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 womens’ 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 doctors’ 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 Childrens’ 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.”

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.

Click here for the EndoMarch.org website

Dr. Linda Giudice stated, “We believe half of endometriosis has a genetic component and half an environmental component.””We believe endometriosis is a complex, multifactorial disorder.””Minimize things with estrogenic compounds” (referenced Environmental Working Group for list of products to avoid which may be estrogenic, which may exacerbate endometriosis, which feeds and proliferates on estrogen).
The recorded video is now up:
https://m.youtube.com/watch?v=ottVIiuoJEA&feature=youtu.be

Most of the Endometriosis Awareness zoom meeting thus far is doctors talking about how they are helping out during the pandemic, and heavily cautioning those with Endometriosis, ESPECIALLY those with pleural endometriosis, to STAY HOME and continue to isolate, because they do not know fully yet how much MORE at risk endometriosis patients are than the rest of the population, but all agree so far that endo patients are in the sensitive population.

Below is the only article on the web that I could find right now which talks about those with endo who fear they are at higher risk for COVID-19, so I wanted to share.

Coronavirus (COVID-19) and Endometriosis

Tuesday, March 24, 2020

General advice

The situation with coronavirus (COVID-19) is escalating and changing on a daily basis.  It is a worrying time and a cause of anxiety and concern.  However, it is not the case that those with endometriosis are considered at increased risk. If you have endometriosis, similar to the general population, your best defence against the virus is minimising social contact and regular hand washing.

Thoracic endometriosis

Endometriosis within the chest cavity (in the lungs or on the diaphragm) is referred to as ‘thoracic endometriosis’ and is estimated to be found in up to 10% of those with endometriosis. As COVID-19 is a respiratory tract infection, those that have pre-existing respiratory (breathing) problems are more at risk, and so it may be that if you have thoracic endometriosis you could be more at risk.  If you have thoracic endometriosis, your best defence against the virus is minimising social contact, regular hand washing, and self-isolating if necessary. If you’re concerned about specific treatments or symptoms, speak to your GP, or if you are under the care of a hospital, get in touch with the team there.  

Implications for your endometriosis care

The COVID-19 pandemic will add significant extra workload on the NHS. If you are currently receiving treatment or waiting for an appointment for your endometriosis, you are likely to experience changes, with delays or cancellations to your appointments or surgery. Hospital and GPs will be looking to move to remote consultations, such as by telephone. The vast majority of endometriosis surgery will be classified by the NHS as non-urgent ‘elective’ surgery, and this means that those waiting for endometriosis surgery in the next few months will most likely have their surgery dates cancelled and re-issued in due course, and if you do not have a date for surgery, the waiting times for surgery are likely to increase.

We understand it may be very difficult if you have planned surgery or routine appointments cancelled during this unprecedented time for the NHS, but would like to reassure you that after the acute period of this pandemic is over, we will be working with the RCOG and others to ensure the endometriosis service is resumed and your care can continue/your appointments can be rescheduled. If you are finding your symptoms unmanageable during this time, contact NHS 111 or your GP.

For general information about COVID 19, please refer to the Government and NHS websites:

• UK Government guidance including on symptoms and staying at home with possible COVID-19 infection (link: https://www.gov.uk/government/publications/covid-19-stay-at-home-guidance/stay-at-home-guidance-for-households-with-possible-coronavirus-covid-19-infection )
• UK Government’s response to Coronavirus (COVID19) (link – https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response )
• Advice from the NHS (link – https://www.nhs.uk/conditions/coronavirus-covid-19/ )
• Public Health England is producing daily updates on COVID-19 infections in the UK.

For questions about coronavirus, see nhs.uk/conditions/coronavirus-covid-19 or use the online NHS 111 service to check your symptoms 111.nhs.uk/covid-19. If you can’t access the online service, feel you cannot cope with your symptoms or they get worse, call NHS 111.

Coronavirus and your mental wellbeing

The Charity MIND have produced information about things that may help your mental wellbeing in these challenging times. Please see MIND (https://www.mind.org.uk/information-support/coronavirus-and-your-wellbeing/) for helpful resources.

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 PSTBy 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 maker Always 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 journal Obstetrics 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 like New 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.

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.

Research Study – Information Found On The Internet About Endometriosis

Found via Antonia Boyton and the Endometriosis Association of Ireland

This Study is Open Worldwide

As part of Kathleen King’s (Chair Endometriosis Association of Ireland) MSc study you are invited to take part in research into information found on the internet about #endometriosis. This is an online questionnaire that will take 20 minutes to complete.

The link to the study is https://goo.gl/forms/MEZ2P6oM8Q5WVqCr2

Why It’s Harder For People Of Colour To Get Diagnosed With Endometriosis

By AIMÉE GRANT CUMBERBATCH

March 7, 2019

176 million people worldwide have endometriosis. Despite its prevalence, many people don’t know what it is. It’s not talked about, it’s under-researched, and it’s persistently underfunded. For Endometriosis Awareness Month, Bustle UK is hearing from people living with the condition and doctors who specialise in it, and is opening up the conversation to help you get the treatment you deserve.

