Blog of the Society for Menstrual Cycle Research

#Endometriosis art, film and a graphic book: Endo Weekend Links #3

March 19th, 2016 by Laura Wershler

“1 in 10 women suffer from a disease that most people have never heard of.”                  

Weekend Links at re:Cycling acknowledges the many ways in which the creative arts are taking on #endometriosisawareness advocacy.

1. Film: It was a big week for the producers of the documentary Endo What? that premiered on March 16th in New York City.

 

EndoWhatTweet2

 

The film has its European premiere on March 21, 2016 in London, England. The quote above opens the trailer for the film Endo What? You can watch it here:

 

 

2. Graphic Book: Kaye, a graphic artist from the U.K., experienced 15 years of extreme pain before finally being diagnosed with endometriosis. She writes on her Endoawareness website: “As a young woman it was almost an embarrassment to admit how awful the symptoms were and I went to extreme lengths to disguise it from friends and family.” Kaye used her talent to create Living with Endometriosis, a free downloadable e-book. You can read Kaye’s personal endometriosis story here.

endo-ohhhkaye

3. Endometriosis Awareness through Art: This Facebook community presents the work of various artists using various art forms including painting, photography, graphic imagery, video and music to focus attention on endometriosis.

Endo Art Facebook Page

 

 

Endometriosis, painful sex, and physical therapy

March 17th, 2016 by Editor
Dr. Sallie Sarrel is a Women's Health Physical Therapist

Dr. Sallie Sarrel is a Women’s Health Physical Therapist who specializes in endometriosis.

“We have emerged from the days of Freud and finger pointing that sexual pain is only psychological. Especially in the case of women with endometriosis, sexual pain is driven by physiologic reasons.”

Guest Post by Dr. Sallie Sarrel, PT ATC DPT

Sexuality is one of the innermost characteristics of existence for both women and men. A state of mind representing our feelings about ourselves, sexuality is how we relate to people in our community and society. It is part of how we establish relationships, and how we express ourselves. Sexuality is a basic component to development and growth throughout the lifecycle.  Sexual experiences drive sexuality.

For many of the 176 million women worldwide with endometriosis, sexuality has been destroyed. Painful sex or dyspareunia is one of the most devastating symptoms of the disease. Endometriosis is when tissue similar to (but not the same as) the lining of the uterus is found in areas of the pelvic cavity and sometimes elsewhere like the bowel and the diaphragm. When endometriosis infiltrates the ligaments attaching the uterus to the tailbone, the uterosacral ligaments, or an area behind the vagina called the recto-vaginal septum there is tremendous pain during sex. Additionally, endometriosis can cause pain and muscle signals to be jumbled. Then a reactive spasm to the pelvic floor occurs. It is usually a combination of all three things that causes painful sex in a woman with endometriosis.

There is on average an 8-10 year diagnostic delay for endometriosis. It is thought endometriosis emerges as women hormonally mature. Therefore, as a woman is developing through her formative teens and twenties and then into her thirties and beyond, the pain the disease brings alters development itself. Women who suffer from painful sex can travel through life believing that sex is supposed to hurt. This is isolating and trauma-inducing. Painful sex becomes a barrier between woman and a healthy, connected, sexual self.

Enter the Women’s Health Physical Therapist. Women’s Health Physical Therapy is a rapidly growing niche practice within physical therapy. Women’s Health therapists use every facet of their physical therapy training to evaluate and treat female clients paying specific attention to sexual medicine and the pelvic floor. Just like if the knee or shoulder hurt, a physical therapist works on the bones, fascia, muscles, and ligaments, Women’s Health or Pelvic physical therapists work on all that lines the pelvis. To women with a disease that makes sex painful, the Women’s Health Physical Therapist can be a superhero.

Women with endometriosis need pelvic physical therapists because the base of the pelvis is lined with muscles. There are two layers of the pelvic floor: A superficial layer, which surrounds the openings of the vagina, rectum and bladder and a deep layer, which supports the organs. Adhesions from endometriosis change this support system. Disease on the organs puts tension on the muscle groups causing higher tone in some areas and muscle wasting in others.

Endometriosis also can send messages to turn the volume all the way up on the nerves that then begin to send painful messages all on their own. Central sensitization begins to drive the system towards pain with or without stimuli. Spasms in the entrance to the vagina can make penetration painful and endometriosis can make deeper penetration painful. This can leave a woman not only in pain all the time, but feeling lost and hopeless. In a private one-on-one physical therapy session women can explore all the musculoskeletal issues that compound dyspareunia felt with endometriosis.

We have emerged from the days of Freud and finger pointing that sexual pain is only psychological. Especially in the case of women with endometriosis, sexual pain is driven by physiologic reasons. A pelvic physical therapist may not be able to excise endometriosis from the pelvis but they are able to retrain the floor to help free a woman from pain. Those muscular levels in the pelvis often need some urging to release their tension. That signal from the nerves and the brain needs calming. Most of all pelvic physical therapy can be a safe space to honestly explore the physical reasons that have been hampering a woman from participating fully in her own sex life.

