Hi, I'm new to the forum and an looking for support with my symptoms.
I first had problems with pudendal nerve pain about 8 years ago although it took about 5 years to get a diagnosis. The problem started after a bike ride on a bumpy track. That night I needed to go for a wee several times and then the pain in my vulva and perineum started. Gradually over time my symptoms improved after having some pelvic physio. Up until 7 weeks ago my pain was bearable. It was after having worn a new pair of exercise shorts [the stitching on the seams was particularly thick and I think it aggravated an area on my labia] that I experienced the following symptoms:
Pain on the area where the shorts had rubbed
Unbelievable pain in my bladder and I feel like I want to desperately go for a wee 24/7, it is agony. This is by far an away my biggest problem, I feel like I could deal with the pain if only my bladder would stop this 'pinging' sensation.
I am taking Lyrica [pregabalin] 125mgs twice a day with no real effect apart from it does help me to sleep. But following a physical therapy session 3 days ago the bladder discomfort is so bad I can't even sleep, it's 4.00 in the morning as I write and I haven't slept at all tonight.
My physio is NHS and vey supportive and has had some specialist training in this area. I have not found anyone else in the NHS to be particularly helpful otherwise. I have had one session at the Sayer clinic in London which I think may have been helpful although my symptoms are no better. I know it can take several physio sessions but the sayer clinic is so eyewateringly expensive I don't know when I will be able to afford to go back.
I'm trying really hard not to go to the loo too often as I know that this reinforces the signals to the bladder that I need to go when I don't. All the physios/clinicians I have seen say try and ignore the feelings in my bladder but I am at the end of my tether as the pain is excrutiating.
Has anyone else suffered similar problems and if so, what has helped?
I feel very desperate right now and can't carry on with this constant need to go to the toilet.
All thoughts gratefully received.