DMSO for mild IC?

[FluxEqualsRad]

Hi everyone-

I was recently diagnosed with IC and am going to talk to my uro about what treatment to do. I am fortunate enough to have a very mild form of IC, and was wondering if there was anyone else out there that has mild IC and went with DMSO instills?

My main symptoms are pelvic pain/pressure and some bladder irritation. I do not really have a problem with frequency/urgency, except for maybe 1 or 2 trips to the bathroom at night.

My main concern is whether or not the DMSO would do more harm than good. I really do not want to make my mild IC any worse!

Any advice?

Thanks, Erin

[Claredale]

It's hard to say. We all react diffrently to the treatments. It is my opinion that you would probably benefit more than people with severe IC. I believe it made my IC worse, but I don't know if I already had severe IC before the DMSO or after. My first hydro showed mild to moderate and I had symptoms similar to yours. I went into remission for a few years and then when the IC came back it came back with pain 24/7. That is when my uro tried DMSO. My current doctor as well as my prior doctor both specialize in pelvic pain and IC and neither of them will even do DMSO treatments anymore except for instills which the formula is not as strong.

T83

[elamar]

I too was diagnosed with mild IC. My main symptom at the time was the constant overwhelming urge to urinate. It drove me nuts. Anyhow, my doctor refused any other treatments until I went through 7 weeks of DSMO instillations. Every week I got progressively worse. It is a horrible procedure to endure. The doctor ignored the fact that I got worse and said it just takes all 7 weeks to see a difference. Well, the difference was that I was out of my mind with pain. I feel like it set back my recovery significantly. (not that I am "recovered", but in much better shape now). The worst part was that once the 7 weeks was done, the doctor shrugged her shoulders and said there was nothing left for me to try. I just got passed on to another doctor. Even then, knowing it would take at least 3 months for me to see the next doctor, she refused me any pain medicaton - she refused it the whole time. She then said I was a drug addict. I just looked at her and basically said how can I be a drug addict if I have never been given any? That doctor was crazy! Anyhow, I now see a leading specialist in Philadelphia. After reviewing my records, the new doctor asked my why I had DMSO instillations. I just said, well that's what was offered to me as treatment, I wasn't offered other choices. She just shook her head in disgust and says no one uses DSMO anymore. That stuff is horrible. The biggest problem you will find is this is a real hot button issue. Some people have used it and it worked well for them. Many of us used it and got worse. Most of the more progressive IC doctors will tell you it is considered outdated and "old school". I would look for other options first. There are other instills out there that don't use DSMO. Personally, it seems anytime I added anything to my bladder, it just made things worse. I'm doing better through diet, meds, and I recently started taking chinese herbs and doing accupunture. Good luck in your decision - it is a hard one to make.

[FluxEqualsRad]

Thanks for the reply, Tracey. Sorry to hear that the IC became worse for you. I'm learning more everyday about how frustrating this disease can be.

When you did get the DMSO instills, do you remember what percentage of solution they used? I heard that no more than 25% should be used, and figured that the percentage of solution had to do with how damaging it can be to the bladder. :confused:

[FluxEqualsRad]

I too was diagnosed with mild IC. My main symptom at the time was the constant overwhelming urge to urinate. It drove me nuts. Anyhow, my doctor refused any other treatments until I went through 7 weeks of DSMO instillations. Every week I got progressively worse. It is a horrible procedure to endure. The doctor ignored the fact that I got worse and said it just takes all 7 weeks to see a difference. Well, the difference was that I was out of my mind with pain. I feel like it set back my recovery significantly. (not that I am "recovered", but in much better shape now). The worst part was that once the 7 weeks was done, the doctor shrugged her shoulders and said there was nothing left for me to try. I just got passed on to another doctor. Even then, knowing it would take at least 3 months for me to see the next doctor, she refused me any pain medicaton - she refused it the whole time. She then said I was a drug addict. I just looked at her and basically said how can I be a drug addict if I have never been given any? That doctor was crazy! Anyhow, I now see a leading specialist in Philadelphia. After reviewing my records, the new doctor asked my why I had DMSO instillations. I just said, well that's what was offered to me as treatment, I wasn't offered other choices. She just shook her head in disgust and says no one uses DSMO anymore. That stuff is horrible. The biggest problem you will find is this is a real hot button issue. Some people have used it and it worked well for them. Many of us used it and got worse. Most of the more progressive IC doctors will tell you it is considered outdated and "old school". I would look for other options first. There are other instills out there that don't use DSMO. Personally, it seems anytime I added anything to my bladder, it just made things worse. I'm doing better through diet, meds, and I recently started taking chinese herbs and doing accupunture. Good luck in your decision - it is a hard one to make.


Sorry to hear about your past doctor. That was kind of the problem I was having with mine, and I recently switched to another one. My old uro is really old school, and basically suggested either Elmiron or DMSO. He actually wanted me to wait it out, change my diet and see if the symptoms got worse! He was not proactive at all and deifnately not interested in being proactive with treating me. The next day I called my primary doc and asked for a different uro referral. Unfortunately, my primary doc is also pro-DMSO. I just have no idea what to do. I have an appt. Tuesday with my new uro to discuss a treatment.