If penetration hurts, a physical therapist can examine those causes. If hip pain or back pain prevents sexual participation pelvic health physical therapists can treat those causes. Physical therapists treat the nerves that participate in sexual enjoyment. They work with the fascia and the tissue involved in continence. Pelvic PTs help with constipation and with control over loose stool. Women who have absence of genital sensation or an overabundance of genital sensation can all benefit from Pelvic PT. Scar tissue and adhesions, common with women who have been treated surgically for endometriosis, are also treated.

Women’s Health PTs help their patients thoroughly understand the interconnections between diet, lifestyle change, exercise and sex, enabling them to access their best quality of life after so many years of suffering from endometriosis. Pelvic PT’s are direct and understanding in their discussions of sexual pain so that no woman feels unheard or embarrassed by their pain. Nothing can be worse than having an innermost part of oneself negated and minimized because it seems like there is no help for it. It can be humiliating to call a doctor’s office and report painful sex or orgasms, only to be minimized. Women’s Health PTs do not mock. They do not minimize. They are the healthcare professionals who have chosen to help women override the shadows painful sex casts. Women don’t have to hide their pain or themselves in a misogynistic society devoid of pleasure and devoid of sexual expression.

We must talk about sex and endometriosis

March 15th, 2016 by Editor

“Societal bias often tells us pain is simply ‘part of life’ and that symptoms of endometriosis like dyspareunia (painful sex) are somehow ‘normal’ or that we ‘shouldn’t talk about them.’ This is wrong.”

iStock_000011748410SmallGuest Post by Nancy Petersen, RN

Endometriosis significantly impairs health-related quality of life across multiple domains, including pain, sexual, psychological and social functioning. The disease often creates a constellation of symptoms, each patient presenting with her own unique combination of various indicators. Dyspareunia (painful sex) alone represents a significant morbidity; for at least half of all affected by endometriosis, it is among chief complaints.

Many studies have demonstated ‘dyspareunia’ as a chief impact of endometriosis in affected individuals.

Sexual dissatisfaction and impairment are common, particularly among those with deeply infiltrating/fibrotic disease. However, stage matters not: research indicates those with limitations towards ovarian or other involvement were only ‘slightly less likely’ to experience dyspareunia than counterparts with deep/rectovaginal endometriosis.[1] Moreover, when compared to other gynecologic disorders, endometriosis was significantly linked to less sexual/partnership satisfaction: 61% vs. 35%.[2] For some, lesions in the lower pelvis are struck during penetration, resulting in pain akin to that felt when the blades of the bivalved speculum are opened during pelvic exam. For others, it is pain with or inability to achieve orgasm; for still others it may be loss of libido altogether. Dyspareunia can ruin relationships, impact an individual’s sense of self and overall well being, contribute to infertility, and cause severe impairment of sexual functioning.

“Sexual health is a state of physical, emotional, mental and social wellbeing related to sexuality; it is not merely the absence of disease, dysfunction or infirmity…Sexual health is a global issue that is vital to overall wellbeing.” World Health Organization; Abdool, et al.

Bearing in mind painful sex is among cardinal symptoms–a unique agony which can be exquisite in nature — we must address sexual health and well-being as a global issue and indeed, a human rights issue. Societal bias often tells us pain is simply “part of life” and that symptoms of endometriosis like dyspareunia are somehow “normal” or that we “shouldn’t talk about them.” This is wrong. This kind of silence can be crippling, and we MUST talk about it. But who is listening?

“Your poor partner; just lube up and take one for the team.”

The pain of dyspareunia is real and grounded in corporeal origin. So why the continued psychological dismissal? When over 10,000 respondents in our endometriosis community were recently surveyed on this topic, response was fast and furious. These are among the saddest narratives I have seen in women’s healthcare over the fifty+ years I have been involved:

“Have more sex, it will stretch things out and relieve your pain.” –to a 16-year-old virgin

“Get a hobby. I’ve gotten into motorcycles and I love them! You should, too.” –to a woman forced into abstinence by pain

“[The doctor said he] couldn’t feel anything and pain during sex was a result of ‘use it or lose it.’ In other words, because we didn’t have sex often — which we didn’t because it was painful — that it was causing the pain. He also asked if I was planning on getting married, because I wasn’t married to my husband at that time.”

“I was told sex hurt because I was fat. No exam done, nothing at all. That was it.”

“…All the doctors through the years who said ‘the pain is only in your head. Intercourse is an important and natural part of a relationship, you need to ignore the pain and learn to relax. Go and see a psychiatrist.’”

“If you don’t have sex with your husband soon, he’ll get it somewhere else…move past the pain.”

“Five years post diagnosis, my doctor insisted (in front of my husband) that I take an STD test, as I ‘couldn’t possibly still be having problems with endometriosis after surgery’ — even though I’d clearly told her several times that I’d been in a monogamous relationship with my husband for many years. Feeling vulnerable and weak, I complied and permitted a blood test for STDs. Of course my results came back clean, free from any STDs. But I felt dirty, ashamed and hopeless. This same doctor told me on another visit, ‘maybe your job will have to be your baby’ — after we were unsuccessful in our two IUI attempts and had two miscarriages.”

