosocial wellbeing. International Journal of Environmental Research and Public Health, 17(13), 4683.

(68) Gambadauro, P., Carli, V., & Hadlaczky, G. (2019). Depressive symptoms among women with endometriosis: a systematic review and meta-analysis. American Journal of Obstetrics and Gynecology, 220(3), 230–241.

(69) Facchin, F., Buggio, L., Vercellini, P., Frassineti, A., Beltrami, S., & Saita, E. (2021). Quality of intimate relationships, dyadic coping, and psychological health in women with endometriosis: Results from an online survey. Journal of psychosomatic research, 146, 110502.

(70) Nnoaham, K. E., Hummelshoj, L., Webster, P., d’Hooghe, T., de Cicco Nardone, F., de Cicco Nardone, C., … & Study, W. E. R. F. G. (2011). Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertility and sterility, 96(2), 366–373.

(71) Soliman, A. M., Surrey, E., Bonafede, M., Nelson, J. K., & Castelli-Haley, J. (2018). Real-world evaluation of direct and indirect economic burden among endometriosis patients in the United States. Advances in therapy, 35(3), 408–423.

I first heard about Henrietta Lacks through a friend three years ago when she shared a news article about Johns Hopkins naming a new research building after her. In that article, I learned that “Henrietta Lacks was a young mother of five from eastern Baltimore County who, despite radiation treatment at the Johns Hopkins Hospital, died in 1951 of an aggressive cancer. Lacks was the source of the HeLa cell line that has been critical to numerous advances in medicine.”

When I first read the article, I thought that was pretty cool that Johns Hopkins was trying to right the wrong they had done decades prior; they took Henrietta’s cells for scientific study without her permission and immediately reaped the benefits of science because of her. But she died from the aggressive cancer. I understood when I read the article that naming a building in her honour is nice and all, but I feel there is still so much more that needs to be done to do right by her family specifically.

You might be asking, “how does the story of Henrietta Lacks relate directly to Endometriosis?”

Over the past 19 years, I have subscribed to several medical journals in an effort to try to learn more about endometriosis. Whenever I felt I had a decent understanding of the research, I would regurgitate what I learned by posting to this blog. Occasionally I would run across the term “HeLa” in some of those research papers, but the science and language of the papers was over my head, so they never got posted here, though I kept them in a folder^{1, 2, 3}. So while I had seen the term “HeLa” in endometriosis-related research papers and medical studies, I didn’t know the Very Important History behind the HeLa cells.

Even at the time of seeing the Johns Hopkins article my friend had posted three years ago, I still hadn’t quite put the history and significance together. It was one of those “I think I’ve seen that term somewhere before but can’t recall where…” and in fact, it had been almost a decade since I’d seen that term, as indicated by the linked references above. This also sadly corresponds to me having abandoned blogging about endometriosis for many years in the wake of a devastating divorce, whereupon I was made to feel that I was ‘obsessed’ with being sick by constantly talking about endometriosis with friends, family, in my blog and in my video series. The ex spouse used this as justification for their affair, and even went so far as to say that he couldn’t take care of me anymore, despite the fact I was employed full time as a preschool teacher and was also engaged in hobbies outside of the home at his request. But I digress…

As I was saying, I still hadn’t quite put the history and significance together.

Until May 2021.

That’s when another friend shared an MLive article about Henrietta Lacks – this time in regards to the COVID-19 vaccine. I was moved by the article in many regards:

• I didn’t know the Pfizer vaccine for COVID-19 was developed in Michigan until I read that article, and it just so happens that the Pfizer vaccine is what I received in April, 2021, and I’m also originally from Michigan.
• The vaccine was developed using the HeLa cell line, and the article went into much more detail about Henrietta Lacks and her family legacy than the Johns Hopkins article had.
• And her great nephew Jermaine lives in Michigan, and has been honouring his Great Aunt Henrietta by teaching others about her and how her immortal cells are contributing to major scientific breakthroughs to this very day.
• Jermaine started out with an art exhibit in a Kalamazoo Michigan library, then developed a virtual presentation to continue educating people during the pandemic, and now he’s taken it on the road as The Immortal Life of Henrietta Lacks Traveling Museum.