If you google “people with endometriosis” you’ll see pictures of women bent over, hands clutched to their stomachs. Aside from their gender and their postures indicating pain, the thing most of the people pictured have in common is that they’re white. If you happen to be a person of colour, getting diagnosed with endometriosis — an illness that already takes on average seven to eight years to diagnose in the UK — can be fraught with added delays. Delays in the diagnosis of endometriosis can lead to complications and affect treatment further down the line.

The reasons people of colour can face added difficulty in getting a definitive diagnosis (which can currently only be done by a form of key-hole surgery called laparoscopy) range from the underestimation of their pain in the medical system to cultural taboos within their own communities.

As per the NHS website, endometriosis is a condition where “tissue similar to the lining of the womb” is found elsewhere in the body. One of the most common symptoms is pain. Studies have shown that it’s difficult enough to get the medical system to take the pain of cis women seriously in general, but this issue is only amplified for cis women of colour, and cis black women especially. One study by the University of California found that in U.S. emergency rooms, strong painkillers were prescribed to white patients far more frequently than they were to patients from minority ethnic groups.

Jhumka Gupta, assistant professor of Global and Community Health at George Mason University, explains that more research is needed into the “health inequities in delayed [endometriosis] diagnosis faced by [people] of colour.” She says, “decades of public health, medical, and sociology research has documented the existence of racial inequities in health and healthcare. Research [in the U.S.] has documented that black patients are systematically under-treated for pain conditions in comparison to white patients [and] this pattern has been shown in studies with women, men, and children.“

Studies show that getting a definitive endometriosis diagnosis is rarely straightforward. It often requires months, if not years, of advocating from the patient’s side before doctors take symptoms seriously. A 2016 study by the British government of 2,600 people with endometriosis found that 40 percent had visited the doctor 10 or more times before they were referred to a specialist.

As the cause of endometriosis pain is internal and often does not show up on initial scans, in many cases a referral to a specialist relies on a GP trusting a person’s account of their own pain. The overlap between the distrust of female pain and the distrust of pain among those from minority ethnic groups makes reaching a definitive diagnosis all the more complex. Gupta states, “The health care system may place a double jeopardy on women of colour who not only grapple with clinical gender bias, but also implicit racial bias.”

And there’s another factor at play. Recent research suggests that endometriosis is has been mistakenly characterised as “a white women’s disease”. Indeed, a recent Twitter poll conducted by gynaecologist Pietro Bortoletto saw 48 percent of its 128 respondents say that they thought people with endometriosis were usually white. This is despite the fact that there is some evidence to suggest race is a risk factor for the condition. In fact, Bortoletto’s entire thread on the subject provides a useful look back at how endometriosis has come to be characterised in this way.

The other glaring issue with endometriosis being perceived as a “white women’s disease” is its exclusion of trans and non-binary sufferers. “This is an additional burden faced by people with uteruses who aren’t cis women,” one non-binary sufferer told Clue. As another trans endometriosis sufferer recalled to EndoFound: “When you’re sitting in that waiting room, looking like a man, and then someone brings you your clipboard, and you’re filling it out, I mean people are staring at you, like, Who is this person? A lot of trans men in general, a lot of them will completely avoid going to the OB-GYN just because it’s a female thing, and it gives them a lot of anxiety and a lot of stress.”

It follows that the misconception around race could make doctors less likely to consider endometriosis when people of colour present with pelvic pain, heavy periods, or other symptoms. Lala Ireland, founder of social enterprise Feminine Vitae, also argues that the prevalence of uterine fibroids among people of African-Caribbean heritage (a condition whose symptoms are similar to those of endometriosis), could act as a red herring when it comes to diagnosing black and mixed race black people with endometriosis.

People of colour in the UK have reduced power and socio-economic status compared to their white counterparts, and this too arguably contributes to delays in diagnosis. If you don’t have the financial ability to turn to private treatment, and if you do not have the same power within society that being white affords, it is that bit harder to get your doctors to listen to your accounts, to receive specialist care, and therefore a definitive diagnosis.

Ireland argues this impact could be particularly acute for first generation immigrants. “There’s a distinction in terms of socioeconomic background. If you’re talking about a woman from a first generation Afro-Caribbean background, she may have found it much harder to be assertive in front of a doctor as opposed to someone who is several generations down the line.”

But delays in diagnosis can start long before a person enters a doctors’ surgery or health centre. Due to taboos around menstruation and stereotypes around pain, which can be more pronounced among certain minority ethnic groups, many people of colour suffer painful or heavy periods in silence.

This is something Marian Kwei, a stylist and fashion editor who was born in Gambia, has experienced. She told me, “Where I’m from, women do not talk too much about their pain. I was born in Gambia [and] there is a phrase which means ‘swallow it’. So if you’re having pain it means put up with it, just contain it without telling anyone.

“That’s the situation I dealt with in reference to my endometriosis. It was terrible for me, it was very ostracising. Here is this pain which I can’t talk about because I’m supposed to be swallowing it down. I wouldn’t wish being African and having endometriosis on my worst enemy,” she says.

Dr Anita Mitra, gynaecologist, author, and MoodyMonth.com contributor adds, “Endometriosis is a condition that can cause heavy and excruciatingly painful periods and pain during sex, as well as fertility issues. These are all topics that are known to be associated with stigma in society as a whole, but especially in black, Asian & minority ethnic communities.