Thank you so much for your advice. :)

[HGC]

I am someone who is helped by DMSO but I would say I have fairly severe IC (used to urinate between 60-80 times a day). If you have mild symptoms in my opinion DMSO is not the way to go. It really helps me with frequency and pain but since those really aren't your symptoms I might try something else first. DMSO can definitely make you worse before you get better and since your symptoms are mild you might not want to make them worse. DMSO is not for everyone and while it has been a life saver for me I don't think I would recommend it to someone who has really mild symptoms. Also as far as the % of the solution there has been a lot of research that says that DMSO at higher than 25% can cause bladder damage. My urologist uses the 50% solution (that is what RIMSO-50) and my bladder looks better today then it did 16 years ago. Good luck and I hope you find a treatment that works for you.

[Claredale]

My treatments were about 10 years ago when my IC progressed. I didn't ask the percentage. I just followed the other little ducks and did what I as told. I learned after that doctor even though he did the best with what knowledge he had. I am not knocking him by any means. I learned that I have a voice in my treatment. I learned how to research everything I could get my hands on. I didn't know about this site at the time, but I did read the ICA website over and over again. It was nice to find this site and actually be able to converse with people dealing with the same issues. Right after my DMSO treatments, I no longer did anything just because my doctor said. I found a doctor I could trust and could ask questions and get answers.

DMSO is a hot button. The people that I know through my doctor and getting to know on here that have severe IC and went through DMSOs did not receive much benefit at all from DMSO except for one person. She doesn't go through the 6 week session, but she has it during her hydros. Everyone else would say that they are worse because of it.

10 years later and after an interstim and finally the right combo of meds, my symptoms have decreases so much. I am to the point during the day that I can forget that I have IC. I have even eaten things that I would never have dreamed I could eat again without any problems. It is almost like I have to ask my doctor if my test showed I really had severe IC. Which Dr. Ragi would say, yes I did! I am not yet in remission, but I may be as close as I am going to get to it and I love it!

T83

[leelee88]

I really believe that DMSO has to be a personal treatment option. I for one have did a lot of research and feel it is not right for me.

Here's a link you might be interested in:

http://www.ic-network.com/forum/showthread.php?t=22386&highlight=DMSO

[FluxEqualsRad]

Thanks for all the replies, everyone :)

I'm really starting to feel that DMSO is not going to be a good treatment option for me....

[GriffsMommy]

I also tried DMSO after I did not get relief from my hydro/cysto. I actually had the first one done in the office the same day that the uro suggested them to me. I had heard about it but had not done a lot of research on it yet because I didn't realize I was going to be starting it.

I ended up having six weekly treatments done. The first one that was done as I said at the first appointment that it was suggested to me was 50% which is the strength right out of the bottle.

When I came home and read the info here on the boards and then read that any concentration above 30% could cause damage to the bladder wall and that only 25% solution should be used.

When I went back the next week I asked that they only did the 25% solution and diluted the solution out of the bottle with sterile water so it was half sterile water and half DMSO. I could tell that no one had ever asked for this before because the dr was a little surprised and confussed because he didn't even know what concentration the DMSO was out of the bottle. He was willing to do it for me though since he felt like I should really give the DMSO a shot.

I did five more treatments at the 25% and in my case I don't think it made me worse in the long run but I sure felt like crap for the rest of the day after getting the DMSO. It was hard for me to hold it for the 15 minutes they told me to but I always made sure to wait there in case I had a problem voiding it out I would still be there, luckily that never happened. I pretty much just felt achy and felt like I had the flu in my pelvis the whole day that I got it done. The local uro who was doing them seemed pretty shocked that it haden't helped me any and that's when he told me that I needed to see a specialist because he didn't know any other treatment options to help me. I'm glad I tried them so I can say that I tried them and they didn't work since for some they really help but I'm also glad I'll never have to have another one again.

[Paininthe*.*]

Flux, I'm one of those that DMSO has helped immensely. I tried everything else...Elmiron for over a year, Elmiron instilled, a couple of Heparin instills (caused cramping and worse urgency), aloe, etc etc. I was scared of DMSO because most of the people on this site have had bad experiences. But I was desperate, and my URO recommended them. I just finished my 8th one, and I am 80% better. Most days I don't take any kind of meds at all. Yes, they do increase your symptoms the first few times you get an instill, but you have to gut it out to know if they will help. I felt a difference about 3 wks AFTER my 3rd instill.
Unfortunately, it's just something you have to try. But since your IC is mild, try some of the other, less irritating treatments first. Have you tried Elmiron or Heparin?

[FluxEqualsRad]

Elmiron in the pill form is too expensive for me (I have really crappy insurance right now). I do want to talk to my uro about doing a less irritating instill. I didn't realize they could do Elmiron instills....

Since I do not have terrible problems with freq/urge (knock on wood), I think it would be a good idea to try a less irritating instill.

Thanks for the advice :)