Blog of the Society for Menstrual Cycle Research

Diagnostic Tampons, Fertility Tourism, and other Weekend Links

August 13th, 2016 by Editor

New menstrual media and technology made headlines with the following:

"Bathroom Sculpture" by Jena Tegeler

“Bathroom Sculpture” by Jena Tegeler

What is your menstrual-quantified self trying to tell you? Next Gen Jane is hoping to help women find out. The company is developing a diagnostic tampon that will collect menstrual blood for testing which, if successful, will eliminate the need for surgery and routine testing.

Similar research is already being carried out by the Feinstein Institute of Medical Research in their ROSE study (Research OutSmarts Endometriosis). Now in its third year, the study is seeking to diagnose endometriosis without invasive surgery by asking participants to collect a sample of their menstrual flow (using The DivaCup) for testing.

Today, it is not so much a question of: “Do you use an app to chart your cycle?”, but more so, “Which app do you use?” While fertility tracking apps are helping women to learn more about their menstrual cycle, a new study from researchers at Georgetown University suggests that most of these applications are not adequate for avoiding pregnancy or in helping couples conceive. The main downfall to these apps is their ill-use of proven fertility awareness methods. These findings come at an interesting time for YONO, an in-ear BBT thermometer device that is now shipping to customers! The data this little ear bud collects is said to provide insight to a woman’s fertility and hormone imbalance.

Have you heard of medical tourism? Although some regions, like Ontario, Canada offer publicly funded in-vitro fertilization, the majority of couples in need of fertility support are left to pay out of pocket. The price is right in places such as India, Spain and now Argentina as more and more couples are leaving their homelands for fertility treatment. While more options for fertility support are a good thing, these options are only available to a specific class of individuals. Where does this leave couples who are not able to afford treatment, let alone travel expenses?

Bodyform, one of the UK’s leading femcare product brands, is making a mark with its new (and honest) advertising campaign. This #livefearless commercial featuring actual blood shed by women in pursuit of athletic excellence, and the bold tagline—NO BLOOD SHOULD HOLD US BACK, has been making the social media rounds and garnered over 1.5 million views on Youtube.

Period panic on social media and young women’s openess about menstruation and menstrual products: 

Melbourne singer Melody Pool was handed a 24-hour ban from Facebook due to comments made about her period in a personal post. Her post asked: ‘Does anywhere deliver codeine to you because lady blood moon is waging war upon me.’ The content was classified as inappropriate and in violation of Facebook’s community standards. Maybe she’ll write a song about it.

And a recent mailing from UCAS (Undergraduate Courses At University and College) to prospective female students in the UK created a lot of confusion. Students took to Twitter to express their wonderment:

“UCAS can send me free pads and tampons but make me wait months to let me know if I’ve got into uni?????”

“The whole thing seems well-meaning, but everyone is deeply, deeply confused.”

The envelopes arrived with no note or explanation. When contacted my MetroUK, UCAS responded that through their partnership with various agencies, samples of products “we think will be useful to students” are sent out at random to those who opt-in to the sampling program.

Literary Menses in “Transgressions” by Sarah Dunant

July 23rd, 2016 by David Linton

A review of literary history might lead one to conclude that menstruation was a generally uncommon phenomenon, especially if one’s reading history was drawn from the work of male authors. Despite all their graphic sexual depictions, the women of Henry Miller, D. H. Lawrence, Ernest Hemingway, and a host of others never had to deal with having a menstrual cycle. Understandably, this is not the case with many women novelists and a few males, and over the years this blog has taken up the challenge of exploring how menstrual life has appeared in fiction, for example in previous posts about the work of Ann Patchett, Haruki Murakami, and Margaret Atwood, to name a few.  And, we have also cited the work of Dana Medoro whose path-breaking work, Bleeding in America, delved into the menstrual themes of the few American authors who treated the topic with particular insight.

Now Kelly Renn has drawn to our attention another noteworthy perspective in Sarah Dunant’s 1997 novel, Transgressions.

Analysis by Kelly Renn:

TransgressionsIn the novel, Elizabeth, a very independent and successful woman, is alone after the break-up of her seven-year relationship. She is dealing with all the emotions that one goes through but she also begins to think that she’s losing her mind because weird things keep happening around her large, empty house. At first she thinks it’s her ex, then she thinks it’s a ghost, or her own madness. We find out that it is a stalker which sounds predictable, as though the plot is heading in a conventional direction, but it isn’t. The stalker hides in her house one night with the intention to rape her. Elizabeth wakes up to find him on her bed, waiting. Instead of being raped, she somewhat seduces him and allows him to have sex with her, and even though the entire time she is petrified and violated by the act, she feels that it is the only way to save her own life. Later that night after she has gone to bed and washed the sheets she wakes up to find blood. Her own. Here’s the way Dunant describes Elizabeth’s response:

Her fingers came out red and sticky. She pulled back the covers. There was blood everywhere, caught in her pubic hair, smeared over her thighs, and a fat stain of it soaking into the sheets.  The panic turned to jubilation. She was bleeding early, her body joining in the victory, sluicing out all final remains of him, even down to the lining of her womb. There would be no need for doctors or morning-after pills now. She was doing her own healing…. 

