Anyone have advice on these?

[bahhumbug941]

I need help. I am a very confused IC patient.
I found out today that in addition to my IC (pain-free IC), and my retention, and my horrid frequency and urgency, that I have a “hypermobile urethra”. Now, when you Google that term, all that comes up for information is directly related to incontinence. I don’t HAVE incontinence, I have retention so bad I use self-catheters several times a day. My doctor wants me to see a urogynecologist and have DSMO done, as well as the tests for IC, and to start taking Elimeron. (Don’t know if I spelled that right). I AM SO CONFUSED. First it was just having to go all the time, then it was that it wouldn’t come out when I tried to go, and now I find out that my bladder is falling into the lapsing muscles that separate it from the uterus, and my urethra is getting kinked up as a result. I have no IDEA what DSMO is, all I’ve read on here are the horror stories about it causing pain. Does that happen only when you’re an ICer with pain all ready, or do all “DSMO” procedures cause pain? Is it even safe? I guess I’m just wondering if anyone has any information on what to expect when I go to the urologist, what exactly is DSMO and Elimeron, and if anyone else has this “hypermobile urethra” with retention instead of incontinence? I am so very confused, and so afraid of being poked and prodded and put in pain. All I want is to stop living in my bathroom!! The frequency, urgency, and retention are ruining my life and I’m only 23. I don’t know what to do, where to go, or how to explain the past seven years of “I don’t know” diagnosis’. Anyone out there who can help? Please?

[leelee88]

I am so sorry you are going through such are hard time right now..I have never had the DMSO treatments so I cant really comment on them. But as far as the Elmiron I have been having really good results from it.. My bladder pain has gone down alot.. As far as retention a few things could be causing this.. PFD, Your meds, Bladder inflammation or other medical conditions. This is something your doctor really needs to talk to you about.
Maybe someone who has had the DMSO will chime in and comment about thier experience..:angel: Hope you feel better soon..

[Kara29]

I am so sorry you are so confused and rightly so. All of this bladder stuff can be really confusing especially when we call it something and the doctors are all calling it something else. I have no idea what “hypermobile urethra” with retention instead of incontinence means. Maybe someone else on here will have an answer to that. It may be time to get that 2nd or 3rd opinion and see what those Doctors call it and maybe they can explain it in easier terms to understand. You could also try giving this doctor a call back and asking him/her to explain it to you so you understand it better before you do the DMSO. DMSO is safe and for some IC folks can be a very effective form of treatment. There is a board on here where they specifically discuss the pros and cons and how DMSO works. I'm sure they would be able to answer some of your DMSO questions. You can check it out here: http://www.ic-network.com/forum/forumdisplay.php?f=48

There's a whole section on the ICN Patient Handbook that has information on: Bladder Instillations
"Older caustic therapies are now rarely used. The focus today is on using protective, soothing coatings."
New! Rescue Instillations
DMSO, BCG, Heparin, Clorpactin, Silver Nitrate
Dr. Stanley Jacob on DMSO
Dr. Ken Peters on BCG
Dr. Robert Moldwin on Treatments
Dr. Alfred Globus on Clorpactin
IC Survival Guide by R Moldwin, MD
Dr. Lowell Parsons on Rescue Instillations (DVD - San Diego IC & Pelvic Pain Conference 2005)
Treatments - Instillations

To get to it you just click here: http://www.ic-network.com/handbook/index.html

Good Luck to you and if you have any more questions, there are many people on here that will be here for you!

Kara

[bahhumbug941]

Thanks so much. I don't know what I would do without the ladies I've met in this forum! It makes me feel so much better to finally know I'm not the only one confused/suffering. Thanks again for the advice!