“After complaining of pain with sex many times, I was sent to [a psychiatrist]. Luckily, he was a good sort and told me that my pain was definitely real, and he was tired of being used as a dumping ground by the NHS for women with my problem. It took me twenty years and switching countries to finally get diagnosed.”

There were nearly one thousand additional comments that followed within hours, all variations on theme. Blaming pain with sex on ‘frigidity’ or other psychological entities is an old myth that has no basis in science. Is this just an easy out for those who fail to answer the challenges faced by these patients? Professor Shirley Peace reviewed data on psychological profiles more than three decades ago.[3] The literature was replete with Minnesota Multiphasic Personality Inventory (MMPI) studies in women with pelvic pain, demonstrating an abundance of schizophrenia, neurosis, psychosis, depression and related differential diagnoses. Yet, as Peace revealed, few had retested those same respondents once their pelvic pain was relieved. In those who were, their MMPIs returned to normal or near normal. It is an injustice and indictment of our profession to continue to deny women their sexual life when pain with sex as a result of endometriosis can be alleviated through adequate and skilled excision surgery to remove disease and correct anatomic abnormalities alongside adjuncts like pelvic floor physical therapy.

#EndometriosisAwarenessMonth: Weekend Links #2

March 12th, 2016 by Laura Wershler

As Endometriosis Awareness Month continues, here are a few worthy and/or interesting media stories that mention endometriosis so far this March:

awareness_month_bannerMarch 8, 2016, Medical Xpress, Survey launched to learn more about Endometriosis

You’d think the medical community would know a lot about a serious disease that impacts the lives of about 176 million women worldwide. Not so:

Researchers from the University of Liverpool’s Institute of Translational Medicine, in collaboration with the Universities of Edinburgh and Oxford, are launching a national survey to further understanding of a common gynaecological condition called endometriosis.

 

March 9, 2016, Christine Hauser, The New York Times, Padma Lakshmi Opens Up About Rushdie in Memoir

Endometriosis advocate, cookbook author and reality television star Padma Lakshmi released her memoir Love, Loss and What We Ate on March 8th. The news story makes clear the broad impact endometriosis can have on a woman’s life:

Ms. Lakshmi suffered from endometriosis, a painful uterine disorder in which tissue grows outside the organ. The struggles of dealing with it — she had extensive surgery — upended their sex life and contributed to the demise of their marriage, she writes. Ms. Lakshmi said Mr. Rushdie at one point called her “a bad investment” and was insensitive to her medical condition even as she tried to recuperate.

 

March 10, 2016, Sola Ogundipe, Vanguard,  Nordica, Diamond Bank walk in Lagos for endometriosis awareness

Events to mark Endometriosis Awareness Month are happening all over the world. In attendance at the Endo Walk in Lagos, Nigeria, was international model and endometriosis advocate Millen Magese.

IT was a star-studded list of  Nigerians that braved the early-morning downpour on Saturday March 5, 2016, to  participate in the annual Endo Walk, aimed at breaking the silence around Endometrioisis – a silent but growing health condition that predisposes women of reproductive age to ill health, infertility and severe periodic pains.

 

March 11, WTOP, Endometriosis and period pain: Redefining normal for teenage women

An article sponsored by  The Center for Innovative GYN Care based in Washington, DC, makes the point that far too often teenagers and young women are told that the menstrual pain they feel is normal:

The perception is that this is a burden a woman must bear as part of her biological make-up, and the less said about it the better, unless you are selling a pain reliever/diuretic combo. Those who manage to make it through years without experiencing pain are deemed “lucky.” But, the mere acceptance of pain as a side effect of the onset of female fertility has served, some would say for thousands of years, to ignore a sign of an actual disease: Endometriosis. A disease that increases in intensity over time.

 

Coming up next Saturday, March 19, is the 2016 Worldwide EndoMarch taking place in various cities throughout the world. Click here for information.

Thank you, Endometriosis

March 10th, 2016 by Editor

“This may sound strange, but because of endometriosis, I have a lot to be thankful for.”

Sophie Zivku

Sophie Zivku

Guest Post by Sophie Zivku, MA, Communications and Education Manager, Diva International Inc.

If you asked me ten years ago where I saw myself in my 30s, I never would have said working for a menstrual cup company and being known in my social circle as the expert on all things period. But, here I am, at 32, working for Diva International Inc. (makers of The DivaCup), writing about menstruation.

I wasn’t always as passionate about the menstrual cycle as I am today. In fact, I despised my period. If my body could stomach the Pill, I’d probably still be taking it continuously without regret.

So what changed?

It was summer 2010 and I was taking the season to rest before starting a year-long journey of graduate studies. I spent my afternoons basking in the sun on my front porch, reading whatever I could.

