Blog of the Society for Menstrual Cycle Research

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.

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, 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.

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.

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.

Menstrual Health Education: How and why to make it better

January 28th, 2016 by Editor

Peggy Stubbs and Evelina Sterling advocate for comprehensive menstrual education

For nearly forty years, the Society for Menstrual Cycle Research (SMCR) has been promoting the perspective that the menstrual cycle is central to girls’ and women’s overall health. But this connection seems to be nearly invisible to the public, and even in the public health arena. A recent informal, but telling, series of Internet searches reveals that many agencies provide minimal or no information about the menstrual cycle. This information deficit was discussed at SMCR’s June 2015 conference in a session offered by Evelina Sterling, Heather Guidone, Diana Karczmarczka and Peggy Stubbs.  For example, the menstrual cycle is not listed in the Healthy People Goals, and so is not seen as a priority by groups such as the CDC. Instead, the prevailing attitude seems to be that other public health issues are more important and that, beyond basic biology and management, girls and women (and boys and men) don’t need to know much more about the menstrual cycle. Menstruation, from menarche to menopause, is not presented as an integral component of women’s health. Menstruation is not associated with long-term health and wellness, nor is it considered as relevant to the experience of specific illnesses, disabilities or mental health conditions.

Menstrual product companies fill a public health gap by providing menstrual education materials to schools.

Menstrual product companies fill a public health gap by providing menstrual education materials to schools.

The public health gap in menstrual education has been filled by menstrual product manufacturers whose materials are used in many schools and whose online presence is influencing what girls first learn about menstruation. While menstrual management is of great importance, and while we applaud recent efforts by some product manufacturers (e.g., Kotex) to address and try to reduce menstruation stigma, so much more could and should be done to help girls and women learn about how the cycle serves as a “vital sign” of health, as opposed to what too many consider a normative but inconvenient at best, debilitating biological necessity.

We think a coalition of biomedical public health and psychosocial researchers promoting menstruation as a vital sign, and countering one of today’s most facile conceptions of menstruation—that it is a lifestyle choice—can do much better.

While we appreciate there are many public health issues relevant to girls’ and women’s health, we believe it is time for menstruation to take center stage, to be more broadly considered in relation to women’s lives and well-being. SMCR researchers and others have long promoted a comprehensive, lifespan approach to menstrual education, one that is both broad and deep, and features the interconnection of its biological and psychosocial aspects. This means addressing the connections between our biology and what we (both as individuals and as a culture) think about it and do about it.

This means moving beyond a nuts and bolts approach to menstruation, whatever the age group, not forgetting to include boys and men in our efforts. This means that all educators—family members, teachers, public health workers, product manufacturers, health care providers and the like—should strive to learn about and convey how the cycle influences well-being. This means consulting not only the latest biomedical research but also the treasure trove of social science research on the topic. Educators can begin with the American College of Obstetricians and Gynecologists (ACOG) 2015 paper (1) on using the menstrual cycle as a vital sign in the education of young girls and adolescents. AGOC researchers have also provided guidelines for health-care providers about how to take a menstruation history and how to help parents convey information about menstruation to daughters (See Hilliard, 2014) (2). In addition, educators should study the many papers and presentations by SMCR researchers and other scholars to learn how psychosocial aspects of the cycle can impact such things as self-image and sexual-decision making. (e.g., Stubbs, 2008; Erchull, 2002, 2015; Johnston-Robledo, Stubbs & Walch, 2013) (3).

Our challenge is to make collective and collaborative use of this material, thereby helping the public to think about menstruation—from menarche to menopause—as a window into well-being instead of an experience simply to put up with. Providing full disclosure about the cycle, weaving its complexities into education programs without overcomplicating or unnecessarily alarming audiences, will require ongoing work. But knowledge is power and girls and women deserve nothing less.

1. Committee Opinion No. 651. (2015).  Menstruation in girls and adolescents: using the menstrual cycle as a vital sign. Obstetrics and Gynecology,  126:e, 143-146.

2. Hilliard, P.J.A. (2014).  Menstruation in Adolescents: What Do We Know? and What Do We Do with the Information? Journal of Pediatric and Adolescent Gynecology, 27(6), 309-319.  doi: 10.1016/j.jpag.2013.12.001

3. Stubbs, M.L.  (2008). Cultural perceptions and practices around menarche and adolescent menstruation in the United States. Annals of the New York Academy of Science, 1135, 58-66.

Erchull, M.J., Chrisler, J.C., Gorman, J.A. & Johnston-Robledo, I. (2002). Fact or fiction: A content analysis of educational materials about menstruation. Journal of Early Adolescence, 22, 455-474.

Erchull, M.J., & Richmond, K. (2015). “It’s normal…Mom will be home in an hour”: The role of fathers in menstrual education. Women’s Reproductive Health, 2, 93-110.

Johnston-Robledo, I. Stubbs, M.L. and Walch, A.  (2013). Oxford Bibliographies in Childhood Studies. Menstruation.  www.oxfordbibliographies.com

Margaret L. (Peggy) Stubbs is a professor of psychology at Chatham University in Pittsburgh, PA, and a member of re: Cycling’s editorial board. Her areas of expertise include psychosocial aspects of menstruation; attitudes towards menstruation, pubertal development; and menstrual education throughout the lifespan. 

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.