Ladies... I need some support :( - Endometriosis UK

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Ladies... I need some support :(

brightbunny profile image
9 Replies

Hello again all... Lately me and my boyfriend can't even sleep together because of the pain. It's started to become psychological too, because I tense up and get nervous just thinking about it, anticipating the pain which is pretty much inevitable. He is supportive, and says he would be with me for the rest of his life even if he could never sleep with me again, but I don't want that to be the case! I want to feel normal again :( my endo is taking over...

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brightbunny profile image
brightbunny
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9 Replies

Hi lovely, I'm so sorry to hear this is happening to you. I have the same symptoms, sex is impossible! It got better for me after my first laparoscopy but has since returned and I'm waiting for my second lap. I would really suggest pushing this case with your doctor to physically treat you bug to also see a psychosexual counsellor as well x

brightbunny profile image
brightbunny in reply to Thecupcakesoldier

I am only 23 and have had my first lap, was diagnosed back in February. I'm not sure, is it too early to go for another lap?... That's a good idea, I'll have to look into that thank you. It's so rubbish isn't it :(. I just don't feel like it's ever going to change. X

extraordinary profile image
extraordinary

Hi there I know the feeling all to well. I feel exactly the same. I used to feel like a failure and im good enough but its not our fault. The emotional part of endo is by far the worst as ppl can't see our pai and struggle. We just need to stay strong and keep moving**hugs**

brightbunny profile image
brightbunny in reply to extraordinary

It's just trying to get your head around the fact we need to accept that it isn't our fault... And it's a touchy subject isn't it. So it isn't easy to just walk into a doctor's office and come out with it. X

zeezeeba profile image
zeezeeba

I am the same, sex is so painful. I bleed or "discharge blood" during or after sex which after so many times lead me to see my gp about. Also I would always have a throbbing pain where my cyst is! I would always (if not bleeding) continue with sex until partners finished and put up with pain because I feel guilty not giving it lol. Atleast now my partner understands why im not "in the mood" and i dont have to try and avoid sex like i use to. Had my scans.. 6cm cyst on my left ovary, no endo diagnosis yet, have gaeny appointment in a couple weeks to discuss next steps etc. It sucks what this does to us and I do hope things get better for you x

ValkarieCain profile image
ValkarieCain in reply to zeezeeba

I have a very similar story to you. No diagnosis yet but a cyst has been found (2nd one, I had a 5cm one removed when I was 15). I'm not meant to know I have another cyst yet, I read it over the doctors shoulder, but I have an appointment with my GP to discuss the results tomorrow.

Just make sure your persistent lovely, you know your body and you know when something isn't right. I got shood out of the doctors office more times than I can remember but you can't give up. Ask your doctor if they would be prepared to live life without sex and I'm sure you'll get the treatment you deserve! Listen to your body and do what it's telling you, if it's too painful stop. I used to carry on but I'd still be in pain the next day, it's not worth it x

steph-89 profile image
steph-89

I know exactly how you feel! I'm 26 and haven't been able to have sex for 8 years, I've always been told it's "in my head" and I've now developed vaginismus which is the vicious cycle you're describing. You feel pain, you tense, then over time you get conditioned to think you're going to feel pain and so you tense which then makes the pain worse and sex difficult.

I haven't been diagnosed with endo yet and a lot of my pain was at the entrance to the vagina but I also feel awful deep pain like someone is tearing me in half which is why my surgeon has told me I now need a laparoscopy to see if there's any endo in there.

At the same time as having the lap I will also be having Botox - it is injected into the vaginal muscles which "control" the involuntary tensing and it freezes them so they can no longer tense. This lasts about three months which is hopefully enough time for your body and brain to break the cycle. Don't give up :) I've been through an emotional roller coaster feeling useless or like I'm not a "real woman" but I'm learning to accept that it's not my fault. I'm not sure if the Botox can help with pain from endo but it might be worth looking into!

Good luck :) x

ValkarieCain profile image
ValkarieCain

I know how horrible this can be (I'm not yet diagnosed). The pain got so bad when I was with my ex, who I had been with for almost 4 years, I'm only 20 myself. We got to the point where we were barely having sex, and even when we did, he never got to "finish" because it just got too much for me. And there wasn't much else I could do for him as I have other psychological problems surrounding sex because of personal bad experiences.

I ended up feeling so terrible and guilty that I told him that I would not hold it against him if he were to go out and cheat on me, and that I actually wanted him, to go out, have a drink and sleep with a random girl. I genuinely meant that too, because I felt like I wasn't doing my "duty as a woman". I now understand that those feelings aren't healthy.

I know how upsetting it is to not be able to have that closeness with your partner, and all that I can think of suggesting is that you do some online research and find out what other sensual things you can do in the bedroom that doesn't involve penetration.

There are always things like sensation play that you could try to do together in order to still feel that closeness and arousal with out the pain and discomfort? And you never know, doing that may relax you enough just to have some gentle sex?

Hope this helps lovely, and sorry if it's a little too graphic, I just want to help xx

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