thank you everyone for the lovely welcome and your great replies which all contributed something for me to think about. really nice to have a response out there and so quickly!
sorry you are in a flare amber - really hope that the IC pain does quieten down again soon for you. it is interesting that you have crps elsewhere, which does make one wonder about the possible nervous system irritation linking the two but it sounds as though the ic for you may have a local inflammatory element that somehow rises and falls.

i am really interested in ada's reply and haven't heard the term pelvic congestion syndrome. i don't really have any gyny synmptoms and had a clear laparoscopy - not sure if you have more probs along these lines than me. going to look up about PCS! think sometimes all these syndromes have so many overlaps and may consist of mixture of overlapping processes in different proportions?! no-one has ever suggested trigger point or other local injections apart from the nerve blocks. i had lidocaine in my bladder in the past and an iv lidocaine both of which didn't help but i have never heard or tried the patches and will try and ask my pain specialist. glad you haven't gone through unnecessary trauma of bladder removal etc but i feel for me it as least made me know it was phantom and at least now i know i just feel i need to go and don't actually rush to the bathroom, giving me more confidence in that respect when out etc., but painwise and sensation wise a waste of time! what is an IR Ada (sorry if being obtuse!)

Ali - you seem so young which seems so unfair that you have so much pain to live with. i was 18 when my life was taken over by pain (am now 29) and that felt young and like i was missing out on key growing up things. do hope you get some young stuff in! you write so mature and seem so knowledgeable so cheers for the ketamine coma links. my MPhil ( that i am having to break from) is/was looking at both the diagnostic and communication problems of chronic pain in terms of western medical philosophy for the patient experiencing it, but i was also looking at chronic pain in 11-17 yr olds particularly. i work with a professor of children's nursing called bernie carter and she has written some lovely stuff on nursing children and young people with chronic pain and really fights for young people to be listened to and respected. if i get back to a btter place with the research you may be a great person to include to tell your story and how it has affected your life - which was a element of the whole project set against the theoretical background of pain as medical problem but also deeply human experience and agony. anyway thought you'd like to know some of that if it makes sense at all!

sandra also thanks for your lovely words and sorry you have such bodywide symptoms. kind of reassurig for me but obviousbly awful that you have some of these visceral sensations. everyone seems to experience it differently. i don't have squeezing sensation fortunately, just burning and only really my stomach somtimes burns a bit and my GI tract, the pelvic pain goes up into the kidney area but again i don't seem to get the sensation in the way you describe. however is still showing the visceral sensation can be altered! i think you analysis of my situation may be accurate - i don't know much about the relaionship between phantom pain and crps exactly, but the bladder pain seems to have triggered bothe sensory, autonomic and mild motor (twitches and jerks) effects. damage to the nervous system does seem to be often an enigma. i just hoped that phantom pain may subside but it hasn't at all.

again thank you all for your overwhelming support and kindness. lots of love to you all in your various situations
sarah