Happening NOW

March 25, 2023

Virtual Worldwide Endo March

Part 1 Facebook Live: https://www.facebook.com/watch/live/?ref=watch_permalink&v=705811864620935

Part 1 YouTube Live:  https://www.youtube.com/watch?v=PBUPO1qp9UE

Part 2 Facebook Live: https://www.facebook.com/worldwideendomarch/videos/244328754715995

Part 2 YouTube Live: https://www.youtube.com/watch?v=kPYqbXp4gdc

Happening NOW
March 24-26, 2023
The Endometriosis Summit
In person and virtual:
https://web.cvent.com/event/3ebcdc4d-626d-4025-8146-569d6dcdcd1e/summary

Corinne Foxx details experience with endometriosis, producing film about the condition
As an executive producer of “Below the Belt” and ambassador to the Endometriosis Foundation of America, Corinne Foxx is hoping others will feel less alone.
March 16, 2023, 1:42 PM PDT / Source: TODAY
By Meghan Holohan

One day, a roommate found Corinne Foxx balled up on the bathroom floor in the grips of menstrual pain. Since she started her period, Foxx experienced intense pain, nausea, chronic fatigue and bladder discomfort during menstruation. She thought that’s simply what a period was like.

“I had a roommate tell me, ‘Corinne, this is not normal,’” Foxx, producer, actor and daughter of Jamie Foxx, tells TODAY.com. “That was the moment for me where it just changed the trajectory of my life. And then I went on this journey to start figuring out, ‘Well, if it’s not normal, then what is it?’”

Foxx, 29, later learned she had stage 4 endometriosis, which occurs when tissue similar to the lining of the uterus grows in other places in the body and forms lesions. The condition impacts 11% of women between the ages of 14 to 44, according to the U.S. Department of Health & Human Services Office on Women’s Health. On average, it takes seven to 10 years to be diagnosed with endometriosis.

Foxx also experienced a delay in diagnosis. Doctors dismissed her concerns, and she visited “five or six doctors” who told her she had everything hormone imbalances to possible bladder cancer, she recalls.
“It was really a terrifying process and a frustrating process,” she says. “There’s a lot of medical gaslighting that goes into this journey. I think women of color, especially, are often silenced or not believed when they come in with symptoms.” 

Still, she kept searching for help.

“You just have to keep showing up for yourself. I learned that no one’s going to fight for my health more than me,” she says. “That really empowered me in the long run despite being discouraged.”
Eventually, Foxx visited a doctor who knew what was causing her symptoms.

“Finally, a doctor had said, ‘I think this is endometriosis,” she says. “I didn’t even really know what that meant.”

The doctor told her she could schedule surgery without giving her any information about what the surgery was or what having endometriosis meant. At first, receiving that diagnosis didn’t feel validating because she felt unsure what it was and what surgery she needed.

“I look back at that period of my life, and as difficult as it was, it was super empowering because I had to trust myself. I had to listen to my gut, literally,” she says. “ I came out stronger.”
Foxx began reading medical journals, following online groups and listening to podcasts to learn more about endometriosis.

“I did my own research and learned about the disease and learned about the right surgery that I needed,” Foxx says. “Then I got a specialist, Dr. Iris Orbuch, who ended up doing my surgery and ended up elevating so much of the disease for me.”

In October 2018, she underwent excision surgery with Orbuch. Considered the gold standard treatment for endometriosis, per the Endometriosis Foundation of America, the minimally invasive surgery involves specially-trained surgeons who remove the endometriosis lesions.

The surgery reduced Foxx’s pain and symptoms.

“I’m feeling so much better. The surgery I got changed my life,” she says. “I’m in semi-pain free — endo has a mind of its own sometimes and somedays aren’t the best — but for the most part, I’ve done so much better and it’s such a privilege.”

Through her doctor, Foxx learned about director Shannon Cohn’s hope to make a documentary, Below the Belt. Foxx became an executive producer of the film, which was released in 2022.

“I (told Shannin), ‘I’ll do everything I can to help illuminate your new film and get it in front of as many people as possible,’” Foxx recalls.

The film focuses on four women with endometriosis and the struggles they encounter.

“We have women at different places in their lives,” Foxx says. “We have a young woman who is still in high school. We have a woman who wants to have a baby.”

Endometriosis commonly causes infertility. According to the American Society for Reproductive Medicine, anywhere from 30 to 50% of women with it experience infertility.

Cohn and other producers, including actor Rosario Dawson, recently screened the film for members of the U.S. Senate.

