1st time-Ouch!

[HillaryD]

I saw my Uro today and since I haven't improved any he did a DMSO treatment with DMSO and Kenalog. It hurt like crazy when he was doing it and now I am dying of pain. I am burning so bad and if I don't pee soon I am going to scream. I had it 45 minutes ago and I have another hour left to hold it-:yikes: I don't know how I will hold it that long. Is this normal for me to have this pain and discomfort? I have to go in next Thursday for another one and I am not looking forward to it. I was supossed to go back to work but there was just no way that was happening. Any help would be greatly appreciated. Thanks!
:(
Hillary

[Sarojini]

Hillary,

OUCH! Gosh, I can never hold DMSO for any longer than 20-25 minutes, so you've already got me beat on your first one!

If you are uncomfortable, go ahead and pee. Many docs only make you hold for 15-20 min -- you will still get the benefits of the instill, especially since you've held for 45 min already!

It is going to be ouchy for a little bit now... it may burn when you pee, and you may flare for a few hours to a few days with this. I usually stay home after the treatments, too. Normally, I work the morning, then go for my instill, and then go home for the day.

You can try to ask your doc to instill lidocaine before the DMSO next time... my doc doesn't do that, but I"ve heard it makes life with DMSO a lot, lot easier.

Hope the instills help you!!

[Kathi]

I'm so sorry Hillary. When I had my DMSO, I only held it 15-20 mins. & then the tech would drain it out. Even with it drained out my first pee burned, so I can imagine how it hurts to pee out the straight stuff (sorry for all of you who have had to do i that way). :mad: Every doc is different with how long they want you to hold it, just do your best. :bouncy: That's all they can ask of us. Hugs, Kathi

[blue]

My doctor said to hold it at least twenty minutes, but the longer the better. I never could hold it too long. It seems like it would help, if we could just lay on our backs in the office, until we were through.

[Katrina]

Big, big hugs ...

:kiss:

[ICNDonna]

I don't have any problem holding it for an hour, but my doctor instills lidocaine first. That really makes a huge difference.

Also --- my first few treatments were very painful; now I'm just what I would call uncomfortable for a few hours afterwards.

Warm hugs,
Donna

[Dixiefireball]

as some of the other sweet ladies has said there doctor told them my doctor also told me to try to hold it in for 20 mins if i couldnt that was okay too.
i found as time has went on i can hold my dmso almost all night long. i normally take mine before bedtime.
I wish you luck hon i will be praying for you.
sending you warm hugs and gentle prayers
Rhonda

[HillaryD]

Oh my goodness ladies, I am in so much pain today. I came into work, but I am going home because I have got to take a pain pill and lay down. I have my next DMSO next Thursday and I am hoping it won't be as bad, but I am afraid it might be. Please keep me in your prayers. Thanks!!!
:(
Hillary

[creatingkarma]

When I had my instills, the uro told me to hold it 20 minutes & I could barely do that. I just cringe when I hear others talking about holding it longer! They would leave me in the exam room while I was holding it & I did lay down on the table. They even told me that I should lay on one side for 5 min., turn to the other side for 5 min, lay down on my back for 5 min., then stand up for 5 min. (in whatever order I wanted). I hope that this gets better for you.

Karma

[peachycajun]

Hillary I understand completly....

I am going through the same thing. The thought of another treatment sends me into tears. My doctor told me he had never heard of anyone reacting this way......now I know I'm not crazy.

I don't think these doctors understand what it is really like.

My prayers are with you.:pray:

danielle

[poetgirl]

Hi Hillary,

I've only had one instillation and I think I was able to hold it for about an hour. I was uncomfortable and experienced burning for a day or so afterward. I haven't had any since. It was before I had started on Elmiron, and I've done OK on that, and haven't had to undergo any other instillations.

I hope you feel better soon!! :kiss:

[kadi]

I wonder if the "recipe" for the instillation makes a difference too, in addition to the individual physical differences/responses we all have. ??

I haven't started DMSO yet (I will have them this summer), but did notice that the mix of meds my doctor ordered includes a longer acting painkiller (marcaine) and sodium bicarbonate (which the IC Survival Guide says eases irritation).

The Interstitial Cystitis Association website includes a list of instillation "recipes" favored by several IC specialists. Here's the link.

www.ichelp.org/PhysiciansResources/BladderCocktailRecipes.html

If the treatments are really painful, maybe you could ask your doctor about the different formulations? Or, the IC Survival Guide (Moldwin) does say the first few instillations can be uncomfortable & cause flares... (Don't know what degree of discomfort is considered "normal").

Wishing you better days - soon!

[kelly McC]

Hi Hillary,
I had my first treatment friday and it burned like a raging fire and its still uncomfortable today.:( I have to go to work but only a half day. Hope your feeling soon and take care,
Kelly