Additionally, there is also a book, published in 2010 titled The Immortal Life of Henrietta Lacks, which I finally purchased last year. Rebecca Skloot, the author of that book, also created The Henrietta Lacks Foundation, which I donated to. The Foundation’s statement reads:

Established in 2010 by Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, the Foundation is inspired by the life of Henrietta Lacks, whose cancer cells—code named HeLa—were taken without her knowledge in 1951. They became one of the most important tools in medicine—with damaging consequences for her family, many of whom often struggled to get access to the very health care advances their mother’s cells helped make possible. Unfortunately, there are numerous examples of historic research studies conducted on individuals—particularly within minority communities—without their knowledge or consent. These include the Tuskegee Syphilis Studies, the Human Radiation Experiments, and others. The Henrietta Lacks Foundation seeks to provide assistance to individuals and their families who have been directly impacted by such research. The Foundation also seeks to promote public discourse concerning the role that contributions of biological materials play in scientific research and disease prevention, as well as issues related to consent, and disparities in access to health care and research benefits, particularly for minorities and underserved communities.

The Henrietta Lacks Foundation

In May 2021 after reading the MLive article, I was so overcome with gratitude for the immortal cells of Henrietta Lacks that I declared, “I need a Henrietta Lacks saint candle, okay?”

Saint Candles are pretty pop-culture, but I couldn’t find one anywhere for Henrietta Lacks. In December 2021, I searched again to no avail, so I looked up some companies creating Saint Candles and picked one I felt might be a good fit. I emailed a store in New Orleans called Mose, Mary and Me. I told them a bit about Henrietta Lacks and why I felt she should have a Saint Candle. Initially it was a custom order for me and my friend who had told me about Mrs. Lacks a few years ago, but both me and my friend hoped the candle would also be added to Mose Mary and Me’s existing line of candles. Great news! It has! You can buy a Saint Henrietta Lacks candle, too! Mose Mary and Me chose the image based upon a painting of her at the Smithsonian National Portrait Gallery (read about the portrait here).

If you purchase a Saint candle, please also pop over to the Henrietta Lacks Foundation and make a donation so that we may also continue to honour her family and the Black community while we thank Henrietta Lacks for the medical breakthroughs that have allowed us to better understand endometriosis.

“Endometriosis knows no gender. Everyone in the endo community deserves to feel respected, heard and welcomed just as they are. We see you and are here for you.” Find endoQueer on Instagram, Facebook, Twitter and their website.

I am a one-person show at LivingWithEndometriosis, and I agree with and embrace what endoQueer has to say. I am also queer, pan, demi and gender-fluid. <3

Fact or Myth? “Hormone therapy cures endometriosis.”

MYTH!

endometriosis.org writes:
“Synthetic hormonal drugs like the pill, Provera, Danazol and Zoladex have been used for many years to ‘treat’ endometriosis. However, these hormonal treatments do not have any long-term effect on the disease itself. They do temporarily suppress (quieten) the symptoms, but only while the drugs are being taken. Once use of the drugs ceases, symptoms more often than not return.

This means that hormonal treatments do not have a role in treating (eradicating) endometriosis. If eradication of the disease is desired, surgery performed by a gynaecologist with extensive knowledge and experience of the specialised techniques used for endometriosis is the only effective medical treatment.”

The Center For Endometriosis Care (CEC) writes:

“There is NO evidence that women treated with these agents have their endometriosis cured. On the contrary, there is ample evidence that most women have a prompt return of symptoms after they discontinue the drug. Menopause is a clinical situation which can be quite similar to the state induced by Lupron or Synarel treatment. When you consider that women who still have implants of endometriosis in their pelvis after menopause are very likely to have problems when postmenopausal hormone therapy is begun, it is hard to understand why anyone would reasonably expect a long-term cure from creating a state of extreme hypoestrogenism (lack of estrogen). In truth, if the implants are present, they can respond to stimulation. There has never been a medication that will cure the disease.” [See also Dr. Albee on suppressive medications and Dr. Albee on suppressing endo with birth control pills].