It made her think about how rarely periods featured in books. Could it be that ficitional women menstruate less often than real ones? Clarissa, Anna Karenina, Scarlett O’Hara–not a soiled sanitary pad among them. The few books in which she could remember the heroines bleeding were ones set in convent schools–studies in hothouse guilt where the only acceptable blood was the miraculous kind, transubstantiating from alcohol to plasma in the communion cups. 

And a few paragraphs later..

It wouldn’t have been the same for him, she thought. What would he have done if he had pulled his prick out of her only to find it bleeding? Would the fear of one kind of blood have led him to another? Hammers and nails. Rape and crucifixion-maybe Catholic girls have learned more about life than they realize. 

She slid her finger up inside herself, feeling the wad of compressed cotton and the moistness already gathering at its edge. She ran her finger down the glass, leaving a smear on the pane. “See that” she said, softly into the glass. “My blood’s stronger than your sperm.” 

It turns out that not only does the character have a surprisingly distanced and scholarly perspective on her own rape, but she is able to speculate on all manner of gender politics in the aftermath.  The scene raises some important questions. Why did she not report the assault to the police? Will she? Would the onset of one’s period in such a circumstance have any effect on the ability to gather DNA evidence? Unfortunately, none of these questions are addressed in the novel, but it points out the fact that women writers are likely to bring perspectives to such topics that are far removed from any that male authors would entertain.

Kelly M. Renn is a maternity rights activist and Labor Doula. She is also an Early Childhood Educator and outspoken supporter of women’s reproductive rights. Her website is KellyBellyBirth.com.

“A Bleeding Shame” on BBC Radio 4 tackles period taboos

July 13th, 2016 by Editor

1-periodpositivequitehugeindeed

“Being period positive means you understand how the menstrual cycle works, and if you have one, you can chart your own cycle. You aren’t afraid to ask questions about menstruation. It’s not being afraid to leak and not picking on people if they happen to leak during their periods.”

SMCR member and Period Positive founder Chella Quint was interviewed recently for a radio documentary about period taboos for BBC Radio. Chella says she was the first one interviewed. In an email Chella wrote that “the producer said she wanted my help to shape the conversation! The only down side is I didn’t get to ‘reply’ to anyone else, and I’d love to have had a proper chat with the P&G rep.” 

Here’s what Jane Reck, the show’s producer, said about Chella’s contribution: 

I interviewed Chella for the BBC Radio 4 documentary A Bleeding Shame which examined attitudes to menstruation and why it’s important for all of us to be ble to have a normal conversation about periods. Chella’s contribution to the programme provided invaluable educational, social and historical context. She has a way of being able to get across really important messages in a thought-provoking style combined with her straight-talking humour. Public engagement at its finest! 

Listen to A Bleeding Shame which originally aired on BBC Radio on June 24, 2016. The program begins at the 3:25 minute mark of the recording. This introduction appears on the BBC 4 Radio website: 

Half of us have them, human existence depends on them, but we don’t like to talk about them! From the ‘The curse’ to visits of Aunt Flo, euphemisms for periods reflect a range of attitudes from embarrassment to fear. Jane Garvey discovers how the stigma surrounding menstruation is being challenged in science, sport, education and comedy. Former tennis player Annabel Croft, comedian Jenny Éclair, sports physiologist Richard Burden, Roisin Donnelly from Procter and Gamble, Period Positive campaigner Chella Quint and a group of teenagers, all provide their thoughts on the importance of being able to talk about menstruation.

SMCR Member Profile: Examining the “menstrual transaction”

June 29th, 2016 by Editor

David Linton, Ph.D., Professor Emeritus, Marymount Manhattan College

When and/or why did you join the Society for Menstrual Cycle Research?David Linton
As a scholar of communication and symbolic meaning, the social/cultural construction of the menstrual cycle is the most interesting human phenomenon I have every studied. And there is no other organization that provides better access to other researchers and scholarship on the topic.

How did you become interested in doing menstrual cycle research?
Over a dozen years ago the scandal involving Prince Charles (the Prince of Wales) that came to be know as “Cammiligate” piqued my interest in how the taboos and images of menstruation have become embedded in social practices and superstitions.  Then, upon discovering that the famed sex researcher Alfred Kinsey had failed to delve into how menstrual processes impact people’s sexual practices I realized that there was a gap in the research record that deserved to be addressed.

