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.

 

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

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

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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(63) Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences of the United States of America, 113(16), 4296–4301.

(64) Cheng, P. J., Pastuszak, A. W., Myers, J. B., Goodwin, I. A., & Hotaling, J. M. (2019). Fertility concerns of the transgender patient. Translational Andrology and Urology, 8(3), 209.

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I first heard about Henrietta Lacks through a friend three years ago when she shared a news article about Johns Hopkins naming a new research building after her. In that article, I learned that “Henrietta Lacks was a young mother of five from eastern Baltimore County who, despite radiation treatment at the Johns Hopkins Hospital, died in 1951 of an aggressive cancer. Lacks was the source of the HeLa cell line that has been critical to numerous advances in medicine.”

When I first read the article, I thought that was pretty cool that Johns Hopkins was trying to right the wrong they had done decades prior; they took Henrietta’s cells for scientific study without her permission and immediately reaped the benefits of science because of her. But she died from the aggressive cancer. I understood when I read the article that naming a building in her honour is nice and all, but I feel there is still so much more that needs to be done to do right by her family specifically.

You might be asking, “how does the story of Henrietta Lacks relate directly to Endometriosis?”

Over the past 19 years, I have subscribed to several medical journals in an effort to try to learn more about endometriosis. Whenever I felt I had a decent understanding of the research, I would regurgitate what I learned by posting to this blog. Occasionally I would run across the term “HeLa” in some of those research papers, but the science and language of the papers was over my head, so they never got posted here, though I kept them in a folder^{1, 2, 3}. So while I had seen the term “HeLa” in endometriosis-related research papers and medical studies, I didn’t know the Very Important History behind the HeLa cells.

Even at the time of seeing the Johns Hopkins article my friend had posted three years ago, I still hadn’t quite put the history and significance together. It was one of those “I think I’ve seen that term somewhere before but can’t recall where…” and in fact, it had been almost a decade since I’d seen that term, as indicated by the linked references above. This also sadly corresponds to me having abandoned blogging about endometriosis for many years in the wake of a devastating divorce, whereupon I was made to feel that I was ‘obsessed’ with being sick by constantly talking about endometriosis with friends, family, in my blog and in my video series. The ex spouse used this as justification for their affair, and even went so far as to say that he couldn’t take care of me anymore, despite the fact I was employed full time as a preschool teacher and was also engaged in hobbies outside of the home at his request. But I digress…

As I was saying, I still hadn’t quite put the history and significance together.

Until May 2021.

That’s when another friend shared an MLive article about Henrietta Lacks – this time in regards to the COVID-19 vaccine. I was moved by the article in many regards:

• I didn’t know the Pfizer vaccine for COVID-19 was developed in Michigan until I read that article, and it just so happens that the Pfizer vaccine is what I received in April, 2021, and I’m also originally from Michigan.
• The vaccine was developed using the HeLa cell line, and the article went into much more detail about Henrietta Lacks and her family legacy than the Johns Hopkins article had.
• And her great nephew Jermaine lives in Michigan, and has been honouring his Great Aunt Henrietta by teaching others about her and how her immortal cells are contributing to major scientific breakthroughs to this very day.
• Jermaine started out with an art exhibit in a Kalamazoo Michigan library, then developed a virtual presentation to continue educating people during the pandemic, and now he’s taken it on the road as The Immortal Life of Henrietta Lacks Traveling Museum.

Additionally, there is also a book, published in 2010 titled The Immortal Life of Henrietta Lacks, which I finally purchased last year. Rebecca Skloot, the author of that book, also created The Henrietta Lacks Foundation, which I donated to. The Foundation’s statement reads:

Established in 2010 by Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, the Foundation is inspired by the life of Henrietta Lacks, whose cancer cells—code named HeLa—were taken without her knowledge in 1951. They became one of the most important tools in medicine—with damaging consequences for her family, many of whom often struggled to get access to the very health care advances their mother’s cells helped make possible. Unfortunately, there are numerous examples of historic research studies conducted on individuals—particularly within minority communities—without their knowledge or consent. These include the Tuskegee Syphilis Studies, the Human Radiation Experiments, and others. The Henrietta Lacks Foundation seeks to provide assistance to individuals and their families who have been directly impacted by such research. The Foundation also seeks to promote public discourse concerning the role that contributions of biological materials play in scientific research and disease prevention, as well as issues related to consent, and disparities in access to health care and research benefits, particularly for minorities and underserved communities.

