Endometriosis: Outrage over study asking how disease affects men's sexual wellbeing

By Paige Cockburn

“Does your partner have endometriosis and does it impact on your sexual wellbeing?”

This question is being asked by a research student at the University of Sydney, who is currently investigating the sexual impact that endometriosis has on male partners.

It is a question that has ignited significant uproar, with many criticising the study for ignoring the sufferers of endometriosis — women.

Imogen Dunlevie, an endometriosis sufferer, said she could not see how men’s sexual wellbeing was relevant to sufferers.

“Women struggle so much to be believed or taken seriously about endo. For there to be focus on men and their sex lives, rather than women is pretty awful,” she said.

“All this tells people is that for women’s pain to be legitimate men have to suffer too.

“Endometriosis is so ignored. When people actually care about it and focus on it then yeah ask the lads how they feel.”

But the researcher, Jane Keany, defended the study by saying that talking to men will actually in turn help women struggling with the condition.

“I thought this kind of reaction could occur… in fact, in a sense it mimics what happens for men,” Ms 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.”

Ms Keany said some men may find that sexual intercourse with their partner is largely characterised by their fear of causing pain and they may feel it has to be over as soon as possible.

In that case, the man is focusing on the pain he is inflicting which means the quality of his experience is not good, Ms Keany said.

“And it starts to get murky unless you talk about these things.

“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.”

Ms Keany said she can understand why women feel uncomfortable with her study, but encouraging couples to talk is necessary.

“It’s easy to misunderstand this as being a woman’s problem, but I’m saying this is a couple’s problem,” she said.

“My sense is that maybe women feel that this is all of their responsibility because they are the ones experiencing painful intercourse but maybe if we start looking at the men we might be able to shift that responsibility a bit so it’s a joint thing.”

‘I hate being the reason you’re in pain’

Natalie* who suffers from adenomyosis, sometimes referred to as the sister to endometriosis, said before surgical intervention she suffered terribly during intercourse and she and her partner stopped having sex as he felt guilty about how much pain he was causing.

“When we were intimate he would hold back saying: ‘I don’t want to hurt you’ or ‘I hate being the reason you’re in pain’,” Natalie said.

“Due to the ongoing pain the only sex we had was instigated by myself and still my partner felt uncomfortable… he was constantly worried.

“I am a sexual person and for me I felt like I was missing out in a way because I couldn’t have sex without the consequence of agonising pain.”

Natalie said it is very easy for “all the sexy from your relationship” to disappear when your partner takes on more of a carer’s role and although her partner never verbalised it, she is sure he felt as though he was missing out on a fun, interactive sex life.

“And I don’t begrudge him for that, he did miss out and he endured a lot of the (emotional) pain with me,” he said.

Natalie said the study’s aim to encourage men to talk rather than walk away is important as they often feel hopeless seeing their partner struggle with the condition.

‘It takes two to tango’

EndoActive co-founders, mother and daughter Lesley and Sylvia Freedman, said encouraging men to talk could make for healthier relationships.

However Sylvia said she could understand why so many women were angered because their condition may have been dismissed by men in the past.

“The first reaction is, well it would be nice if women were asked about their sexual wellbeing but I can see the researcher’s reasoning,” she said.

“It takes two to tango,” Lesley said.

“My experience with women who have lost husbands and their marriages have broken up is that anything that would have helped their husbands they would have been grateful for.

“It’s not uncommon where there is sexual dysfunction for marriages to break up.”

Men need counselling too, Lesley and Sylvia said, as they are often at times in a carers’ role.

“The men need to feel supported too, anything to make those conversation easier between partners,” Sylvia said.

The pair also said there is a misconception that there is very little research on endometriosis but they estimate there have been around 800 to 1,000 different research projects around the world.

More funding = more inclusive studies

Endometriosis Australia said they would not comment on the study but emphasised that more funding is needed in Australia.

“We have world-class researchers in Australia so why are we not spending more money on research?” said director Donna Ciccia.

“If we had more money in the pool we could be more inclusive and have more projects.”

Ms Keany has also responded to concerns that her study leaves out women in lesbian relationships, and said she would love to do a follow-up study on how they are affected too.

Around 600,000 women in Australia suffer from endometriosis which costs society $7.7 billion annually, with two thirds of these costs attributed to a loss in productivity.

EndoActive is currently inviting women to share their experience as an endometriosis patient through to contribute to patient-led research.

This post originally appeared on ABC News.