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Endometriosis UK
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Painful sex

Hi everyone,

Was just wondering if anyone had any advice for me. I have stage 2 endometriosis and I'm having horrendous pain during and after sex. I've been told that it's normal to happen but I want it to stop. My boyfriend is very patient with me but it hurts so much. Does anybody know anything that could help?

Thanks

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Hi - it's not normal except perhaps in the case of the man being on the large side. But since you have had endo diagnosed presumably in general gynaecology it is possible that you might have had deep endo missed. Click on my name and have a look at my post on rectovaginal endo to see if you identify with it. Obviously this may not be the case but it is worth eliminating by considering requesting referral to a specialist centre. Have a look at my post on how to find one. x

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It is common actually. What are your qualifications to say it isn't ?? I'm a nurse and its common and not nice so a more helpful answer hopefully will be coming. I'm with a respected specialist centre

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This is exactly the sort of response that is at the root of ignorance about endo. But as you are a nurse you may know more than the trained experts in endo. But to anyone reading this, all the published documentation about deep rectovaginal endo make it clear that pain with sex and IBS are the two most common signs of this form of endo and it is the most commonly missed. Anyone with persistent pain with sex who has diagnosed endo should be checked out for RV endo as it can be caused by the presence of nodules and/or a tilted uterus that is caused by an obliterated cul de sac. Many women suffer years of pain with missed RV endo but if you find my post on it unhelpful then that is your opinion.

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I have a retroverted and retroflexed cervix. I don't have rectovaginal endo. My endo is across my left ovary and the majority of the left side. Thank you for your help though.

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Then a retroversion/flexion will definitely be a potential cause for painful sex. The endo you had found will be peritoneal but deep rectovaginal endo is a different form that is often missed at a lap in general gynaecology as the anatomy can look normal. Deep nodules are buried within fibromuscular tissue and can be picked up by an MRI or sometimes by a rectovaginal exam. You can have retroversion/flexion just as your normal anatomy though but there are procedures that can correct it in some cases. If you continue to have this pain I would think of seeing a specialist in a centre for an MRI to rule out deep endo that might have been missed and to see if you might benefit from corrective surgery.

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I've just read your site .looks interesting especially the immune stuff. Bit I maintain painful sex is a common symptom if Endo. Have you anything useful to say about helping it ! Asci haven't found anyone yet who has. And I don't think invasive techniques work on the whole. I'm much more into alternative approaches including diet,herbs ,pelvic massage etc. All help but nit with sex unfortunately Jan.

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Painful sex IS a common symptom of endo and I have NOT said that it isn't. I have said that it IS NOT normal for a woman. The NHS protocol for RV endo which is the most likely cause is that all endo should be fully excised as the treatment recommended in the NHS England contract for this. If you don't agree with NHS protocol for treatment of endo then that is your prerogative but this site supports the NHS and the BSGE centres. If you don't agree with excision as a nurse in one of those centres when their entire basis of treatment is focused on excision then I find that extremely worrying and would be interested to know which centre this is if it doesn't support excision. Diet changes can be very useful in helping to try not to overload the immune system and liver with chemicals and with reducing inflammation but they will do nothing for deep nodules and dense adhesions that are often involved when endo causes pain with sex as the endo is between the back of the cervix and bowel in RV endo. I have simply recommended that anyone with pain with sex should be checked out for it so I'm not entirely sure what your problem is.

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My problem is your patronising attitude! I am being treating at a respected Endo Centre where pioneering research is done in Edinburgh. Often surgery only causes more issues and scarring but is indicated in some places but increasingly other treatments arevpriving effective. I'm quite happy to go back to my consultant and recognised expert in Endo and ask him about the further exam for vagino/ rectal adhesions and I believe as well as Endo pn cerbix o have a tilted cervix . I was objecting to what I thought was you saying painful sex wasn't common as this isn't helpful. I wouid recommend the initial enquirer looks,at previous posts on pain as I found those,quite helpful and I think its most reassuring to know you are not alone in suffering. I am a psychiatric nurse as well as general and am part of research studies and Endo support groups. You are the first person here I have found unhelpful and that's a,shame .

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I have this,because Endo is on cervix. I use painkillers ..lots . But haven't really had helpful answers yet. Its really tough as want to be close to mu husband.

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I have to agree that endometriosis definitely can cause pain during sex! If this does not cut across all sufferers then it sure is a case of where the endometriosis is in the woman.

A veteran gyn told me this when he diagnosed me over 2yrs ago only for my endometriosis nurse to confirm it last year. I am not sure of what can be done to stop it unfortunately.

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I took a high count of ibuprofen which is nurofen I think an hour before sex and its still painfull but not as much. Xxx

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So if you have a lap, and have all the endo removed, will you then have painful-free sex?

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I had my lap in October and had pain during sex this symptom only started as my pain was getting extremely worse so in a way I was lucky not to feel pain over all the years I've suffered painful periods. After my lap the general gyne removed endo from my uterus and now sex isn't painful but I'm nervous everytime just incase its just luck and if the pain comes back at any time.

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Thank you. Well I hope it isn't just luck.

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