Myth!

endometriosis.org writes:
“‘Women’s problems’ perplexed nineteenth century doctors, who saw them as indicative of women’s unstable and delicate psychological constitutions. Even though attitudes towards women improved during the twentieth century, some of the old beliefs still linger unconsciously, and affect the medical profession’s attitudes towards women’s complaints, including period pain.

“As a result, while seeking help for their pelvic pain (which may occur apart from menses), many women with endometriosis are told that their (often severe) period pain is ‘normal’, ‘part of being a woman’, or ‘in their head’. Others are told that they have ‘a low pain threshold’, or are ‘psychologically inadequate’.

“The net is that if pain interferes with daily life (going to school/work, partaking in day-to-day activities) it is not normal.

“If pain interferes with your day-to-day life, please seek help and ask to be investigated to determine the cause of your pain.”

EndoCenter.org writes:
“What’s the Big Deal? It’s Just “Killer Cramps,” Right?

“Wrong. This mistaken assumption diminishes and invalidates the suffering of every individual with the disease and can lead to feelings of isolation. Endometriosis isn’t just ‘bad periods.’

“So – What IS Normal?? Minor cramping during menses, often treated with over the counter remedies. Each month, tissue lining the uterus (endometrium) breaks down, sheds and exits the body resulting in normal menstruation. Inflammatory hormones – particularly those known as prostaglandins – are linked to the minor cramping and discomfort of a normal period. This is called “dysmenorrhea”.  Dysmenorrhea is not the same as endometriosis, nor is the disease simply comprised of ‘normal’ endometrium in abnormal places – as many sources and organizations mistakenly assert.

“Symptoms vary, but classic signs [of endometriosis] include severe dysmenorrhea, painful sex, chronic pelvic pain, Middleschmertz (painful ovulation), bowel or bladder associated pain or symptoms, infertility and often chronic fatigue, collapsed lung in thoracic endometriosis, and more. Endometriosis can cause pain in menstruators and non-menstruators alike.”

This and other myths can be found here.

MYTH!

EndoAlert (site no longer exists) wrote:
“Anyone claiming to be able to cure endometriosis with whatever product they are selling should be considered skeptically. It’s improper to say they “cure” the disease as there is no cure. What they are doing, if successful, is relieving the symptoms of endometriosis. It is common sense that a healthy diet and excercise can boost your immune system and make you feel better all around. However, there are many unscrupulous people who are willing to prey on people in pain by selling gimmicks or, worse yet, medication they do not fully understand. Before you try any new diet, excercise, or medication discuss it with your doctor”.

Endometriosis.net writes: “Currently, there is no scientific consensus on the effect of utilizing herbs and supplements for endometriosis and its related symptoms. However, herbs and supplements can impact different individuals in different ways, and some may experience relief from symptoms when using certain herbs or supplements in a healthy and safe manner.”

There are a couple of well-known endometriosis organisations out there strongly selling their viewpoint that people should be on certain types of diets and supplements, and that such diets and supplements can prevent endometriosis. My opinion of these doctors and organisations is not high as a result, since endometriosis cannot be prevented – we are born with it.

You can find this and other myths here.

MYTH!

The Endometriosis Research Center (ERC) says:
“Hysterectomy – not a cure and inappropriate for young women!”

Endometriosis.org says:
“Hysterectomy (surgical removal of the uterus) does not guarantee relief from endometriosis-related symptoms and can neither be classified as a “treatment“, nor as a “cure” for endometriosis. Furthermore, surgery is surgeon dependent, and if all the endometriosis is not removed as at the same time as the removal of your uterus and/or your ovaries — you may still have endometriosis (and associated symptoms) after this irreversible procedure.”

UofM Health says:
“Taking out the ovaries (oophorectomy) and the uterus (hysterectomy) usually relieves pain. But the pain relief doesn’t always last. Pain comes back in up to 15 out of 100 women who have this surgery. This means that in 85 out of 100 women who have surgery, the pain doesn’t come back. If you have your ovaries removed, you can choose to take estrogen therapy. It will protect your bones and prevent menopause symptoms after your ovaries are removed. But it may also make endometriosis come back.”

You can find this and other myths here.

Fact or Myth? Endometriosis is a rare disease.

Myth!

“Endometriosis is one of the most common gynecological diseases, affecting more than 5.5 million women in North America alone.” – The National Institute of Child Health and Human Development (NICHD).
“It is estimated that between 2 percent and 10 percent of American women – or 5.5 million women and girls – of childbearing age have endometriosis. This makes endometriosis more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility.” – Ohio State University Medical Center.
“…endometriosis is a complex hormonal and immune chronic disease causing multiple symptoms, including pain, which disrupt the lives of an estimated 89 million women and girls worldwide.” – The Endometriosis Association.
“Endometriosis is an often painful disease affecting an estimated 176 million individuals around the world.” – The Endometriosis Research Center (ERC).

This and other myths can be found here.

