dmso bladder instillations

[MASCARA101]

Does anyone have any experience with the dmso (dr administered) instillations? I have been reluctant to try them, and have tried just about everything else. I am so sick of being in pain and hope these could be the answer. Also, after getting these instillations....Do you need to adhere to the ic diet? Is this a therapy that's continued lifelong? Are there any potential risks anyone knows of?
Please share your success stories as well as non-success stories with me. Thank you!:pray:

[my3boysmcr]

I did 2 DMSO instills and it made me miserable. The pain, burning, frequency and urgency were much worse with the treatments. After the first one, I complained to the doctor that it made me feel worse. I was going twice as often after the DMSO. She said, "You can't expect to get better overnight. I'll dip your urine to check for infection." Then she inserted the catheter, took the urine and did the DMSO instill. I wanted to cry. Not only did it make me feel like crap but it made me smell horrible for close to 3 days. I'll never do that again. I have a new doctor now and he says that DMSO should be banned in his opinion. I am now going to physical therapy and have started hydroxizine in addition to the Elmiron. Next we will add neurontin as well as bladder instills (soothing, not irritative). Good luck to you.

[elamar]

I did 7 dsmo treatments, and felt progressively worse after each one. Of course the doctor dismissed me and said if I didn't finish all 7 instills, she wouldn't be able to try anything else new. So I suffered 7 weeks of it, and then she looked at me and said she was out of options! I was referred to Dr. Whitmore in Philadelphia, PA, who is supposed to be a nationally recognized leader in IC. She looked over my files and asked me why did I have 7 dsmo treatments like I was some sort of nut! She says dsmo shouldn't be used anymore. I just looked at her and bascially said my other doctor didn't give me any other choice. I just wanted to keep trying anything to get better. I wish these doctors would form a better concensus on what is still considered useful treatment, and stop all the confusion! Some people says it works for them, but I felt it set me back for months.

[my3boysmcr]

I did 7 dsmo treatments, and felt progressively worse after each one. Of course the doctor dismissed me and said if I didn't finish all 7 instills, she wouldn't be able to try anything else new. So I suffered 7 weeks of it, and then she looked at me and said she was out of options! I was referred to Dr. Whitmore in Philadelphia, PA, who is supposed to be a nationally recognized leader in IC. She looked over my files and asked me why did I have 7 dsmo treatments like I was some sort of nut! She says dsmo shouldn't be used anymore. I just looked at her and bascially said my other doctor didn't give me any other choice. I just wanted to keep trying anything to get better. I wish these doctors would form a better concensus on what is still considered useful treatment, and stop all the confusion! Some people says it works for them, but I felt it set me back for months.

You were braver than I. I felt worse after treatment #1 and then even worse after treatment #2. I called after I saw my new doctor and told the old one that I wasnt' doing anymore DMSO. That was over a week ago that I called them. They called yesterday and said that Dr Z wants me to come in for a follow-up. She too made it seem like there was no other option. New doctor says DMSO should be banned. All I know is that is hurt like crazy and made me go tot he bathroom even more. When I went for the PST, I was finally visiting hte bathroom only once every 1-2 hours. After, it was hourly. After treatment #1, it was twice and hour and after the second one, I had to stop twice on the way back home to use the bathroom (it is a 45 minute drive to Bethlehem) and when I got home, I was in the bathroom 6 times in a 30 minute period. I called Dr E's office that day to schedule and haven't look back. I agree that there should be a general consensus among doctors as to whether or not this is a good treatment.

[mary124]

I had about 3 rounds of DMSO with 6 weekly treatments (this was in 1992 and again in 1997. Yes, they did hurt and made everything worse for a day, but, hey, I got treated like a "Queen" by my husband! Anyway, with each course that I finished I was put in remission, (one lasted 5 years),this was without the diet as I didn't know anything about it and my doctor didn't know too much about it. Unfortuntely, the last time I tried this which was about a year ago, it really didn't help me at all. Good luck with your decision.

[Claredale]

I went through 3 rounds over a several months as well. My doctor kept telling me that it would work gradually and I trusted him. I would have the treatment done on a Friday and would be so sick with pain all weekend long. My family did their best to help me, but I was just in so much pain and hated knowing that my house stunk so bad. When I would go for my treatment, either my mom or my husband would drive me since I was always in too much pain afterwards. One time, neither one of them could, so my son who just got his learner's permit had to take me. I remember watching him drive me home. He was scared to death because I was shaking so much and would just scream out at times, plus would make him stop at every other exit so that I could try to go to the bathroom. He told me years later, that he almost called my MIL because he was so afraid to drive with me like that. Bless his heart. That was asking alot out of a 15 year old!

After that didn't work for the 3rd time, my doctor did another hydro/cysto and when I woke up, he told me that my IC was much worse than before and he could no longer manage my case. He sent me to Dr. Doggweiler, which was definitely the turn in my getting the where I am today. When we were going over my history, she also said that she didn't feel that DMSO treatments were necessary and even in-humane. That wasn't the exact phrase, but it was the jist of what she said.

Mascara101, to answer your question regarding diet. All of us are not diet sensitive. I did the elimination diet and found that anything citrus was what I had to avoid. I am doing much better and have had the interstim, but if I happen to accidentally have citrus, even citric acid, I know immediately that I am in trouble for at least a day.

T83