Sex: Hi new on. I have had pelvic pain... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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Hi new on. I have had pelvic pain for over twenty yrs now ! I have seen lots of drs had diffrent ops now left with adhesion ofter hysterectomy. I was free........ of pain for two yrs my husband died so i was not having sex. I have married again and all the pain is back and i am back living in my nightmare. The pain goes after three day but i have sex then it start all over. Can anyone help me with my nightmare please? ?

12 Replies

Sounds absolutely awful. What have the doctors been saying to you and at what stage do you get the pain. My pain is to do with arousal, rather than the act of sex, and although severe and very off putting for having sex, thankfully doesn't last for days! No one seems to have any answers for me. Do pain killers work for you?

Thanks for your reply. I get pain two days after sex 4 about three day that is chronic pain, then it is like a dull ache till the next time. I have notice that if i dont have a orgasm i dont get so much pain better the sex more pain! pain killers dull it a little. I do suffer with constipation which dose not help.After changing my GP 5, times in the last twenty yrs I have found one who is an Angel who will sit with me and listen to me.But as you say no one has any answers for us. God bless Carol

Hi there,

I am so sorry to read of your experience.

I don't really think that I can help, but my experience is similar.

So you may take some comfort in that you are not alone.

I had a vaginal hysterectomy in 1994 when I was 34. I was left with all manner of pelvic damage, pubis symphysis pulled apart and pudendal nerve trapped.

Penetrative sex has been almost impossible now for many years.

A physio who did wonders correcting my damaged pelvis and posture told me that with the symphysis damage, I needed to "think and act like a mermaid"!

I don't know how mermaids have intercourse, but keeping my legs together during the day is impossible.

Using the toilet, getting in the bath, driving, all these things cause me pain. But making love is THE MOST EXCRUTIATING activity. Like you, it is painful for many days, I bleed and am generally bed ridden, curled up in the foetus position.

I talked to a Urogynae who gave me local anaesthetic cream!

This didn't help. It was a bit silly really, because the pain is deep and high inside.

I don't have an answer, but I find that masses, and I mean MASSES(!) of lubricant jelly is the only way that penetration can even take place.

I know that if we are aroused it is supposed to be easier, but I can't have my legs apart that long, (sorry to be so personal, but if it helps...)

So jelly and lots of morphine and Valium are my "go to" supplies.

Needless to say, it doesn't happen frequently as my loving husband doesn't want to hurt me. But we find other ways to express our love.

Maybe, if you can talk honestly about how you feel, you and your husband could find alternatives that pleasure him without hurting you.

I am so sorry that this is the best that I can offer.

But gentle hugs, and good luck!

Sue xx

McGraw in reply to SuzyQ

Dear Sue, Thanks so much for your kind words. My heart goes out to U I think you need a Hug.! It is a great comfort to chat to someone going through the same nightmare. So pleased that you have a loving husband. I know what you say about GP I have been told a lot of hurtful things over the past. That is half the battle just some one to talk and listen to you. I did tell my new husband that I had pain ofter sex but it has not been a problem up until now we have been married a year half. It was Great JOY when I was free of Pain! So we will have to find alternatives ways now Thank you for being so personal it does help. God Bless Carol xx

Hi I too have lots of adhesions due to multiple surgeries and was painfree after my divorce. Pain developed after having lots of sex with new boyfriend a year ago. It didn't happen immediately it happened after two months of regular sex. After 10 months of agony I have been diagnosed with pudendal neuralgia and my pelvis is out of line causing muscular problems. I beleive I have pelvic floor dysfunction and the pain is high up inside where your bladder sits on the pelvic floor. I have to urinate lots after sex too. Have you been diagnosed with anything? I am just starting physio to correct my pelvis because of hears of tension from pain. I wonder if this might help you too? Thanks Melanie

McGraw in reply to tobydog9

Thanks Melanie I have the same nightmare as you! What dr did u get your diagnoses from? Only been diagnosed with adhesion after my surgeries. I have been to hell and back over the yrs seen so many diffrent drs . Next time I see my GP I will ask about physio. I hope and pray that u find some peace...... let me know how it goes. God Bless carol xx

