Endometriosis affects 10% of women worldwide, and one in 10 Australian women during their reproductive years.
Endometriosis is when the tissue that is similar to the lining of the uterus develops externally, named the endometrium, and is a source of pain and/or infertility. Sufferers will often experience chronic pain which can also occur during sex, financial difficulties, anxiety over fertility and relationships, emotional trauma from miscarriages, and hefty cost of treatment.
As of now, there is still no cure for this disease, which has no known cause, and little treatment due to a lack of funding. However, there has yet to have been a case study on how endometriosis impacts the lives of men. Until now.
“Does your partner have endometriosis and does it impact on your sexual wellbeing?”
This is the main question asked by research student from University of Sydney. The student is currently studying the impact of the illness on the sexual wellbeing of the relationship on male partners. It is being called out as an ignorant question and criticised by women who actually suffer from endometriosis.
Imogen Dunlevie, an endometriosis sufferer, has taken to Twitter and media to criticise this study for its lack of empathy towards women and understanding of the disease.
So this is what blind rage feels like pic.twitter.com/LsncCg1hjJ
— Robot Queen (@ImogenDunlevie) May 30, 2017
A friend didn't get diagnosed until she ended up unconscious in a pool of blood. But men's sex lives are affected? Now that's worth study 😠 https://t.co/2qRUInTwG3
— Nikki (@nikkkireed9510) May 31, 2017
Me: It's important to acknowledge that people with endo are often ignored
Men: You're saying only research you agree with is allowed?
— Robot Queen (@ImogenDunlevie) May 31, 2017
Dunlevie further elaborates on her personal experiences with the disease and how there is little information about it, often leading to doctors to dismissing it as “women problems” and not further investigating the pain it is causing.
“It is damaging to set a potential precedent of male-centric studies into the impacts of endometriosis. There is no logical way that any discussion about [it] should focus on how it impacts men, or the partners of people who actually have it. We can barely get a conversation about endometriosis going in the first place.”
While the study may come across as insensitive, researcher Jane Keany has said the study may actually prove to be beneficial for women if men are able to understand the issue.
“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.”
EndoActive co-founders, Lesley and Sylvia Freedman, believe having men in the conversation will open avenues for healthier relationships. However, Sylvia understands why women have been angered because of the dismissal of endo in the past and the seemingly lack of empathy from this study.
“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.
“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.”
An anonymous submission to Mamamia defends the involvement of men and others in the lives of those who suffer from endo, stating:
“Endometriosis is more often carried carefully by the ones in her direct orbit. Her mother, father, sister, brother, partner. My boyfriend; my lovely, resilient boyfriend, carries everything but endo’s physical manifestation.
“Don’t tell me his thoughts, feelings and sexual wellbeing doesn’t matter.
“He is another player in this game, and he matters greatly.”
Emotional support from both sides is key to fostering a healthier relationship. Endo is sometimes a lonely experience, but there are active groups like Braave who are encouraging men and partners to be supportive of the one they love who is suffering from endo. Some men will take on the carer’s role and it is through a love for their partner that they assume this. Nevertheless, it is important for both parties to understand what is happening and face it together.
EndoActive is currently holding a survey inviting women to share their experience as an endometriosis patient. This survey will contribute to research.