Blog of the Society for Menstrual Cycle Research

We all must learn about endometriosis because ignorance breeds insensitivity

March 26th, 2016 by Editor

“What I heard shocked me. How was such a thing possible? How had this happened to a friend without my awareness?”

Guest Post by Suzan Hutchinson

SMCR#2013NYC

It is estimated that one in 10 teens and women worldwide are living with endometriosis. They are our friends, our relatives, ourselves.

The first time I heard the word “endometriosis,” I was at a loss as to what it was and stunned that I’d never heard of it before.

I was 20, enjoying dinner, when someone asked, “Have you heard about Pat*? She was diagnosed with endometriosis and the doctor said the only cure is a hysterectomy.”

“What’s endometriosis?” I asked.

Endometriosis was described to me that day as a situation in which the lining of the uterus transplants itself outside of the uterus to the lining of the abdominal cavity and to other organs. And, that when the lining of the uterus bleeds, the transplanted uterine lining bleeds, too–into the abdominal cavity–causing bloating and intense pain, some of which never goes away, and creating scar tissue that causes all sorts of ugly issues deep inside the body. This was not a totally accurate or complete explanation of the disease as I now know; endometriosis is indeed a complex disease.

What I heard shocked me. How was such a thing possible? How had this happened to a friend without my awareness?

I thought of what I knew of Pat. I had no idea she had been suffering physically, and certainly not period wise.

My questions received few answers. Speculation, lack of facts, incorrect information…these all muddied the water for me, so I said I would go to Pat for answers. This received a resounding “NO!” What I intended went beyond bounds, overstepped and intruded on what should remain private and personal. I argued that she might like to be heard, to be understood, to let others know about endometriosis.

“Don’t say anything to her about this. She’s embarrassed and doesn’t want a lot of people knowing.”

Embarrassed.

As I sat listening to the conversation, I wished to have been with her when she talked with the doctor…wished for more information about this thing called endometriosis and wondered where I could obtain it. This was before personal computers and the internet. My only option was to head for the library. The meager offerings provided me little more than what the dinner discussion had.

Pregnancy could halt it and relieve some of the symptoms for some women…temporarily (I could hardly call that a solution). Hormones to halt menstruation were an option, but for women with scar tissue, it offered no relief to the daily and constant pain they endured–it just kept it from bleeding more and creating more pain and problems. And, hormones/pain meds don’t come without risks.

I never did talk with my friend about her diagnosis, or the hysterectomy, or her life following. Protocol of the day dictated I couldn’t approach her with questions unless she approached me first. And, she wouldn’t and didn’t.

Fast forward to 2016.

The world hasn’t changed all that much in all the years that have passed since that Sunday dinner. We still aren’t comfortable speaking freely about matters that concern us. Endometriosis remains an obscure topic for most. We still don’t know what causes it or what to do to prevent it, but we know a lot more about how best to help those who suffer from it. It’s a unique experience for each woman who has it. Many who suffer with endometriosis are invisible and often undiagnosed. We still don’t see it or believe it exists because so many who have it look just like we do. We have a hard time believing in what we can’t see and talking about what we are not comfortable with.

As was stated at the Sunday dinner table so many years ago, so it is often today—how can it be that bad? She worked and carried on just like normal–she didn’t seem to have anything wrong with her. I think it’s all in her head and she should just get over it.  After all, we all have a little period pain at times.

Ignorance breeds insensitivity.

Endometriosis—it may not be what you think. Get the facts.

(* Pat is a name chosen to represent my friend who suffered silently and alone with endometriosis for many years.)

Suzan Hutchinson, a menstrual educator, coach and activist, is the founder of Period Wise. She works for Lunette and has held multiple volunteer roles with the Toxic Shock Syndrome Awareness non-profit organization You ARE Loved. Follow Suzan on Twitter @periodwise and like PeriodWise on Facebook.

An holistic approach to managing endometriosis

March 24th, 2016 by Editor

What I learned about endometriosis that helped me manage my condition

Guest Post by Melissa Turner

Christmas berriesI remember the day I was diagnosed with Stage 4 endometriosis. I was sitting in the doctor’s office, looking at my gynecologist and heard only words of limitation and endless struggling. The words of “there is no cure” and “there is nothing else I can offer you,” seemed to scream at me through everything else he was saying. To say that I felt helpless is an understatement. I felt lost, alone and incredibly deserted. It didn’t seem like there were any solutions to treat my daily pain and the countless symptoms, which I experienced with having endometriosis.

Years later, at the age of forty, I see the world through a different lens and I see my endometriosis as an incredible teacher. To me, it is about discovering more about my body and what ultimately may have contributed to it’s imbalances.

Over the last five years, I discovered many connections and correlations with having endometriosis, which I believe could greatly assist women with the condition. With knowledge gained through my training in natural medicine, research and personal experimentation, along with working with women from around the world, I developed an approach which I call the REACH Technique©. It is an approach where we take different elements and combine them to provide the perfect environment for the body. The approach is completely holistic and addresses three key aspects of endometriosis symptoms including lowered immune function, inflammation and hormone imbalance.

The REACH Technique© looks at the following steps:

Stage 1: Replenish

There are common mineral and vitamin deficiencies which have been noted for women with endometriosis. These may be contributing to the additional symptoms so many women with endometriosis experience. Within this step, we therefore look at how to truly replenish the body with all the right nutrition.