McGraw in reply to tobydog9

Hi Melanie Just wonding how your phsio is going do you feel any benifit from it? I went back to my Dr last week had a good chat about pain he wants me to go back to the hos again said it had been a long time ago and they have inproved things ha ha, i am not looking forwars to that day!! I took our messages for him to read i underlined what you had been diagnosed because i dont know what it was he mumbled at me then wrote all what i had underlined. Then said i have to take paracetamal every day evan if i dont have pain. And take a bigger dose of my nerveending pills which makes me sleep. I let you know how i get on with things Carol ....... PS so good to chat with you knowing you are living the same nightmere as me.( sorry about my spelling)

tobydog9 in reply to McGraw

Hi sorry for the late reply I don't feel like looking at computers that often! I have had three physio sessions privately and she said that she can feel lots of problems to work on. She can feel that my scar is pulling on the structures underneath and she is trying to release that, pulling like a string on my bladder. She is also doing trigger point release vaginally, and the strange thing is this didn't cause any of the pain that happens after sex, which defnitely means it must be a spasm that happens after orgasm (how graphic sorry!). The spasm turns into persistent arousal for a couple of days, it has dulled down a bit after taking Amitriptyline but it is still there and I can't sleep for one or two nights after sex so I will have to try and avoid it, but it is difficult with a new partner as he is very keen so to speak. He doesn't even seem to mind that I am so ill, he is certain we will find a cure. PGAD is likely to be related to pudendal neuralgia so I am absolutely sure now that it is this, but maybe trigger points in my hips, abdomen, piriformis etc that the physio is working on too. All these things can impinge the nerves and years of pelvic pain from endometrisis seems likely to have caused these trigger points. This is what I have found out on studying this anyway. I was seen by Professor Luesley in Birmingham City Hospital who is absolutely certian it is pudendal neuralgia. I am trying to get referred to Dr Greenslade in Bristol as he is the expert in this field but you need a multi approach i.e, get rid of trigger points, try nerve blocks, nerve drugs, all to reset the nerves and the triggers. I don't know if I will ever get better but I am going to try everything before I decide that! I find it very hard to sleep even with Amitriptyline and I didn't sleep much on Pregabalin either. I think the years of pain has caused me anxiety and sleeping problems. I have also gained lots of weight. If you want any information for your doctor I would be happy to provide it. I have had bad infomration from doctors for 20 years so I trust myself now, not doctors, sorry to be so rude to doctors! Speak soon hope you are well. Melanie

McGraw in reply to tobydog9

Thanks Melanie its great to her from you. Thanks so much for the info. sorry you are having a bad time. I have been in Constance pain I am back to normal now, not just pain after sex any heavy activity gives me pain! I came back from my Drs I told my husband that the Dr said that I was not to have sex anymore just to see what his reply was can't we just have it once more!! They don't understand and have to have the pain do they. I just can't understand why I had been free of pain over a year now it has all came back. I have my hospital appointment to see pp specialist in Brighton next month hoping he will have some answers. Not holding much hope have been there........ have brought the tee shirt as you know all about that . We are going to France on Monday for our holiday we have a seven hrs in the car can't say I am looking forwards. keep smiling Carol

Its great to hear ppl talking so frankly about their problems, as i have only told one friend, besides the doctors. I just feel too embarrassed,especially as I haven't found anyone with the same problem. I know my problem isn't as bad as any of yours, it is difficult because it just happened without surgery or any intervention, so you feel it could go as easily if someone knew what was happening! It has definitely put me off sex, lol.

It was interesting hearing about frequent urination after intercourse, because after orgasm i find i am not able to urinate, even though i want to, and have to turn the tap on and wait until i'm able to!Cate

If anyone is looking for a good pelvic floor therapist I recommend that you look at the website and if you go under "our patients" and put in your zip or state you can see what physical therapists have specialized in this area of therapy.

If you are looking for a pelvic therapist in the UK you need to search google for Manual therapists pelvic physiotherapy Maeve Whelan and you will find a list of them there, not many of them I may add! Most are private unforutnatley unless you live in London. I have to pay privately for mine and I can't afford it but my life is worth more than money x

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