“What’s really special about this is that we are getting bipartisan support,” Foxx says. “The goal of the film is education and awareness and also advocacy to get more research dollars for endometriosis so that we can find more affordable treatments, more affordable and effective imaging so you don’t have to do a surgery to find out if you have endometriosis.”

MRIs and ultrasounds do not always detect endometriosis, so definitive diagnosis is provided with surgery, according to the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Some insurances do not cover excision surgery, making it unattainable for many.

“I am advocating for making these surgeries more accessible. My surgery, I had to pay out of pocket,” she says. “Not a lot of people can afford that. Where I see there’s a lot more room for change is just making the treatment available and accessible to all people.”

Foxx also feels passionate about educating others about endometriosis and will serve as an ambassador to the Endometriosis Foundation of America’s ENPOWR program, which will teach school-age children about the condition.

“If I had this information when I was learning about periods in my fifth grade health class, it would have made a world of difference for me,” she says.

Foxx tries talking to her sisters, who are 14 and 15, about it, but they often don’t pay attention to their “so not cool” older sister, she says.

After her diagnosis, Foxx learned she had an aunt and grandmother with endometriosis.

“It’s something that was uncomfortable to talk about. Of course, it’s an intimate area of your body,” she says. “I want to (shed) light on reaching out within your own family and seeing if there is family history.”
The Endometriosis Foundation of America is honoring Foxx’s work advocating for people with endometriosis as an ambassador with a Blossom Award during its Blossom Ball on March 20. She says listening to Lena Dunham and Halsey’s speeches when they received the Blossom Award helped her when she was trying to understand what an endometriosis diagnosis meant.

“I felt so seen and I felt like, ‘Wow these incredibly successful women also have endometriosis, and maybe this isn’t the death sentence I’m thinking it is,’” she says. “For me to be standing on that same stage and sharing my story, it’s very emotional, and I just hope to be able to inspire women the same way that I feel inspired.”

Foxx also serves as an ambassador for the National Alliance on Mental Illnesses, and she’s able to combine her two passions into one by hosting an Instagram live on March 28 about endometriosis and mental health.
“There’s a mental component to it that we should be having a conversation about,” she says. “We’ve been working on a form of a campaign to illuminate the relationship between chronic pain and mental health. … There is trauma, there is depression, there is anxiety. So much goes hand-in-hand with living with chronic pain.”

And Foxx hopes her experience helps people of color with endometriosis feel less alone.

“I am aware that me sharing my story is going to impact people who look like me and I hope that people see themselves in me and see a woman of color talking about her experience,” she says. “My hopes for being an ambassador with Endo Found is to make someone else’s journey a little bit easier.”

Bindi Irwin is shining a light on this painful, underdiagnosed condition
March 8, 20235:24 PM ET
Manuela López Restrepo

One in 10 women or people with uteruses experience endometriosis during their reproductive years. To combat the ongoing stigma around it, Bindi Irwin has documented her surgery and called for people to “keep searching for answers.”

Who is she? Depending on how old you are, you might remember Bindi Irwin as the daughter of America’s favorite late Aussie TV show host, Steve Irwin (AKA the crocodile hunter).

• But she has since become a conservationist in her own right, continuing her family’s philanthropic efforts focused on nature, and starring in TV shows.
• Irwin is also married, and the mother of a baby girl named Grace. That comes into play with her diagnosis.

What’s the big deal? On Tuesday, Irwin shared social media posts detailing her decade-long battle with endometriosis, writing: “For 10yrs I’ve struggled with insurmountable fatigue, pain & nausea. Trying to remain a positive person & hide the pain has been a very long road.”

• Like many other women who live with chronic pain, Irwin recounts having her experience discounted by doctors, and chalked off as something she would just have to “deal with as a woman.”
• Endometriosis occurs when “tissue that is similar to the lining of the uterus grows in other places in your body,” according to the National Library of Medicine. Common symptoms of the disease can include very painful menstrual cramps, chronic pain, infertility and stomach (digestive) problems, among other things. While there are various theories, the underlying cause of endometriosis isn’t yet known.
• Linda Griffith, a top biological engineer at MIT, spoke with NPR in 2021 about having the condition herself; the somewhat mysterious factors behind the condition; and why it can be so painful.

What are people saying?
Bindi Irwin on her struggle with the condition:

Things may look fine on the outside looking in through the window of someone’s life; however, that is not always the case. Please be gentle & pause before asking me (or any woman) when we’ll be having more children. After all that my body has gone through, I feel tremendously grateful that we have our gorgeous daughter. She feels like our family’s miracle.
I’m aware of millions of women struggling with a similar story. There’s stigma around this awful disease. I’m sharing my story for anyone who reads this & is quietly dealing with pain & no answers. Let this be your validation that your pain is real & you deserve help. Keep searching for answers.

