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

Happening Now! The virtual Worldwide Endometriosis March!

DAY 2 – PART 1:

DAY 2 – PART 2:

Happening Now! The virtual Worldwide Endometriosis March!

DAY 1 – PART 1:

DAY 1 – PART 2:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 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

A life of pain: One Las Cruces woman’s journey with endometriosis
Diana Alba Soular, Las Cruces Sun-News
March 1, 2018

Las Crucen Dolores “Doe” Gallegos, 47, suffers persistent, often-crippling pain, all thanks — or no thanks, rather — to a disorder called endometriosis.
Gallegos was first diagnosed when she was a student at New Mexico State University in 1990. She was making frequent trips to the student health center because of debilitating abdominal pain. She hit a lot of dead-ends before she found out the actual cause. Her pain was initially attributed, incorrectly, to menstrual cramping.

“I couldn’t walk,” Gallegos said, describing the impact of the pain. “At NMSU, a doctor told me: ‘Just take a handful of Advil.'”

But a physician in El Paso was finally able to determine the real cause as endometriosis, a disorder in which the tissue that normally lines the uterus grows outside the uterus in the body cavity.

“I didn’t even know what endometriosis was when I was diagnosed,” she said. “In 1990, I didn’t know anybody who had endometriosis besides myself.”

For Gallegos, that was the start of a long journey full of not only physical pain, but emotional disappointments caused by the disease. She’s endured 13 surgeries, failed treatments, financial struggles because of high medical expenses and, perhaps the most devastating to her, infertility.

Even today, there are still plenty of gaps in the scientific understanding of endometriosis. But nearly 30 years ago, even less was known about it. Gallegos could only find one book in the library about it. Slowly but surely, she began learning more about the disorder. And today she’s become an active advocate pushing for a cure. She said she’s known more about endometriosis than some of her past doctors — a few of whom had not only a lack of knowledge, but misinformation about it. At least one doctor dismissed her claims of constant pain as a psychological problem, she said.

Raising awareness in March

An estimated 176 million women worldwide have endometriosis — about one in 10 women during their reproductive years. March marks Endometriosis Awareness Month across the globe.

As the Mayo Clinic explains on its website, the exact cause of endometriosis isn’t known. 

Each month, the lining of the uterus — tissue called endometrium — normally thickens in preparation for possible pregnancy. If pregnancy doesn’t happen, the lining is shed, resulting in a woman’s monthly period.

One theory suggests a possible cause of endometriosis is menstrual fluid and endometrial cells moving the wrong way out of the uterus, flowing out the fallopian tubes and into the body cavity where there’s no exit. Endometrium can then start to grow outside the uterus on other organs or tissues.

The cycle that endometrial tissue goes through is under the control of hormones that originate in the ovaries, located next to the uterus, said Las Cruces physician Anthony Levatino, professor of obstetrics and gynecology at Burrell College of Osteopathic Medicine. The hormones disperse throughout the body, he said.

“They’re not just in the lining of the uterus,” he said. “So endometrial tissue anywhere else in the body where it doesn’t belong can respond in the same way as endometrial tissue right in the uterus.”

That means most of the time, the displaced endometrial tissue continues to cycle through the same build-up and breakdown process each month that the lining of the uterus does. However, the residual, unlike tissue inside the uterus, has nowhere to go. The body can absorb this, but sometimes it doesn’t.

Varying effects

With endometriosis, Levatino said endometrium tends to build up around the ovaries because they’re the source of estrogen. It’s akin to “running for the groceries,” he said. In especially bad instances, “cystic masses” grow on the ovaries. 

“When you open those things up, they look like melted chocolate,” he said. “And the reason is that it’s old, broken-down blood. This is one of the reasons that some of these people have a lot of pain.”

Levatino said the amount of endometriosis a woman has doesn’t necessarily correspond to the level of pain she experiences.

“It’s unusual in that sometimes the tiniest little bits of endometriosis can cause the most pain,” he said. “I’ve had patients that were absolutely dying of pain, and you get in with a scope so you can see these areas, and they have literally three pinpoints of it. I had another lady that had so much of it we were scooping it out in handfuls, and she had no pain at all.”

Gallegos described her pain as feeling like a “tumbleweed made out of barbed wire” is inside her and is moving around.

Symptoms of endometriosis

Some of the possible symptoms of endometriosis include painful menstruation, painful intercourse, painful bowel movements, excessive bleeding during menstruation and bleeding between periods, according to Mayo Clinic. Infertility is another possibility, because endometrial tissue and damage done to organs or tissues because of it, can interfere with normal reproductive processes.