ICER (Institute for Clinical and Economic Review)‘s 2018 report on Elagolix: they “voted unanimously that the evidence was not adequate to distinguish the net health benefit of elagolix from that of treatment with either a GnRH agonist (leuprorelin acetate) or a hormonal contraceptive (depot medroxyprogesterone), due to limited and mixed evidence on clinical effectiveness and potential risks.

“They also noted the uncertainty around the therapy’s long-term side effects and clinical benefit, as elagolix use was limited to 6-12 months in clinical trials yet is intended to treat a chronic and disabling condition.

“While elagolix appears to offer short-term clinical benefits in terms of reduced pain and improved quality of life for women living with endometriosis, evidence is not yet sufficient to rule out the possibility that this therapy may pose long-term safety risks for patients,” noted Dan Ollendorf, PhD, ICER’s Chief Scientific Officer.”

You can find this and other myths here.

During today’s segment of the Worldwide Endometriosis March, Katie Luciani of The Endometriosis Network Canada echoed my sentiments back on March 2, 2021 about gendered language, only they’ve been saying it for almost a year now! <3

Happening Now! The virtual Worldwide Endometriosis March!

DAY 2 – PART 1:

DAY 2 – PART 2:

Happening Now! The virtual Worldwide Endometriosis March!

DAY 1 – PART 1:

DAY 1 – PART 2:

Treating Endometriosis as a Women’s Disease Hurts Patients of All Genders

Living with endo is already hard when you’re a white cis woman. For LGBTQ people dealing with a “women’s disease,” it’s especially painful.
by Emily Lipstein

In 2016, Les Henderson’s lung collapsed twice in two weeks. Henderson, a Black, masc-of-center lesbian who uses she and they pronouns, was diagnosed with thoracic endometriosis after waking up from surgery to fix the collapsed lung – and only because her surgeon thought to connect it with the timing of her period. 

Henderson, now 36, was diagnosed with endometriosis when they were 29 after years of struggling with terrible pain during their period. It wasn’t until they were recovering from their lung collapses a few years later that they learned endometriosis could be found elsewhere in the body. 

They blamed this delay on the inadequate care they received from biased doctors. “I’ve gone through the ringer with several OBGYNs. If I were a typical feminine, cis straight woman, I’d be taken a lot differently,” they said. “Masculine people aren’t expected to hurt, aren’t expected to be weak. And that’s something that I have definitely noticed with the unconcern and disregard I’ve gotten with this.”

“What is it about myself that’s not deserving of endo care?” said Henderson. “What is it about this trans person that you can’t properly help? What is it about this Black woman that you can’t help?”

It takes nearly a decade for most patients to receive a diagnosis of endometriosis, which is said to impact one in 10 people assigned female at birth. When a patient is LGBTQ, diagnosis can take a lot longer – in part because queer and trans people have statistically lower access to medical care than cis patients in all senses, but also because of the way endo is characterized as a “women’s illness.” 

“We consider [endometriosis] this disease of ‘menstruating females,'” said Heather Guidone, Patient Care Advocate and Program Director at the Center for Endometriosis Care in Atlanta, Georgia. “What about gender-diverse folks?”  

“[Endometriosis is] so grounded in this notion that [it’s] a disease of affluent white women,” said Guidone. “If you don’t look like what you think an endometriosis patient is ‘supposed’ to look like, your disease may be overlooked.” According to Guidone, this bias is predicated on how endometriosis is misunderstood on a medical level. “It all links back to the idea that this is a pelvic disease, this is a womb disease. Literally, this is a disease that’s found outside of the uterus.”

