DMSO: a big washout

[Pain_Man]

I found the whole thing a total waste of time. DMSO did zip for me. Other than embarrassing me, costing me money, wasting my time and enduring the giggles of my wife who complained, during especially uncool moments, that I smelled like the canned creamed corn those of us under 40 remember with horror from the maternal table.

It was uncomfortable--tho' the RNs were very good even tho a couple were rooks. Then again the uro I saw then is a nationally recognized leader in the treatment of IC.

I would like to know if anyone else feels they were a waste of time/discomfort/embarrassment (I don't about you but I don't fancy exposing my, ah, p;ersonal area, even to very comely members of the opposite sex under those conditions).

Even, anything it probably aggravated my pain and symptoms. Anything that burns like that probably shouldn't be going in there.

Thoughts please!

[peiti]

Sorry that the DMSO treatment didn't work for you. I know exactly what you meant when you said exposing personal area to the opposite sex. I am 33 female and the urologist I went for Heparin instillation treated more men than women. So they had a male nurse. Fortunately, the nurse was nice and agreed to teach me how to self-cath when I asked for that.

[Dixiefireball]

I do the self treatment of heparin at home and it has worked for me a great deal. I do understand about showing your private area to people you dont know that is embarrassing. I found that the office dmso didn't help me much but when i started them at home and got them in my bladder i found a great deal of relief.
I hope you can soon find you another treatment that will work for you. grouphug

[momw/ic]

DMSO was a life saver for me. I went through 4 rounds of 6 treatments and had about a 3 month remission in between where I only took my maintenance meds. DMSO is what allowed me to work. I started another series of treatments in October but this time they didn't help so now I do the heparin/marcaine instills myself at home once everyday. They are helping tremendously! As for showing your privates to strangers...I had a baby in front of student nurses and med students! I figured they were going to invite the janitorial crew in next. I didn't have any pain meds either and it was a large baby who kept getting stuck so...it was quite a show. I can laugh about it now though!

[arcticfox]

I am currently on DMSO treatments. In fact I have one on February the 13th! I think I am almost done my treatments. At the beginning they were working for me, especially the first 6 ( I was getting them once a week, now I am only having them once a month). I do not think that they are working that well for me. I was just at my doctor's office for something else and I did not mention it, I should have though. But I am not sure if I am to see my regular doctor, my gyno (who happen to send me down south to get diagnosed) to see what other treatments can be given to me. I would like to try Elmiron, but not sure. I miss so much work, going for treatments and other doctor appointments (which I always try to have on my hour long lunch break. Heck! I'm just plain tired of seeing the doctor! Blah! As to the embarrassment of having the nurse give DMSO treatment, I just figure they are professional and there are a lot of other things that could be a lot more embarrassing! I try to take it all in stride. I joke around with nurse and ask her how her day is going and such. Small talk, ya know?

[carly]

They did not help me, and hurt like heck. I asked the nurse one time why it was so painful, she said it is like pouring ajax on an open wound. During the last one I had a bladder spasm and nothing would go in or out. My dr. is an hour away, and I coulnd't drive after the treatment, I was in too much pain. My mom and step-dad had to take me (they are in their 80's). I also read a study that said they did a study with bladder removal, and the one thing they had in common was DMSO treatments. I will never do them again. I know they help some people, but not me.

[dminton]

DMSO is very mysterious to me, I don't understand it at all, and someone with the IC network said that even the pros don't know what it does.

At any rate, I have decided that a few days of pain relief after a whole lot of pain just isn't worth it.

I recently had an instillation and tolerated it well, and felt better than I had in months for almost 1 1/2 weeks! I had a second treatment 2 weeks after the first, and was in terrible pain from the moment she cathed me (she did everything exactly the same as before) and I just got worse after that; two Vicodin at a time, pyridium, oxybutinin, Bextra, baking soda in water didn't even touch the pain that lasted for over a week. Thankfully I am already on disability so I didn't have to miss a week of work.

I cancelled the third appt. and there isn't even any reason to keep it, spend the money to tell them I don't want to keep going due to my last reaction, because they don't know anything about it anyway, nor can they explain why I would react so differently.

I wish I had a more positive message, but I am so confused and the overall experience so difficult, I don't see DMSO as an option for me.

[Pain_Man]

Thanks for the replies.

I knew I wasn't the only one.

Being a man complicates it. I seem to be the only man posting here, BTW. Are there any others?

Back to subject, I'm no prude, but getting catheterized for a guy is a singularly uncomfortable feeling. We can't do it ourselves, so at home instills are out for me; not that I'd try it. First time I've ever envied female plumbing!

DMSO is actually an industrial chemical, so the Ajax comparison isn't that far off the mark.

I am totally disabled now, but when I did work, I had a schedule that allowed me to get the instill and make it to work easily.

I just thought of it as part of the hoops thru which I had to jump.

So, I jumped. It didn't work.

Now I take enough narcotics to give the Eastern Seaboard numb for a year and I can actually marginally function: do minor household chores, drive my daughter to preschool, run the occasional errand for the overworked, overstressed beauty who mysteriously gives her love to the disabled, often cranky, sometimes depressed IC patient.

The older I get, the more I think that patience is the key to a lasting relationship. Love is almost the easy part. It's like making money. They say--not that I know from personal experience, yet!--that making it's the easy part; keeping it is the hard part. Kind of like marriage.

Being disabled with IC and married is, sometimes, like carrying a completely full glass of water, going double-time upstairs. It's a b----, but it can be done.

Take care to all.

To those who got relief from DMSO, I'm happy for you. I'm also relieved I wasn't the only one for whom it not only didn't help but actually intensified this nearly five year long flair I'm working on.

Cheers.

[lalarainbow]

Hi
Yes there are a few men on here ---coyotemystro- I have not seen him posting lately but he is on yahoo. He is having a hard time right now.. There are a few others but can't remember their names. I am sure some of the other regulars can tell you who they are.
Take care
~~Pam~~

[Marti]

One reason there are so few men posting is that it takes (believe it or not) even longer for men to get a diagnosis. Most men are initially diagnosed with prostatitis, although many are found to have IC and prostatitis both. It is indeed a rough go for men, and the self-cathing process is indeed pretty non-trivial.

I wish I could offer more - I have been asked to start a local support group for IC patients, and have declined on the grounds that I feel unqualified to help men. I am wrorking on that portion oif the literature now.

But if you send me a private msg I can put you in touch with a man who has IC who I met on another listserv. He is VERY knowledgable, & very thoughful communicator.

-m