Endometriosis UK

Sex pain - fear, real or endo coming back

I don't know where to go with this or who to talk to so I'm here again :/ :Pre-note: I overlap on the combined pill so only have 1 period every 6 months - I've only had 1 since op.

Pre-laparoscopy that identified and removed endo (april 2016) I had pain during sex, particularly in certain positions that I no longer do. Post-laparoscopy the pain is milder and less frequent and has made certain positions easier but its still there, it still hurts sometimes and because of how spasmodically occurring it is I'm scared pretty much everytime with sex.

This obviously lowers my sex drive but it also just gets me really down, I'm 21 and a few years ago sex never scared me and now it does and I don't know if it ever wont. I used to really enjoy sex and be quite confident and now that girl feels millions of miles away, drowned never to return. My partner is fantastic and has stuck with me through all of this but the low sex drive has obviously changed a lot for us. We've tried all the take it slowly, etc to make sure I'm completely relaxed and not tensing and sex is good but even so I can't shake the fear of it hurting away, its like a constant nagging at the back of my mind, so even during sex I'm scared for the pain I might have for days afterwards. I can't fully relax and enjoy myself and thats a horrible feeling.

Its giving me terrible dreams surrounding the fear of forced sex and the pain that would cause and the pain I feel in my dreams is a reflection of the real pain I'm feeling anyway (the endo 24/7 bullshit) making the dreams cruelly realistic and preventing me from just forgetting about sex and pain.

This is causing me such mental turmoil at the moment although I'm still in constant pain its milder and because things are better than before the op (they were pretty bad then) I can't work out what to do. Should I accept this level of pain, is in normal? Have i just got used to it and made it my normal? But surely if I am able to not think about it 24/7 it can't be that bad? - I have no idea - I lost my normal a few years back and I have completely forgotten what normal is supposed to be thus don't trust myself anymore, but I'm unhappy and hurting, thats what I know, be it milder or not, I am unhappy, and I hurt. But I work and I function, am I just being weak?

So this isn't so much a question, I guess I've just made it a vent now sorry and thank you to anyone reading, I don't know where else to turn.

5 Replies

I'm so sorry you are suffering so much. The first consideration is that endo is often missed in general gynaecology and pain with sex often indicates deep endo behind the uterus in the form of buried nodules that often can't even be seen at a lap. Are you in the UK and if so which country? This determines treatment options.


Hey thanks for replying, that would make sense I guess! I'm in England, Devon, the treatment I had was up in Hull, I don't think it was a specialist but I'm not sure to be honest, I'm Exeter way and know there's a specialist there, it's not been long since my last operation though


If you want to join my FB support group we can name surgeons and look at your lap report.



Thanks for the support however I keep this off Facebook and generally away from the handful of people that know as I can't deal with seeing it everywhere all the time or having strangers or colleagues sympathy or pity or just thinking of me.differently at all , thank you so much though! X


If it makes you feel any better, the group is totally private so no one outside the group will see what you post! But if you'd rather not join because you want to have some break from the reminders of endo, I totally understand why you may not want to join. :) It's been a great source of info for many of us.

It may be worth talking to your GP about psychosexual counselling. My whole journey started because of dyspareunia, and that was one of the suggestions offered to me (I said maybe, eventually, but I wanted to find the source of the pain first, because I knew it was physical!).

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