Although endometriosis is linked to the hormone fluctuations associated with menstruation, “Endo is not just painful periods,” said Jessica Shim, a gynecologist at Boston Children’s Hospital. The disease is caused by tissue that’s similar to (but biologically different from) the tissue that lines the inside of the uterus that grows outside of the uterus. It can adhere to parts of the reproductive system and other pelvic organs. Endometriotic lesions can also be found outside the pelvic region. The condition can cause severe pain, infertility, pain during sexual penetration and orgasm, digestive issues, and brain fog, among other debilitating symptoms.  

Endometriosis is commonly framed as largely impacting white, middle-class women in their “childbearing years.” This stereotype persists because prominent early theories of endometriosis (like the rest of gynecology) were rooted in racism and sexism. For nearly 100 years, the gynecologist John A. Sampson’s theory that endometriosis was caused by “retrograde menstruation,” or menses that flow backwards into the pelvis, has been the basis for how doctors approach treatment. While it may be one cause of endometriosis, research shows most people who menstruate exhibit retrograde menstruation. For decades, pregnancy and hysterectomy were touted as “cures,” and today, birth control and other medications that mimic pregnancy or menopause are still prescribed to treat symptoms of endometriosis.

Endometriosis is a disease process driven by estrogen, according to Shanti Mohling, a gynecological surgeon based in Portland. Endometriosis doesn’t require the ovaries to produce estrogen: It actually makes its own. This means that a hysterectomy, inducing menopause, or pregnancy won’t stop the disease.

“The effects of endo aren’t just related to pregnancy, conception, and menstruation,” said Cara Jones, a professor of women’s studies at California State University who uses she and they pronouns. Her research uses feminist, queer, and disability studies as a framework for understanding endometriosis as a “dynamic disability.” According to Jones, “It affects the digestive system, the musculoskeletal system, and different organs. It affects mood. It’s a whole-body condition.”

Joe V. Meigs, a once-celebrated Harvard gynecologist, is largely to blame for 20th century doctor’s obsession with endometriosis and pregnancy. As Jones wrote in the 2020 article “Queering Gendered Disabilities,” “Meigs spent his career encouraging physicians to compel upper-middle class white women to have children early and often,” due to his belief that “endometriosis developed from failing to use their reproductive systems.” His work made a target of career women, since many endometriosis patients were diagnosed after discovering their infertility in their late 30s or early 40s. Meigs even argued for policies that would pay white men more so their wives could stop working and focus on having babies.

Many health care professionals have rightfully thrown out the outdated and incorrect guidance popularized by Sampson and Meigs. But many leading medical institutions continue to define and diagnose endometriosis as anchored in white, cis, heterosexual reproduction. “Many clinicians are unable to disentangle gender from anatomy when it comes to providing care,” said Frances Grimstad, another gynecologist at Boston Children’s Hospital.

According to the New York Times, most medical schools only spend five hours educating students on LGBTQ-specific practices, which leaves patients to educate their own doctors while in the exam room, or stay mum entirely. This can mean that queer and trans people may be hesitant to seek treatment for endometriosis, in part because relying on trans and queer patients to advocate for themselves on an individual level can be exhausting for them and counterproductive to their path towards healing. “I’m usually fine answering questions and educating people,” said Ryan McGill, a 27-year-old transmasculine non-binary person. “But: Right now it feels like there’s like a gremlin in my stomach trying to escape. Can you please help me?“

Kat Aschman, who is 24 and non-binary, delayed going to the doctor after multiple bad experiences. “I didn’t want to have to go into a doctor’s office and be told, “Oh, that’s just a women’s health issue.” I didn’t want to be labeled as a woman in order to seek treatment. So I avoided treatment until I really needed to.”/p>

Some of the people VICE spoke to made the choice to not disclose their gender identity to medical providers in the past in order to avoid mistreatment. “I’m not entirely sure that my doctor understood that I wasn’t a woman,” Aschman said. “I just wanted to get relief, because it was impacting my ability just to function.”

“I haven’t ever talked to one of my endometriosis doctors about gender identity,” said Kat Eckert, a queer, non-binary person who uses she and they pronouns. “I don’t know if it would be a safe space to bring that up.” These experiences are backed up by a 2015 study, which found that a majority of healthcare providers show implicit preference for straight patients over queer ones.

