I've had pelvic pain for 10 years, starting with vulvodynia and internal vaginal pain on intercourse, which has progressed to also include other sensations like burning, tingling and pinching, and pain in other areas such as base of spine - and now also bladder pain and abdominal discomfort. My own research points towards pudendal nerve entrapment, or pudendal neuralgia - purely on the basis that reading about these conditions ticks all the boxes.
I have had vaginal and pelvic scans and MRI scans of hip and pelvis, and urine tests from time to time, and no infection or cause of pain has been found, except for a slight degree of osteoarthrits in the sacroiliac joint. (No inflammatory disease). I was referred at one time to a pain clinic and prescribed amitryptiline which I find difficult to take as I suffer from ME/chronic fatigue syndrome and am extra sensitive to medication. I manage my condition by sitting as little as possible, and when on a chair or when traveling I always use a U shaped cut-out cushion (my own customised design with cover/bag, very happy to share details if anyone interested!) I stand as much as possible and avoid movements and exercise that exacerbate the pain - stretching and bending and squatting mostly, which cause me delayed pain of various kinds the following day, as not all pain and discomfort is immediate.
In the last 6 months things have been getting worse. My GP has recently retired, and my new doctor seems to feel reluctant about referrals if a diagnosis is merely going to indicate a condition that is not treatable except by pain management. I understand diagnosing this condition is not easy. My feeling is that I would like a firm diagnosis, if nothing else in order to understand my condition better, but do not wish to provoke disagreement or cause friction with my doctor without reasonable cause.
Is a firm diagnosis possible? And if so, are there different causes for pudendal neuralgia, some more treatable than others? Does this kind of condition invariably get worse as time goes on? I am now 58, and things have deteriorated more for me gradually over time, though the condition fluctuates.
I have read that there is a doctor in Manchester (Dr W DeMello) who has experience and knowledge of pudendal neuralgia and I could possibly ask for a referral to him.
Any advice, comments, and ideas would be very welcome.