I had a DMSO and I'm scared

[dines]

I need some advice. I had the third of six DMSO's today. My usual urologist is on vacation and his partner did the procedure. He told me to keep the fluid in my bladder for 1 - 2 hours!! I expressed shock, saying I thought my urologist had said 20 mins, but this guy repeated 2 hrs.

It's two a.m. and my noctura is dreadful. No real pain, just great pressure and need to urinate all the time. I called the office and the doctor on call tonite is the urologist who did the job today. I told him that I'd read online to hold for up to 20 mins and asked him if he'd made a mistake, but he said no he hadn't and that he was impressed I'd retained the mix for so long.

I'm tired and hurting and scared that he's fouled up, that I held the stuff in too long, that it's going to make things worse. Does anyone have any advice for me regarding this situation? I've been sore after the other two DMSO's, but nothing like this. I don't think I'll sleep tonite. If he made a mistake, I really want to know. Thank you all for being there. dines

[Sarojini]

Hi there

Oooh, 2 hours, I don't know if I could have held the DMSO that long... I just finished with 6 of them, and my doc usually said to hold it for 30 min, but I could rarely make it that long. Usually I'd get to 20 min and almost pee my pants!!

Anyway, I know there are several others on here who held the DMSO for one or two hours... I think Donna has held it long, long times without any problems. Basically, I don't think it can harm you to hold it that long --- but I do know that sometimes, if I'm forced to hold my bladder that long, I end up flaring later just because my bladder is totally ticked off at not being allowed to do what it wanted (ie, pee immediately). Has a mind of its own, that silly bladder... ;)

In addition, let your doc know if you start having "systemic" systems... if you feel "flu-like," if you vomit, etc. The longer you hold DMSO in your bladder, the more it can be absorbed through your tissues into your system, and some people do not react well to that.

Hopefully someone who has held DMSO a long time can help you out here....

:grouphug:

Jen

[Kathi]

I stayed at the docs office when I had my DMSO & the tech just left me on the table with it in for about 20 mins & then drained it out. Hugs, Kathi:mad:

[Dixiefireball]

even my doctor said 20 mins but i do my own at home each time i have notice i can hold it longer and longer but as a beginner with this and your bladder so upset i don't think that was a good idea.
if you have a heating pad try useing that to help calm down your bladder or an never pill i have klonopins 1mg which helps with spasm when i have them if you have some pain medicine please take them. if you dont have an heating pad take a old sock put some rice in it wet it just a small bit and throw it in the microwave then place it on your bladder but make sure it isnt going to burn you before doing this. a warm tub of water may also help if you are retaining any urine to help you let it out.
you may also may have gotten an uti infection did he give you an anti to take after the treatment boy i can't believe he told you to do that. i'm sending you lots of gentle hugs and prayers.:pray: :pray: :grouphug: :grouphug:

[dines]

Thank you everyone. I know an hour and a half was too long for my bladder to hold the fluid. I AM having flu-like symptoms - hot and then very cold, chills. No vomiting but definately feeling very unwell. And the pain is continuing and the noctura is way bad. These docs, huh? Thank the Lord for all of you good people out there sharing your experiences and discoveries. Sending good thoughts out to you all. dines p.s. what can be done about the flu-like symptoms? Do I wait for them to subside or is there something I should/ could be taking to help? :(

[kadi]

I've never had DMSO, but my gut reaction is that if you're feeling chills/aches, call the urologist back & ask if you should go to ER. (I call my own doctor before going to ER just to avoid insurance hassles). I'm so sorry this happened.

BTW - do you live in the SF Bay Area? Please PM me.

[ICNDonna]

When I have a DMSO treatment, I routinely hold it until I get home, which is about an hour (or more). I have lidocaine instilled first, which makes it less irritating.

I hope you're feeling better this morning.

Warm hugs,
Donna

[Sarojini]

Hi dines,

I think kadi is right, please call your doc about the flu-like symptoms and ask if you should go to the ER, or come in to the office... especially if you are actually running a fever. It could just be the DMSO, in which case it will pass quickly, but if you're having spiky fevers and severe chills it could also be a urinary tract infection that is working its way up to your kidneys. Not fun!!! I'd go and get checked out. :)

I hope you are feeling better....

