anyone else have a rectocele (recto-vaginal prolapse)? burning vaginal pain and stabbing pelvic pain. also- advice on conceiving without sex

Brief History: Endo for 3 years, diagnosis 3years ago, age: 26.

I was just wondering has anyone else got severe pelvic AND vaginal pain? Its crazy caus I often find its painful to sit down, to walk, to go to the toilet...pretty much anything.

I keep reading that exercize helps, but for me it makes the pain a million times worse. The vaginal pain is the worst. its like a deep burning and soreness. when its at its worst nothing helps. the rest of the time i just grin and bear it.

I was recently diagnosed with a rectocele (back in december) following a proctogram test (you poop and have x ray to see how your bowels work). It turns out that part of my bowel wall muscle doesnt work properly. This may be due to previous surgery or chronic constipation apparently. it is basically a prolapse of the bowel into the vagina. i cant feel any lump inside the vagina, but it is very painful and as i say all the above activities make it worse. it is definitely separate to my pelvic pain, although many things trigger both. has anyone else similar symptoms or diagnosis?im still waiting to see the consultant since 9 months now following my test. following 3 cancelled appointments i have not seen him to find out what happens next. he mentioned that i would probably require surgery, so its reassuring to know that 9 months later i still havent moved forward towards that...or any other pain management goal...(not). i have been seeing a pelvic physio who is meant to be helping me to build up my pelvic muscles as this should help the rectocele (no luck yet though after 9 months of physio).

im getting married in 4 weeks, and i just would like to have at least a pathway forward some pain reduction, and most importantly, after 4 years of no sex in our relationship, it would be nice to at least be able to share some intimacy with my husband. i know its not everything, but it often makes me feel inadequate in some way and i feel like i want to be closer to him than i can be. i dont know whether its the rectocele or the endo though which is causing this type of my pain. there are so many types and whilst im convinced they are all endo related, my consultant doesnt think that any of them are. he keeps telling me there is nothing more they can do. the only other option ive been given is prostrap etc. which i dont want to do as mentally i cant handle the side effects on top of work and studies. and also i would like to try for a family (if i can actually have sex) some time after i get married.

thats another interesting question actually ... i wonder if anyone has any experience of having a baby without being able to have sex? i asked my consultatn about IVF or something like that because sex is seriously just agonising, but he said that i just have to grin and bear it if i want a baby...there must be another way?

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  • I experience the exact same pains as you,the vaginal pain is awful,i cant have sex either!,I got diagnosed two years ago and since then I've had the injection(didn't help) and now I've got the coil fitted which worked for about a year and a half and now it's doing nothing.

    I feel the doctors don't take you seriously and I feel I'm pestering them if I keep going complaining,it's nice to know its not just me with these symptoms though as some days I feel I'm going mad! Xx

  • Oh, you are suffering – up at midnight on a Saturday. I am so sorry you have so much to deal with, and getting married soon trying to find some help for your problems.

    My daughter is 26, I am the one with endo and worry that she might develop or be diagnosed later as I was.

    I have a rectocele, that on self examination I can feel bulging into the vagina especially when the bowel if full. I have to press to the right of the anal opening to empty my bowel, this pushes/guides the waste out. It is very important NEVER to get constipated with this condition. Even if you feel you eat well and empty your bowel regularly, try doing a little more to keep everything soft and regular to get everything moving really well. Lots of water and walking help. This might alleviate some pain here. With endo and adhesions anything stuck together inside the pelvis will be pulling and stretching and causing pain.

    I do get vaginal symptoms, sore, burning plus, tearing and the feeling that the vagina is bending in half or prolapsing. I think this could more be to do with the vaginal lining. Has anyone carried out a proper hormone test or checked for thrush or bacterial vaginosis? Low oestrogen can cause those symptoms! There are mild vaginal oestrogen creams from the doctor or gels that introduce good bacteria to the vagina if there is an imbalance. Even soothing gels are available especially for this burning and soreness (off the counter at well known chemist shops). You won’t be too young for vaginal dryness if endo is interfering with your hormone levels.

    I am not underestimating your real pain, but do you think you may be really frightened of having sex with all the problems you have? This can cause another real problem vaginismus (an involuntary spasm of the muscles of the vaginal wall, which interferes with intercourse)or with dyspareunia (painful intercourse possibly due to dryness)?

    None of this may help you, but I hope you find some help.

    Good luck for the wedding.

  • Awful!! Cant tell anyone the pain I, m in!! Docs dont seem to want to know!!

  • Your symptoms sound awful, I'm so sorry to hear you are suffering.

    I think Apple 3 makes an interesting point. I was diagnosed with vaginismus and my partner and I couldn't have sex as it WAS painful but before we had even begun I had worked myself up to convince myself it was going to be worse.

    When they did my diagnostic lap for endo they injected Botox to the vaginal walls to paralyse some of these muscles. The hope is that by the time the Botox wears off (in about 6 months time), my brain won't trigger the muscle spasms as I would have had 6 months still with pain (but on a much more bearable level) and I will be able to eventually have a somewhat normal sexlife.

    It may not be what you have but if it sounds familiar, it's worth exploring xxxxx

  • I have all the same pains I keep telling my doctors and they just keep fobbing me off it got to the point that I feel so down and fed up all the time this disease is ruining my life I am so glad I am not alone and I can come on here and know I have people who understand xx

  • Yes, can relate to lots of what you have said, I also had a proctogram and have Rectocele. (you poor thing, you are so young too). I had a total hysterectomy about 12 years ago for the endo so in theory at least mine shouldn't be endo related.....I wish I could offer some advice help re pain but am still going round in the loop of Gynae / Gastro visits after two years, next appointment at the end of June, if I find anything out will get back to you.

    Not sure if you have had your wedding yet but wish you all the luck in the world anyway x

  • I do!! Ive had it for 5 months niw its agony and I cant even get to see a consultant!! I have a urostomy bag aswell if thars nit enough!! Its terryfying an d depressing, bless you I hooe you get sorted soon, xx

  • I have had this problem for 3 years now I've had a pelvic repair op then a rectal repair and I stil have the problem the consultant told me that this op doesn't fail but after my own research I've found it does the problem now is they are refusing me further tests and treatment I'm sure my GP thinks I'm exaggerating the whole thing I want a repeat proctogram but no one wants to give me it its the only way I can prove to them that's it's still there like you I haven't been able to sit down without pain for 3 years and as I'm on my feet most of the time I now have bad water retention in my legs I've put on 2st in weight in this time and I only sit down when my back can't take anymore cos that's bad as well now

    I'm now about to get my medical records from the last 3 years and begin the complaints procedure against my GP surgery also against Milton Keynes hospital and John Radcliffe hospital as they are refusing even a consultation with a colo-rectal consultant due to lack of funding apparently!!!

    I thought they all had a duty of care with all patients

    This last 3 years has obviously had an effect on my life as well as being in pain all the time I can no longer walk far I'm permanently in a bad mood and constantly tired from all this

    Can anyone out there tell me if there's any light at the end of my tunnel how did you get on

    Thanks

    Christine

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