Linda Griffith about why so many overlook endometriosis:

Some women just don’t understand that other women could have these terrible, terrible things happening, because they themselves don’t experience those symptoms. “Period privilege,” as I’m calling it, could be active or passive. Passive is just they don’t think about it and they kind of find it hard to believe. But active — and I encountered this a lot — is women saying, “It can’t be that bad.” And some of these women are gynecologists, like the one who treated my niece who had endometriosis, and the gynecologist told my sister my niece was making everything up. 

So, what now?
Griffith’s research has focused on tissue regeneration, and she says understanding endometriosis could be key in furthering our understanding of it.

• Irwin has continued sharing and promoting endometriosis awareness as she recovers, receiving support from thousands across the globe. March is also endometriosis awareness month.
• Griffith, Irwin and countless others say stigma surrounding period pain and chronic conditions has got to go in order to make progress.
• Griffith: “There’s many period problems: Heavy menstrual bleeding, fibroids, all of these kinds of things. You just don’t talk about your period. So that has to change.”
• A U.K. trial for the first non-hormonal drug being aimed to treat endometriosis pain is showing promising results, The Guardian reports. It would be the first new class of drug for the condition in 40 years.

Trans, gender-diverse people with endometriosis fight ‘double battle’ against pain and lack of recognition
Menstrual-related condition affects 1 in 10 people with a uterus — but is usually seen as affecting women only
Julie Landry * CBC News
Posted: Mar 31, 2021

The day Sally Zori went to the hospital in Vancouver for their hysterectomy, the journey from the registration desk to the operating table was punctuated by astonished questions about their name, their ID, their gender and their appearance.

Zori, a transgender person who was assigned female at birth, was suffering from the excruciating pain of endometriosis and opted to have a hysterectomy to relieve the symptoms. But their interaction with hospital staff before the operation elicited a different kind of pain.

“[The nurse] hands me a pink hospital gown and leads me to the women’s locker-room to change. I look at her and say, ‘Don’t you think it would be a better idea to take me to the men’s locker-room?'” recalls Zori, 35.

Zori has not had lower surgery, but they have a beard and no breasts. “I am very clearly 100 per cent a man,” they say.

“For me, the biggest challenge was the constant having to prove who I was, a legitimate human. And I notice this across the board in the medical field.”

1 in 10

For those people with a uterus who don’t identify as a woman, such dehumanizing experiences make it even more difficult to live with endometriosis, a menstrual-related condition causing agonizing pain that has been little researched and is often misdiagnosed.

Zori, who lives in Vancouver, had experienced painful periods their whole life, but didn’t know they had endometriosis until they ended up in the emergency room due to the pain. They were quickly referred to a specialist who confirmed the diagnosis.

Endometriosis affects one in 10 people with a uterus. It occurs when tissue similar to the lining of the uterus implants in the pelvic cavity to form lesions, cysts and other growths, according to Endometriosis Network Canada. This can cause pain, internal scarring, infertility and other medical complications.

Relatively little research has been done on the causes, treatment and a potential cure for the condition, which has left many women who suffer from it short of physical, mental and emotional support.

But the struggle for recognition is even greater for transgender and gender-diverse people with the condition, who feel forgotten because endometriosis is often seen as a problem only for women.

Many are now demanding greater inclusivity in the fight to get endometriosis better recognized by health-care workers and researchers.

Surprise diagnosis

Some people think their gender was likely the reason they lived with endometriosis longer than they should have.

Like Zori, Eli — CBC has agreed not to use their last name because they don’t want to be identified in their workplace — only found out they had the condition when they ended up in a Vancouver hospital. In Eli’s case, it was after emergency surgery.

“It was a total surprise,” says Eli, 33, who identifies as non-binary.

Eli, who lives in Vancouver, says endometriosis was never considered in their case, even though they had endured common symptoms of the condition for years, including chronic pain in the neck and lower back and intense pelvic pain during their period.

“I do often wonder if I was more stereotypical cis female presenting, if that would have been linked, because it just wasn’t in my case,” says Eli, who continues to suffer chronic pain, affecting the amount of work they can do every day.

‘Super-gendered disease’

For Terri, another endometriosis sufferer, the pain of menstruation seemed to evoke the pain felt living in the body they were assigned at birth — a form of distress known as gender dysphoria.

“I would even say that maybe it was because of the endometriosis that I realized I was non-binary because it gave me so much trouble. Maybe if I had had a normal period it would have had a completely different outcome,” says Terri, whose last name CBC has agreed to withhold because their family doesn’t yet know Terri is non-binary.