“Understanding that these symptoms are a cause for concern is the first step to seeking help, and many [patients], unfortunately, think they are things they just need to ‘put up with’ because they’re not taught about this in schools for example. And because [patients] may feel unable to talk about it their friends and family, it can remain a mystery.”

Changes have recently been announced which will make lessons on endometriosis and other menstrual health conditions compulsory in English schools. This is a vital first step, but their effectiveness for people of colour depends on them putting forward representative picture of who is affected by endometriosis, as well as taking into account how race and ethnicity may impact a patient’s experience of the illness.

And it’s not just about empowering those who might have the condition, it’s also changing attitudes and misconceptions within society and the medical system that serves it. No matter how empowered the patient, they need a doctor who is willing to listen if their pain, heavy bleeding, fatigue, or all three are to be taken seriously.

Mitra has ideas about how this can be achieved, “[Patients] may feel unable to talk to their doctor about issues of a sexual nature, and may feel they will be accused of being promiscuous or leading an irresponsible sex life which [should never be] the case,” she says.

“Sharing a GP with other family members may also be a concern, but [patients] should be assured that their doctor is not allowed to talk to their family, or other members of the community due to strict confidentiality rules.”

She concludes, “Medical professionals do not feel shy to talk about these issues, but I think we should always seek to remind ourselves that not everyone feels the same way, and ensure we offer a sympathetic, non-judgmental ear to our patients, and answer their questions sensitively.”

This professor suffers from a mystery disease, so she developed an app to track its effects

Endometriosis gets very little U.S. federal funding for research, so Professor Noemie Elhadad developed the Phendo app to help women worldwide.
BY COURTNEY BIGGS
3/1/2019

An estimated 200 million women suffer from endometriosis worldwide. It’s a disease as common as diabetes, but it baffles the medical community. Doctors don’t know what causes it, or why it causes excruciating pain for some women and is asymptomatic in others.

Yet federal funding for researchers is scarce. In 2018, endometriosis received only $7 million of the National Institutes of Health’s $37.3 billion budget, less than a dollar per woman who suffers in the U.S. In 2019, that number is estimated to drop to $6 million. For context, anthrax research received $53 million in funding in 2018.

Noemie Elhadad, PhD, an associate professor of Biomedical Informatics at Columbia University, specializes in using computer science to draw insights from unconventional data sets such as doctors’ notes scribbled in patient files and patient comments in online forums. She cares about using “the power of the crowds” to leverage large data sets while including the patient’s voice. She’s also an endometriosis patient, and like many others, she has found that her symptoms don’t align with what is currently represented in endometriosis research or even recognized by some medical professionals.

“For the longest time, I had pain in my legs and I always thought, ‘Oh it’s because I’m lazy, I don’t exercise enough.’ I’m a pretty health-literate person, but I never put two and two together and understood that this was in fact very periodic pain, and it was related to my endometriosis,” says Elhadad. “There is a disconnect between what doctors recognize as endometriosis symptoms, and what patients are actually experiencing day-to-day. Bridging this gap is critical to further research on endometriosis.”

This experience, coupled with frustration at the slow progress toward a cure, was the catalyst for Elhadad to launch her own research project, Citizen Endo, in 2016 at Columbia University.

Elhadad knew that with the limited research funding available, she would have to be innovative about how she collected data. She also knew that many endometriosis patients were already tracking their symptoms in menstrual health apps such as Clue, leaving a critical data source untapped by researchers or doctors. So with a $50,000 grant from the Endometriosis Foundation of America (EFA), Elhadad developed the Phendo app, available on both iOS and Android devices.

Once patients consent to the research study via the app, they can document medical history, symptoms, medications, supplements, energy levels, diet, treatments, moods, and pain levels on a daily basis.

As of January 2019, the Phendo app has over 6,000 participants in over 65 countries, making it the largest collection of clinical data about endometriosis in existence.

This rich data set will allow the Citizen Endo team to begin phenotyping endometriosis. A phenotype is a set of observable characteristics. While researchers have already found that there is more than one phenotype of endometriosis by looking at histological samples from surgically excised endometriosis lesions (pathology), they don’t know how many different phenotypes there are in the disease.

“Identifying these phenotypic subgroups will help us answer questions like why some women respond well to some treatments, why some are infertile, and why some see no relief in their symptoms after menopause,” Elhadad said.

While there is an element of unreliability with self-reported data, Elhadad says that the unprecedented high volume of data will allow her team to “build the right statistical models so we can deal with these limitations.”

Another unique aspect of the study is transparency. Research findings are published as Medium blogs, and participants can export their data to medical providers through the app. According to Elhadad, this also serves as their primary participant engagement technique and encourages dedicated reporting.

The Citizen Endo project appealed to the EFA because it supports their focus on awareness and early diagnosis, says Piraye Yurttas Beim, EFA board member and founder and CEO of Celmatix.

“It will help physicians understand that it’s not just about period pain, and that this is a real chronic condition. It is setting back women and is taking them out of the workforce and not allowing them to live rich lives,” said Yurttas Beim.

Citizen Endo is also open to collaborating with other researchers. They are co-recruiting with the genomic ROSE  study at the Feinstein Institute in order to look at participants’ “qualitative day-to-day life with what’s going on in the genes expressed in their menstrual cycles,” said Elhadad.

