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10 years trying to get to the bottom of why I experience deep dyspareunia

rozjay profile image
4 Replies

Hello I'm 44 and have always experienced severe dyspareunia. Had 4 laposcopies, about to have a 5th next weak *sigh* . I have a 7 fibroids and a retroverted uterus. All the gynacologist say there is nothing wrong that the fibroids are not the problem and that the position of my uterus is not the problem. I've been told that it's psychological even when I've explained that it very much is not. The pain on penatration feels like something very deep inside is being hit and it is agony. Accompanied with this pain is the fact that my bladder feels like it is about to burst but when i stop sex and rush to wee actually there's nothing to come out. So for what ever reason penatration over stimulates my bladder.

I long to have a sex life. I long to have a child. I fear both will never happen. It's so lonely not having a partner. Has anybody else ver experienced any thing like this and if so how do you get the medical profession to take you seriously?

Just to give you the full picture I also have spina bifida occulta with a tethered spinal cord and regularly experience agony when emptying my bowels (pain that's nothing to do with constipation or fissures), it's pain that takes my breath away like my rectum is being burnt by the faeces as it passes through. Sometimes I cannot empty my bladder if my bowels are 'full' but not 'full' enough to empy so I have to wait needing to wee but not being able to.

Aplogies if this it too much information, it's my fist post.

Many thanks folks.

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rozjay profile image
rozjay
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4 Replies
Joolibee profile image
Joolibee

Hi rozjay, it might be that you have hypertonic pelvic floor muscles. It is not at all unusual for the doctors not to be able to find a cause for the pain, as there is often nothing to see. I would suggest that you try to find a pelvic floor physiotherapist, who can assess your muscles and, if they are too tight, help to release them. Preferably this would be someone who does trigger point therapy and myofascial release, rather than just biofeedback. I don't know where you live. In the UK, there are few NHS physiotherapists who do this work, but it's worth asking; I've been told that things are improving. I ended up going privately and doing a regular 400 mile round trip, but I was lucky that I'd managed to save a bit of money up. Your other problems might have contributed to tightness of muscles, as any pain, discomfort or anxiety can lead us to tighten the muscles. Have you come across Amy Stein's book, Heal Pelvic Pain. It suggests exercises and offers advice. Other things that might help include gentle exercise, meditation, relaxation and acupuncture. Good luck.

rozjay profile image
rozjay in reply to Joolibee

Oh my goodness Joolibee on reading your repy I've just read up on hypertonic pelvic floor muscles and it all seems to ring true. I cannot thank you enough for suggesting this as possibly being the problem. I live in Norfolk England. Thank you so so much.

Joolibee profile image
Joolibee in reply to rozjay

Glad to be able to help. There are private physiotherapists in London, if you can afford it. I've been travelling to London from NW England for almost a year, but have finally found someone much nearer to home, who thinks she can help. There are a few NHS specialist pain clinics, but there might be quite a wait for an appointment. You can look for a women's health physiotherapist on the chartered Physiotherapy website, but would need to check that they deal with this problem and not just pregnancy and weak pelvic floor. Hope you manage to find someone who can assess you.

Beezwax profile image
Beezwax

Hi Joolibee and rozjay, I also have dyspareunia. I have had it since the birth of my first child (she's now 20) and have barely had a sex life at all since my 2nd child (now 17) was born. I tried several times to tell my GP but she dismissed it as psychological. Then I managed to get a male GP (embarrassing...) to refer me to a gynae department. They thought I had adenomyosis (similar to endometriosis) but they did exploratory surgery which showed no adenomyosis and no adhesions. After that they gave up on me. Just after this I started having bowel problems and was diagnosed with intersussepcion and a rectocele. The nurse who I need to see quite often has said the dyspareunia could be caused or made worse by this, but I am not sure because the dyspareunia started a long time before the bowel problems became apparent. I have also seen a psysiotherapist for help with the problems of the intersussepcion and I also told her about the dyspareunia (it's so embarrassing having to tell everyone!) and she got me a vaginal dilator which has helped some. However I would be very interested in the psysiotherapist you talk about, Joolibee, especially as I live in London. Can you give me some more details?

Btw I also have a retroverted uterus and I can have problems emptying my bladder. If it gets bad, I find kneeling on all fours relaxes whatever muscles are there and I can wee that way into a plastic bowl (yes, yuck.. ....!). I find this position also helps with bloating issues.

I hope you manage to get your problems sorted out, Joolibee. The vaginal dilator my psysiotherapist got me is called 'Amielle', that is if you wanted to try one.

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