Gallegos said that was a devastating part of her own struggle with the disease. 

“It’s a huge emotional thing,” Gallegos said. “I took it very hard not being able to have kids.”

She said she’s friends with another woman with endometriosis who was pregnant with twins but lost one of them, likely because of the disease.

Another characteristic of endometriosis is that it can travel to other organs in the body, Levatino said. It’s rare, but it happens.

“Endometriosis has been found in the brain, in the lungs,” he said. “You would think it was a cancer that way, but it’s not. It travels probably in the blood system or lymphatics — we’re not sure which — and it can show up in other areas. Normally you would associate that behavior with a cancer. But it is not a cancer.”

While most people with endometriosis are women, in rare instances it can affect men.

The only way to diagnose endometriosis with certainty is through laparoscopy, a minor surgery, according to Endometriosis.org.

Dealing with the pain

In the past 28 years, Gallegos said she’s undergone 13 surgeries — 10 of which were directly because of the endometriosis and three of which were to correct mistakes or complications from earlier surgeries. One of the surgeries was a hysterectomy, the removal of her uterus. She’s also taken a range of medications over the years. Once she participated in a trial for a drug. None of the surgeries or medications have been successful in the long term for alleviating her pain, and some of the drugs had negative side effects, she said.

The last surgery Gallegos underwent was five years ago. A specialist in Arizona removed endometrial tissue. For two weeks afterward, the pain disappeared. But it soon returned. Gallegos said she’s decided not to have additional surgeries. She’s prescribed a painkiller called Tramadol.

“Sometimes it works,” she said. “Sometimes it doesn’t.”

Mostly, Gallegos just attempts to carry on her normal daily routine in spite of the pain. 

Because endometriosis is affected by hormones that control the menstrual cycle, women who do experience pain from the disease may notice it lessen and worsen at different times of the month. 

Gallegos said her pain levels did vary in the earliest years, but that variation has lessened. Now, pain is not as great as it was at some points in the past, she said, but it’s more constant than not.

A lot of women who deal with painful endometriosis also experience depression or hopelessness because their quality of life often isn’t good, Gallegos said. Also, some medical professionals don’t take their complaints about pain seriously, which doesn’t help. Family members, too, can feel hopeless because they feel powerless to help a loved one suffering from the condition.

“Nothing is easy about endometriosis, for sure,” Gallegos said. “It wears you down.”

Boosting awareness

Gallegos doesn’t consider herself to be an especially strong person. But she’s determined not to let her often excruciating condition stop her from leading a busy life. As such, she works full time as a juvenile probation officer. And she’s channeled her energy into advocacy efforts, such as fundraising, to boost awareness about endometriosis in hopes of finding a cure.

Five years ago, Gallegos participated in the first-ever national march to raise awareness about endometriosis in Washington, D.C. Women from around the nation gathered for the event, which included a small convention and a performance by Sheryl Crow. 

Gallegos said it was uplifting to meet so many other women from different places who shared the common, unfortunate bond of endometriosis. She’s participated in each of the subsequent national marches, one of which took place in San Francisco. She’s met a lot of new friends who she keeps up with on Facebook. And that’s helped to counter the feelings of isolation she and many women with endometriosis experience.

Marching in Washington, D.C.

Ultimately, Gallegos said participants hope to catch the attention of policymakers who can push for strides to be made in research toward a cure for the disease.

“That’s why we march, and that’s why we want to be seen,” she said.

Gallegos and a small group of supporters from Las Cruces — they call themselves Team Doe for Endo — plan to attend the fifth annual Worldwide Endometriosis March this year in Washington, D.C., taking place on March 24. The group has hosted several fundraisers, including t-shirt sales and a recent 1980s night event at The Warehouse Bar in Las Cruces. She said they’re nearing this year’s goal of raising $3,000 to $4,000. 

Gallegos has attempted to start a support group in the past but hasn’t garnered enough interest from local residents. She wants to begin speaking to high school or university classes about her experience so other women will be aware of the disease and the possibility that they could be affected by it. She’s hopeful a research break-through could turn the tide in the quest for better treatments.

“I don’t want anybody to suffer as much as I’ve suffered,” she said.

Residents wanting to learn more about Team Doe for Endo’s efforts can email Gallegos at meandoegreen@hotmail.com.

Diana Alba Soular may be reached at 575-541-5443, dalba@lcsun-news.com or @AlbaSoular on Twitter.

