Endometriosis — the condition in which the endometrial tissue (which lines the uterus) grows outside the uterus — is a painful, debilitating and under-researched condition that affects around one in 10 Australian women. Despite these high numbers, there is still very little that’s known about the disease.

Now, a study funded by the University of Sydney has caused some waves — though not in the way you might think. The study explores the effect of the disease on endo sufferers’ male sexual partners. People are furious.

So this is what blind rage feels like pic.twitter.com/LsncCg1hjJ

— Imogen Dunlevie (@ImogenDunlevie) May 30, 2017

What’s The Problem?

The study is being conducted by Jane Keany, a philosophy student at the Western Sydney Sexual Health Centre (which is part of the University of Sydney). Keany posted a request for participants in the study this week, with the headline “Does your female partner experience painful intercourse?”.

Imogen Dunlevie, an activist and endometriosis sufferer, was shown the post by a friend on Twitter and was quick to voice her concerns. “I was frustrated,” Dunlevie told Junkee. “There is so little research and funding into endo it seems ridiculous to me that there would be a study with a focus on how it impacts male sex lives.”

Dunlevie shared a screenshot of the participant request on her Twitter, and news of the study quickly went viral.

No one will even study endometriosis and how it effects the people who have it. But sure see how men feel about it.

— Imogen Dunlevie (@ImogenDunlevie) May 30, 2017

Study: How does her endometriosis affect your sex life, men
Study: Pain caused from holding her hand while she gives birth
Study: Men, ruok?

— karaVAGgio (@karaschlegl) May 31, 2017

Not to be dramatic but I have endometriosis and the issue is not with how men feel about it https://t.co/3wox87rhWE

— gabe | nsfr (@pasdedodie) May 31, 2017

The anger is understandable. Endometriosis is not only a painful and life-altering condition, there is also no cure and many doctors are under-informed about how to test for and treat the condition.

There are countless stories of women attending numerous doctors with dysmenorrhea (painful periods), pain during and after intercourse, and pain and discomfort throughout their cycle (not just during periods), only to be turned away by doctors who assure them that pain during menstruation is normal.

“I think a lot of people don’t understand how bad it can be. Or they think it’s all in your head,” Dunlevie said. “Particularly because of ideas that periods are meant to be painful. It impacts every part of my life. It makes studying and working harder. Pain means I can’t stand for extended periods of time. It impacts my social life. My sex life.”

“The anger is misdirected.”

On the flipside, others are arguing that any study of endometriosis is a good thing — including those that focus on the perspectives of endo sufferers’ male sex partners. Junkee spoke to Syl Freedman, the co-founder of EndoActive, a non-profit health promotion charity focused on endometriosis, and an endo sufferer. Freedman said she felt “the anger is misdirected, ultimately”.

“I completely understand it and I know exactly how all those patients feel, but it’s just looking at it from a very narrow perspective. I think the anger is really just something that’s been built up probably for those patients over years and years and years of being dismissed and not believed and left out and feeling unvalidated — as they should.”

Freedman went on to explain the trauma of being an endo sufferer and seeking help from medical professionals. “Women with endo usually go through their whole lives being not believed and sidelined and dismissed by male healthcare professionals. And female healthcare professionals,” Freedman added.

“I have to say it’s not just men, but the majority of gynaecologists are men, so that often happens. Girls with endo are told that if they’re complaining of period pain before they’re diagnosed, the pain’s all in their head or the period pain can’t be that bad or this is a normal thing that women just have to experience so they just should get used to it and get over it.”

Freedman sympathises with those sufferers who are appalled by the male-focus study, and who might not have been asked to participate in any other study as an endo patient. “I understand that, from a patient perspective, if that was the first piece of research that you were exposed to, like if you had never been asked to participate in research before as an endo patient and that’s the first thing you saw — that’s obviously directed at men — then I can totally understand the anger and frustration there. I can understand how that would just be another blow.”

However, she went on, “But obviously from the researcher’s perspective, you don’t know what the overall aim of her study is because in that one screenshot on Twitter, it was only a small snippet. And I’m sure that her agenda by including male partners is ultimately to open up a conversation about sexual dysfunction between men and women.”

“I Thought This Kind Of Reaction Could Occur”

Keany, the researcher undertaking the study, told the ABC, “I thought this kind of reaction could occur… in fact, in a sense it mimics what happens for men. 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,” Keany added, “it’s a giving thing in fact, but let’s see if we can use that to open up the conversation more broadly.”

“We need to be listening to the people who have it and funding research into that, before we consider other people.”

Keany, who is a sex therapist, is conducting the study as part of her Master of Philosophy, a degree Freedman is also studying for at Sydney University. “That’s obviously her passion,” Freedman explained. “She’s obviously understanding that sexual dysfunction and pain for a woman is affecting relationships. Endometriosis can cause a breakdown, partly because of infertility issues or pain. And if it’s painful sex then it’s affecting both partners.”

Junkee reached out to The University of Sydney for comment on the study, and were told they had “nothing to add” on the issue.

Dulevie clarified that her concerns are “not to say the research can’t be conducted”. “[It’s just important to acknowledge the context it exists in.” Dunlevie’s complaints were made in an effort “to show that we need to be listening to the people who have it and funding research into that, before we consider other people.”

Freedman, and a few others, have also expressed concerns about how heteronormative the study is. “My critique of the study,” Freedman explained, “is that it’s just talking to male partners, and I felt that wasn’t inclusive of same-sex relationships”. In response to these critiques, Keany has since expressed an interest to speak to female sex partners of endometriosis sufferers as well.

One thing’s for sure: more research into endometriosis in general is desperately needed to combat further confusion, pain and misinformation directed toward the sufferers of this disease, and their partners.

Note: For Endo sufferers looking for a patient-directed study into the effects of Endometriosis on patent’s lives, Syl Freedman is conducting one such survey via The University of Sydney, and you can find information on that study here.

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Matilda Dixon-Smith is Junkee’s Staff Writer. She tweets at @mdixonsmith.