Sex and Endo - awkward talk!

Hi all,

I've been suffering really badly for around 5 months now with not many times I feel "normal". This has had a huge impact on my relationship with my boyfriend :( he is kind and understanding, has attending Drs appointments with me and tries his best to look after me if I'm having a bad day, so really I couldn't ask for any more off him.

Our sex life has become near non existent - we are both so worried about it. The twice we have in these months we have been drinking before hand so I think it calms the nerves! However after another failed attempt I'm starting to get really fed up and a little emotional about it. I've been really trying to not worry about it as I know that'll make it worse, I've tried massage to relax the mood but when it comes to going any further it becomes almost awkward and fumbly because we are both so terrified it's going to hurt - him more so than me as I know if I'm having a bad day. This then ends in feelings of not being wanted and often tears.

Sorry for the long post with perhaps "awkward conversation" but I just wondered how anybody else got round this - the Drs don't tell you all of this about endo and it's difficult to discuss with friends who don't understand.

Thank you in advance xx

21 Replies

  • Hi Kieenha,

    If it hurts to have sex, I think your GP should investigate. There are other things apart from endometriosis that can cause pain during sex. The predominant thought that "it will hurt" will also always be there despite alcohol and massage. I think understanding the root cause of pain is your answer to a comfortable sex life.

    You're lucky to have a supportive partner. But sex is one of our basic needs.

    Hope you find out what's causing the pain x

  • Hi,

    I have had lots of other tests such as cervical biopsies and ultrasounds to check for other things. The consultant told me there was disease which he considered "high in toxins" in my PoD so it was likely that.

    Thank you for your reply xx

  • Hi Kieenha,

    I had a similar issue with my boyfriend just before we broke up. I think improving communication and assuring him you'll say if you're uncomfortable or in pain will hurt. I did this, and it helped, but I still felt like 'things' didn't feel normal for me, and sadly I think this resulted in our relationship ending as he couldn't understand why certain things he did didn't work anymore.

    Another word of advice is to make sure you're emotionally in the mood - odd thing to say, I know, but I found if I wasn't feeling it I'd get emotional because things didn't feel right, and that then furthered his confusion with it all.

    It sounds like you've got a supportive and understanding one there, so just be open and honest with him about it and I'm sure it'll help.

    Best of luck,

    G xx

  • Hi,

    This sounds very similar to where we are at the moment. I have been telling him when I'm uncomfortable but it just makes him worry more. I'm sorry to hear you guys broke up - I hope not solely as a result of this.

    I get what you mean about being in the mood - I so rarely am I think I go along sometimes so as not to upset him. X

  • Hi - do you have the report sent to your GP after your lap? You said they removed 'some' of the endo. We need to establish where they looked, where it was found, how it was treated and where it was left untreated.

    What symptoms do you have besides painful sex? You have been sent to gastroenterology for problems using the toilet. Do you have pain using your bowels and IBS symptoms, lower back pain, any referred pain to thighs or legs, random shooting/stabbing pains?

    What area of the UK are you in?

  • Hi,

    I don't have a copy of the report but my GP does.

    I'm not sure you are replying to me? I haven't been referred to gastroenterology - I didn't even know they would do that for you!

    Other than painful sex I get general pelvic pain most days and "knock you off your feet" periods sometimes. I do suffer with the toilet too. Back ache and pains down my right leg too. I'm in Derby but since looking at this site I've heard of BSGE clinics and this is not one of them. My GP is reluctant to refer me to one whilst I'm under Derby.

  • It's very hard to get over painfull sex, even when it gets easier,

    I was suffering terrible pain during and after sex, and basically just stopped doing it,

    Thankfully I'm much better now,i had a hysterectomy due to adenomyosis, and had retroverted uterus,

    Are you under a bsge specialist centre, ?

    Where was your endo found and removed from, x?

  • Talking about retroverted uterus, is it a cause for infertility if your uterus is positioned that way?

  • Hi, I'm under Derby which I know now is not a BSGE centre but my GP was reluctant to refer me elsewhere when I visited a few weeks ago as I hadn't given this a chance yet she said.

    I'm glad to hear that your pain is better now. A hysterectomy is long off on my radar as I'm only 24!

    All I know is that it was in PoD, left ureta and around ovaries and bowels. But I was still groggy from anaesthetic when he discussed it with me so my memory is fuzzy!

  • I am sorry to hear that you are suffering with pain during sex. I used to get this every time I had it and also the morning after I would still be in a lot of discomfort and pain.

    The only thing that has helped me is the mirena coil, since I had it fitted I have no pain during sex. Maybe worth looking into. Have you had your endo removed? I know that having it lazered didn't help me whatsoever, the only thing that has helped has been the coil. Good luck x

  • Hi :)

    I recently had a coil fitted - around 8 weeks ago. I wasn't told the need before my surgery so I had it done after which was a little traumatic!

    I don't think the surgery helped the pain during sex at all but I'm not entirely sure about the merina yet. Did you have to wait long before you noticed the effects?

  • Luckily for me it didn't take long for my body to adjust to the coil. The first time I had sex with it was probably about 2 weeks after I had it fitted and I experienced no pain during or after. But everyone is different! x

  • I have stage 4 endo and adeno. I rarely have sex with my husband due to the pain, I also have cramps and bloating for a day afterwards. We've probably had sex twice in the last 6 months. When I was internally examined by my consultant (which was very painful) she could feel rectovaginal nodules, my uterus is also retroverted and stuck to my bowel. I'm very lucky that my husband is fully understanding and hates seeing me suffer. I'm having a hysterectomy and excision surgery with a BSGE surgeon in 5 weeks and hopefully, after recovery, normal service can resume😉

  • Reading this I again feel let down by my consultant! I have no idea what stage it is or what adeno is.

    Examinations are painful for me too - and I was told they could feel bits on an examination but I'm not sure if that's the same thing as you are describing.

    You're very lucky to have such a supportive husband - I hope your surgery can sort some other problems a little for you x

  • If your endo is in that many places then it sounds fairly extensive. This teally ought to be treated at a BSGE centre with endo specialists rather than General gynae. Have a search on here for posts by Lindle, she's posted some really useful info and links to nhs guidelines on recto against endo needling to be treated at a specialist centre which you can take to your gp to demand a referral. If they still won't refer you I would consider getting a new gp! Hopefully if you can get seen by a specialist you will be on your way to things getting better. Good luck! X

  • Thank you so much for this. I will have a look. It's so nice to talk to people that understand the situation. X

  • Hi - the NHS requires that endo located where you have it must be dealt with in a bsge centre. Have a look at my posts on the referral pathway and on rectovaginal and uterosacral ligament endo. Also on how to find a specialist centre.

  • How long has that been the case lindle? I had an op 3 years ago by a general gynae as I got a cancellation and she used diathermy. Before that op I was told I had endo in my pod but wondering if she left it all there..... :-/ I'll find out Tuesday but I'm just curious to know.....

  • The requirement for stage 3/4/rectovaginal endo to be referred to centres has theoretically applied since centres were first developed which was 2008, but the accreditation system and list of centres on the BSGE site dates back to 2009. POD endo doesn't necessarily qualify as you can have superficial peritoneal endo there but the endo specified in the NHS contract should have been dealt with in centres since then.

  • Thank you as always highly informative! Can't wait to find out what's going on for me on Tuesday!! :-)

  • The nearest to me is Stoke on Trebt - I'm working on getting a referral to that department but it's proving more difficult than I anticipated considering we are meant to be allowed choice on NHS choices!

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