Living with Interstitial Cystitis

I was diagnosed with IC in 2003 after having a hysterectomy and then finding out I never needed one. The numerous doctors I had been to before this did not have a clue what was going on. They even treated me for scar tissue where my 3 c-sections and 4 other surgeries were in that area. This didn’t work.

It led up to my going to a new gynecologist that figured it all out. She said she had been looking into people like me who hurt in “female” areas but had no female parts there to hurt. She did the potassium sensitivity test on me and verified she was correct. The problem is, I have still been to numerous doctors for numerous medications to see what might work better than the other.

I was referred to a very good urologist She did a cystoscopy back in November to make sure I didn’t have ulcers and thank God I did not! Right now, I just exist. That is sad to say but there aren’t too many things you can do when you are constantly in pain! I take the following medications: Elmiron, Vistiril, Baclofen, Tofranil, Elavil, Flomax, Cymbalta, Xanax and Lortab EVERY SINGLE DAY! I also have a Lidocaine gel for topical pain and a “cocktail” installation that I can give myself here at home. I used to have to travel about 35 miles one way to do this three times a week and when I found my great urologist she calls in my cocktail and I go pay and pick it up. I believe it is made of Heparin, Lidocaine, Sodium Bicarbonate. This helps a lot too.

I really can’t tell you if there is a difference because the pain is always there. Now, I have two things in the works, one of which is take 400 MG of LYSINE 3 x a day. This came from where my father had a heart attack and once he finished with his nuclear medicine, his mouth was just raw. He took this Lysine and after a few days it cleared it right up. My mouth gets that way too whenever I eat the wrong foods or drinks. I figured the other day, that if it will help my mouth, it should help my “raw” bladder too. I don’t think it can hurt anything. Lysine contains amino acids that your body doesn’t make so you have to take it to get the benefit of it.

The last resort I have come to is the interstem [Interstim] therapy. When both my pain doctor and urologist told me about it, sent me a video home and lots of papers, I said absolutely NO WAY!!! I have since realized that you can have flare-ups at any given time and they don’t just go away, they may be going for months and months. I am in the process of looking more into it to see if it is something I would be interested in because it is a very invasive procedure.

I wish you all luck with this. I just knew there was no way I had something like this wrong with me, but I guess I was wrong. There do seem to be a lot of resources on the internet so check around and see what you can find before you make any rash decisions. You are all welcome to respond. God Bless You All!