With all the podcast launch and all the stuff that came with it in the past two weeks, I've not had time to properly absorb or pen my response to the controversy that was all over the internet last week. The controversy I'm talking about of course, is that the University of Sydney is conducting a study into how endometriosis affects the well-being of men's sex lives.
Whilst I can understand the researcher has good intentions, her response to ABC kinda squashed any of the (very small) good faith I had over the logic behind this study. In an interview with ABC, Jane Keany replied with “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 they just have to set their own needs aside.” She does go on to say "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."
But as soon as I read that, my response was what else do you expect them to do? I would sincerely hope that women aren't forced into sex to satisfy their partner's needs, or guilted into it (though I know that both of these issues are very real), but other than those two answers and perhaps foreplay, what else could be done other than putting men's sexual needs aside, to prevent your partner from going through excruciating pain?
Firstly, as many of us with endo know, funding for endometriosis is incredibly limited. I know this first hand as I used to work very closely with the disease at a women's charity and I know just how hard it was to secure funding. We are making baby steps towards understanding endometriosis, but we're not near a cure and progress for making sense of the disease is slow. With doctors not knowing what endometriosis is (really, I've had that from GPs), and women being dismissed for years and years on end, this is the time to invest into research to help support these women - through better understanding, treatment and symptom management (which btw, would positively affect their partners anyway).
During my time at a women's health charity, I worked with a university who looked into the impact of endometriosis on couples. They explored counseling, talking methods, coping strategies, infertility and sex... but at no point was the conversation solely focused on the men and their sex lives. It was looking at the couple as a unit, exploring how they could battle endometriosis together and support each other in the process. Now I am for this - depression and anxiety is on the rise (as is divorce), so research that looks into how a couple can move forward as a team facing endometriosis is important, as it could mean that damage that may be done to their mental health and/or relationship can be reduced or prevented.
However, a study solely on men's sexual well-being? That's damaging in itself. I know from my work with women who have endometriosis and from my own experience, that it's not only incredibly painful physically to have sex, but also it's mentally painful to go through the torment of having sex because of guilt, or because you really want to and then end up suffering because of it.
Sex for women already has a heap of social baggage. For centuries we've been made to feel that a woman should please her man, that women aren't supposed to enjoy sex, that men could once have complete control of their wife's body (One of the origins of the concept of a marital exemption from rape laws (a rule that a husband cannot be charged with the rape of his wife) is the idea that by marriage a woman gives irrevocable consent for her husband to have sex with her any time he demands it.). I still battle with that internalised expectation on me to please my partner sexually - even if I'm not feeling up to it - and now to have a study come out about how hard it is for men? Imagine what that's going to do to the millions of women who are already struggling with possible feelings of guilt, for a disease that's not their fault and they've been left by society to battle alone.
In my time working at a women's health charity, I never came across a study that explored the affects of endometriosis on women's sex lives. I've never been asked by a doctor about this, I've never had any suggestions for making it easier to manage or to talk about. I only learned about pelvic floor therapy for painful sex from a fellow endosister I interviewed on the podcast!
Unless this study can offer support to women around reducing painful sex or symptom, I can't see how this won't cause damage and potentially hasn't caused damage already. Women with endometriosis are more likely to suffer from depression and anxiety, and I know many, many women who have suicidal thoughts due to the condition, are unable to work, unable to live a normal life. They survive day to day with all of these issues bearing down on them. With no cure or rise in funding on the horizon, this is not the time to tell them just how much their partner's are suffering from a disease they're not experiencing.
Yes, I appreciate that the affects of endometriosis on partner's is important, but let's make women a priority for once shall we?