One afternoon I came across a book review for Elissa Stein and Susan Kim’s, Flow: The Cultural Story of Menstruation. “Interesting,” I thought, “An entire book about periods—an entire book about something that has ruled my life since I was 12.”

At this point in my life, I didn’t have many answers to the reason why my period was so awful. I had seen doctor after doctor, without much help or support. Perhaps Flow had something more to offer?

I had to read it.

Flow-the-bookBy the second sentence I was hooked, intrigued, and obsessed with anything to do with menstruation. With every page turn I felt as if I was empowering myself with the knowledge and tools I needed to finally combat my awful period symptoms. I checked out stacks of books from various libraries and began researching online; I couldn’t get enough!

I didn’t plan on writing my Major Research Paper on the discourse of menstruation in feminine hygiene advertising, but once I caught a glimpse into its history, I knew I had to, if anything for myself. Flow helped me to better understand why there weren’t many answers to the questions I had about my menstrual health. It helped me understand why the medical field didn’t take menstruation seriously and it encouraged me not to accept it as so.

As a writer and researcher I truly believe that the best way to overcome something is to research the topic until you feel you know more about it, then it does about you. It was time for me to take my period experience back.

While working on my Major Research Paper, I started seeing a counselor. I had a lot of anger towards my uterus. She encouraged me to write about it and so began my personal blog, dropsofscarlet. Dropsofscarlet was not only a forum for me to vent my frustration about my period, but also a forum for me to share my research findings and random musings about the menstrual cycle.

After graduation, I joined the team at Diva International Inc. and since then have learned much about myself, the feminine hygiene industry, and a disease I’ve lived with for years— endometriosis. A year after starting my much-loved career, I underwent laparoscopy surgery which confirmed the doctor’s suggested diagnosis of endometriosis. Sadly, my doctor at the time refused to remove the excess growth as he believed: “It would just grow back in two years.”

Unfortunately for him, I knew better. After much research, I got a second referral, and then a third and then finally a second surgery which revealed stage four bilateral endometriosis. My surgeon removed as much of the excess growth as he could, cleaned out my left ovary (which was filling with endometrial tissue) and repaired my uterine septum. Recovery was less than pleasant. My first cycle after surgery, I emptied The DivaCup every 40 minutes, after soaking through an overnight pad.

Most people don’t know much about endometriosis and if they do, they simply think it means a woman has bad period cramps. While cramps can be one symptom, nausea, vomiting, excess bloating, heavy flow, painful ovulation, pelvic pain, infertility, immune dysfunction, painful sex and mood changes are just a few of the symptoms women can experience. I often tell people that endometriosis is a menstrual cycle disease. This means that the disease is experienced on a similar cycle as the menstrual cycle (28-35 days; essentially, every day). While there is no known cure, doctors often prescribe some form of birth control to manage the symptoms, along with pain medication.

These are temporary solutions.

Because of the reach and virality of social media, endometriosis is becoming better known. Celebrities like Padma Lakshmi and Lena Dunham are sharing their stories and thanks to the work of various organizations like the Endometriosis Foundation of America, Endometriosis Network Canada, and Endometriosis UK (to name a few), more women are receiving the care they deserve at a much younger age. And because of my job I’ve had the privilege to secure partnership between Diva International Inc. and the Feinstein Institute for Medical Research and their important study: Research OutSmarts Endometriosis (ROSE Study). This five-year study is seeking to understand the genetic basis of the disease through collection of menstrual flow using The DivaCup. The study aims to provide women with improved diagnostics and treatments and to date the study is well on its way to achieving its research goals.

How one woman’s experience with endometriosis lead her to make a difference

March 7th, 2016 by Editor

Endometriosis Personal Experience Story by Jolene Rheault

Photo provided by Jolene Rheault

Photo provided by Jolene Rheault

I was 13 when I got my first period and with it came some of the most horrific pain I had ever felt. At some points, it was so bad I would vomit from the pain and it was very common for me to stay home from school for days at a time. I remember telling my doctor about it at the time, but was brushed off and put on birth control pills. The pain continued, despite the medication.

Cut to age 29 when my husband and I thought it would be nice to have a second child. We’d gotten pregnant with Cayden easily, so we assumed there was nothing wrong. Six months later, I was still not pregnant and suspected that I may have endometriosis. After a year, I went to see a doctor and have blood work done. I was told there were no problems, my painful cramps throughout the month were normal, and the only thing they could offer was prometrium. I took this for two cycles but it didn’t help my pain.

I finally went to see an endocrinologist about my infertility. I remember stating at our first meeting what I thought was the problem. If I hadn’t spoken up for myself, would I still have been diagnosed properly or not? I’ll never know, but my guess is I would not have been.

The doctor confirmed through laparoscopy that I have stage 4 endometriosis. I had the disease removed from my right round ligament and my right ovary. My left ovary was stuck to my uterus and this was corrected. She told me that the endometriosis “would not come back” and that I would have “no problems getting pregnant.”

