I am a 51 year old mother of 3 daughters who lives in Sydney.For 3 months I have had pelvic, vaginal and vulval pain /burning[For 10 years before this on and off had milder left pelvic pain was told was adenomyosis but I think now was PN.].I had several very bad attacks like a searing hook in my vulva that left me desperate and in tears.I went to my gp who had no idea and just did a urine test, then to my gynaecologist .An ultrasound completely normal as was an internal examination.He thought it was the round ligaments!!I asked if I could see a physio in desperation, so he referred me to one physio who just said I has irritated nerves from a bad attack of thrush!!Then I went to another pelvic physio]Barbara Hungerford] who said she thought it was Pudendal Neuropathy.I then went to see Prof Vanscaille and Sheryn Davis.Prof Vanscaille examined me internally and discovered a painful pudendal nerve when touched and an enlarged bulky sore left obturator internus muscle.For many years I have had sacro iliac joint problems and am very hypermobile with an unstable pelvis.Prof Vanscaille thought the sacroiliac joint and obturator muscle have something to do with my PN plus he thought one leg is shorter than the other and i should see a podiatrist!He said I have mild PN and the nerve is not entrapped, he didnt offer diagnostic injections as he seemed pretty sure of the diagnosis.So........my plan is to continue with physio and self help, and then maybe botox injections if not enough relief from physio.I am seriously considering going up to Brisbane to see Peter Dorman after reading about him on this site.In Sydney there doesnt seem to be a physio who knows about both the pudendal nerve and scaro iliac joint problems and their interaction.I ve thought of seeing Sheryn for the nerve and Barbara for the joint, but not sure what to do.Self help has helped me quite alot-I avoid sitting and use a noodle cushion when I have to, I avoid bending and squatting, and am trying not to strain when going to loo both number 1 and 2I also try to keep the pelvic muscles as relaxed as possible..I have had two really good weeks with only low level pain, then yesterday and today its worse again!Maybe because ive had a gastric bug, I dont know.This condition obviously flares up and down, and I have to accept thatI am grateful I havent had another agonising attack since I stopped sitting.I really would appreciate anyones ideas about physiotherapists and physio treatment.I am .interested in trigger point release , Sheryn says she does it but not at present for me as she doesnt want to stir things up too much yet.Also, I was offered Endep but have read about nasty side effects, I dont want to be zonked out.Does anyone have any experience of this?Thanks everyone, wishing you all a pain free or at least tolerable pain day!!
From Mirandamolly.