After identifying a large number of participants reporting gastrointestinal symptoms, Citizen Endo will also partner with Ubiome in the future to send participants microbiome testing kits.

Elhadad hopes to apply the Citizen Endo model to other underfunded, underresearched areas of women’s health such as polycystic ovary syndrome. She is in the early stages of launching Even, a data-powered Women’s Health Research Initiative at Columbia University.

“There is clearly an issue across the world of women’s symptoms not being heard,” says Elhadad.

More such projects are sorely needed, says Yurttas Beim, who stressed the importance of investing in women’s health research.

“So what we’re learning now is that reproductive conditions like endometriosis are a canary in the coal mine for what a women will experience later in her life–in a sense, by not spending on the earliest manifestations of heart disease, rheumatoid arthritis, and risk factors for cancer, which is what diseases like endometriosis are. We are putting money into reactive medicine and not proactive or preventative medicine.”

What’s It Like Living With Endometriosis? 6 People With The Condition Share Their Story

By AIMÉE GRANT CUMBERBATCH

March 5, 2019

One in ten people who menstruate in the UK have endometriosis. Despite its prevalence, many people don’t know what it is. It’s not talked about, it’s under-researched, and it’s persistently underfunded. For Endometriosis Awareness Month, Bustle UK is hearing from people living with the condition, doctors who specialise in it, and opening up the conversation to help you get the treatment you deserve.

In this piece five people who live with endometriosis share how the condition affects their life day to day. Although coping with a chronic illness is never easy, their words are an inspiring and important lesson in finding solace in friendship and hope in unexpected places, and, most crucially, they highlight why it’s time endometriosis and its impact were taken more seriously.

Living with endometriosis can be summed up in two words — it’s interesting. You never know what day you are going to have because endo likes to creep in whenever she can and throw off your day just like that. I have good days when pain levels are bearable and I can appear like a normal functioning person in society, but unfortunately those days are few and far between. Most days you can find me confined to my house struggling to do even the simplest of things such as walking up the stairs. It takes all my energy to even attempt a shower.The majority of the time my body feels like it’s been carved open like a pumpkin on Halloween. The nausea, dizziness, bloating, and fatigue all add to the generally feeling of being hit by a bus most days. The pain takes my breath away and I have to bite the side of my cheek to stop me from screaming. There have been times where I have collapsed from the pain.I have been in a chemically induced menopause for over 19 months now in a bid to get control of my pain but this no longer gives me any relief. I have been unable to work for almost two years because of endometriosis and the toll it has taken on my body. Endometriosis is so much more than just a bad period.

Jemma

The devastating effects of adenomyosis and endometriosis can be both physically and mentally exhausting. On bad days the pain can be so severe that either I vomit or can’t move. On most days, I still suffer from varying degrees of pain in my lower abdomen, lower back and a hot/sharp sensation radiating up and down my legs. It is rare to have a truly painless day. Even on “good” days (where pain is manageable), I can become so swollen that I look like I’m pregnant. I try my best to laugh this off and disguise it under my ever-growing collection of oversized clothes. That said, I can still feel heartbroken in the knowledge that there’s nothing I can do about it — I have no control over the size of my own belly. I have no control over my own body. I can feel utterly powerless. I laugh regularly, I try to stay positive, and I am lucky enough to have hugely supportive friends and family. That does not mean I don’t find it tough and it does not mean I’m not suffering every single day. Just because you can’t see something doesn’t mean it isn’t there.

Rosy

Living with endometriosis is hard. Really hard. The disease affects over 176 million people worldwide, yet having it makes you feel so alone. The pain is worse than I can even describe. It makes you the best actor. Smiling through horrible pain, working through horrible pain, going to school through horrible pain, but still being able to tell people you’re “fine” because you know they won’t get it when you try to explain why your pain is different than regular period cramps. Every day is a balancing act of doing too much or not doing enough. If you rest, you’re “lazy”, but if you push yourself too hard, you risk being in bed for days. The misery that comes along with the pain is suffocating, and then comes the emotional toll the disease takes. Going from doctor to doctor, hoping that someone will take you seriously. Having your “script” rehearsed when you visit the emergency room so they don’t label you as “one of those patients”. Feeling so desperate for relief that you’ll literally do anything to make it stop. Defending yourself when doctors make you feel like the pain may just be in your head. Imagine what that does to a person?

Jenneh

Imagine having your own body trying to destroy you from the inside out. That’s the reality for so many with endometriosis. We can’t prevent it and we can’t stop it because there is no cure. It has affected my whole life. It slowly but surely drove me from my job because the pain was so severe that I couldn’t get out of bed. I felt so isolated because, how was I supposed to explain to people how I felt when I looked fine on the outside. I couldn’t physically keep up with my friends and it definitely created a wedge. It’s affected my relationship because I need support in everything. My boyfriend has had to be more than a boyfriend, he’s become my carer and helps me with everything. It’s exhausting and has had a huge impact on my mental health. I’m scared for the future and how my health is going to be. Hopefully one day there will be a cure.