Jen
:cat:

[Audrey Rose]

Dines,
I have been doing DMSOs since January. Did weekly treatments for 6 weeks and now on monthly. My uro told me to try to at least hold it 20 minutes. Their experience is that anything less is not that effective. He and my clinic nurse (she gives me the treatments) said 1 to 2 hours is awesome and the most effective per patient feedback. Remember the goal of treatment is to replenish the lining and sooth the irritation. They both advised me to not go past 4 hours because the bladder would spasm more and you would absorb enough of the DMSO to make you feel sick. (yeah right, like any IC patients can hold it that long!!) I now usually hold it about 70-80 min ...can't seem to get much past that!!! I am so impressed that you could hold it 2 hours!! At 80 minutes my bladder says, NOW!! I have peed myself on the way to the toilet!! So now I listen. I drive home...15-20 minutes and then lie on my bed with my bottom raised to decrease the pressure and that way I can hold it longer. I also feel that the different positions gives my bladder a more thorough treatment. I have ALWAYS gotten flu like symptoms with every treatment no matter how long I hold it. But I have always held it at least 45 minutes. It is always worse if I go in for the treatment in any kind of flare. Then I puke for a few days!! We do them on a Friday and I am pretty much sick all weekend. But I do think that they are helping my bladder a lot. And especially since I have been able to hold it longer. I really do believe that longer is better!! I do not think the uro screwed up, he just maybe pushed you a little too much. He should have explained that the longer you hold it, the more effective the treatment. And then let you decide what was long enough for you. My uro always says it is my ultimate decision and responsibility to tell him what is right for me. We are all so different!!

When I was doing the weekly treatments, I got a bad urethritis from the frequent caths and a bad rash on my bottom from the betadine. I had to pee 20-30 times a day. It was awful!! I also seemed to get sicker (flu symptoms) each week. I am not sure I could handle daily treatments like Rhonda does. I am sooo super sensitive!! But I do okay now with the monthly treatments.

I have a friend who is a Nurse Practitioner in Pediatric Oncology. She informed me that when they take bone marrow for transplantation, they preserve it in DMSO. And when they give the cells to the patient, the DMSO is injected directly into their blood stream along with the cells. They have concluded after many studies, that the DMSO is what makes the patients vomit 100% of the time shortly after the treatment is started. And no matter what preventative meds are given. But they also have concluded that DMSO is the absolute safest preservative for the cells. It makes you feel terrible but it is gentle on the body. I thought that was quite interesting. Doesn't seem gentle to me....

Anyway, that is my experience. Good luck to you!! :kiss:

[dines]

Thank you everyone, once again, for sharing your experiences. It helps so much, doesn't it, to have these message boards? Your responses have given me so much information about DMSO's, I feel really empowered. It helps to have this info on hand. I find that good doctor's respond well to informed patients. My next treatment is set for this coming Friday. When I go into that small room and put my feet up in those ghastly stirrups, I won't feel so vulnerable. I'll have a much better picture of what's happening and why and be able to hold my end of a conversation with the urologist.

The flu symtoms have disappeared but my bladder is irritated. The pain has subsided, but the low-grade irriration that went after 48 hours on my first two DMSO's hasn't gone. I don't know what that means. Are those of you who have daily, weekly or monthly DMSO's completely symptom free - most, some or all of the time? Do you do the DMSO's because they help elimate symptoms or because they reduce them? I guess I'm asking - what can be expected? If partial symptom reduction makes life managable rather than unbearable, keeping up with the process seems the way to go.

dines :confused:

[lotsofgirls]

Hi Dines,
I just finished a 6 treatment series of RIMSO and I my doc likes me to hold it up to 2 hours if I can. I didn't until the 6th treatment when I retained and had to return to the hospital to have a cath put in to get rid of it. I felt like you, very very sore and in bed with meds etc. However its a month later and I think its starting to make a difference, hang in there!!!
Cath:hi:

[blue]

My doctor's exact words were hold it for at least twenty minutes. If I can hold it longer, great. He said the longer I hold it the better. I haven't held it very long yet, but more each time.

After my:

1st DMSO - I noticed no difference.
2nd DMSO - I had a good beginning of the week, the end was bad.
3rd DMSO - was yesterday, and I feel good.

I hope you get the other Uro next visit. If not, keep in mind what is best for you!

[kim mondro]

i guess im a little new to this but what is noctura?
:)

[ICNDonna]

Nocturia is when you get up lots at night to urinate.

Donna

[kim mondro]

oh i have that all the time its seems to be getting worse. last wed i went pee 15 times in just 5 hours. sometimes its frustrating because only a little will come out and it seems pointless to get up. but thanks. also i was wondering if ic keeps you up all night and if so if there are any sleeping aids that you could recommend.

[kadi]

The IC diet, Elavil 10-20mg & Ditropan 5mg at night has mostly solved my nocturia problem. Most days I get up only 1-2 times a night. If I've "discovered" a new trigger food, I'll still be up peeing every 20 minutes, but most (90%) of the time I can sleep well.

This hasn't been a cure, but life is way way better with this treatment combo!! Before the Elavil/Ditropan combo, I was unable to sleep more than 10 minutes at a time, and that was even sitting up! (My bladder used to spasm even worse whenever I lay down...) And that went on for weeks before I found a doctor who would help me...

Hope you find something that works for you-soon!!!. :pray: