Blog of the Society for Menstrual Cycle Research

Writing Menopause, An Anthology: Preview #2

April 28th, 2016 by Editor

WritingMenopauseWriting Menopause, a diverse literary collection about menopause to be published in the spring of 2017 by Inanna Publicationswas first introduced to the Society for Menstrual Cycle Research in a session presented at our June 2015 biennial conference in Boston. The anthology includes about fifty works of fiction, creative nonfiction, poetry, interviews, and cross-genre pieces from contributors across Canada and the United States. With this collection, editors Jane Cawthorne and E.D. Morin hope to shine a light on a wide variety of menopause experiences and to shatter common stereotypes. This week at re: Cycling we are pleased to be able to preview excerpts from the collection. Preview #1 included a short prose piece and a poem by Tanya Coovadia. Today’s preview is by SMCR member Heather Dillaway, a piece that was previously published on this blog.


Fact and Fiction: Two Lists by Heather Dillaway

List One: Things Menopausal Women Would Love to Hear That ARE True

  1. what do i want to hear?It’s okay to be glad to be done with menstruation, the threat of pregnancy and the burdens of contraception. It’s also okay to use the menopausal transition to question whether you really wanted kids, whether you had the number of kids you wanted and whether you’ve been satisfied with your reproductive life in general. It’s normal to have all of these thoughts and feelings.
  2. You’re entering the best, most free part of your life! But, it’s okay if it doesn’t feel like that yet.
  3. Menopause does not mean you are old. In fact, potentially you are only half way through your life.
  4. You are not alone. Lots of people have the experiences you do. You are normal!
  5. I understand what you’re going through. (Or, alternatively, I don’t completely understand what you’re going through but I’m willing to listen.)
  6. It’s okay to be confused and frustrated at this time of life, or in any other time of life!
  7. You’ve had an entire lifetime of reproductive experiences and this is simply one more. How you feel about menopause is probably related to how you’ve felt about other reproductive experiences over time. It might be helpful to reflect back on all of the reproductive experiences you’ve had to sort out how you feel about menopause.
  8. Talk to other women you know. Talking about menopause helps everybody.
  9. Menopause and midlife can be as significant or insignificant as you’d like them to be. For some women, these transitions mean very important things but, for others, they mean little. Whatever it means to you is okay.
  10. Researchers are working hard to understand this reproductive transition more fully.

These represent the kind of supportive comments women might want to hear while going through menopause and, in particular, perimenopause. Items on this list also help us acknowledge that our bodies and bodily transitions cause us to reflect on our life stages, our identities and our choices.

List Two: Things Menopausal Women Would Love to Hear But Might NOT Be True

  1. This is guaranteed to be your last menstrual period. You are done! (Or, a related one: You’ve already had the worst. It gets better from here on out!)
  2. Signs and symptoms of menopause will be predictable and will not interrupt your life.
  3. No one will think negatively of you or differently about you if you tell them you’re menopausal.
  4. There are no major side effects to hormone therapies or any other medical treatments you might be considering.
  5. Doctors will be able to help you and will understand your signs and symptoms, if you need relief.
  6. Leaky bodies are no problem! No one will care if your body does what it wants, whenever it wants.
  7. Partners, children, coworkers and others will completely understand what you’re going through.
  8. Middle-aged women are respected in this society and it is truly a benefit to be at this life stage.
  9. There is a clear beginning and a clear end to this transition.
  10. Clinical researchers are researching the parts of menopause that you care about.

This reflects many of our societal norms and biases about our bodies, aging, gender, fertility and so on. This list also attests to the difficulties that menopausal women have in accessing quality health care or getting safe relief from symptoms when needed and notes the potential disconnects between research findings and women’s true needs during this transition.

Heather Dillaway is an associate professor of sociology at Wayne State University in Detroit, Michigan. Her research focuses on women’s menopause and midlife, and she often writes about the everyday experiences of going through these transitions. She teaches about women’s health, families and gender & race inequalities.

Writing Menopause, An Anthology: Preview #1

April 26th, 2016 by Editor

WritingMenopauseWriting Menopause, a diverse literary collection about menopause to be published in the spring of 2017 by Inanna Publicationswas first introduced to the Society for Menstrual Cycle Research in a session presented at our June 2015 biennial conference in Boston. The anthology includes about fifty works of fiction, creative nonfiction, poetry, interviews, and cross-genre pieces from contributors across Canada and the United States. With this collection, editors Jane Cawthorne and E.D. Morin hope to shine a light on a wide variety of menopause experiences and to shatter common stereotypes. This week at re: Cycling we are pleased to be able to preview excerpts from the collection.


Two pieces by Tanya Coovadia:

The Things We Carry

Last January, I attended a reading series during which two distinguished male authors, in separate opening remarks, said derogatory things about middle-aged women. I don’t think I would have noticed twenty years ago, but lately, for some reason, I am particularly attuned to discussions regarding women of my uncertain age, especially when they are uttered in tones suggestive of a shameful affliction.

Benign anal tumours, say.

One of these men, after his reading, went on to add further insult. He described the typical bumbling misapprehension of his work by that admiring but clueless fan who, he assured us, in his laconic drawl, was “always a middle-aged woman.” As a late-blooming member of the midlife sisterhood, this incident sparked a poem in me.

And (in a laconic drawl) it’s dedicated to Tim O’Brien.

Always a Middle-Aged Woman

(because middle-aged men are just men)

Striding up
with her staunchly held head
her opinions bared like wrinkled breasts

And those years she wears
a bitter glory of furrows and lines
etched by thousands of erstwhile smiles.

Who do they think they are,
these ladies (and we mean you, ma’am)
thriving so steadily
from their cloak of invisibility

We don’t see your once young face
we never stroked your once shining hair

We can’t hear your
sweet, barely caught breath
because you’re
Blatantly!
middle-aged

As though ageing is some kind of victory
as though youth and beauty
are not mandatory

As though you can bring
something new to the world
when your womb is too old to care.

My mirror,
I,
we,
you
reflect this, true

We lift our jowls toward our ears
and smile
a spasm, a rictus. Of youth.

Tanya Coovadia is a technical writer, blogger and angry-letter-writer-cum-fictionalist who occasionally dabbles in poetry. She’s a Canadian transplant to Florida who, during the writing of this poem, realized her interminable hot flashes were not weather-related after all. Ms. Coovadia has an MFA in Creative Writing from Pine Manor College in Boston. Her first collection of short fiction, Pelee Island Stories, recently won an IPPY award.

#MenstruationMatters to Newsweek

April 21st, 2016 by Laura Wershler

The menstrual advocacy movement splashes red all over the cover of Newsweek’s upcoming April 29, 2016 edition. The story by Abigail Jones–The Fight to End Period Shaming is Going Mainstream–published online April 20, 2016, continues the mad rush of period stories that prompted Cosmopolitan to declare 2015 the “year the period went public.” Chris Bobel, President of the Society for Menstrual Research, is quoted briefly in the Newsweek piece. For Chris’s cogent analysis of the recent spate of period positivity check out her Nov. 15, 2015 re: Cycling post:  Will this 2015 menstrual moment make room for all bodies?

Newsweek Cover_Apr-2016

When breast cancer treatment leads to early menopause

April 14th, 2016 by Editor

In the same month I went from menstrual cramps to hot flashes overnight.

By Sheryl E. Mendlinger, PhD

Sheryl Mendlinger cut her hair short before undergoing treatment for breast cancer in 1994.

Sheryl Mendlinger cut her hair short before undergoing treatment for breast cancer in 1994.

In 1994, at the age of 43, I was diagnosed with stage 1 invasive breast cancer. At that time, treatment options were very limited, it was more a “one size fits all,” unlike the targeted therapies available now 20 years later. Taking into account the size of the lump—1.5 centimeters; my age—young enough that I was still pre-menopausal; and lymph nodes that all tested negative, my oncologist recommended I undergo a lumpectomy, a procedure that removed the lump and the surrounding breast tissue, followed by adjunctive chemotherapy and six weeks of daily radiation treatment. I became a statistic; although chemo was not a necessity, I was told that it would increase my chances of long term survival. I had been married to the love of my life for almost 22 years and had two teenage children, a son, 19, and my daughter Yael, 17. When I heard my diagnosis, I welcomed all options on the table, even the most extreme, as an answer to the frightening diagnosis of cancer, with hopes for a long life to see my own children grow into adulthood.

The doctor informed me only about some of the side effects of chemotherapy including: nausea, loss of appetite, hair loss and the possibility that my period might cease during treatment. However, no one addressed the fact that I would most likely go into overnight early onset menopause, which meant that not only would my ovaries stop working and vaginal dryness would set in, but my brain and cognitive abilities would experience a major shut down as well. One day I was bleeding and puking my guts up from the chemo, while days later I started to wake up in the middle of the night, in a pool of sweat, sheets kicked off the bed and I soon realized they were hot flashes. Menopause had arrived in full force.

At the end of her treatment she had short white hair and a full face.

At the end of treatment she had short, thin, white hair and a full face.

Whether from the chemo treatments or menopause, I started to gain a lot of weight and most of the clothes that hung in my closet no longer fit properly. As I wrote in my book Schlopping: Developing Relationships, Self-Image and Memories

“I ballooned from a size 8-10 to a 12-14. The additional fifteen to twenty pounds on my short frame and the new menopausal body made me feel extremely self-conscious, and the only way to continue to look good and feel better was to hide the bulges under baggy clothes, oversized blouses, or sweaters and leggings. The only pants that fit over my rounded belly were those with stretch elastic waist like old ladies wore….I dealt with the extra weight by buying clothes that fit my new changing body. I just accepted the changes that were taking place because it was a sign of me getting well….I felt the additional weight was good for me…and that my body was overcoming the illness… At the end of the treatments, I had very short, thin, white hair and a very puffy, fat, and full face…”

I remember approaching my oncologist very early in my chemo treatments and telling him that I felt my brain was fuzzy and that the connectors didn’t seem to be connecting; it was as if the entire “hard drive” in my brain had crashed and all the information was deleted. At that time, in the 1990s, doctors were convinced that “chemo does not pass the brain membrane.” To say the least, it was a strange, frightening, and terrible experience. I began to forget sentences in mid-thought in addition to having a lot of other medical problems. This memory loss happened at the onset of chemo, even when I was still getting my period. Once my period ceased, near the end of treatment, my cognitive abilities seemed to take a turn for the worse.

Several years after my treatments, in 2000, when I saw one of the first papers on “cognitive function and chemotherapy” in which the word “chemo-brain” was used, I felt a sense of relief that I was not the only person to have experienced this. Although this concept has finally been accepted in the medical world, and scientific research is being conducted in the area, there are still questions as to what causes the cognitive decline. Is it the inflammation from the cancer itself, is it the chemo, is it changes in thyroid functioning or B12, or is it the sudden loss of estrogen with the early onset of menopause? When speaking to young women who have undergone hysterectomies, they too complained of many of the same issues of cognitive decline.

Early onset menopause can affect so many aspects of overall health and the quality of life. More research, knowledge and information will better equip young women in coping with their changing bodies and understanding that it’s not “only in their heads.”

Sheryl E. Mendlinger, PhD, is an author, advocate for women’s health, daughter, wife, mother, and grandmother. She co-authored, with her daughter Yael Magen, “Schlopping (schlep+love+shopping): Developing Relationships, Self-Image and Memories” a book about finding answers to life’s challenges through schlepping with a loved one while shopping. Sheryl’s expertise is inter-generational transmission of knowledge and health behaviors in mother-daughter dyads from multicultural populations with a focus on menstruation.  

Premenopause / Early Menopause / Primary Ovarian Insufficiency (or Failure) / Perimenopause / Menopause / Postmenopause: Why these names matter

April 5th, 2016 by Editor

Making sense of the many names for women’s reproductive aging by Dr. Jerilynn C. Prior

Jerilynn C. Prior BA, MD, FRCPC, ABIM, ABEM is a Professor of Endocrinology and Metabolism at the University of British Columbia in Vancouver, B.C. She is the founder (2002) and Scientific Director of the Centre for Menstrual Cycle and Ovulation Research(CeMCOR).

The process of aging of women’s reproductive system, like puberty and most biological transitions, occurs in a generally standardized but variable way and over many years. Also, there are broad age ranges at which we consider something normal or not. Then add on top of that cultural presuppositions, chief among them that “menopause means estrogen deficiency” (rather than that menopausal estrogen and progesterone levels are normally low), and we have real confusion and a situation that is not helpful1 for women or for their communication with health care providers.

I will do my best to describe some of these standardized ways that women’s physiology changes during reproductive aging. I will mention the current terms and the words that have some physiological relevance and should be used. Because I am a physician, I believe that understanding of “the story” of life phases and the “why” of experiences is helpful. It is also necessary to appreciate the whole woman in her social, cultural, physical and experiential environments markedly influence her experiences.

After extensive research to understand mine and my patient’s puzzling midlife experiences, I learned that the ovaries start to make less Inhibin (really Inhibin B) while cycles are still regular2;3. Inhibin is small hormone made in the follicular cells surrounding stored eggs; its job is to control levels of follicle stimulating hormone (FSH). Because FSH stimulates follicles to grow, Inhibin is necessary to limit the number of stimulated follicles and to prevent us having litters. As shown (Figure below), by very early perimenopause there are fewer remaining ovarian follicles (B), Inhibin is decreased and this allows higher FSH levels and more stimulated follicles. Since each recruited follicle makes some estrogen, levels rise and the higher estrogen levels are also not reliably able to control FSH3.

menopauseDiagram

Legend: The ovaries are shown as a stylized oval with follicles in various degrees of maturation. A. shows what is occurring in the follicular phase of a premenopausal ovary; B. illustrates the normal changes that occur in perimenopause. Reprinted from Prior Endocrine Reviews 1990

The same normal reproductive aging pattern of lower Inhibin, higher FSH and estrogen occurs when the ovary is injured; this can be by chemotherapy or radiotherapy for cancer, partial removal, more rapidly than normal after hysterectomy or tubal ligation/removal and in those with immune or genetic problems. The chaos of women’s reproductive aging occurs for these Inhibin-related reasons but also because the hypothalamic-pituitary ovarian feedbacks are disrupted (so a normal midcycle estrogen peak may not trigger the luteinizing hormone (LH) peak or the LH peak may not stimulate ovulation4). An FSH level, even one that is taken on cycle day 3, is not diagnostic of perimenopause. That estrogen levels average 20% higher in perimenopausal than in premenopausal women 3, I learned from a systematic review of studies within each of several centres; but symptomatic women may have double or triple normal cycle phase-specific levels that create the “perimenopausal ovarian hyperstimulation syndrome” because this situation resembles an adverse effect that may occur in IVF 3.

With this understanding we can define the three terms for normal reproductive life phases, the term used for perimenopause or menopause that comes too early and also identify some inappropriate labels.

Premenopause is the entire time (usually 30-40 years) from the first menstruation (menarche) until the changes of perimenopause start.

Perimenopause begins when cycles are still regular (called very early perimenopause and this phase lasts 2-5 years) but an observant woman notices typical experience changes5. Because the current official classification of reproductive aging begins with irregular cycles6, no one knows at what age on average this may start; likely it is normal from as young as age 35. At least three of nine typical experience changes, especially the start of night sweats, sleep problems or heavy flow, can be used to determine that you have begun this phase5. Additional potential perimenopause changes are: increased cramps, increased premenstrual physical and emotional unwanted experiences, shorter cycles (usually ≤25 days), increased or new breast tenderness, increased or new migraines and weight gain without important changes in exercise or food intake7. Perimenopause’s early menopausal transition starts when cycles become irregular and lasts a year or so; the late menopause transition begins with the first skipped cycle (60 days without flow) and late perimenopause is the year after the last flow.

Menopause is the life phase that lasts from a year after the final flow for the rest of women’s lives. It is normal for both estrogen and progesterone levels to be low. Hot flushes/flashes and night sweats may continue for many years but heavy flow, cramps, breast tenderness, premenstrual-type symptoms and severe migraine are usually gone.  (The term “postmenopause” is sometimes used interchangeably with menopause but is double-speak and refers to an erroneous use of the word “menopause” to mean the literal final menstrual flow).

“Endo What?” documentary sets the record straight about endometriosis

March 31st, 2016 by Laura Wershler

Endo what screen shotThe facts are eye-opening, the experts are compelling, but it is the voices of women talking about their lived experience with endometriosis that have the biggest impact in Endo What?, the documentary about the disease that premiered in New York City on March 16, 2016, during #EndometriosisAwarenessMonth.

In one early scene, woman after woman states the number of years it took for their endometriosis to be diagnosed: 18 years, 20 plus years, more than 15, 22 plus, 13, 6, 13, 12, 10 years, years during which many were told their intense pain was normal, or it was in their heads, or they needed to see a psychiatrist, or they were drug-seeking, or worse.

One later describes her pain: “It just feels like someone is taking a roller and rolling up my insides, and it’s tighter and tighter, and then rubbing barbed wire through it.”

The pain caused by endometriosis is NOT normal.

The film’s director and co-producer Shannon Cohn experienced symptoms at 16 and was finally diagnosed at 29. She, too, was told her debilitating pain was normal. In a recent Newsweek article she said, “Millions of other women are basically told the same thing.”

If it takes on average 8 to 10 years from the onset of symptoms to be diagnosed with endometriosis, getting a diagnosis is no guarantee you will receive appropriate or effective medical care.The film makes clear how few real endometriosis experts there are, and how much unhelpful care and how many ineffective, even damaging, treatments are provided by medical professionals who don’t know the facts or still believe the myths about endometriosis.

Contrary to what you may have heard, very young women DO get endo (symptoms can start before the onset of menstruation), it is NOT a career women’s disease, pregnancy is NOT a cure, and hysterectomy—definitely—is NOT a cure.

Endometriosis is also a disease of associated conditions including irritable bowel syndrome, interstitial cystitis, pelvic floor muscular dysfunction, thyroid problems and chronic fatigue—all of which can complicate diagnosis and treatment.

As for treatment options, hormonal manipulation with birth control pills may manage symptoms for awhile but in no way treats the disease. Stronger drugs like Lupron and other GnRH agonists offer few benefits and many negative side effects, some of which may be permanent.

As Deborah Metzger, MD, PhD, puts it,

“The way we practice medicine is not conducive for what women with endometriosis need…It’s a chronic systemic issue and it needs solutions that are long-term….and using hormones and all those other things, those are Band-Aids.”

The best long-term treatment for endometriosis is surgery, but one of the most startling messages of the film is how few surgeons have the skill to perform laparoscopic excision surgery, considered the gold standard by experts. As one endo surgeon says, “It cannot be done by regular gynecologists as a routine surgery.” To be effective all lesions must be completely excised. Most surgeons use a laser to burn the surface of endometriosis, rather than cut it out, leading to continued pain and repeat surgeries. What endometriosis sufferers need, a voice in the film tells us, is “One surgery, done right.”

Endo What? also explores the connection between infertility and endometriosis—distortion of the reproductive tract by endometrial lesions and inflammation are key factors. Excision surgery can greatly improve the chance of conceiving.

The second half of the film focuses on what women can do post-surgery to restore their health and well-being. Physical therapy to relieve pelvic floor pain, nutritional counselling to restore digestive health and reduce inflammation, exercise, stress reduction strategies, and reducing exposure to environmental toxins and everyday chemicals can help aid recovery to health. A key message is that the disease is individual; what works for some may not work for others.

If the film’s goal is to make people care about endometriosis, it does this effectively by making the viewer care about the women who live with this disease. Be we friends, parents, family members or health-care providers of women with endometriosis, the onus is on all of us to learn the facts about a disease that affects one in 10, and an estimated 176 million worldwide. Medical students should not graduate until they’ve watched this documentary.

The film ends on a hopeful note. ‘There is life after endometriosis.” But to get there, women must be their own best advocates.

“Don’t accept what one or two or 10 doctors tell you is normal when you know that something is wrong,” one interview subject tells us. “Keep pushing until you find the right provider, they are out there.”

Let’s hope, as a result of this film, there will be more of them soon.

Endo What? will be available widely online on April 15th in the US and UK via digital download and DVDs. Watch the trailer here.

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

NOTE: March 31, 2016, is Transgender Day of Visibility. The film Endo What? does not address the unique concerns trans people may have with endometriosis. “Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health,” published by Hormones Matter, Jan. 22, 2014, provides a trans perspective on this disease.

My endometriosis story has a happy ending

March 29th, 2016 by Editor

Guest Post by Yael Magen, Esq.

When I was diagnosed with endometriosis it wasn’t the excruciating pain that bothered me or even my internal organs that were deteriorating, but rather, my biggest fear was that I would not get pregnant.

Yael Magen with her mother and co-author Sheryl Mendlinger.

Yael Magen (back) with her mother and co-author Sheryl Mendlinger.

I was always a career-oriented person, was the first and youngest woman to be a mayoral candidate in my hometown, worked for government and non-profit organizations in international law and employment, and always wanted to be a mom.

When I was a teenager and started to get my period, I was a little different than my peers. My flow was very heavy and my periods lasted for five to eight days. I had severe cramps that sometimes debilitated me to the point I couldn’t go to ballet class or couldn’t stand up straight. I had no idea that something was wrong with me or that that was not the norm. My mom told me what her mom told her, once you have a baby it will get better; she didn’t know better either.

When I started having sexual intercourse it often included pain and burning sensations. My ObGyn at the time told me I probably didn’t love my boyfriend or wasn’t attracted to him. Imagine me, a young woman madly in love with my boyfriend, told by my doctor that my pain is in my head and caused by my lack of feelings for my partner.

Several years went by and I was on a birth control pill when my periods took a 180 turn. The period still lasted for more than six days, but the flow was extremely mild, the blood was very brown and often came out as clots, and it had what I call “the smell of death.” When I had my period it was as if dead blood was coming out of my body.

The worst thing with endometriosis is that often it takes decades to be diagnosed. I was walking around with this disease for more than fifteen years without even knowing it. In 2006 I started to have severe back pains to the point that I couldn’t even walk down the street for more than five minutes without stopping. I was vomiting constantly and lost so much weight that my body was like a skeleton, only skin and bones, where even a size zero fell off my body. As I wrote in my book “Schlopping: Developing Relationships, Self-Image and Memories” losing weight is sometimes bad and a sign of an illness, and gaining weight is sometimes good and a sign of health. I did not know that the endo and its scar tissue that was left in my body was harming many internal organs including my left kidney, which was blocked by the tissue and started to diminish in its functionality, to the point that I almost lost my kidney.

Finally, in October 2006, I was diagnosed and went in for a routine laparoscopy to have the endometriosis lesions and scar tissue removed from my body. However, my condition was so severe that it was diagnosed as stage four endometriosis, and was the worst case a specialist in Boston had ever seen. Thus, the surgeon could not go through my belly button as is done in a laparoscopy procedure, but rather he needed to perform full abdominal surgery. When I awoke from the surgery I was told for the first time that I had fertility problems and that getting pregnant would be difficult or even impossible.

The endometriosis caused severe damage to my kidney, bladder and ureter, and as a result for the next nine months I lived with tubes inside and outside my body and underwent several medical procedures and surgeries. The following couple of years, coping with the illness as well as trying to get pregnant, were emotionally and physically draining. I hated my painful periods because it meant I was getting sicker and I hated my periods even more because it meant I wasn’t pregnant.

My husband and I worked very hard to get pregnant and every resource, wish or prayer was consumed with achieving pregnancy. If I saw a falling star that was my wish; if I lit candles on a Friday night that was my prayer; when I blew out my birthday candles I begged for a baby. And at the end of 2008 I was the luckiest woman in the world when against all odds I got pregnant. I loved being pregnant and loved gaining weight as every pound was a sign of a healthy baby and a healthy body. The doctors say that pregnancy is good for endometriosis as one does not get her period. My pregnancy was so good for me that it also ripped apart much of the scar tissue that was in my body. I remember vividly, as my belly was getting bigger, having this feeling of something breaking and tearing in my back. My doctor told me that as the uterus expands the scar tissue rips. For me, pregnancy offered a respite from my symptoms.

The biggest problem with endo, is that it is a chronic disease. And so after pregnancy and breastfeeding once my period started again the endo came back: the back pains, the enormous cramps, the kidney infections and the smell of death. All I could do was deal with it the best I could. After all the suffering I had due to endometriosis, in 2011 we were blessed again with a healthy baby girl.

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.

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.