hi I am new to the forum, my name is Pat and I am 57 married with one son.

[webbel57]

I have been suffering with pelvic nerve pain now for nearly five years, I have been referred to and undergone numerous test believing the chronic nerve pain I suffered to be associated with urology problems . Only to be told it is referred pain coming from my spine as I do suffer from degenerative disc disease. I have finally had some form of possible diagnosis as to the chronic pain I am suffering and problems with both my bowels and bladder and difficulty in sitting. A GP at my surgery as referred me to a consultant as he believes I have Pudendal Neuralgia having researched the symptoms they are almost identical to what I am experiencing and can be found on the NHS choices website, which then signposts you to other support sites so here,s hoping I can get some results.

[Hidden]

You are not alone! There are many of us here with pudendal nerve pain. Ask whatever you want. Do you know how yours started?

[anne77]

Pat, I have been in pain for 2 years, have been to several specialists, and have had several tests to rule everything out (as that seems to be what you have to do with this condition). I had an MRI of my spine and do have some degeneration of discs in my lower lumbar, but I was told that for my age (57) that it had no bearing on the pelvic pain I am experiencing I also was misdiagnosed with Levator Syndrome and went to a neurologist to have botox injections which are supposed to relieve the pain for that condition (no success for me/ wrong diagnosis?) Many of the symptoms of LS are consistent with PN/PNE. I am now traveling to Phoenix, AZ in March to get an evaluation with Dr. Michael Hibner (google him for great articles). I hope that I am on the right track, but as you know, the pain is relentless, and it gets very discouraging! Please feel free to compare notes, as I think it can be very helpful! Good luck

[B1hopefu]

I cannot recommend specialist women's pysiotherspy enough! Along with maybe trying a medication like pregablin, it has been my saviour. I am 9 months into pysio so it can take some time but what have you got to lose by trying it, read the book healing pelvic pain by Amy Stein, it helps explain the link between nerves and muscles etc. I also have nerve damage and it sends referred pain to my pelvic area, specifically uretha . Hope this helps

[hill-top in reply to B1hopefu]

I tried the Amy Stein exercise regime faithfully for some weeks on 3 separate occasions but on each occasion it definitely made the pain even worse with no flicker of improvement. I have had pelvic pain now for 5 years which gives rise to left sided anal nerve pain especially round and inside the sphincter, together with feelings of intense pressure, affects all sitting /walking and beloved outdoor activities: defecation means pain always excruciating for the rest of the day so have turned my day round to defecate in the evening, pain always worsens through the day, but disappears through the night's sleep (pain lessens lying down): have had botox injection, pelvic MRI, anorectal pressure tests, nerve blocks at UCL, Pain Clinic, attended London Sayer physio clinic for months, second opinion and more nerve blocks at Oxford. I really don't know if the medics have got to the bottom of what is really going on, with a very generalised diagnosis of pelvic pain/possible PNE/ chronic pain syndrome.....and all with no obvious factor having started it off, other than at a time of considerable stress. But you just have to keep trying any new possibilities and see if they work for you and we all seem to be similar but different in problems/diagnoses and what does or doesn't help.

I hope we will be kept posted on the outcome of the Arizona trip?

[webbel57]

Big Big thanks for all the reply's folk's, This is Gary speaking Pat's husband. Bit of an update, Pat's condition all kicked of in 1989 when she was nursing and she had a patient collapse on top of her, pinning her against a bed frame. Cutting a very long story short, she was diagnosed with bulges in the disc's in L3, L4 and S1....She had to quite work, we then had our son and things seemed to improve during her pregnancy. After this she had various pain blocking injections, some worked for a few weeks, others put her in hospital after sever reactions. She was then sent to a pain management team at guy's hospital, which taught her various methods of pain management..Which together with physio exercises did improve her condition. At this point I should explain, we were looking after two end of life parents, both requiring a lot of hands on care. Pat then felt well enough to do some part-time work..Like an idiot ( in hind sight ) she went into care in the community, then when pulling a hand patient hoist re-aggravated her back problems ( that was 5 years ago ) . Since that day, things have got progressively worse, with new symptoms that not only seemed to confuse us but also the hundreds of doctors and consultants we have seen.....6 MRI's, 4 consultants, God knows how many hospitals and tests...Later, Tomorrow we head to see yet another consultant...This one should be interesting though, he's the one who refused to see Pat when she first had here injury..Telling her to go home and take paracetamol....I will let you know how things went!!!!

[anne77]

Thank you all for every bit of information!! I will keep you updated after my trip to Phoenix in March. It is just so hard to wrap my head around the fact that with all of the specialists, MRI's and other tests and modern medicine that we are ALL still suffering so much!!