Which researcher, writer, or paper influenced or inspired you to pursue research in this area? Why?
Several: Leonard Shlain’s Sex, Time and Power, which claimed that women invented the concept of time due to the coincidental timing of the moon’s phases and the menstrual cycle; several of Margaret Mead’s studies of menstrual rules in tribal cultures; Chris Knight’s examination of African practices in Blood Relations; Dana Medoro’s The Bleeding of America, a study of the presence of menstrual elements in major American novels. All of these and others helped me see the centrality of the menstrual cycle in efforts to define and structure the human condition, especially notions of the meaning of gender.

What are the primary areas of your menstrual cycle research?
I work mainly in the area of social practices, particularly in how men and women relate to one another in the presence of the period. The term I use to describe this phenomenon is “the menstrual transaction.”

Where can our blog visitors go to read your work on menstruation?
In addition to being a regular contributor to the SMCR blog, having produced dozens of entries since the blog’s inception, I have produced several book chapters, journal articles and reviews, such as:

Camillagate: Prince Charles and the Tampon ScandalSex Roles, Vol. 54, Nos. 5/6, March 2006.

Keeping SecretsGriffith Review, Summer 2008-2009.

Crossing the Menstrual LineEmbodied Resistance, Ed. Chris Bobel and Samantha Kwan, Nashville: Vanderbilt UP, 2011.

The Menstrual MasqueradeDisability and Passing, Ed. Jeffrey Brune and Daniel Wilson, Philadelphia: Temple UP, 2013.

 Menstruation’s Cultural History: a review of Menstruation and the female Body in Early Modern EnglandWomen’s Reproductive Health, 2(1), 69-71, 2015.

What is the most interesting, important or applicable thing your research has revealed about women’s experience of menstruation?
That although menstruation is nearly exclusively a biological phenomenon that only woman experience, men and women participate in the construction of its meaning in a socially constructed manner.

What is your current research or work in this area?
I have recently been examining the representation of menstruation in the Bible and cultural manifestation of the Biblical stories and admonitions as well as the ongoing project of discovering literary and media menstrual details and attempting to understand their purposes. In addition, I am involved in some of the activist campaigns such as the effort to remove sales tax levies on menstrual products and to require testing and disclosure of the content of menstrual products.

How has the field of menstrual cycle research changed since you entered this area?
Yes, there is broader interest and wider acceptance of it as a legitimate subject for serious research. 

What else would you like our readers to know about the value, importance or influence of menstrual cycle research?
Simply that understanding both the social and the biological workings of the menstrual cycle is key to a better understanding of gender construction as well as to providing better health care to all women.

For information on becoming a member of the Society for Menstrual Cycle Research contact us by email: info@menstruationresearch.org. Subject line: Membership.

Period positivity still has a way to go

May 31st, 2016 by Editor

Giuliana Serena critiques Newsweek’s period stigma cover story

Note: This piece was first published on  MoontimeRising.com. It has been edited for length for this repost at Menstruation Matters. 

NewsweekCover_BloodI was pleasantly surprised and cautiously optimistic when I caught sight of the April 29, 2016 cover of Newsweek. It obviously got my attention.

I’m elated, and a bit discombobulated, to see menstruation and periods getting so much public and positive attention. But there’s also a lot of misinformation, subtle (& overt) shaming, and even pseudo-period positivity for profit out there, so I read the article with a fair amount of skepticism.

When it comes right down to it, this article wasn’t written for me. Maybe not for you either.

It was written for a broad audience, and I’m delighted it will be read by so many who will be learning about some of these issues for the first time.

In the opening paragraph, writer Abigail Jones goes so far as to say: “This process is as natural as eating, drinking and sleeping, and it’s beautiful too: There’s no human race without it.”

Highlighting the stigma and shame that those who menstruate are faced with worldwide is useful and relevant information for the mainstream.

Although I do take issue with certain omissions and the overall emphasis, I sincerely appreciate the coverage. And Chis Bobel, President of the Society for Menstrual Cycle Research, is quoted a few times!

Mentioned are Rupi Kaur’s banned self-portrait, the needs of those in prison and those who can’t afford “menstrual materials,” the very real health and environmental costs associated with conventional tampons and pads, the vast number of women and girls, ESPECIALLY in the Global South, who are ostracized, without resources, and face severe taboos and stigmas.

A lot was covered. A lot was not. It’s a big topic, and they couldn’t fit in everything. But here are a few issues I wish had been addressed:

It’s odd not to see women listed amongst the top “things” affected by period stigma in the subtitle: “Period Stigma is hurting the economy, schools and the environment. But the crimson tide is turning.” Although, it’s interesting to see it framed this way, and the article does address those topics.

Cups and reusables are only briefly mentioned, but deserved more attention with regards to environmental and health benefits.