Terri ended up in the emergency room several times due to the pain of endometriosis and eventually had to stop working. The suffering and stress caused by the condition led to suicidal thoughts, they say.

Terri, who lives in Toronto, has been given a respite from the physical pain thanks to a combination of medication and an intrauterine device. But the mental and emotional toll of constantly having to explain their gender and condition remains.

“Sometimes it’s exhausting having to explain to everyone and having to educate everyone … Not only on gender, but also on endometriosis, especially since it’s a super-gendered disease. It’s like a double battle,” Terri says.

They would like to be able to navigate a more inclusive health-care system and support groups, including information and awareness sessions with medical staff.

“The language needs to change a bit to include other people,” Terri says.

Available support

That’s one of the tasks being undertaken by Trans Care B.C., the first provincial body responsible for supporting a network of gender-affirming care.

Nurse educator Lauren Goldman is one of the organization’s staff developing training materials, also available online, for medical providers to feel more confident treating transgender and gender-diverse patients.

She says Trans Care B.C. can help patients connect with a health provider who is comfortable and has experience working with such patients.

But Goldman agrees there is much to improve.

“We know that gender-diverse people experience health inequities that are related to sexual and reproductive health care,” she says.

“Many patients share that they have experiences of significant body dysphoria and a lot of physical and emotional discomfort during physical exams, inadequate screening and also low service expectations.”

‘Endo warriors’

Endometriosis advocacy groups have already taken steps to address the added challenges faced by gender-diverse people living with the condition.

The website for Endometriosis Network Canada, for example, makes it clear that it’s not exclusively a “women’s condition.”

The organization’s blog co-ordinator, Maia Leggott, wrote a widely shared article for the website titled, It’s Time for the Endometriosis Community to Drop Gendered Language, which proposes, among other things, using the term “endo warriors” as a term of solidarity instead of “endo sisters.”

Leggott, a cisgender woman, admits she had to learn to use more inclusive language. She follows support groups and sometimes sees tough interactions between cisgender women and trans and non-binary people.

“It’s not always easy and it takes a lot of emotional labour for trans and non-binary folks to constantly be defending their identity,” Leggott says.

Human first

Zori’s hysterectomy was ultimately successful in stopping the symptoms of endometriosis.

But they still dream of a world where everyone is seen as human first. They would like medical forms to contain more than “male” and “female” checkboxes, but many boxes or one where each situation can be explained.

And they want an open endometriosis community in which no one feels sidelined because of their identity. After all, Sally says, women themselves have been marginalized for centuries.

“Now it’s time for us to include all the rest of the marginalized people,” Sally says.

Transgender People with Endometriosis Often Suffer in Silence
By Laken Brooks
October 14, 2021

Before reading this article, you may consider referring to these vocabulary terms:

• Cisgender: The state of identifying your gender with the sex you were assigned at birth
• Transgender: The state of not identifying your gender with the sex you were assigned at birth. For example, a person who is born with a uterus may not identify as being a woman.
• Nonbinary: The state of not identifying your gender as being exclusively male or female, or identifying your gender outside of the gender binary altogether

Because health researchers tend to label menstrual illnesses as “women’s diseases,” some trans people may not recognize their symptoms as warning signs for endometriosis.

Being diagnosed with endometriosis can make you feel like you’re invisible. Historically, doctors have underestimated menstrual pain. But transgender and nonbinary patients often face an additional layer of frustration as they fight for equitable healthcare.

We need better reproductive education
One major obstacle for all menstruating people is the dearth of reproductive education. In middle school, I and my female-identifying friends were shuffled off to a basement classroom where a kind nurse showed us pads, told us how to tie a jacket around our waists to hide leaks, and warned us against having sex. Many sex ed courses, like the one I experienced, do not describe important anatomical details of a period: how the texture and color of your blood can change, how to differentiate between normal cramps or something more serious, and how much bleeding is normal.

Challenges for transgender students
Many children are left to discover these important reproductive realities on their own. I had never heard the word “endometriosis” until I was in my twenties. But transgender students carry an especially heavy burden. Because sex ed courses often divide up male and female students, transgender adolescents fall through the gaps. If a transgender student attends the sex ed course that corresponds with their genitalia, that student may risk outing themselves. They may feel unwelcome in a “girl’s class” when they do not identify as a girl. Therefore, some trans students miss out on important lessons about their periods.

