interstitial cystitis

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Thank you so much everyone for you imput. It has been quite brilliant. Prior to her appointment this Friday I emailed my patient and asked whether she knew if she had Hunner's ulcers on the inside of her bladder and explained 5-10% of IC sufferers have these and that they are diagnosed via a cystoscopy with hydrodistention; a procedure performed under general anasthetic. Her reply follows:'I had a cytoscopy in January. There was no mention of Hunner's ulcers but the consultant did say my bladder was bleeding from absolutely everywhere. I had to stay in hospital overnight because they put a catheter in. They said when it started to look clear instead of blood coming away I could go home. It took till the next day before they would let me go because it still

wasn't completely clear. When I got home I was passing clots of blood from my bladder. My bladder burns me alot and i do think i react to foods. I do drink tea(decaf) but none of the other items you listed. For some reason I can't tolerate certain herbal teas anymore. For instance raspberry leaf tea, Echinacea tea and green tea have all given me a migraine. It was about 2 years ago when things got worse for me and I blamed the candida at the time. I don't know whether it was down to antibiotics or medication but i had episodes of really severe burning down below like someone had poured acid down there. I went to the doctors at the time and they said i had a bladder infection but after taking the antiobiotics the symptoms remained the same, even though they said the bladder infection was gone. It seemed as though the burning was in the vagina rather than the bladder. That was the moment i went to a clinic and

got the candida diagnosed as candida glabrata. This has been treated successfully with pessaries that had to be made up specially. I did hope that when this was treated and I had a polyp removed that symptoms would all disappear. Although they are not as severe as they were back then my bladder still causes me loads of pain.I was also told there may be some element of vulvodynia/vestibulitis. When things are bad its hard to tell exactly where the pain comes from because it just all feels like fiery nerves.I'd give anything to be normal.' I sent her another email mentioning DMSO and giving her a link to check it out. Her reply follows:'About 10 years ago when i was first diagnosed I had weekly instills in my bladder for 6 weeks. The treatment was called Rimso 50. I don't know if this is similar to DMSO but at the time I had it done, when I sat next to

Mark he said I smelt funny. I notice what it said about side effects on the DMSO causing a body odour. The instill was put in an empty bladder and i had to hold it as long as possible. It was unbearably painful. It may have given relief in the long term.I was offered some weekly instills when i had the last cytoscopy done, which could well be DMSO. I declined the offer at the time. I should be getting another referal back to the urologists in the near future. My doctor said she would write a letter because things have been so bad. I am thinking he may suggest the instills again as he may have exhausted other options.' I trust my herbal treatment will abort such an approach which I suspect will just perpetuate the whole scenario for her.Again many thanks for wonderful imput. How brilliant is this forum!!!!! Anne