This year during Endometriosis Awareness Month, I would like to see people reprogram their use of gender-specifics. I would like us to remove the words ‘women’, ‘girl’, ‘ladies’, ‘female’, etc from our speech when we talk about Endometriosis.

Replace with generic ‘people’ in order to respect our endo siblings in the trans community.

In times past, our trans community may have felt too ashamed to talk about their struggles with endometriosis, or they may have felt it futile to start a conversation in such a heavily female-minded / single-binary-minded community… but in the past two years, I have started witnessing people come out in droves, ready to share their stories, and they EXPECT us to catch up to the times ASAP.

I myself am gender-fluid, but I had long upheld the gender binary in my own blog for the reasons I just noted above. I felt it would be futile, especially when I didn’t see anyone else taking up the conversation. I see now that I could have been part of a revolution in the endo community by removing gender-specifics from my speech on my blog long ago.

I apologise for not having done that until now.

This year, I have been going through my blog to correct as much as possible. While I can correct what I have written, most of my content on the blog is copy-pasta from the Internet of news articles and op-ed pieces…and those still make heavy use of gender-specifics.

So what I am asking all of you to do is help me put a stop to gender-specific language. Everyone can work together NOW to reprogram our language to be more inclusive of our trans endo siblings.

We did something similar years ago when our community came together to correct as many news outlets as possible to the fact that endometriosis is NOT endometrial tissue – it’s endometrial-like, and eventually many news outlets got it. We can do this again with gender-specifics.

Ask news outlets to remove the words ‘women’, ‘girl’, ‘ladies’, ‘female’, etc from their speech when they talk about Endometriosis. Tell them to replace those words with generic ‘people’ or ‘endo sibling’ in order to respect our endo siblings in the trans community. Thank you.

See also For transgender men, pain of menstruation is more than just physical and Treating Endometriosis as a Women’s Disease Hurts Patients of All Genders.

MYTH!!!!

Dr. Joseph W. Krotec and RN Sharon Perkins write in Endometriosis for Dummies:

“Even doctors used to believe that endometriosis was a psychological disease. The prevailing attitude was that, if you just stopped thinking about yourself all the time, all the pain would disappear. Some doctors actually believed that a woman’s positive attitude would make the pain go away. Unfortunately, some professionals still use this rationale today.

“Although a positive attitude is certainly good to have throughout your life, you probably know that attitude doesn’t decrease your endometriosis one bit. Endometriosis isn’t just in your head (although it can be; endometriosis has been found in the brain! See Chapter 6 for more info) — it’s in your pelvis, and it hurts.”

This and other myths can be found here.

Endometriosis is an autoimmune illness that one is born with. Doctors do not know what causes endometriosis – there may be several causes. So much misinformation and ignorance still exists about the origins of endo that many people spend years being dismissed, degraded, and mis-diagnosed by doctors before surgical diagnosis confirms endometriosis. People spend many more years being treated like guinea pigs because doctors cannot agree on effective medical and medicinal treatment of endometriosis.

The symptoms of endometriosis vary from person to person, but often include the following:

• Chronic pelvic pain, often extending to the lower back
• Heavy menstrual cycles
• Mittelschmerz (mid-cycle pain and/or bleeding)
• Pain during intercourse
• Moderate to severe fatigue
• Painful urination or bladder complications during menstruation
• Painful bowel movements during menstruation
• Rectal bleeding before and/or during menstruation
• Diarrhea, constipation or nausea during menstruation
• Frequent Urinary Tract Infections and/or yeast infections
• Infertility
• Low-grade fever
• Migraine headaches
• Nausea
• Dizziness
• Hypoglycemia (low blood sugar)-like symptoms
• Joint pain
• Feeling out of breath or easily winded

Stats are still sketchy as to how many people suffer with endometriosis.

• “Endometriosis is a painful, chronic disease that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more worldwide”. – Endometriosis Association
• “Current estimates suggest that 6% to 10% of women of reproductive age have endometriosis, or approximately 5 million women in the United States”. – National Institutes of Health
• “Endometriosis is a very common condition affecting up to 10 per cent of women between 16 and 50 years of age, often without producing any symptoms”. –NetDoctor
• “Endometriosis is estimated to occur in roughly 6–10% of women. It is most common in those in their thirties and forties.” WHAT?!? NO! THIS IS MISINFORMATION!!!
  – Wikipedia, citing the womenshealth.gov website from 2014.
• “Endometriosis is estimated to affect over one million women (estimates range from 3% to 18% of women) in the United States”. –Medicine Net

Treatment of endometriosis can include pain medication, surgery, hormonal treatment, and alternative medicine, but it must be noted that currently, the only definitive diagnosis of endometriosis is firstly made via laparoscopy. HOWEVER, most people with these symptoms already know they have endometriosis – you don’t need to wait for a definitive diagnosis to start asking your doctor for help TODAY!Any good reproductive endocrinologist worth their salt will be able to help you until you have ‘the official’ diagnostic surgery. The diagnosis is merely to see how bad things are inside so you can continue to get the ongoing care you need. 

This information is also linked from my main page in the navigation bar.

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.