Unfortunately, this is not true, but one of the myths that persists about this disease. Though it may help, surgery is not an absolute cure for endometriosis.

Four months later I ended up in the emergency room with crippling pain. Ultrasound revealed that I had a large, hemorrhaging endometrial cyst on my left ovary. The ER doctor said I needed this removed within the next 12 weeks, before it burst in my stomach. It took almost six months before I was able to have this second surgery with a new endocrinologist who removed the endometrioma, as well lesions she found on my fallopian tubes. I then had a test to determine if my fallopian tubes were open. To address a hormonal issue I was put on the steroid Dexamethasone that caused me to gain about 40 pounds. I now have less pain, for which I am extremely grateful—but I still have pain.

The next month I became pregnant, but miscarried within days. We’ve had no luck since then and took a break for awhile. We will be gearing up to start IUI fertility treatments in two weeks and are so excited!

During the three years of my infertility journey, I dealt with depression, anxiety and just getting through day-to-day life. I can’t count how many days I spent crying. I dealt with my emotions by finding ways to turn my bad experience into helping others. I started by creating an infertility bible study on Facebook that working women could attend. (Most infertility bible studies typically are aimed towards stay at home moms/wives.) We have about 60 members and it has been a great source of comfort.

The other project I poured my heart and soul into is the Endo Challenge, a social media movement where the “sisters” of the endo community turn their social media profile pictures yellow and encourage others to do the same in support, to bring awareness to endometriosis and how it affects its sufferers.

In our first year, almost 8,000 social media photos turned yellow. Our website reached over 30,000 people in over 100 countries. We held live Q&A sessions with world-renowned endometriosis specialists. This year we had over 8,000 social media photos turn yellow in the first three days of March. Our goal for 2016 is 50,000!

Despite all the challenges I have faced with this disease, I feel blessed to have my miracle son Cayden. I am blessed to have made a difference in so many lives.

I am blessed.

There is no absolute cure for endometriosis, and there needs to be. That is why I am asking my friends, family and loved ones to stand up and show their support for me by spreading awareness about this disease. No woman should be forced to live this way simply because she has no other option.

Jolene Rheault, one of the founders of EndoChallenge, is an endometriosis and infertility advocate involved in many areas of disease support and education. It took 16 years for her endometriosis to be diagnosed. Jolene lives in Colorado with her husband and four-year-old son.

#EndometriosisAwarenessMonth: Weekend Links #1

March 5th, 2016 by Laura Wershler
Photo courtesy of Heather Guidone

Photo courtesy of Heather Guidone

Worldwide, and here at re:Cycling, March is #EndometriosisAwarenessMonth. To increase your knowledge of this insidious disease, read through this series of articles and personal stories, briefly quoted here, that were published by The Guardian last September.

 

Sep. 27, 2015, The GuardianWhat is endometriosis guide

Endometriosis is a condition in which tissue similar to the lining of the uterus (the endometrium) is found outside the uterus, most commonly in the pelvic cavity.

It can grow on organs including the ovaries, uterus, bowel and pelvic sidewall, causing inflammation and pain.

 

Sep. 27, 2015, Gabrielle Jackson, The Guardian, Endometriosis: 20 things every woman (and every doctor) should know

11. 
Endometriosis affects the immune system but it isn’t an autoimmune disease.

12. 
The severity of endometriosis doesn’t necessarily correlate with the amount of pain or other symptoms a women has.

 

Sep. 27, 2015, Gabrielle Jackson, The GuardianI’m not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis

I feel sad that this is the hardest story I’ve ever written and that I’m embarrassed that people will read it and know the intimate details of my life. But I’m also hopeful that a conversation has begun.

 

Sep. 27, 2015, Sarah Boseley, Jessica Glenza and Helen Davidson, The Guardian, Endometriosis: the hidden suffering of millions of women revealed

The lack of research and funding for a disease that affects so many women is “a major scandal”, said Lone Hummelshoj, who heads the World Endometriosis Research Foundation and the World Endometriosis Society. 

“Endometriosis affects women in the prime of their life. It is not a lifestyle disease. It is not a disease you get later in life. It attacks teens, young women when they should be out being active, working, having children, having sex – 50% of them are struggling with sex because it is too painful,” she said.

 

Sep.28, 2015,  The Guardian view on endometriosis: a silent source of unnecessary misery–Editorial

A disease that affects one in 10 women of childbearing age, that forces young girls to take days off school, older women to abandon careers and condemns others to childlessness should not be near-invisible. And yet endometriosis is rarely discussed, and when it is, it is often obscured by myths suggesting that women themselves are in some way to blame. Many are ashamed to admit to suffering, and often doctors seem ill-prepared to diagnose and treat the disease. It is a secret plague; yet it could afflict as many as 176 million women around the world.

