Endometriosis UK

Pain during sex

Hi everyone,

I was diagnosed several weeks ago, after a laparoscopy. I was expecting to have endo - my grandma, mum and sister all have it - so that wasn't a surprise. Symptoms wise, I'm relatively "lucky" - I don't have the incredibly painful periods and infertility that my family members struggle with. My main symptom is pain during sex.

I haven't had sex without pain in nearly two years. I've been with my boyfriend for three years, and he's always been really supportive and caring. He says it doesn't matter, but it does to me. I can't come to terms with being 22 years old and possibly never having a normal sex life again.

Mainly, I just feel so alone. My boyfriend says he understands, but I don't think he fully can when he could have sex with someone tomorrow and it would be perfectly fine (he wouldn't of course, but that's not the point.) I keep pushing him away, and picking fights with him. I can't seem to stop crying, and I don't have any friends with the condition, and I feel like my friends don't really understand. They keep saying sex is more than penetrative sex, which is easy to say when you can have any sort of sex you like.

Has anyone got any advice, or things that might help? Mainly I just want to know that I'm not as alone as I feel.

Sarah

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Hi Sarah I’m so sorry you are having trouble. It’s teally a horrid thing to not be able to be intimate with your partner without pain. Something most of us know all too well!

Can I recommend you let your gp know that this is still occurring after your lap. Are you on any treatment?

Also I found that I was actually starting to become very anxious at the thought of intimacy due to the pain which I feel I made worse as I would work myself up over it so much. I practiced some CBT techniques to help keep me calm and not to almost convince myself it was going to hurt which actually has really helped! Maybe have a look at CBT and see if it helps you could find it just helps you relax a little and hopefully it won’t be such a negative experience for you.

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Have you tried dilators? I was diagnosed with vaginismus and given dilators, and am about to start pelvic therapy with a special pelvic floor pressure point thingy (not sure I can name brand names here) so that could be worth looking into. You'd be surprised how much the internal muscles need a massage, as we hold so much stress there and often you can find a pressure point that helps release some of this. There are some pretty handy videos or pages about it online, or message me if you feel like you're struggling because you're certainly not alone! x

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Hi SarahMia227,

Sorry to hear you've been feeling alone - you obviously go through a lot. Just wanted to say that you're not alone- women on the Endometriosis UK helpline (0808 808 2227) have all had endometriosis themselves and are very willing to listen. The helpline is open on most days.

Also, feel free to check the Endometriosis UK support groups: endometriosis-uk.org/suppor...

Hope you will make use of this helpline and/or support groups.

Hope this helps, take care x

Ugne

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Hey there XX I can relate a lot. I'm 42. I have never had pain free sex. I never really understood why people liked it. Ive also suffered episodes of depression and felt isolated like you. It probably contributed to my first marriage breakdown. I was only diagnosed 18 months ago after worsening bladder and bowel symptoms. A large RV endo nodule was found in between my vagina and bowel. About a year ago it became physically impossible to continue having sex with my husband. I tended to avoid dong non penetrating sex as climax was also painful and also because I felt bad about myself and about " leading my husband on" then frustrating him though he's been very supportive and encouraging.

I had excision surgery in July but the endo had damaged my vagina quite badly and I lost 4cm2 of it and had to have a partial vulvectomy and vaginal repair. 4 months on I've just started to try to have sex again though it's still very painful. I see my consultant again in a week or so.

Feel free to pm me if you want to.

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I really feel for you. You're not alone.

From my experience certain angles and positions can be particular triggers for pain so it's worth finding out what works for you and getting really good at communicating that with your partner.

I also try to make sure that I time taking painkillers, especially anti inflammorties before sex.

Great that your partner is being supportive and understanding. Even though endo is horrible and takes up so much brain space and stress please remember that you are so much more than endometriosis and it's symptoms.

Xx

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