Nicole

It’s very hard to put my finger on exactly how endometriosis changed my life, because I haven’t lived a life without it. From being a kid and starting my period, confused and scared as to why I bled through my pad, underwear, and school skirt, up until now — nearly 25, having had two surgeries with another looming to relieve some of the side affects of this confusing condition. Cramps, bloating, nausea, brain fog, UTIs, bleeding when I use the toilet, and this is my every day. It’s a real blood bath (literally) when my period arrives. Endometriosis has ruined relationships, put my social life at a halt, nearly gotten me fired, embarrassed me, caught me short and destroyed my mental health, but the biggest thing I’ve taken from having this curious condition is the community surrounding it. I have made some life-long friendships, I have people check in on me every now and then (and vice-versa) and have even received a care package from an amazing endo-sister and blogger. Every day I am grateful for the sisters I share this condition with. I don’t think I could get through without them.

Alice

Endometriosis isn’t life threatening, but it’s life debilitating which robs you from living a normal life. Living with endometriosis is exhausting, frustrating, painful, and goddamn unfair. I am 25 and have my 10th surgery at the end of his month. That’s all down to damage endometriosis has caused. I long for a day where I will wake up with no pain, but I am also strangely thankful as it has taught me to appreciate everything in life no matter how small.

Anna

Relation Between Hysterectomy, Oophorectomy and the Risk of Incident Differentiated Thyroid Cancer
The E3N Cohort
Agathe Guenego; Sylvie Mesrine; Laureen Dartois; Laurence Leenhardt; Françoise Clavel-Chapelon; Marina Kvaskoff; Marie-Christine Boutron-Ruault; Fabrice Bonnet
DISCLOSURES Clin Endocrinol. 2019;90(2):360-368.

You can download the PDF and references here.

Abstract and Introduction

Abstract

Background: Thyroid cancers are threefold more frequent in women than in men. A role of reproductive or hormonal factors has been suggested but with contradictory results. We investigated potential associations between history of hysterectomy, with or without oophorectomy, and history of benign gynaecological disease (uterine fibroids, endometriosis) and the incidence of differentiated thyroid cancer, in a large French prospective cohort.

Methods: A total of 89 340 women from the E3N cohort were followed up between 1990 and 2012. Gynaecological diseases treated by surgery were self-reported. Thyroid cancers were validated by histological reports. Time-dependent covariates included smoking status, BMI and history of benign thyroid disease. Cox proportional hazard models with age as timescale were used to estimate Hazard Ratios (HR) and 95% confidence intervals (CI).

Results: A total of 412 cases of thyroid cancer were diagnosed during follow-up. A history of hysterectomy was associated with an increased risk of differentiated thyroid cancer (adjusted HR=2.05; 95%CI: 1.65-2.55). The association was not altered after further adjustment for reproductive factors. Endometriosis, uterine polyps, ovarian cysts and oophorectomy without hysterectomy were not associated with the risk of thyroid cancer. A history of fibroids was also significantly related to the risk of thyroid cancer over the follow-up period (adjusted HR=1.91; 95%CI: 1.50–2.44) and the increased risk persisted after adjustment for history of hysterectomy.

Conclusions: Women who had either a history of fibroids or hysterectomy had an increased risk of differentiated thyroid cancer. These findings suggest shared biological mechanisms between fibroids and thyroid cancer, which deserve to be further dissected.

Introduction

Incidence of thyroid cancer has increased worldwide over the recent decades. Some established risk factors for thyroid cancer are known, such as ionizing radiation, benign thyroid disease, genetic predisposal and high body mass index (BMI). Based on epidemiological data, it has long been proposed that hormonal factors may determine or modulate the risk of thyroid cancer. Indeed, thyroid cancers are threefold more frequent in women than in men after puberty and incidence decreases after menopause. A role of female hormones in the aetiology of thyroid cancer has been suggested with a direct action of oestrogens, via its receptors (ER), on proliferative and neoplastic disorders. However, the relationship between thyroid cancer risk and reproductive or hormonal factors is still debated, with contradictory and often inconclusive findings on the association between thyroid cancer and age at puberty, menopause, parity, breast-feeding or menopausal hormone therapy.

Hysterectomy is one of the most common surgical procedures in gynaecology worldwide and is mainly performed in case of a benign disease such as fibroma and endometriosis, conditions which are associated with lifetime sex steroid hormone exposure.

Several studies have attempted to determine hormonal and reproductive factors involved in the development of thyroid cancer in women, with conflicting results. A potential association between hysterectomy and thyroid cancer risk has already been described, but in studies with methodological heterogeneities and potential bias. Moreover, links between thyroid cancer risk and hysterectomy, oophorectomy or benign gynaecological disease histories have not been investigated simultaneously, despite common aetiological factors and frequent morbid associations. Thus, we aimed to prospectively explore the link between differentiated thyroid cancer (micro- or macro-carcinomas) and a history of hysterectomy, with or without oophorectomy, in a large cohort, according to age and time since gynaecological surgery. In addition, we investigated the relation between a history of benign gynaecological disease (uterine fibroids, endometriosis, ovarian cyst and uterine polyp) and the risk of incident thyroid cancer.

Materials and Methods

The E3N Cohort

TheE3N cohort study (Etude Epidemiologique de Femmes de la Mutuelle Générale de l’Education Nationale) is a prospective cohort of 98 995 French women born between 1925 and 1950 and insured by a national health system primarily covering teachers.18Participants have received 11 follow-up questionnaires (mailed every 2–3 years) and responded to each at a rate of ~80%. The women were enrolled in 1990 after they returned a baseline self-administered questionnaire on their lifestyle and medical history. All women signed an informed consent, in compliance with the rules of the French National Commission for Data Protection and Individual Freedom from which approval was obtained.