 

Sep. 28, 2015, Hilary Mantel, The GuardianEndometriosis took my fertility, and part of my self

My own battle with the disorder seems to have occupied most of my life. Period pains were normal, I was told, and if I seemed to suffer more than most, it must be because I had a “low pain threshold”. At 19, I began actively seeking a diagnosis. I was 27 when I received it, and by that stage, major surgery was the only answer. Abruptly I lost my fertility and, in some ways, lost myself. Though I was told I was cured, the condition recurred, and drug treatment led to huge weight gain. Thyroid failure followed and the devastating chain of consequences pursues me to this day. Anything I have achieved has been in the teeth of the disease.

 

Sep. 28, 2015, The Guardian, ‘The pain is paralysing’: 30 women describe living with endometriosis

I’m a gynaecologist and I didn’t want to accept that I had it

It’s treated like some shameful secret

Endometriosis is ruining my marriage

Doctors who know how to treat it are few and far between

 

Sep. 28, 2015, Jessica Glenza, The GuardianEndometriosis often ignored as millions of American women suffer

Many patients and specialists contend that the lack of research funding and public knowledge of endometriosis is because of who and what it impacts: almost exclusively women, largely during menstruation. 

“I went 10 years, through 22 surgeries, before I got help,” said Heather C Guidone, the surgical program director at the Center for Endometriosis Care in Atlanta. Through those 10 years, and since hearing the stories of other patients, she said doctors often tell women, “‘Periods are supposed to hurt. It’s a woman’s lot in life to suffer.’”

 

Fighting for endometriosis awareness in a culture of menstrual misinformation

March 3rd, 2016 by Editor

Breaking the Cycle of Misinformation About Endometriosis
By Nancy Petersen, RN, and Heather Guidone

EndoBannerCECMenstruation is a vital, normal process—yet remains linked to taboos, misconceptions and practices, particularly in relation to associated diseases like endometriosis. As a result, one of the most critical challenges facing the endometriosis community is a lack of factual awareness. The legacy of misinformation enshrouding the disease persists, propagated even by certain providers and organizations to patients, medical educators to next-generation professionals, health publishers to media, generation to generation. Consequences for these poor information systems are far-reaching, stifling the conversations we should be having about signs and symptoms of endometriosis that could lead to earlier intervention.

Paul Altrocchi, MD once stated it would take “about thirty years for new ideas about endometriosis to take hold.” Yet for more than five decades, dedicated academicians and physicians have pointed out time and again that much of what we thought we knew about the disease is wrong. Still, misinformation remains ubiquitous, and the enduring lack of endometriosis awareness pervades every level of society—despite its status as a true public health crisis. So why do myths and obsolete ideas continue to drive care? Perhaps, as Spence Meighan, MD once said, “What we teach in medicine is over 50% wrong, but the problem is—we don’t know which half.”

Impacting an estimated 176 million individuals worldwide (WERF), endometriosis is characterized by the presence of endometrial-like tissue in extrauterine sites. The aberrant disease process gives rise to pain, inflammation, infertility/pregnancy loss, fibrosis/adhesions, organ dysfunction and much more. Influenced by myriad epigenetic, environmental and molecular factors, several mechanisms play roles in its pathogenesis. Though largely affecting reproductive-aged females, endometriosis can impact menstruators and non-menstruators alike. Even further isolated are rare cis males struggling to access care in a traditionally female-identified space, as well as LGBT patients who face additional challenges in settings that fail to be inclusive. Prevention and non-surgical diagnosis remain elusive, and many sufferers are frustrated by widespread lack of understanding. Most patients will need complex, multidisciplinary care, e.g. excisional surgery combined with adaptation of lifestyle changes, yet few are guided towards Laparoscopic Excision (LAPEX) and remain unaware of important adjuncts such as physical therapy, nutritional approaches and alternatives that may help when combined with quality surgery. Even those who are directed towards effective resources may still find themselves faced with insurmountable barriers.

Whilst minor cramping with periods may be expected, bloating, pallor, rebound tenderness, nausea/vomiting, painful cramping and bowel movements, painful bladder, pain with exercise, interruption of sleep, pain with sex and so much more are simply not routine accompaniments to a normal menstrual cycle. By contrast, early disease intervention can reduce morbidity, infertility and progressive symptomatology in patients of all ages. Yet in order for those affected to make educated choices about health pathways, they must be provided with correct information upon which to base decisions. Likewise, although endometriosis research seems omnipresent, much of it is redundant in nature and sorely lacking in translational benefit. Moreover, much of the effort is directed towards pharmaceutical diagnosis and management, which do not provide long-term solutions.

“Blame the patient” remains common, and individuals are still too often told the pain is either normal or in their heads; others espouse ancient notions of Sampson’s Theory of Retrograde Menstruation as cause, and hysterectomy, drug therapy, incomplete surgery or pregnancy as cures. Press coverage around endometriosis is often connected to high profile subjects and typically rife with inaccuracies, which in turn get shared in perpetuity. For example, a recent article covering a celebrity’s reported ‘time off’ because of her endometriosis depicted the disease as a “hard to diagnose” illness only affecting older women, characterized by normal endometrium merely implanted elsewhere by means of “backwards periods,” easily treated by drugs, hysterectomy or non-excisional surgery. This is the kind of awareness endometriosis does not need.

