3rd Endo Black Advocate and Allies Conference and raise awareness during Endometriosis Awareness Month at Harborside Hotel in Oxon Hill, MD.

Tickets still appear to be available at https://events.eventnoire.com/e/endo-black-conference.

 

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.”

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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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.

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

By AIMÉE GRANT CUMBERBATCH

March 7, 2019

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Endometriosis slowly emerges as a debilitating Disease for Women
Written by Cleophas Mutinda, November, 2011

Imagine a pain in your abdomen so excruciating that you are unable to get out of bed for several days every month. That is horrible enough, but when it continues 12 times a year for more than 27 years, majority of people would agree it is cruel.

Most women with endometriosis will recognise this shocking scenario as not imaginary, but very real. They know the misery of pelvic pain and have poignant stories of how endometriosis has devastated their lives with terrible suffering. Many women feel angry or despondent about being robbed off a normal life during teenage, adulthood and even sometime a ruined motherhood.

Endometriosis is a gynaecological condition, which occurs when, cells like the ones (endometrial cells) lining inside of the uterus (womb) grow outside, usually on the surfaces of organs in pelvic and abdominal areas. It can be found within the peritoneal cavity, on the ovaries and the bowels or bladder. In extremely rare cases, endometriosis can be found in lungs or other parts of the body. Endometriosis can affect any menstruating woman, from time of her first period to menopause, regardless of race, ethnicity or socio-economic status. Endometriosis rarely persists after menopause. The disorder, for which there is no absolute cure, affects over 70 million women and girls worldwide. Often stigmatized as simply “painful periods,” Endometriosis is a puzzling and widely misunderstood illness.

It is not known exactly what causes endometriosis. But over the years several theories have been advanced to explain the probable cause of the disease although none can fully explain the various clinical manifestations of the disease. A theory proposed by John Sampson in the 1920s, suggests that endometriosis may result from something called ‘retrograde menstrual flow’, in which some of the tissue that a woman sheds during her period flows back through the tubes and grows in the pelvic cavity. While studies show that retrograde menstrual flow is a universal phenomenon among women of reproductive age, the theory fall short of explaining why the tissues survive in some women, but fail in others. Another theory proposed by Iwanoff in 1898, claims that, the transformation of what we call coelomic epithelium into endometrial-like tissue may be a cause of endometriosis. This theory has been supported by experimental data. The induction theory, proposes that an endogenous factor can induce peritoneal cells to develop into endometrial tissue. This theory has been supported by experiments in rabbits.

Lymphatic or vascular hypothesis suggests that endometrial fragments may be transported through blood vessels or the lymphatic system to other parts of the body. This theory speculates how endometriosis ends up in distant sites, such as the lung, brain, or the skin. A genetic linkage has been adduced which claims that, this disease could be inherited, or result from genetic errors, making some women more prone to develop the condition than others.

Studies show that the risk of endometriosis is seven times greater if the disease has affected a first-degree relative. This theory has been supported by experiments in mouse model but has not been verified either in women. Immunological etiology (cause) has also been conjured since studies report that many women with endometriosis exhibit immunological abnormalities. It is speculated that the immune system may fail to clear the menstrual debris in the pelvic cavity, allowing the endometrial cells to implant and develop into endometriosis.

Also most scientists agree that endometriosis is exacerbated by oestrogen; a hormone involved in the thickening of the endometrium and appears to promote the growth of disease implants. Some studies have pointed out environmental factors like toxins may contribute to the development of endometriosis, though this theory has not been confirmed and remains controversial.

The most common symptoms of endometriosis are abdominal pain and infertility. Some studies have reported that endometriosis may occur in 30%-40% of women with infertility and the incidence of endometriosis in women with pelvic pain may be higher than 50%.

Endometriosis associated pain may include but not limited to extremely painful (disabling) menstrual cramps, chronic pelvic pain (which includes lower back pain and pelvic pain), pain during or after sex, painful bowel movements or painful urination during menstrual periods, heavy menstrual periods and bleeding between periods. The amount of pain a women feels is sometimes not linked to degree of endometriosis. Some women have no pain even though their disease is extensive, while others have severe chronic pelvic pain even though they have only few affected areas.

The relation between endometriosis and pain is still shrouded in the mist of intricate puzzle and ignorance. Many women with endometriosis feel pain during their periods. Normally, a woman’s menstrual cycle involves her endometrial tissue to build up, breaks down into blood and tissue debris, and is shed as her menstrual flow or period. This cycle of growth and shedding happens every month under normal condition. Endometriosis grows outside the uterus and also goes through a similar cycle, build-up, breakdown and bleed every month. The problem is the tissue is in the wrong place and can’t leave the body the way a woman’s period normally does. Studies show that as part of this process, endometriosis may spur the production of substances that may irritate the nearby tissue, as well as provoke the release of chemicals that cause or mediate pain. Over time, endometriosis areas can grow and become nodules or bumps on the surface of pelvic organs, or become cysts (fluid-filled sacs) in the ovaries and may cause the organs in the pelvic area to adhere together.