Also, the opening sentence was not completely accurate: “Let’s begin with the obvious: Every woman in the history of humanity has or had a period.”

It’s true that the vast majority of those who menstruate are women (and girls), some women and girls (for various reasons) never have had or will have a period, and some who are not women and/or girls, will. We are just starting to understand how menstruation relates to transgender experience. In a time when we’re re-learning sex and gender more inclusive language could have been used. At the very least, these arising issues should have been referenced.

And I would love to see more talk about the benefits to young girls in educating and preparing them for coming-of-age, resources for doing so, and the value of ritual and ceremony in that process—but I’m not holding my breath!.

There’s more I didn’t love and I could pick it apart further, but honestly, I’d rather you read it for yourself.

This piece is bound to have a positive impact. Transforming the culture is a complex unfolding. And one cover story won’t do it. Continuing this conversation is crucial.

Periods getting this kind of attention in mainstream media would not have been possible without the tireless work of countless activists, educators, advocates, researches, and ordinary women and people destigmatizing and normalizing menstruation, body literacy, women’s bodies, sexuality, fertility, and all those other juicy topics that make us whole.

One (news) cycle at a time, we are making progress.

As Lara Owen, author of Her Blood Is Gold, commented when I shared a screen shot of the cover on Facebook:

38 years since The Wise Wound, 25 years since Dragontime, 23 years since Her Blood Is Gold: Awakening to the Wisdom of Menstruation, and since then many others. So grateful to everyone who has contributed to hauling this abusive and absurd taboo out into the light and transforming it into health and resilience.

And in reference to the article not going far enough, she added, “As we know too well, Rome wasn’t built in a day.”

Our society needs to get over our fear of periods. We need to let go of our fear of bodies and fluids, empowered women, sex, pleasure, self-determination, autonomy.

Yes, there will be blood.

Have a read, and let me know what you think!

Giuliana Serena is a Ceremonialist, Rites-of-Passage Facilitator, Menstrual Cycle Educator, and the creator of MoontimeRising.com.

Women comics taking on menstruation

May 12th, 2016 by David Linton

It used to be that menstrual humor amounted to men making crass remarks about PMS and the world of stand up comedy was dominated by male performers. Well, not any more.

In the last few years there seems to have been an explosion of young women comics doing stand-up and TV comedy.  Lena Dunham, Amy Schumer, Nicki Glazer, and a host of others have followed pioneers such as  Margaret Cho, Whoopi Goldberg, Sarah Silverman, Lisa Lampanelli and an even earlier generation’s Joan Rivers and Rusty Warren, whose theme song, Knockers Up, became a forbidden ditty for the post-war generation of comedy transgressors. And at the age of 86, Rusty holds a special place in the arcane world of cabaret comedy acts. This brief list comes nowhere near capturing the richness and diversity of the comedy scene where women crack the jokes and make their audiences gasp at their audacity.

Today’s women comics revel in coming up with the most shocking ways of alluding to their own bodies and their sexual relations. For instance, a recent skit on Inside Amy Schumer had her telling several female friends about a new product that would eliminate all taste from a woman’s pussy, the word of choice when mentioning the female genitalia. To demonstrate the effectiveness of the product she puts her hand inside her pants then offers her fingers to a friend to taste. And what better topic to include when one is striving for ever more ways to shock the audience with dirty words and forbidden subjects than the menstrual cycle. There may be no subject that has more layers of taboo and “ickiness” than menstrual blood. Whoopi Goldberg worked this material some years ago in her Broadway special that was aired on HBO when she did a long piece describing her entire menstrual history from her first Kotex belt to her entry into menopause. Similarly, Margaret Cho developed a riff that was surely influenced by Gloria Steinem’s famous If Men Could Menstruate essay that described how she imagined men would behave if they had a menstrual cycle.

In this episode of Broad City, the girls are forced to improvise when Abbi gets her period on a plane and doesn't have access to a tampon.

In this episode of Broad City, the girls are forced to improvise when Abbi gets her period on a plane and doesn’t have access to a tampon.

The new spate of sit-com styled TV shows that appear on the Comedy Central cable system and elsewhere have been giving the period a full airing. One of the most amusing in recent months was an episode of Broad City in which the two lead characters and creators of the show, Llana Glazer and Abbi Jacobson, are aboard an El-Al flight to Israel when one of them gets her period and has no menstrual product with her, which leads to an escalating series of jokes and crises. The episode, titled Jews on a Plane, covers a full range of period predicaments. It’s well worth a look for many reasons. 

David Linton is an Emeritus Professor at Marymount Manhattan College. He is also Editor of the SMCR Newsletter and a member of the re: Cycling editorial board. His research focus is on media representations of the menstrual cycle as well as how women and men relate to one another around the presence of menstruation.

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

“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.

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