This lack of authoritative awareness contributes to decade-long delays in diagnosis and effective care. Consequences of the perpetuation of generational taboos/secrecy, poor health literacy and a prevailing ethos of menstrual shaming—by physicians, caregivers, peers and media alike—are associated with acceptance of “The Curse” mentality. Cultural attitudes towards the menstrual cycle as a hygienic crisis or embarrassing burden have profoundly negative effects. In today’s progressive society, ignorance of facts can lead to deficient health practices and adverse medical, educational and social outcomes:

  • Menstrual shaming and invalidation of painful symptoms leads to increased absenteeism, synonymous with lost educational and fiscal opportunities;
  • Low confidence levels and suboptimal therapy choices among clinicians;
  • Familial and social isolation;
  • Negative construct across media and peer groups;
  • Lack of social and physical support mechanisms; and
  • Physical worsening of disease leading to negative self-objectification, body shame or sexual decision-making; permanent damage including loss of fertility; deficient quality of life and even, as we have tragically observed recently, loss of life.

We must put an end to the divisiveness and lack of collaboration among stakeholders, who should be working together towards solutions; we must continue to lobby policymakers for robust institutional changes to further benefit those struggling with the illness; we must end the secrecy, isolation and pain of countless sufferers; we must revitalize and create a space for menstrual communication, broaden the gender dialogue and engage in key conversations. We must allow the endometriosis community’s voice to be heard. We believe we can alleviate the culture of menstrual misinformation through behavior changes, encouraging research, expanding fundamental components of management, increasing authoritative awareness, and reducing costs through improvement and standardization of care for those in need.

March is Endometriosis Awareness Month—Worldwide

March 1st, 2016 by Laura Wershler

awareness_month_banner“Endometriosis affects an estimated 176 million women worldwide during their most reproductive and productive years.” 

      World Endometriosis Research Foundation 

 

 

 

 

 

 

 

Around the world throughout the month of March women living with endometriosis, health-care providers who treat the condition, and endometriosis advocates, will be hosting events and using social media to raise awareness of a condition that affects 1 in 10 women. How many women do you know who live with endometriosis? How much do you actually know about the disease?

Having endometriosis is much, much more than having bad periods. It is a complex disease that defies easy definition and easy treatment, one about which much misinformation persists. As the Center for Endometriosis Care explains in an article on their website:

Despite being among the most common of diseases, persistent myths, misinformation and deficient health literacy about the disease continue to enshroud endometriosis – even by the most well-intentioned sources – often resulting in poor information systems and continued lack of effective care.

On re:Cycling this month, we aim to amplify the voices of women from around the world for whom endometriosis is either a personal or professional experience, and many times both.

We want readers to know the difference between myths and facts about endometriosis, to learn about treatment options, and to understand what it is really like to live with a condition that can take up to 10 years or more to be diagnosed, all the while growing more severe and debilitating.

Subscribe to re:Cycling so you don’t miss a post. Follow #endometriosisawarenessmonth on Twitter. And share the details of any Endometriosis Awareness Month Events happening in your community.

Laura Wershler is a veteran sexual and reproductive health advocate and writer, SMCR member, and editor-in-chief of re:Cycling.

2016 Endometriosis Awareness Events:

Endo What Film Premiere, March 16, 2016, New York City

Worldwide EndoMarch, March 19, 2016

San Francisco

Australia

Endometriosis New Zealand

The Endometriosis Network of Canada

List of events happening around the world (Canada, Finland, Germany, Ireland, Italy, Netherlands, Spain, Sweden, United Kingdom, USA)

What your period is trying to tell you about your thyroid

February 26th, 2016 by Editor

Guest Post by Dr. Lara Briden, ND

The thing I love about periods is the story they tell about health. I am constantly asking my patients about their periods—even if they’ve come to me for something else.

For example, my patient Sharon came to me for help with elevated cholesterol. She also reported heavy periods and premenstrual spotting, which I was very interested in. “You could have a thyroid problem,” I said. She had already had a basic thyroid test (TSH) with her doctor, and was told it was normal. I ordered further tests, and we found that she did indeed require thyroid hormone. Three months after starting treatment, Sharon’s cholesterol had improved because thyroid hormone promotes the healthy removal of cholesterol from the blood [1]. Also, Sharon’s periods had lightened and the premenstrual spotting was also almost gone.

Thyroid hormone affects every cell in the body. That’s why thyroid disease causes a vast array of symptoms including fatigue, elevated cholesterol, hair loss, and dry skin. That’s why thyroid disease affects menstruation.

Menstrual signs of hypothyroidism (underactive thyroid)

Photo supplied by Lara Briden.

Photo supplied by Lara Briden.

