Ahhh VERY BAD!!!!!!!!!!!!!!!

[Phillyman316]

One of the worst days of my life!

My Dmso today went awful!! It hurt so bad and when I got home it was pure agony and even now I am in it!!!!!! Ahhhhhhhhhhhhh There is no way on earth I could go through this again!!!!!!!!!!!!!!!!!! I am gonna talk to my Doc about other options. It hurts so bad! This is driving me over the edge!!!!!!!!! The pain!!!!!!!!!!!!!!!

[tigger_gal]

hang on hang on.. did you call your uro to call you in something for pain?? My mom done them every othe weer for 10 yesrs, and she said the pain was horrible, but after the 3rd or 4th one she got better with them... we use to hold our hrads out the car window when she got in... we were bad children

[Katrina]

You have my prayers. :grouphug: Feel feel to start a start of chat if you need to vent to someone :grouphug:

[Phillyman316]

I called he said it would go away in a few hours!!!!!!!! WRONG! even if things would get better No way I could take this again! My dad had some pain medication but it only helped a very little! I just want to make it through this night!

[BellaTutu]

hope you get some relief and soon - I couldnt tolerate the DMSO either, made it through to the 2nd instill and said that was enough, so dont feel bad if you dont go through all of them. Some bladders just cannot tolerate it :(

I pray you feel better this morning.

[ICNDonna]

When I first started DMSO it was very painful, but my uro ordered pain meds for me so it was a little easier. Also, they instilled lidocaine a couple of minutes before the DMSO, which also helped.

There are other medications that can be instilled instead of DMSO that might help.

Donna

[Dixiefireball]

i don't know which dmso treatment you took. I do the heparin installment at home daily sometimes up to four times a day. (with the Dr's approval) Yes they do hurt like heck for some people, but all so worth it if you can just get threw the first stages of the treatments. No I don't recommand the dmso at all there is prove that some of the dmso can cause more damage then good. You can look back on some threads that Jill posted and read more about it. Sorry I don't have the link on hand.
ask your uro about trying different installments but in the mean time Call the uro's office back and don't back down you need something to help you get threw this pain your in. try drinking a lot of water to wash it out. heating pad or cold pack which ever feels best, shower, bath. which ever you like better. rest!!!!
Don't let up on them! they need to help you get threw this first stages of these treatments its unfair if they don't! remember you do have rights!
sending you hugs and prayers
Rhonda

[Phillyman316]

There is just no way I could do this again I am still having problems.

[Nicoledenise]

Hello,

I had Heparin cocktail instills when I was first diagnosed and it really did not hurt that bad. I dont think Heparin is the same as DMSO. I think they are different. What I had was similar to liquid Elmiron. Maybe try the Heparin Cocktail instills.

Nicole

[kadi]

I had DMSO cocktail instillations (DMSO, heparin, solucortef, sodium bicarbonate & marcaine) for a year. The first one was awful, barely made it to the bathroom only holding it 10 minutes. Took Darvocet & still had pain for a couple of days. They say the first 2 are the worst because they provoke the mast cells in the bladder to release all their contents. After the first two, there isn't as much of the noxious stuff to release, so they're not as bad After the series of 6 once a week instills was over, I had them once a month, on a Friday. I usually planned a video at home that night & no-plans for the next day. Overall they did contain my pain & reduce my frequency, so they were definitely worth trying.

I now do heparin/marcaine/sodium bicarbonate instillations at home. These do not hurt, in fact, after instilling the meds, I usually feel great. I sleep through the night. And, if I wake up in a flare, I can do an instillation & still go to work. I do these 3x a week up to daily if flaring.

Hoping that you have some relief soon, it will get better...