I feel like I should start this one with a disclaimer; mum you probably won’t want to read this one. This article is about sex and endometriosis.
This is an article that I have wanted to write for a long time now but I never quite found the words for it. There is a vulnerability to discussing this topic that still doesn’t come comfortably to me. Since my endometriosis diagnosis I have read forum, after forum, after forum and I have yet to come across any woman’s struggles and experiences regarding endo and sex. Yes it is documented that endometriosis causes painful intercourse but that is as far as the discussion goes. I would like to change that, I would like to start the conversation; I would like to encourage other women to feel comfortable enough to talk about their experience.
I was brought up in a home where sex was never really talked about; my mother was fantastic about talking about periods, the reproductive system and anatomy but not sex. In secondary school I learned the biology of reproduction, the logistics of what goes where to create a baby but I was not taught about sex. Sex education consisted of being told not to do it until we were married and that was that. At no point was my adolescent mind introduced to the reality of sex, I was never told how sex would affect me emotionally, mentally and physically. So what little understanding of sex I did have was built on a foundation of teenage bravado, popular culture and grossly inaccurate retelling of stories my friends had heard from their sisters. Sex was never to be talked about and I accepted this to be the norm as I progressed into adult life.
I can still remember sitting in my GP’s office being asked “and do you have pain with intercourse?” I was absolutely mortified! Who asks that kind of thing, I was obviously silent for too long because after what seemed like an eternity of silence she followed up with “you do know pain with intercourse is not normal and should be investigated.” At 23, I sat completely dumbfounded by this information, I explained that it wasn’t sore all the time but sometimes. My GP put this symptom on my consultant referral and to this day I credit this observation as one that led to my diagnosis. I had seen many consultants, over many years but this additional symptom was taken very seriously and coupled with the rest of my symptoms was what prompted my consultant to investigate the potential that I had endometriosis.
The pain I experienced during sex started to impact me mentally and emotionally. When I first started experiencing pain it wasn’t all the time – sometimes it hurt, sometimes it didn’t- but as the disease got worse so did the pain, eventually it hurt every time.
As the disease progressed my hormone medication was intensified until I was put into a medically induced menopause for 6 months before having a Mirena coil fitted. The intense hormones served to exasperate the problems I was facing with my sexuality and sex life – but I didn’t know this until I came off the hormones and my system detoxed. While I was on these medications my libido was almost completely suppressed. I found Chris immensely attractive but I did not have the want to encourage sex. I had always assumed I did not feel a drive because of the pain, but when my hormone levels returned to normal I was still scared but I found my sex drive had come back. I also found that while I was on the artificial hormones I did not find myself attractive; I tended to cover my body and I hated looking at myself in the mirror. I lost a lot of confidence; I didn’t feel good about myself and preferred to sit in the background. Chris was always very generous with compliments and I believed he found me attractive but I didn’t feel it. I didn’t get that feeling of ‘damn I look good’ when I got dressed up. But as my hormone levels returned to normal I felt like I found myself again. I feel like I have got my confidence and self-image back. I feel like a woman, I like my perfectly imperfect body. I like my scars and my curves and my C-cups. We deserve to feel like women, we go through so much with this disease and it takes so much from us that I resent that it took away sexuality and confidence. Now when I am discussing hormone treatments I talk about the impact they have on my libido and emotional wellbeing - these are things we are allowed to consider, these are things the Dr will help with.
So now here I am, post-surgery on the road to recovery. As I have said it’s a slow process and there are many wounds that are taking time to heal – physically, emotionally and mentally. When people ask me how I am or how the healing is going, I tell them I am doing well, the scars are lightening, I am having some right side pain, I am getting there. What I don’t…or what I haven’t said until now I guess… is that I have so many other wounds healing; the surgical ones are the tip of the iceberg. The years of painful sex have engrained a fear in me that doesn’t just go away overnight because the endo was cut out. We have to work on becoming comfortable with each other again; we have to slowly build confidence with each other. It will take time, a lot of work and communication to get back to having a normal sex life. Sex after surgery is scary, it is emotionally and mentally draining and it is something most women face alone.
I do feel that sex should be talked about: so all women know pain with sex is not normal, so that all women know that it is ok to ask to have a hormone treatment changed if it is crushing her libido and negatively impacting her mental and emotional wellbeing, so that our endo sisters know that they are not alone in their struggle with sex and intimacy, so that our endo sisters know that sex after surgery can be scary, so that our endo sisters know that they are not alone and isolated in their experience.