  • Irregular periods or lack of periods (amenorrhea)
  • Premenstrual spotting
  • Heavy or light periods [2]
  • Ovarian cysts [3]
  • Early [4] or late [5] menarche

Menstrual signs of hyperthyroidism (overactive thyroid)

  • Irregular periods or lack of periods (amenorrhea)
  • Light periods [2]
  • Late menarche [5]

How Thyroid Affects Periods

There are numerous mechanisms by which thyroid hormone (or lack of thyroid hormone) affects menstruation.

Thyroid disease causes failure to ovulate with resulting progesterone deficiency. Both hypothyroidism and hyperthyroidism disturb pituitary hormones (prolactin, FSH, LH). Hypothyroidism deprives the ovarian follicles of the thyroid hormone they need to develop [7].

Hypothyroidism impairs insulin sensitivity, which is one reason thyroid disease is associated with polycystic ovarian syndrome (PCOS) [8].

Hypothyroidism reduces sex hormone binding globulin (SHBG), which causes greater estrogen exposure and therefore heavy periods. In contrast, hyperthyroidism increases SHBG which causes light periods.

Hypothyroidism impairs the healthy detoxification of estrogen, which causes greater estrogen exposure and therefore heavy periods.

Hypothyroidism decreases coagulation factors, which causes heavy periods. In contrast, hyperthyroidism increases coagulation factors, which causes light periods [7].

Why Doctors Miss a Thyroid Diagnosis

Doctors often don’t consider thyroid disease as a possible underlying cause of a period problem. They should remember that menstrual disturbances from thyroid disease have been documented in the medical literature since 1840 [2].

If doctors do consider thyroid, they usually go no further than a simple TSH test—a blood test to determine the level of thyroid stimulating hormone—which they interpret very conservatively. Under current guidelines, hypothyroidism is not flagged until TSH is greater than 5 mIU/L. Many thyroid experts, including the American Association of Clinical Endocrinologists (AACE) [9], believe that hypothyroidism can be diagnosed by a TSH greater than 2.5 mIU/L. If adopted by more doctors, the 2.5 guideline would be a more sensitive way to detect thyroid disease. Another way to detect a hidden thyroid problem is a test called “thyroid antibodies” (also called anti-TPO antibodies), which is a marker of autoimmune thyroid disease (the most common type of thyroid disease).

What If You Have Thyroid Disease?

Medical treatment of thyroid disease includes thyroid hormone replacement for hypothyroidism and thyroid suppression for hyperthyroidism.

Natural treatment works primarily to reduce the autoimmune reaction that underlies most thyroid disease. For example, elimination of dietary gluten has been shown to reduce thyroid antibodies [10]. The supplements vitamin D and selenium can also be helpful. A low-dose iodine supplement is appropriate only for non-autoimmune thyroid dysfunction. You can find more information about treatment on this post on my blog.

Periods are not separate from the rest of the body. They are an expression of general health and are affected by nutritional status, digestion, immune function, insulin sensitivity, and most profoundly—thyroid disease!

Lara Briden is a board certified naturopathic doctor who qualified from the Canadian College of Naturopathic Medicine in 1997. She currently runs a busy hormone clinic in Sydney, Australia, and posts regularly at Lara Briden’s Healthy Hormone Blog. Early in 2015, Lara released her book Period Repair Manual: Natural Treatment for Better Hormones and Better Periods.

References

  1. Pucci E et al. Int J Obes Relat Metab Disord. 2000 Jun;24 Suppl 2:S109-12. Thyroid and lipid metabolism. PMID: 10997623
  2. Koutras DA. Disturbances of menstruation in thyroid disease. Ann N Y Acad Sci. 1997 Jun 17;816:280-4. PMID: 9238278
  3. Shu J et al. Ignored adult primary hypothyroidism presenting chiefly with persistent ovarian cysts: a need for increased awareness. Reprod Biol Endocrinol. 2011 Aug 23;9:119. doi: 10.1186/1477-7827-9-119. PMID: 21861901
  4. Radaideh AM. Precocious puberty with congenital hypothyroidism. Neuro Endocrinol Lett. 2005 Jun;26(3):253-6.
  5. Longscope, C.  1991. The male and female reproductive systems in hypothyroidism. In Werner & Ingbar’s The Thyroid A Fundamental and Clinical Text. 6th edit. L. E. Braver- man & R. D.  Utiger, Eds.:  1052-1055.  Lippincott. New York.
  6. Thomas, R&R et al. Thyroid disease and reproductive dysfunction: A review. 1987. Obstet. Gynecol. 70: 789-798. PMID: 3309753
  7. Poppe K. Thyroid disease and female reproduction. Clin Endocrinol (Oxf). 2007 Mar;66(3):309-21. PMID: 17302862
  8. Janssen OE. High prevalence of autoimmune thyroiditis in patients with polycystic ovary syndrome. Eur J Endocrinol. 2004 Mar;150(3):363-9. PMID: 15012623
  9. AACE Medical Guidelines for Clinical Practice for the Evaluation and Treatment of Hyperthyroidism and Hypothyroidism, Endocrine Practice, Vol. 8, No. 6, Nov/Dec 2002.
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