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Why We Should Talk to Both Sexes About Endometriosis

The University of Sydney has put out a call to men who have partners with endometriosis — a deeply painful condition where a woman’s uterine tissue lining grows outside the uterus—to report back on how it affects their sex lives.

Endometriosis can cause a number of symptoms ranging from painful periods and bowel movements to excessive bleeding and infertility. Recently, director and actress Lena Dunham brought the disorder into the public eye when she wrote publicly about her lifelong experience with it for her newsletter Lenny. She recounts a life of searing pain, stomachaches, exhaustion and sometimes bleeding for 30 days straight. (Dunham has recently announced that after her fifth surgery, she’s endometriosis free.)

Because researchers can’t identify the cause of endometriosis, it’s difficult to treat and has no cure. In response to the study, another sufferer, Imogen Dunlevie, shares the facts about the disease at The Guardian: It affects one in 10 women, yet receives very little funding.

Considering the tiny amount of attention and funding endometriosis gets, it’s enraging to see someone conducting a study into how this disease impacts men. Women’s sex lives are far more impacted by endometriosis than men’s are, and if any study on this area is being conducted it should look at how women and their sex lives are impacted. Endometriosis does not hurt a man’s sexual wellbeing. It does however impact every aspect of your life when you suffer from it. It can mean that sex is often painful and unpleasant, penetration can cause bleeding and pain remains for days afterwards.

Dunlevie’s response and others on the internet echo this sentiment: Why do women’s diseases only get attention for how they affect men?

They aren’t wrong: A recent study from the University of Sweden called endometriosis a “hidden” disease because its symptoms so often mimic menstruation, making it tough to diagnose. Women are often not believed when they report the symptoms or are told they’re exaggerating; A typical result is being prescribed painkillers and sent home. It can often take five to 10 years before the issue is properly identified.

“If a man had a disease which caused him to be unable to father a child and [caused] unbearable pain during sex and unbearable pain during bowel movements treated by feminizing hormones and surgery, endometriosis would be a national emergency in this country,” Nancy Peterson, who runs the Endometriosis Treatment Program in Oregon, said of the condition, which is said to cost the U.S. $119 billion annually in lost productivity. Top Chef host Padma Lakshmi, who was diagnosed with endometriosis at age 36 after a lifetime of symptoms, called the lack of funding for the disease “criminal.” CNBC writes:

The National Institutes of Health has a total 2016 budget of $32.3 billion. Of that, total funding for endometriosis is $11 million this year and projected to be similar in 2017.

To put that into perspective, although endometriosis affects a large percentage of the female population, the disease gets less research funding than adolescent sexual activity and teenage pregnancy.

It gets the same funding as diseases like ataxia-telangiectasia, Charcot-Marie-Tooth Disease, interstitial cystitis, osteogenesis imperfecta and valley fever.

All this makes an incredibly damning case for the lack of funding for research into endometriosis. But what it doesn’t do is make a damning case against the work being done at the University of Sydney. Here’s why: Women with endometriosis still have relationships with men, and understanding the disease from the lens of their partners could yield better advice for how couples can deal with the disease together. Finding out how men and women navigate sexual intimacy is also useful, either in understanding what works, or what doesn’t.

Such approaches have worked with PMS. In one study where couples did counseling together to better understand how the woman experienced extreme PMS, and how they could better support her, 58 percent of the women reported increased self-care and coping strategies. Some 57 percent reported an improved relationship with their partner.

A flipside issue similar to this — though not underfunded — is how men who’ve had prostate cancer negotiate sexual intimacy with their partners. Incontinence and erectile dysfunction are common ailments, and because of this, spontaneity is killed due to necessary use of injections and vacuum pumps. The result is that female partners who may have once enjoyed their sex lives must employ patience and persistence to make it work.

As it is now, endometriosis sufferers are routinely counseled on how to discuss their disorder with a partner and navigate painful sex, a direct result of a 2006 study of the male partners of women with endometriosis. Partners experience a range of emotions together trying to figure it out, including powerlessness and grief. But sometimes, they come out closer as a result, which points to a way through the condition that can result in greater intimacy.

So yes, unequivocally, asking men how they feel about their girlfriend’s endometriosis won’t help diagnose it, or cure it; It won’t save a woman’s fertility, or give her back lost time and suffering. But because it opens up the larger ecosystem of what needs to happen among couples who navigate this every day, such a study just might help save their relationship.