Endometriosis risk factors
• Never giving birth
• Starting your period at an early age
• Going through menopause at an older age
• Short menstrual cycles — for instance, less than 27 days
• Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces
• Low body mass index
• Alcohol consumption
• One or more relatives (mother, aunt or sister) with endometriosis
• Any medical condition that prevents the normal passage of menstrual flow out of the body
• Uterine abnormalities
Source: Mayo Clinic

“It feels like someone is scooping my insides out with a spoon“
As told to Melissa Shedden bodyandsoul.com.au
March 10, 20172:45pm

Laura Furiosi, 35, has endometriosis, where the lining of your uterus grows in other parts of your body. Hers has even made it to her diaphragm.

 

When I was a teenager, I collapsed from pain in my abdomen. I thought I had appendicitis. It was endometriosis in my uterus and ovaries – but I’m one of the lucky ones because I got diagnosed straight away.

I struggled with it a fair bit over my young teens and twenties. It feels like a deep debilitating pain. It started off around my period but as the endo grows, the pain is there all the time. It can stop me walking and even make me pass out.

I’m now 35, and have been living for around two decades with endometriosis. It’s not just tummy pains, it turns up as referred pain in my shoulder, back and hips. There’s no cure, and for me my only option is surgery to have it excised. I’m fine for a little while after, but then it grows back. I’m up to 15 surgeries now. After, the doctors are amazed I’m walking around. The one I had when I was 21, they found it in places they didn’t know it could go.

It may have been a precursor. I had a massive surgery, recently where they found it on my diaphragm. I’d gone through three years of doctor’s appointments, pleading with them that something was wrong. They checked for irritable bowel, heart problems, asthma, heart burn, lung problems. I even got told, maybe my problem was psychological and I should see a psychiatrist. That stands out as my darkest moment – when someone in the medical profession didn’t believe my pain. It really got to me.

But I knew the feelings and persisted. I pushed through and three years on found a really amazing surgeon, who found the endometriosis sitting right underneath my liver. He was the third surgeon to look, and he only found it because he tipped me on my side and the liver flopped over and it was under there. I was so ecstatic he’d found it because it hadn’t come up in scans.

I’d only heard of diaphragmatic endometriosis, when I was searching for answers to my pain on an online support group I’m part of – a woman on there had it. I’m unsure of the exact numbers but I know it’s pretty rare.

Living with pain

It affects everything. I was doing kickboxing but I had to give it up because it was too painful for my diaphragm. I’m also in a choir, which I adore, but the long notes are nearly impossible.

Twice I’ve taken hormonal drugs, so I can give my body a break for six months and get overseas to do trade shows for my company. It’s sort of like early menopause and a last resort. I’ve heard it can help others long-term, but for me it only holds off the inevitable, it doesn’t fix it.

I’m lucky I run my own business, because if I didn’t work for myself, I wouldn’t have a job. I own a toddler and baby swimwear label called Rashoodz. We’re distributed in Walmart and made a huge deal in China in July. I want to show women you might have a disability or disease, but you can find a way to get around it and achieve.

Endometriosis is not taboo but people might roll their eyes because it’s an invisible disease. People see me going overseas and walking my kids to sport, and I can tell they think, ‘she doesn’t look sick’. What they don’t know is that I’ve taken painkillers and had to sleep at lunch, just to walks my kids home from school.

We need to talk about endo

Living with endometriosis is not something I talk about much with people who don’t understand. I need to start talking about it more so we get somewhere with it because one in 10 women have it. It’s not just about periods and infertility, it’s a chronic disease that can ruin your life and you can get it anywhere – your brain, lungs, diaphragm, you name it – and there’s no cure.

This is why I’m persisting with pushing for more research and awareness. I’m also a mother of three girls – 10, 8 and 6. I have missed school presentations and birthday parties, because I’ve been in hospital. They’re used to it and my husband has really stepped it up, but the possibility that one of my girls may have to experience endometriosis one day, fill me with dread.

If I could go back and talk to myself as a young woman, I’d say, ‘find yourself an endo specialist’. I would have managed to avoid a lot more surgeries. Most importantly, stand up for yourself, you know you, and develop a thick skin. Look after your mental health and prioritise self-care. I’m lucky to be able to share regular mental health days with my friends.

I’m asking Australians to support March Into Yellow – a movement to start a conversation about endometriosis. Anybody can wear yellow for the month of March and set up an everyday hero account to raise funds. Let’s find a cure.

Laura Furiosi is an Endo champion. Find out more about the disease at endometriosisaustralia.org

Follow Laura’s 30 days of yellow

Donate to Laura’s everyday hero account