Stage 2: Exercise

We know through countless studies that exercise is incredibly beneficial for our health. Women with endometriosis do however experience pain with exercise due to their adhesions. We advise forms of exercise which focuses more on deep breathing, connecting with the body and building core muscle strength such as yoga.

Stage 3: Affirm

Stress is a big contributor to poor health and can exacerbate endometriosis symptoms for many women. We provide tools to guide women on how to release painful emotions from their body, which may be adding to the stress response they experience within the body.

Stage 4: Cleanse

Endometriosis has been described as a condition with elevated estrogen levels, which in part could be contributed to by environmental toxins. For example, dioxin was shown to be associated with the development of endometriosis in a scientific study in monkeys. (Rier, 1999)

Included at every stage: Help

Women with endometriosis feel incredibly isolated and alone. This is a condition which is seldom spoken about and as it involves our menstrual cycle, it tends to be something we keep to ourselves or very private. We provide a safe space for women to speak openly and get the support they need.

I believe that we should provide for the body, rather than trying to fix the body. By giving our body plenty of nourishment, exercise, releasing emotions, cleansing and avoiding toxins, along with the support and help we need, it is inevitable that the body will begin to feel better.

I now live completely pain and symptom free and I want more women to know that they too can achieve a normal and happy life, even with having endometriosis. I believe that for many women this condition can be managed successfully when we approach the body holistically.

Melissa Turner, after enduring more than 15 years of pain and symptoms,  finally discovered an approach which has allowed her to successfully manage her endometriosis. She shares her acquired knowledge with women living with the disease who are keen to try a holistic approach. Melissa, who lives in New Zealand, is currently completing a five-year degree in Natural Medicine. You can find out more about her and her work at www.endoempowered.com

Readers should note that the information presented in this post is for information purposes only and should not be construed as medical advice or directive.

Three facts about endometriosis: Lupron, surgery and adjunct treatments

March 23rd, 2016 by Editor
Weaving A Red Web by Giuliana Serena

Weaving A Red Web by Giuliana Serena

“…there are fewer than 100 surgeons in North America who have been identified as doing effective surgery for endometriosis.”

Guest Post by Philippa Bridge-Cook, PhD

Endometriosis has had more press attention in the last several weeks than it has had in years, thanks to Girls writer/producer/actress Lena Dunham’s announcement that she was not going to be doing press for the new season of her hit television show due to her endometriosis symptoms. Whether or not this is a good thing for endometriosis can be debated, since many of the articles that ensued following her announcement have contained a lot of misinformation about the disease, which can perpetuate many of the problems that women with endometriosis face. However, that is a topic for another article, and several excellent articles have already been written discussing the misconceptions currently being circulated by the media.

With all the misinformation circulating, in this article I would like to offer my Top Three Important Facts about Endometriosis that come to mind when I read the articles about Lena Dunham. These facts are important for both patients and for the general public to understand.

1.    Lupron:

There is currently no drug therapy that cures endometriosis. Lupron in particular has significant limitations in its use as a treatment for endometriosis, and it is not recommended as a first-line treatment by any national or international guidelines on the management of endometriosis. Lupron is notorious for having a whole host of side effects, some serious, and some can even persevere permanently after the treatment course is finished. Some women feel that they incurred serious harm from taking this drug. In addition, although it may suppress symptoms during treatment, endometriosis symptoms usually recur after treatment. Lupron is only recommended by the manufacturer for 6 or 12 months over a lifetime, and the long term safety data for greater than 12 months of use are very sparse.

2.    Surgery:

Expert laparoscopic excision surgery is an excellent option that offers many women the best chance at long-term relief from endometriosis symptoms. Excision surgery cuts out all of the endometriosis at its root, and is associated with a much lower recurrence rate than other methods of surgery such as ablation. However, there are fewer than 100 surgeons in North America who have been identified as doing effective surgery for endometriosis. Therefore, it is important for women to seek out the best surgical expertise they can, since effective pain relief depends upon effective surgery.

3.    Adjunct Treatments:

For many women, a multidisciplinary approach is required in order to get full relief from symptoms. Endometriosis is associated with a higher risk of having other diseases that can cause pain and other symptoms in the pelvis, such as adenomyosis, interstitial cystitis, vulvodynia, dyspareuniainflammatory bowel disease, and pelvic floor dysfunction. These diseases need to be diagnosed and treated by the appropriate medical professionals.

More and more, women are speaking up about their experiences with endometriosis. In many ways this is excellent, as this disease that affects one in ten women has been in the shadows for far too long. However, we all share a responsibility to communicate accurate information about the disease, as there is no other way to move forward and improve the lives of women with endometriosis.

Philippa Bridge-Cook is a scientist and writer currently working as the interim Executive Director of The Endometriosis Network Canada, a non-profit organization whose mission is to provide education, awareness, support, and hope to people affected by endometriosis. Philippa has previously worked in molecular diagnostics at Luminex in Toronto, Canada, and as a consultant for Scientific Insights Consulting Group, in many different areas of medicine including pharmacogenetics, diagnostics, cancer, infectious disease, and endocrinology. Philippa’s academic experience includes a PhD in Medical Genetics and Microbiology from the University of Toronto.

#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.’”

 

Readers should note that statements published in re: Cycling are those of individual authors and do not necessarily reflect the positions of the Society as a whole.