Thyroid Disease Assessment

Each questionnaire inquired about cancer occurrence, and requested information and permission to contact participants’ physicians. Cases were confirmed by pathology reports. Here, we considered only histologically confirmed first incident primary differentiated thyroid cancer cases (ie, papillary (International Classification of Diseases for Oncology, ICD-O codes: 8050, 8052, 8130, 8260, 8263, 8340- 8344, 8350, 8450) and follicular (8290, 8330–8335, 8480, 8490)), excluding 21 cases of anaplastic or medullary thyroid cancer. Micro- and macro-carcinomas were defined as tumours sized <10 mm and ≥10 mm, respectively.

Each questionnaire also inquired about diagnoses of dysthyroidism (hyperthyroidism or hypothyroidism) and of benign morphological thyroid conditions.

Assessment of Hysterectomy and Benign Gynaecological Diseases

Hysterectomy and oophorectomy status (none, or uni- or bilateral), and age at surgery were recorded in each questionnaire. Benign gynaecological diseases considered in this analysis were endometriosis, ovarian cysts, fibroids and uterine polyps recorded in each questionnaire. Ovarian cysts reported by women diagnosed with endometriosis were not considered, to avoid potentially misdiagnosed ovarian endometrioid cyst cases. For all diseases, diagnostic procedures as laparoscopy, biopsy, hysterography, hysteroscopy or ultrasonography were recorded in the 1992, 1993 and 1994 questionnaires and surgical treatments were available in each questionnaire except the baseline questionnaire. For each gynaecological disease, we separately considered those confirmed by surgery or laparoscopy, confirmed by at least one treatment or diagnosis examination, and only self-reported gynaecological diseases.

Population for Analysis

Follow-up started at the date of return of the 1990 questionnaire. Participants contributed person-years of follow-up until the date of diagnosis of any cancer (except basal cell carcinoma and in situ colorectal cancer), the date of the last completed questionnaire, or December 2011 (date of mailing of the 10th questionnaire), whichever occurred first. Women studied were censored at the date of a first thyroid cancer and we did not consider a hysterectomy or other benign gynaecological diseases which occurred following a first thyroid cancer. Among the 98 995 women included in the study, we excluded those who reported a prevalent cancer at baseline other than a basal cell cancer or in situ colorectal cancer (n = 4844), and women with no follow-up data (n = 2073), with primary amenorrhoea or unknown age at menarche (n = 2209), with missing information on age at hysterectomy or oophorectomy (n = 418), or with unknown date of cancer diagnosis (n = 111), ending up with 89 340 women for analysis.

Statistical Analyses

Cox proportional hazard models with age as timescale were used to estimate Hazard ratios (HR) and 95% confidence intervals (CI) of first differentiated thyroid cancer associated with history of hysterectomy or benign gynaecological disease. Women diagnosed with non-differentiated thyroid cancer were censored at the date of diagnosis. Hysterectomy status or benign gynaecological disease variables were analyzed as time-dependent variables. When the variables were not available at a given questionnaire, the preceding value was considered until the next known value. The proportional hazard hypothesis was verified for all time-independent variables of interest using log-log survivor plots. Covariates included in the models used are listed in Table 2 and Table 3. Information on time-dependent variables was updated at each questionnaire. Missing values for all adjustment variables were replaced by the modal value, as they were missing for less than 5% of women.

We performed stratified analyses to explore associations according to tumour size (micro- (<10 mm) or macro- (≥10 mm) carcinoma) using competing-risk models. Cases with missing values on tumour size were excluded from these analyses, and analyses were performed in each strata by censoring the cases belonged to the other strata at date of diagnosis.

We used homogeneity tests to compare risk estimates across strata using the Wald chi-square statistic.

Smoking status and a history of dysthyroidism were evaluated as potential effect modifiers by adding an interaction term in the final model and testing statistical significance. All tests were two-sided, and statistical significance (P-value) was set at the 0.05 level. All analyses were performed using Statistical Analysis Systems (SAS) software, version 9.3 (SAS Institute, Inc, Cary, North Carolina).

Results

Among 89 340 women considered in the present analysis, 412 cases of first primary differentiated thyroid cancer (381 papillary and 31 follicular) were diagnosed during 1 603 264 person-years of observation (median follow-up duration of 9.9 years for cases and 21.4 years for non-cases). Of the 412 cases of thyroid cancer, the information on the micro- or macro-carcinoma status was missing for 9. A total of 166 (41%) were considered as micro-carcinoma (size <10 mm) and 237 were micro-carcinoma (size ≥10 mm).

As shown in Table 1, the frequency of goitre/thyroid nodules was similar between women with an history of hysterectomy and those who did not have hysterectomy. The prevalence of excessive weight or obesity was higher among the women with an history of hysterectomy as compared to those without hysterectomy.