Inadequate training around queer healthcare issues can be dangerous for LGBTQ patients – especially for trans patients undergoing gender-affirming treatments. After being prescribed birth control to manage their endo symptoms, McGill asked their doctor about what drug interactions the birth control would have with the testosterone they took as a gender-affirming medication. The doctor had no idea what interactions existed between the two drugs.  

“I’m not gonna take something if you don’t know how it’s going to interact with my particular body,” McGill said. “If my doctor handed me medication and is not sure of herself, why would I feel comfortable putting that in my body?”

Going to a queer-friendly clinic isn’t necessarily the answer, either. Just because a physician provides gender affirming healthcare doesn’t mean they’re automatically more understanding of pelvic pain than the average doctor. “It’s challenging,” Henderson explained, “[Sometimes] you find a queer-[friendly] doctor, but they know nothing of endo. [Or] you find an endo specialist, but they’re biased.”

Emory Pringnitz – a 24-year-old with endometriosis who identifies as queer, bisexual, and non-binary ”had the former experience with one OBGYN, which soured the identity-affirming aspects of their care. “That’s when I decided that the lovely bedside manner she was giving me wasn’t worth not seeing any symptom relief,” they said.

Trans healthcare isn’t exempt from cissexism. Some medical providers won’t think to diagnose endometriosis in transmasculine patients, even when they present classic signs of the disease, because of their gender identity. As Shim explained, some patients and doctors believe that being on T can solve pelvic pain and painful periods by stopping them altogether. When the bleeding and pain continue, many doctors have no idea what to do.

Cori Smith, a trans man with endo, described receiving biased care in a blog written for the Endometriosis Association of America. His lapsed symptoms came back after he started T, and he requested a hysterectomy to relieve his pain. While the surgeon removed Smith’s two swollen ovaries, he refused to remove his uterus, “allegedly telling Smith that he ‘didn’t feel comfortable aiding in [his] transition,’ according to the piece.

“Uterectomies are overprescribed for cisgender women with endo, yet trans men are denied the same treatment,” summarized Jones in “Queering Gendered Disabilities.” But Henderson described an experience where one OBGYN suggested they get a hysterectomy after they disclosed their queer identity because, Henderson said, the provider claimed not to “understand [their] lifestyle.” Racism may have been part of why this doctor pushed Henderson to get a hysterectomy: Black women in America receive hysterectomies at rates far surpassing white women; a whistleblower recently brought light to the eugenicist practice of forcing hysterectomies on Latinx women in ICE detention centers.  

“Women of color are being offered a hysterectomy almost right off the bat for endometriosis,” said Jones. “We have these divergent tracks for different groups of people experiencing the same thing.”  

This June, Grimstad and Shim published a study looking at how endometriosis presents in 35 trans adolescent patients experiencing pelvic pain after starting to transition on T. Only seven were evaluated for endometriosis through laparoscopy, which is the only way to affirmatively make a diagnosis. “We found that there was a 100 percent detection rate of endometriosis in these patients,” said Shim. Their study should encourage doctors to take time to investigate the cause of transitioning patients’ pain, as many incorrectly believe that being on T should stop endometriosis symptoms.

Patients can’t sit around and wait for research to catch up to their lives. It’s up to clinicians to take steps to address biases right now. The people VICE spoke to suggested that creating a welcoming environment, being inclusive on intake forms, and having providers share their own pronouns is an easy and necessary place to start.  

“I don’t care whether they’re the receptionist – all the way up to the surgeon, everyone needs to have training,” said Henderson.

“You don’t need to have a budget meeting and in a coalition get together to decide to say ‘people with periods’ instead of ‘women,'” said Guidone, who believes that the best way to give patients care is to actually ask them what they want – whether it’s preserving their fertility, getting rid of pain, or both of those things, or something more.  

As patients await these changes, trans men will still develop pelvic pain and non-binary people will be misgendered in medical settings as they seek care.