Endometriosis is more than just simple “killer” cramps. Women and girls around the world continue to suffer in silence with a disease that can be potentially devastating to every aspect of their lives. It can be so painful as to render a woman or teenager unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. Endometriosis has a negative impact on the individual quality of life, affecting both physical and emotional well-being. A study by the American Endometriosis Association, demonstrated that 81% of the endometriosis patients in USA were unable to work, including household chores, because of pelvic pain. Approximately 27% were incapacitated for 3 or more days and 87% complained of fatigue or low energy. These figures are indicators of enormous suffering, in addition to the healthcare costs incurred. The need to develop intervention strategies is eminent, a published poll reveals women have to wait an average of 11.7 years in US and 8 years in UK to get a correct diagnosis after the initial onset of symptoms and a patient will seek the counsel of five or more physicians before her pain is adequately addressed and diagnosed. Once diagnosed, it is not unusual for a patient to undergo repeat surgeries and embark on many different medical therapies in an attempt to treat her symptoms. Endometriosis is a bit puzzling. We do not know why it causes such extreme symptoms in some women, while less in others. The treatment options can sometimes be unsuccessful. Sadly, endometriosis is associated with menstruation, sex, infertility, and pain (taboos in many societies), thus it is a disease that is not well known, understood, or accepted in the general public. This is frustrating for those who suffer from endometriosis, and for those who care for someone with the disease.

There is no non-invasive test to diagnose endometriosis. In fact, the only gold standard diagnosis of endometriosis is a surgical procedure known as laparoscopy and confirm histologically by taking a biopsy of the suspicious tissue.

However, this is an expensive, minimally invasive procedure. Furthermore, a specialised surgeon is needed for adequate assessment of the pelvis, for recognition of the various types and appearances of the disease. If the patients decline surgery, this makes diagnosis a challenge, and therefore an experienced gynaecologist should be able to recognise symptoms suggestive of endometriosis. The fact that there is no non-invasive diagnostic test for endometriosis is frustrating for clinicians as well as for women with the disease and underscores the need for search of better diagnostic tools.

Since the cause of endometriosis remains unknown, a treatment that fully cures the disease is yet to be developed. Choosing a holistic, treatment option comes down to the individual woman’s needs, depending on symptoms, age, and reproductive desires.

Pain is the most common symptom in many women with endometriosis, mainly managed by painkillers, which may vary from simple analgesics to non-steroidal anti-inflammatory drugs. Most researchers agree that endometriosis is exacerbated by oestrogen. Subsequently, hormonal treatments for endometriosis attempt to reverse oestrogen production in a woman’s body and thereby alleviate symptoms. However, hormonal therapies have varying degrees of side effects, and unfortunately, whatever pain relief is achieved tends to be only temporary for many women. Most gynaecologists agree that laparoscopic surgery is the only way to diagnose and treat endometriosis. Laparoscopy involves a small cut or incision in the abdomen, inflating the abdomen with harmless gas, and then inserts a viewing instrument with help of light (Laparoscope) into the abdomen. The success of surgery depends largely on the skills of the surgeon and the thoroughness of the surgery. The aim is to remove all endometriosis lesions, cysts, and adhesions. Today, most endometriosis surgery is being done through the laparoscopy, although a full abdominal incision called a laparotomy may still be required in rare cases for extensive disease or bowel resections.

Although the prevalence of endometriosis is well documented in women living in the developed world, studies among African women are still limited. The current myth is that endometriosis rarely affects women of African origin. However, among African-American women in the USA, studies have shown endometriosis is one of the common indications for major gynaecological surgery and hysterectomy, and is associated with a high hospital costs. Although genetically, African-American and African women from the African continent are not necessarily identical given the known genetic admixture among the African-American population. Lack of awareness of endometriosis as a potentially disabling disease and poor access to state-of art diagnostic and therapeutic facilities has contributed to the meagre data on prevalence of the disease in the African population. There is need to initiate awareness campaign of endometriosis to reach all women in Africa. Also to highlight the general lack of information, facilitate endometriosis research efforts and draw attention to the impact and implications of the disease to healthcare systems in our country and the continent in general.

The writer is a Senior Scientist with special interest in endometriosis and ovarian cancer research