DSMO then RESCUE STILL PAIN :(

[angelgirl]

I had a DSMO done 9 days ago and was in significant amount of pain the whole time. By the 6th day it was horrible. I called my Practioner and she advised me that no this isnt normal and to come in and she would do a rescue instillation.

The process itself didn't hurt at all except perhaps a bit uncomfortable because of the cathetar. However, I am still in pain. Especially when I am sitting.

Has anyone experienced this? Does the pain really last this long? Even after a rescue instillation?

She has also suggested possible hydro, but after reading several posts and also having not had good experience with the instillations I think I might hold off for a while.
Any thoughts?

[Baba Yaga]

I'm sorry I have no experience with this.

:bighug:

:footrub:

[ICNDonna]

I hope you feel better soon.

Have you ever had a hydrodistention? It was how I was diagnosed and it was at that time I found it gave me relief for several months. This has been my primary treatment for all of my 31 years with IC --- I have to say that hydrodistentions have given me a life. I have read that it helps in about 50% of IC patients, which is a higher percentage than Elmiron, which the clinical trials found helped in 38%.

Donna

[angelgirl]

Hi Donna
Well I am scheduled to see the Doctor in about two weeks to talk about having the hydro. After reading some threads I anticipate, probably for me, it will hurt. BUT, I think it would be good to get a base of where my bladder is at and if I get benefit from it then that is a bonus. 31 years with IC.............YUCCCCCCCCCCCCKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKK

[Trac348]

Angel, We are all different that is what also make IC such a pain. Hydro' sfor me did'nt help my pain, but they did let the doctors know what is going on. Have you ever had one?
Where they going to put you to sleep to do it?
I hope you feel better soon.
Tracie
Pm me anytime

[Baba Yaga]

Donna, since you have had so many, could you please share if you go through several weeks of increased pain after your hydros? Or did you when you first started getting them?

[Dixiefireball]

i'm having another hydro/c with the removal of hunners This Tuesday Feb 7th. I've had so many of these done. I've lost count. I also do many rescue treatments at home.

this isn't normal for one of those treatments to hurt so long.
You may really want to think about having the hydro done so they can see for a fact that you do have IC how bad it is. If you have hunners , or even the worse case bladder cancer. All of this can be done in outpatient while a sleep. It takes any where from a few days to a few weeks to recover depending on the person. Some people have no trouble with the hydro/c at all and are up and doing there normal daily lifes the very next day. I've heard quite a few people going into remission after having these done so thats is something else to think about.
hugs and prayers sent to you.
Rhonda

[angelgirl]

Hi Dixie

It not being normal to have this pain for this long is what scares me the most. I hurt more now than I did before the dumb instillations. They haven't actually scheduled the hydro yet as they (being my practioner) wants me to speak to the doctor/uro. In the meantime I think Im not going to have another instillation.

[marsi4]

I had a cysto with hydro distention and after the procedure I had my first dmso treatment. I asked to be put to sleep. My bladder felt somewhat better after the procedures. The only thing that was awful is that I had vaginal burning and stinging for 2 days. Overall, it helped somewhat. I plan to have a few more instills to see if I can improve some more. I find that bladder dialations do not make your bladder worse. You'll either see an improvement or have the same pain you had before the procedure. It may also increase your bladder capacity. I would suggest you let an experienced uro do the procedure.

Marsi4

[angelgirl]

Well Its been a few weeks after the instillations and if you can believe I am happy to say that I'm back to my normal pain. I have since been taking Elmiron and Cytoprotek and having lots of prayer going up for me!!! I have had some good days and some bad days.

I am leaning towards not having the hydro at this time. There are a few reasons. One, I'm very concerned as to recovery time and as it is on a patient to patient basis no one can say for sure. I struggle with overeating when I am bored, or in pain, and of course consoling poor ol' me that I have to deal with this syndrome. I gained 6 pounds!!!!!!!during the two weeks I was suffering horribly from the two instillations I had. YES< it is my own fault, but I have not been able to overcome that addiction of mine and I CANNOT afford to gain anymore weight. Two, I have two teenage sons (17 and 15) and a husband who travels for work. Too keep this house running properly I need to be at the best I can be. So, maybe for now I might just try to meds and prayers and see what happens. If I still have no relief in 6 months (some say it could take a year for elmiron) then I may consider the hydro.

Anyway, I really appreciate your posts. It has helped me a lot. It keeps me informed, encouraged, and hopeful! :)