Recognizing endometriosis warning signs
Because health researchers tend to label menstrual illnesses as “women’s diseases”, some trans people may not recognize their symptoms as warning signs for endometriosis. It’s difficult to know just how many trans patients suffer in silence with endometriosis. In fact, only a handful of scientific studies have analyzed the topic. But in a 2020 article in Journal of Pediatric and Adolescent Gynecology, researchers found that the majority of trans people with endometriosis are diagnosed after they’ve transitioned their gender.¹ Even after a transgender male patient begins testosterone therapy, he can still have painful symptoms and complications in his uterus.

Delayed diagnosis
Although transgender people can also experience endometriosis, they are less likely than cisgender women to seek diagnosis. Why? Many patients rely on their OB/GYN to perform tests and assess their risk for endometriosis. But most transgender people do not feel safe when visiting a gynecologist. Some reasons why these patients may feel uncomfortable include the following: gendered intake forms, medical discrimination, judgmental doctors, and harassment.

Researchers in Ontario interviewed transgender men in their community to ask about their experiences with gynecological care.² Of this group, 92% of patients were anxious about visiting a gynecologist. More seriously, 54% had actively avoided getting screenings, pap smears, or other important treatments. Without visiting a gynecologist, transgender people face an uphill battle in getting diagnosed for endometriosis.

How medical professionals can meet the needs of trans patients
Fortunately, medical professionals and health advocates can be better allies. Here are some suggestions for how you can be more inclusive to transgender endometriosis patients:

• Use phrases like “people with endometriosis” or “menstruating people”
• Encourage your local healthcare providers to relabel their “women’s services” as “menstrual services”
• Encourage your OB/GYN to include more gender and sex options on their intake paperwork
• Support your local LGBTQ+ health organizations
• Support and follow groups like ThemsHealth, which is a social media platform that highlights trans-friendly health professionals who talk about wellness issues.

Endometriosis isn’t just a woman’s issue — it’s a human issue. And together, we can push to make menstrual care and education more accessible to every person of every gender.

Hey all, just wanted to let you know that I have discovered an issue with font rendering on this website. I’m correcting blog entries as I discover them. I’m going to have to go back to pasting articles into a different word processor and cleaning them up there before pasting into Word Press here.

As always, I use this blog as a sort of archive for everything endometriosis, and sometimes I do not have a lot of time to spend on this site, so I do a hasty copy-paste. I apologise. I do always make sure you have the source link to the actual news article, magazine article, biography or research report, though.

Much love to my endo siblings, stay strong!

France formally recognises endometriosis as ‘long-term condition’
The bill was passed unanimously through parliament. It means that all costs of care and treatment for the painful condition will now be covered by the state
14 January 2022
By Hannah Thompson

Endometriosis, a painful and debilitating condition that affects 1 in 10 women in France, has been formally recognised as a ‘long-term condition’ by the French parliament.

A “long-term condition” (affection longue durée (ALD)) in France means that care and treatment for the illness is completely covered by l’Assurance maladie.

The bill was put forward by political party (far-left) La France Insoumise, and l’Assemblée Nationale voted it through unanimously yesterday (January 13), with 111 votes for, and zero against.

MP for Seine-Saint-Denis Clémentine Autain, who presented the bill and wanted to have the definition “set in stone”, said the vote was “a giant step forward for millions of women”.

She said: “We can create a raft of rights for women who suffer. [This will especially help] poorly-paid women, those in precarious conditions, and the poorest [for whom the illness] is even more difficult to live with.”

Endometriosis is a disorder where tissue that usually lines the inside of the uterus grows outside the uterus, usually in the ovaries, fallopian tubes and pelvis. It can cause pain, bleeding, irritation, scar tissue, and even fibrous adhesions that can cause organs to stick together.

It can cause painful periods, pain during sex, painful bowel movements, excessive bleeding, fatigue, digestive issues, nausea, and infertility.

It can be difficult to diagnose and it still takes an average of seven years before women are diagnosed correctly.

The ALD decision comes two days after President Emmanuel Macron announced the launching of a national strategy to combat the illness.

He stated: “It’s not only a ‘women’s problem’. It’s society’s problem.”

The national plan will aim to boost understanding and awareness of the issue, as well as improve diagnosis rates and treatment plans.

The Worldwide Endometriosis March is LIVE now at:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5. Early teens can have endometriosis before their first period

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

6. Excision surgery is the gold standard to treat endometriosis

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

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

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

7. Chronic pain must be treated in parallel

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

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

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

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

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

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

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

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

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

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

9. Endometriosis care is negatively affected by unconscious bias

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

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

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

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

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

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

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

Empathy makes the invisible visible.

Follow Kristina Kasparian on Instagram for more endometriosis resources!

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