The gendered biases, misconceptions, bigotry, and simply bad information that are inherent to endometriosis have endlessly frustrated Henderson in their attempts to access treatment. “If you can’t check your prejudices when you’re serving the public, you need to take your ass to another profession,” they said. “Health care is no place to be when you can’t get your biases in check.”

Emily Lipstein is the Senior Social Editor for Motherboard. Follow her on Twitter.

For transgender men, pain of menstruation is more than just physical

Safety concerns and a lack of access to menstruation products are among the issues trans and gender-nonconforming people face during “that time of the month.”

Jan. 11, 2020, 8:38 AM PST By Chloe Atkins

When transgender model and activist Kenny Ethan Jones experienced his first period, he faced both physical and psychological pain. Initially, Jones, who had not yet come out as trans at the time, felt like he was losing control and didn’t understand what was happening to his body. However, one thing was clear: He didn’t feel like himself.

“I didn’t believe that having periods would be a part of my lived experience,” Jones told NBC News. “I felt isolated; everything about periods was tailored to girls, yet me, a boy, was experiencing this and nothing in the world documented that.”

He currently experiences a wide range of challenges with his monthly bleeding, especially when it comes to getting his hands on menstrual hygiene products.

“Having a period already causes me a lot of [gender] dysphoria, but this dysphoria becomes heightened when I have to shop for a product that is labeled as ‘women’s health’ and in most cases, is pretty and pink,” Jones explained.

Some transgender and gender-nonconforming people who menstruate, like Jones, say when the products are categorized as women’s products, they can feel alienated – and may even avoid purchasing them altogether.

“I’ve definitely seen a positive shift with the discussion around women experiencing periods, but the stigma towards trans men, nonbinary and intersex individuals having them is still alive and well,” said Jones, who gained attention in 2018 when he was the face of a U.K.-based menstruation company’s ad campaign. “People are still reluctant to the idea that it’s not only women that experience periods.”

Jennifer Weiss-Wolf, founder of Period Equity, which advocates for affordable and accessible menstruation products, said, “Anyone who menstruates needs to be part of the discussion and decision-making about their own health and well-being.”

The hurdles some trans men and gender-nonconforming people who menstruate say they face include the high cost of period supplies, lack of access to the products, safety concerns and inadequate medical care. Some of these challenges were recently brought to light when a story about menstruation product makerAlways removing the female sign from its sanitary products went viral in October.

Economic vulnerability
A box of 36 tampons, which could easily be used within one menstruation period, could cost as much as $12 – that’s significantly more than the federal minimum wage of $7.25 per hour. Additionally, menstrual hygiene products sold in the U.S. are still subject to sales tax in 32 states.

A survey published last year in the journalObstetrics and Gynecology found that nearly 64 percent of low-income women in St. Louis, Missouri, could not afford menstrual products – and nearly half of the women who participated in the survey were unable to afford both food and period products.

The cost and taxation of menstruation products could hit transgender people even harder, according to Rodrigo Heng-Lehtinen, deputy executive director of the National Center for Transgender Equality.

Trans individuals, according to Heng-Lehtinen, “are experiencing poverty, unemployment and underemployment at higher rates, so there is absolutely economic vulnerability here.”

His organization’s 2015 U.S. Transgender Survey found trans individuals are more than twice as likely to live in poverty and three times as likely to be unemployed as the general population.

Lack of access
Not only are transgender individuals impacted by the cost of menstrual products, but they also may not have access to them when they are free. While they are sometimes available without cost in women’s restrooms, Gabriel Arkles, senior staff attorney at the ACLU’s LGBT & HIV Project, said that those who menstruate who feel more comfortable using male restrooms will almost never have access to free tampons and pads.

Some schools likeNew York University have taken steps to distribute free menstrual hygiene products across campus, specifically in women’s and gender-neutral restrooms and offices. While advocates applaud those prioritizing menstrual inclusivity, they argue these products should be in all restrooms.

