Diane
Hi Loulee; I'm sorry to hear that you were diagnosed with IC, as it is a very frustrating and painful disease. I have been diagnosed for about 16 years but probably have had it for many more. I see you are on Elmiron. This is a drug that does wonders for some people and nothing for others. One of the side effects is loss of hair. I was on it for 3 months without loss of hair but had to stop it because of bruising. (I had a TIA (mini stroke) and the medication I was on, along with the Elmiron, thinned my blood too much causing the bruising. That is another of the possible side effects of Elmiron as it is in the same class of drugs as heparin. I used to be able to control my IC with hydrodistensions every 3-4 months, along with Elavil. However, since the middle of last year, this was not the case. My IC symptoms got worse and I was in chronic severe pain with frequency of 15-20 minutes during the day and every 1-2 hours at night. This had been going on for several months. My urologist tried everything he could think of, including an epidural catheter with constant infusion of morphine and other medications, with no help. I was also started on a low dose of Neurontin and was also given Tylenol with codeine and Percocet. He finally referred me to a psychologist who specializes in chronic pain management, as well as to a pain management doctor. She increased my Elavil and Neurontin and started my on MS Contin (morphine). Believe it or not, I finally have found some relief. My pain level is down to about a 6, as compared to a 10+ and my frequency has also decreased. I'm not sure what has really helped, it might be the combination, but I'm finally able to enjoy life a little more. I'm not totally pain free (and probably never will be), but at least it's at a point where I can function. I'm sorry this is so long, but I wanted to give you my story and to let you know that there are a variety of treatments available. You really need to find a urologist who truly understands the pain of IC and who can steer you in the right path. You can e-mail me if you like. Please let me know how you are doing. Good luck to you.