I would be so grateful for advice as I am exhausted from trying unsuccessfully to get help from the NHS for my various ailments!
I have had symptoms which seem like they could be PN or PNE for a few years but over the last few months it has got worse and I feel I must find the right person or direction to follow.
My symptoms come and go in intensity - I originally had cystitis 7 years ago which developed into what I thought was interstitial cystitis. This became chronic but it was also accompanied by clitoral pain and sensitivity which I still have and which I now discover could be connected to PN.
I now have constant aching around my perineum and more particularly the anus. I also get low backache and it can go down my legs too. I went to see a women's PT recently (GP referral) but I don't think she had any idea of what was wrong as she insisted I do loads of kegel exercises "to get the blood flowing". I felt uneasy about this as I had memories of Kegel exercises causing problems before but thought I would give them a go as instructed. I did them as she told me to, in every sort of position and the next 3 days I was in agony.
I have some trouble with bowel movements as although I feel the need to go and the stools aren't hard at all, it is hard to pass them through the anus. I tried massaging around that area a while back (after reading Amy Stein's book) but it was so painful I didn't continue.
Could it be simply muscle imbalance or spasm in the rectum?
I would be so grateful if anyone has an opinion or could suggest a physical therapist who knows about PN and/or can do rectal/vaginal massage/therapy or investigation and diagnosis.
I have looked at the list of physios on the pelvicphysio website but they don't seem particularly specialist re PN from their website info.
I live in Suffolk but am prepared to travel. I am 61 and desperate to get my life back.