Sex and the Endo

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.

x

facebook.com/theendodiary

8 Replies

oldestnewest
  • now that's a post that most can relate too, it is hard, to know the difference between normal an abnormal, sex has always been a little unconfutable, until it was painful almost every time, I used to save sex up until id had a drink, then I would over come my fears and be numb to the pain, now that's something ive never said before, now I don't drink as much because that causes its own issues, lol, everything has its issues with us, ive had 2 surgery's last year a lap and a hysterectomy, and sex after is scary, 1 because of the fear of it still hurting and 2 because of the pain itself, I don't get much pain during anymore, just back to uncomfortable, but unfortunately, it does seam to stir up my endo, and I get a very hot ache in my pelvic area and back, abit like early labour, age seams to make talking about sex easier, but its still not something I want to discuss with my friends, its one thing talking about good sex, but quite another discussing bad sex, with the man you love,

    young girls do need to be educated better, regarding our bodies and whats normal or not. I only have sons, but I will make sure when the time is right they understand that sex should hurt,

    xxx

  • Thanks for getting involved Tboag. I think it's good to start the conversation, not even with the expectation of giving a lot of intimate deal but to recognise the pain is both physical and emotional with sex and endometriosis. Your sons are lucky to have a forward thinking mother.x

  • I completely agree! Ive built a mental barrier in my head about sex=pain. Which when your trying for a baby can really be emotionally and physically draining...

    im glad you have a supportive other half, its all about taking it slow, learning what you both like and what doesnt hurt as much for you. Not to be crude or anything, but for me sex hurts, but certain positions hurt less, so maybe try a few different positions that you feel more comfortable in

  • Hi Em91. Thank you for the advice, there's a lot of work to be done to get back to normal, or even to establish a new normal.x

  • Good post. To me it seems after the constant pain, sex is the biggest issue. Not only does the pain during sex terrify me, the day after I will have a swollen stomach and I end up in tears after every time trying as I feel completely useless as a woman. Sex in my relationship is non existent and because I feel like such a failure and as though, in a intimate way I'm holding my partner back i spend all my time saying sorry for everything and anything, my confidence is shot, and I am at my heaviest weight wise. Before endo I had a high sex drive now the thought petrifies Me and I just wish someone (family or friends) understood how crap it makes you feel and how I'm not just being dramatic at how non existent sex is. I do however know how incredibly lucky I am to have the most understanding partner ever.

    Thank you reen_bean for making sex talked about properly, as a problem not just a symptom. :-)

  • Cakegirl25 thank you for your honest and open reply. Its not a topic that is discussed enough in my opinion. I definitely identify with your frustration, it's not something a lot of people will understand or even admit to. Its good to know I'm not alone x

  • Your definitely not alone. Unfortunately it is a taboo subject and I myself have become coy whilst in the drs surgery and just answered the basics but actually it's a huge part of life as an adult In a relationship or not. In certain ways it makes the difference of being in a relationship and being in a friendship. Maybe if the Dr's understood the mental damage, frustration and physical damage it does on people they would take the condition more seriously, as I don't think "it hurts" justifys how it actually feels, yet this is what we all say as its so embarrassing. Maybe starting to talk about how we all feel on here, will help to say it out loud.

    :-) x

  • Your post is brilliant! I always thought cuz I have PCOS and endo that it was just my body being stupid, not that it actually hurt... Until I had pain afterwards...

    I've spoken out about the medication crushing my sex life, affecting my mental health( I've been on 5 diff contraceptive pills..) I'm now on the mini pill... I refuse to have the coil as I want children in 6 months!

    Your article gives us all hope that we should fight as we know what our bodies are doing better than a doctor!!

    I often wondered from being about 9-10 years old why j didn't get a sensation I needed to pee til my bladder was full and in lots of pain... My consultant found endo cells on my bladder and urethra which kinda makes sense now but years of bladder and kidney problems seeing various consultants and then being told you have PID... Which all of this is actually PCOS and endo related...

    It's nice to finally have a diagnosis!

    Thanks you! Xxx

You may also like...