Hysterectomy/Oophorectomy and Risk of Thyroid Cancer

Women with a history of hysterectomy had an increased risk of differentiated thyroid cancer (HR=2.05, 95%CI 1.65–2.55; model 2), as compared to women without hysterectomy (Figure 1, Table 2). When considering types of hysterectomy/oophorectomy, the highest risk was observed for women with hysterectomy and uni- or bilateral oophorectomy (HR=2.21, 95%CI 1.67–2.91). There was no association between oophorectomy alone and thyroid cancer risk. Risks were similar whatever the age at the hysterectomy or the time since hysterectomy. Associations were similar although slightly stronger after adjustment for reproductive factors (model 3) (Table 2). Results were similar for papillary and follicular cancers (HR=2.02, 95%CI 1.61–2.53 for papillary, HR=2.52, 95%CI 1.17–5.44 for follicular, P _homogeneity =0.59, model 2). Both micro- and macro-carcinomas ((HR=1.81, 95%CI 1.28–2.57 and HR=2.16, 95%CI 1.62–2.88 respectively, P _homogeneity =0.45, model 2) were associated with a history of hysterectomy.

Figure 1.

Risk of thyroid cancer according to the mode of diagnosis of fibroids and the absence of a history of hysterectomy. Hazard ratio and 95% CI are displayed from the multivariate model 2

The association between a history of hysterectomy and thyroid cancer risk was not modified by smoking status nor dysthyroidism history (P _interaction=0.09 and 0.23, respectively) and was observed in all corresponding strata.

Fibroids

Overall, a history of benign gynaecological disease confirmed by surgery or laparoscopy was associated with increased thyroid cancer risk (HR 1.67, 95%CI 1.32–2.11; model 2; Table 3). The increase was driven by the association with uterine fibroids history (HR 1.91; 95% CI 1.50–2.44, model 2; Table 3). This association was observed whatever the mode of diagnosis of fibroids and irrespective of a history of hysterectomy (Table 3). Women with a confirmed history of fibroids had an increased risk of both micro- (HR=1.54, 95%CI 1.03–2.30, model 2) and macro-carcinomas (HR=2.16, 95%CI 1.57–2.97, model 2). If we consider simultaneously history of hysterectomy and of fibroids in the same multivariate statistical model (model 2), each variable remains statistically associated with the risk of thyroid cancer [hysterectomy (yes/no): HR=1.70, 95% CI :1.27–2.28; history of fibroids (yes/no): HR=1.33, 95% CI :1.01–1.75].

Neither self-reported nor confirmed history of endometriosis, uterine polyps or ovarian cysts were associated with thyroid cancer risk (Table 3). Results were similar for papillary and follicular thyroid cancers (data not shown).

Finally, we performed sensitivity analyses by excluding women who had an early diagnosis of thyroid cancer (first 2 years of follow-up) and the results were unchanged: women with a history of hysterectomy had an increased risk of differentiated thyroid cancer (HR=2.01, 95%CI 1.60–2.52; model 2), as compared to women without hysterectomy. Similarly, those who had a history of uterine fibroma were at higher risk of thyroid cancer as well (HR 1.84; 95% CI 1.47–2.30, model 2).

Discussion

In this large prospective study with more than 400 incident thyroid cancer cases occurring in women aged 40–65 at baseline, we found a positive relationship between the risk of differentiated thyroid cancer and a history of hysterectomy, but not with a history of oophorectomy. Results were similar whatever the age at hysterectomy or time since hysterectomy. We observed also an association between a history of fibroids and the risk of thyroid cancer, which appears to be independent of a history of hysterectomy.

Hysterectomy/Oophorectomy Status and Risk of Thyroid Cancer

A recent meta-analysis reported an association between a history of hysterectomy and the risk of thyroid cancer with a summary relative risk (SRR) of 1.43. However, the results were contrasting as only five out of 24 studies found that hysterectomy was associated with an increased risk of thyroid cancer. Other studies focusing specifically on the link between differentiated thyroid cancer risk and a history of hysterectomy were also conflicting. Methodological flaws may partly explain these discrepancies, due to case-control design and retrospective self-reported surgery history. Besides, studies concluding that there was a positive relationship between a history of hysterectomy and thyroid cancer risk did not perform adjustment on history of benign thyroid disease or family history of thyroid cancer, and thus could not discard the possibility of confounding.

In contrast to previous studies, we did not observe any change in the association between hysterectomy and the risk of thyroid cancer in relation to the time elapsed since hysterectomy or according to the age at hysterectomy. This finding is an argument against a potential detection bias associated with gynaecological surgery. However, we cannot exclude such a detection bias. It could be speculated that thyroid cancer may be more likely to be found among women with hysterectomy or fibroids, because of medical attention received, as compared to those without the conditions. However, the slightly stronger relation observed between hysterectomy or fibroids and macro-cancers compared with micro-cancers is not in favour of a potential screening bias, which involved the detection of a majority of micro-carcinoma.

Surgically induced menopause, often defined in studies as hysterectomy and/or bilateral oophorectomy has previously been associated with an increased risk of thyroid cancer. When we considered simultaneously hysterectomy and oophorectomy status, we found that a history of oophorectomy was not related to the risk of thyroid cancer and did not substantially affect the association between hysterectomy and thyroid cancer. This is consistent with the WHI cohort for which Kabat et al did not find any association between thyroid cancer risk and bilateral oophorectomy. Some authors found either a higher, a lower or a similar risk of thyroid cancer in women with hysterectomy and bilateral oophorectomy compared to women with hysterectomy alone or hysterectomy with partial oophorectomy.

