My never ending story....: I haven't... - Pelvic Pain Suppo...

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My never ending story....

electricjaws profile image
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I haven't posted for a while due to being ill so have decided to post and let you know where I am at so here goes...

After having two transvaginal injection a few months apart I decided not to continue with having the other two dr de mello decided to try (he said I had right sided pudendal nerve entrapment)

The second one made it worse, so I asked my g.p if I found out all the relevant info for him about c.t guided injections would he refer me to Dr Greenslade in Bristol,he said he certainly would ,after waiting four months I got to see him a couple of weeks ago.he was quite dumbfounded that I hadn't been examined prior to having the two transvaginal injections and said he would not do c.t guided injections without examining me and ruling out other possibilities,after examinating me(once I climbed off the ceiling and stopped crying!!) he said he would write to my g.p recommending I see a Dr Mercer JOnes at Gateshead hospital because he feels I may have what is called a rectal occult prolapse and if so that can be effecting my pudendal nerve on the right side he explained it to me (explained it is not simpler like a rectal prolapse that bulges out of your anus)but is actually further up the bowel and unless someone knows how to look for this then it can get missed so that's why he recommended I see this guy at Gateshead hospital just to rule this out first but if it is this occult prolapse it can be helped ,so my partner and I went to see my g.p Monday and he was happy to refer me again so I felt I was at last getting somewhere (well at least ruling things out) albeit I may have to wait a bit.........until the phone rang yesterday it was my g.p ,he said he was having a problem referring me to this mercer jones as he has had a bad accident and will be off work for several months..... (What is the chances of that happening poor guy!!) meanwhile that has left me high and dry again as my g.p doesn't feel he knows what to do ,so wondered does anyone know of where I can go and who can I see for tests for a "occult rectal prolapse" as I am struggling badly , and dr greenslade and g.p can't give me anything for the pain as gabepentin and pregabilin haven't helped (plus I gave multi chemical sensitivities as I have other health issues )if anyone could help me on here I would be grateful xxthanks

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paulyne profile image
paulyne

I absolutely know where you're coming from. I've had right side pudendal nerve entrapment since prolapse surgery 5 years ago. The private hospital wouldn't admit I had a problem and it was awful having a pain no believed I had until eventually getting UCH to help me last year. I had to wait for my local health authority to sanction the appointment and when they did I had to wait over a year for the appointment and have had nerve blocks but now have another rectal prolapse, I wonder if mine could be an occult prolapse. There are so many of us suffering and waiting and waiting with our lives on hold and not enough doctors understanding this in the uk. I got in touch with an Australian PT and wonder if what she told me could be of help to you while you are waiting until your doctor goes back to work. I've coped what she said:

Consultation with a pelvic floor physio can provide you with an assessment of your existing pelvic floor muscle function and help you understand your individual situation. There is specialised EMG equipment used by some physiotherapists that can assess how much nerve input the muscles are receiving.

Hope that may be of help to you. I've got a few appointments coming up at the end of March at the pain clinic but I'm hoping to be examined in April, as it's been years since I've been examined and will ask about occult rectal prolapse.

Please keep in touch to let me know how you're doing.

Sending hugs x

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