Researcher Studying How Endometriosis Affects Men’s Sex Lives Replies to Outrage

Last week, a University of Sydney study recruiting participants for research examining how endometriosis — a condition which affects the female reproductive system — influences men’s sex lives sparked outrage among the endometriosis community. Now, Jane Keany, the study’s principal researcher, is responding to backlash.

Keany’s study made headlines last Tuesday after The Guardian published an opinion piece by Imogen Dunlevie, a woman living with endometriosis. Dunlevie argued it’s “enraging” to see a study looking at the effect of endometriosis on men “considering the tiny amount of attention and funding endometriosis gets.”

Sharing her frustration, Dunlevie said:

Studies like this one make it look like the only way endometriosis will get attention is if we highlight how it hurts men. It’s not enough for women to share their countless stories of pain and suffering. How it limits their ability to finish study, work full time or even have sex. It’s not enough to describe the surgeries, and the medications, the invasive procedures that provide little to no relief. The only way we can get people to care is to tell them that men are impacted too.

Others in the community took to social media to voice their concern and aggravation.

there is money being spent on a study abt how Endometriosis affects men’s sex lives… meanwhile there’s still so little info known on endo+

— Ginny Weasley (@smurff32896) June 1, 2017

SO MANY vital research Qs regarding endo that need 2 be asked…how it affects partners’ sex lives? Not one of them. https://t.co/RDXgJWHUkE

— Rain Freeman (@_RainFreeman) May 31, 2017

Like, women with endo are kicked out of doctors’ offices for exaggerating pain, but when men can’t get sex – well, THATS the real problem ????

— naama נעמה (@derridalicious) May 30, 2017

Exactly. No sex is just one angle endo sufferers deal with. Men will never know the pain, diet changes, loss of trust in body -diff struggle

— SAMMY???? (@samantor) May 31, 2017

In an interview with Australia’s ABC News, Keany said she’s not surprised her proposal upset those living with endometriosis. “I thought this kind of reaction could occur… in fact, in a sense it mimics what happens for men,” Keany said. “Some men have said they are really scared of expressing their own sexual needs because their partner is in such a bad way [so] they just have to set their own needs aside. I’m not saying that’s a bad thing… it’s a giving thing in fact, but let’s see if we can use that to open up the conversation more broadly.”

Keany elaborated, saying endometriosis isn’t just a woman’s problem. “It’s easy to misunderstand this as being a woman’s problem, but I’m saying this is a couple’s problem,” she said, adding, “It even reduces the couple’s ability to have friendly touch as one or both of them are so worried about it leading to intercourse.”

Jane Ussher, a professor of women’s health psychology at Western Sydney University and a researcher unaffiliated with Keany’s study, also responded to the backlash. In a piece published by The Conversation, Ussher noted it is important to study endometriosis from the partner’s perspective as one study showed that “67 percent of women attributed relationship difficulties to endometriosis, and 19 percent said it was a cause of divorce.”

Discussing her own research, Ussher noted that women with vestibulodynia — a condition causing chronic and unexplained vaginal pain — found their male partners were willing to stop having sex, however, the women continued to be intimate because they didn’t want to let their partner down.

“These accounts were from the woman’s perspective,” Ussher said. “I wish we’d talked to the men too. Continuing to have intercourse when it causes the woman severe pain and bleeding is an experience we need to understand.”