The Henrietta Lacks Foundation

In May 2021 after reading the MLive article, I was so overcome with gratitude for the immortal cells of Henrietta Lacks that I declared, “I need a Henrietta Lacks saint candle, okay?”

Saint Candles are pretty pop-culture, but I couldn’t find one anywhere for Henrietta Lacks. In December 2021, I searched again to no avail, so I looked up some companies creating Saint Candles and picked one I felt might be a good fit. I emailed a store in New Orleans called Mose, Mary and Me. I told them a bit about Henrietta Lacks and why I felt she should have a Saint Candle. Initially it was a custom order for me and my friend who had told me about Mrs. Lacks a few years ago, but both me and my friend hoped the candle would also be added to Mose Mary and Me’s existing line of candles. Great news! It has! You can buy a Saint Henrietta Lacks candle, too! Mose Mary and Me chose the image based upon a painting of her at the Smithsonian National Portrait Gallery (read about the portrait here).

If you purchase a Saint candle, please also pop over to the Henrietta Lacks Foundation and make a donation so that we may also continue to honour her family and the Black community while we thank Henrietta Lacks for the medical breakthroughs that have allowed us to better understand endometriosis.

“Endometriosis knows no gender. Everyone in the endo community deserves to feel respected, heard and welcomed just as they are. We see you and are here for you.” Find endoQueer on Instagram, Facebook, Twitter and their website.

I am a one-person show at LivingWithEndometriosis, and I agree with and embrace what endoQueer has to say. I am also queer, pan, demi and gender-fluid. <3

Fact or Myth? “Hormone therapy cures endometriosis.”

MYTH!

endometriosis.org writes:
“Synthetic hormonal drugs like the pill, Provera, Danazol and Zoladex have been used for many years to ‘treat’ endometriosis. However, these hormonal treatments do not have any long-term effect on the disease itself. They do temporarily suppress (quieten) the symptoms, but only while the drugs are being taken. Once use of the drugs ceases, symptoms more often than not return.

This means that hormonal treatments do not have a role in treating (eradicating) endometriosis. If eradication of the disease is desired, surgery performed by a gynaecologist with extensive knowledge and experience of the specialised techniques used for endometriosis is the only effective medical treatment.”

The Center For Endometriosis Care (CEC) writes:

“There is NO evidence that women treated with these agents have their endometriosis cured. On the contrary, there is ample evidence that most women have a prompt return of symptoms after they discontinue the drug. Menopause is a clinical situation which can be quite similar to the state induced by Lupron or Synarel treatment. When you consider that women who still have implants of endometriosis in their pelvis after menopause are very likely to have problems when postmenopausal hormone therapy is begun, it is hard to understand why anyone would reasonably expect a long-term cure from creating a state of extreme hypoestrogenism (lack of estrogen). In truth, if the implants are present, they can respond to stimulation. There has never been a medication that will cure the disease.” [See also Dr. Albee on suppressive medications and Dr. Albee on suppressing endo with birth control pills].

ICER (Institute for Clinical and Economic Review)‘s 2018 report on Elagolix: they “voted unanimously that the evidence was not adequate to distinguish the net health benefit of elagolix from that of treatment with either a GnRH agonist (leuprorelin acetate) or a hormonal contraceptive (depot medroxyprogesterone), due to limited and mixed evidence on clinical effectiveness and potential risks.

“They also noted the uncertainty around the therapy’s long-term side effects and clinical benefit, as elagolix use was limited to 6-12 months in clinical trials yet is intended to treat a chronic and disabling condition.

“While elagolix appears to offer short-term clinical benefits in terms of reduced pain and improved quality of life for women living with endometriosis, evidence is not yet sufficient to rule out the possibility that this therapy may pose long-term safety risks for patients,” noted Dan Ollendorf, PhD, ICER’s Chief Scientific Officer.”

You can find this and other myths here.

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