“This is a health care product, so it should be widely available. I think everyone in society is better off if they are more available for cheaper prices or for free in more places,” Heng-Lehtinen said.

Homeless transgender men face similar barriers when accessing tampons and pads at shelters. Women’s shelters, if they can, will offer the products, while men’s shelters will likely have little to no options for those who menstruate, according to Arkles.

Safety concerns
Even if cost is a nonissue, using a men’s restroom can be daunting for those who have their period. The sound of opening a tampon or pad, or simply carrying one, can lead to unwanted attention.

“You might have this monthly terror where you’re concerned that if you go to the restroom, and someone sees a tampon, then they’re going to start asking questions,” Heng-Lehtinen said.
(See also ‘Frightening’ online transphobia has real-life consequences, advocates say)

The 2015 U.S. Transgender Survey, the largest survey of trans people in the U.S., found that nearly 60 percent of transgender respondents reported being too afraid to use public restrooms due to fear of a confrontation. Twelve percent reported being verbally harassed while accessing a bathroom in the past year.

“Men’s restrooms typically don’t even have places to throw away menstrual products within a stall. We have to discard them in a trash can in the common area of the restroom or even outside of the restroom,” Arkles said. “That’s inconvenient at best – at worst, it outs us and exposes us to possible discrimination and violence.”

Violence is a very real concern for transgender and gender-nonconforming Americans. The U.S. Transgender Survey found that nearly 1 in 10 trans respondents reported being physically attacked due to their gender identity in the year prior to the survey, and nearly half reported being sexually assaulted at some point in their lifetime. The FBI’s latest hate crimes report found a 34 percent increase in anti-trans violence reports between 2017 and 2018.

Inadequate care
Discrimination and stigma when seeking menstrual and reproductive care – ranging from treatment for an irregular menstrual cycle, to pap smears and cervical cancer screenings – are further obstacles for transgender people who menstruate.

The U.S.Transgender Survey reported that 1 in 3 respondents had at least one negative experience with a heath care provider – ranging from verbal harassment, to refusal of treatment and even teaching the provider about transgender individuals in order to receive the right care.

Dr. Juno Obedin-Maliver, an assistant professor at the Stanford University School of Medicine and the co-director of The PRIDE Study, said the general lack of knowledge about how to support transgender, nonbinary and intersex individuals, along with stigma and discrimination, contribute to these negative health care experiences.

“Good treatment starts with respect and knowing who the patients are and dropping assumptions,” Obedin-Maliver said.

Dr. Meera Shah, chief medical officer at Planned Parenthood Hudson Peconic, said health care providers’ lack of knowledge about LGBTQ health issues “can cause patients to feel incredibly uncomfortable and may even cause them to not return to care at all.”

Historically, medical knowledge has been gender-based and does not reflect gender diversity, according to Obedin-Maliver. As a result, there can be a misconception around what menstruation is for anyone who is not a cisgender woman.

“We need to broaden the discussion around sexual and reproductive health, and move away from it being solely a gender conversation about women and think about people of all genders,” Obedin-Maliver explained.

Shah said that if medical professionals don’t adopt gender inclusivity into their medical practice, patients will likely be addressed with incorrect pronouns, asked irrelevant questions or experience delayed medical care.

In May,reports surfaced about a pregnant transgender male who sought help at an emergency room for severe abdominal pain. The patient told a nurse he was transgender and his at-home pregnancy test was positive, but staff reportedly didn’t consider it urgent. By the time they began treatment, he gave birth to a stillborn.

Shah and Obedin-Maliver said many of their patients have experienced inadequate medical encounters. But while there’s much room for improvement, more and more health care providers are becoming educated about the issues unique to transgender and gender-nonconforming patients. And there are resources for those looking to find affirming and knowledgeable health care providers, like the provider directories available from the Health Professionals Advancing LGBTQ Equality and the Campaign for Southern Equality.

As for Kenny Ethan Jones, he said he has no plans to stop advocating for more transgender-inclusive health care.

“I’ll be spending my 2020 championing for further inclusion of my community,” he said.