Benign Gynaecological Diseases History and Risk of Thyroid Cancer

Our study revealed a positive association between a history of fibroids and the risk of differentiated thyroid cancer, which is consistent with the relationship between hysterectomy and thyroid cancer as uterine fibroids are the most common cause of hysterectomy. The twofold increased risk of thyroid cancer linked to surgically treated fibroids was similar to results reported in two American studies.

Studies on the relationship between endometriosis history and thyroid cancer risk are more conflicting, with HR/SIR varying between 0.85 and 3.09. Only two studies found an increased risk of thyroid cancer in women with an endometriosis evolving from more than 5 years and in parous women. It may reflect discrepancies in the definition of endometriosis cases, differences in the populations and the design of the studies: some used retrospective cohort of infertile women, other used data extracted from inpatient and cancer registers or self-reported endometriosis history.

As previous studies, we found no relationship between an ovarian cyst history and thyroid cancer risk, which is in line with the lack of link between oophorectomy and thyroid cancer in our study.

Our results seem not to be related to detection bias. Uterine fibroids are the most common pelvic tumours, occurring in nearly 70% of all reproductive-aged women. Hyper- or hypothyroidism both enhance the likelihood of their diagnosis or treatment by causing abnormal uterine bleeding and have been linked with an increased risk of differentiated thyroid cancer.  However, the fact that we found a similar thyroid cancer risk whatever the time elapsed since surgery argues against this. Moreover, the slightly stronger relation observed between hysterectomy or fibroids and macro-cancers compared with micro-cancers is not in favour of a potential screening bias.

Potential Mechanisms Linking Uterine Fibroids and Differentiated Cancer Thyroid

Uterine fibroids have been associated with thyroid nodules and hypothyroidism in transversal studies, suggesting shared mechanisms between fibroids and thyroid diseases. Both fibroids and thyroid cancers are thought to be sex steroid dependent.

If the link between hormonal factors and the risk of fibroids is well established, the relationship between sex hormones and thyroid cancer is much less characterized. Both oestrogen receptors α (ER α) with a proliferative and anti-apoptotic function, and oestrogen receptors β (ERβ) with a pro-apoptotic function, are expressed in normal and thyroid tumour cells. Thyroid cell proliferation and neoplastic development might depend on the imbalance between ER α and ERβ. Moreover, progesterone receptors have already been described in thyroid follicular cells, and progesterone has been shown to upregulate genes involved in thyroid function and growth on normal human thyroid cells in vitro. Besides, thyroid cancer cells and fibroids are both able to biosynthesize estradiol in situ through the action of aromatase.

However, the link between hormonal factors and thyroid cancer remain inconclusive in several studies suggesting that not only direct oestrogen action but also other pathways may be shared between fibroids and thyroid cancer, such as growth factors pathways and TSH/thyroid hormones induced pathways. Growth factors and non-genomic estradiol pathways converge towards the aberrant activation of Ras/Raf/MEK/ERK and PI3K/Akt/mTOR signalling in both thyroid and fibroids cells. In addition, due to common nucleotide sequence in ER and thyroid hormone receptor, these receptors can interact and regulate several transcriptional responses to environmental stimuli. Moreover, thyrotropin-releasing hormone (TRH), thyroid-stimulating hormone (TSH) and thyroid hormone receptors were shown to be present in monkey uterus. Another study described a smooth muscle cells proliferation after stimulation by TSH.

Somatic genetic mutations play a part in the molecular pathogenesis of both fibroids (MED12 mutations) and differentiated thyroid cancer (eg, BRAFmutations).^[1] Thus, a chronic reduction in DNA repair capacity might explain partly a common susceptibility to differentiated thyroid cancer and fibroids. The increased risk of both thyroid cancer and fibroids in atomic bomb survivors illustrates this hypothesis. Increased insulin resistance or related hyperinsulinemia might be a common underlying factor shared by women with uterine fibroids which may predispose to the development of thyroid cancer as recently suggested.

Strengths and Limits

Strengths of our study include its prospective design, large sample size, histological confirmation of all thyroid cancer cases and availability of data for most differentiated risk factors including a history of benign thyroid conditions. Exposure data were collected before diagnosis of thyroid cancer, avoiding potential recall biases. To our knowledge, it is the first study that investigated an association between hysterectomy, uterine fibroids and micro- and macro-thyroid cancer risk.

This cohort is not representative of the French population and our results cannot be extrapolated to the entire French population. As in all observational studies, residual confounding may subsist. Misclassification of exposure status is a potential limitation because of the self-reported assessment of surgery, benign gynaecological and thyroid diseases. Moreover, when we restricted the analysis to the treated cases, the associations remain consistent. Women included in our study, although younger than in the WHI and PLCO studies, were mostly postmenopausal, and our results may not be generalizable to young premenopausal women.

Conclusion

Our findings showed that hysterectomy or a history of fibroids were associated with a twofold increased risk of differentiated thyroid cancer (micro- and macro-carcinomas) in mostly postmenopausal women. This relation might be explained by common signalling pathways regulated by oestrogen, progesterone or TSH/thyroid hormones. Further studies are needed to delineate the underlying molecular mechanisms or pathways.

You can download the PDF and references here.