I need advice

[daisi24]

Things are not good and I am so frusturated:headbang:! I have had 8 dmso rimso treatments and they are only lasting me for a week. After the week wears off I am in constant pain, going to the bathroom every 30 min or more and if I dont make it to the bathroom I wet my pants. I am really upset because my dr wants to take me off the elmiron after only being on it for two months and is making me wait for two weeks or more in between treatments. When I tell her that I cant handle that long she gets mad and says none of her other patients need this many treatments done and many go for six months without one! I really dont know what to do I just started a new job and its so embarassing because I am going to the bathroom all the time :( Also I start college soon and I just need some kind of option that will help me! I am so sad and feel horrible right now :( Oh yeah the only other advice the dr gives me is to lose weight and I have been exercising every time that I am feeling okay which isnt very often. Has anyone been in this situation with the instillations wearing off so fast and if so what did you do? Am I truly out of options because she says if I dont agree to the treatments every two weeks or even longer I have no options:shake: :( Please :help:!

thanks,
tara

[christalbean]

Hello Daisy,
I don't know how long you have been seeing your uro. but if I were you I would try to find another. One that is more sensitive to IC pain. My uro. allows me to come in whenever needed. And right now that is once a wk. He also allows me to have the hydro. done every 4-6 mos. which seem to help me more than the instillations. And I do understand what you mean about the instills. wearing off soon. I just had one yesterday and am feeling bad already. Sometimes they help and sometimes they don't. It's a hit or miss kind of thing!!! :headbang:
It's very likely that there is someone in your area on the board who could let you know of a more caring uro.
Hope this advice helps.
Don't give up, I know it's hard...!!!!
Remember we care and understand!!
:grouphug: :toilet:
Christal

[Portia17]

Tara

What is wrong with that nurse? I am going to be learning how to do them at home not the dmso but other mixture like the heparin, lidoacine and something else and I can do them every day. I think she has me set up to learn next week. She told me dmso can only be done once a week and I am going on my 9th out of 14. I will be learning how to do it at home but like I said not the dmso just other ingredients. Ask her to show u how or get another uro that will do that

[Sarojini]

I would also go for a second opinion somewhere. I had 10 DMSO treatments, and was still in pain (in fact, it was WORSE) about a year ago, and the uro I was seeing seemed irritated that I was not better yet at that point. I didn't feel I needed to be treated like a crazy woman just because one treatment didn't "fit all" -- so I chose another urologist, and now have a treatment regimen that is working for me :)

[tigger_gal]

I would look for another uro too.. My mom took the dmso (rismo) treatments and they helped her greatly, but lik Jen said its not a one treament fits all.. gggrrrr some doc's!!! Your doctor should know that it takes elmiro 6 to 8 months to take effect..
I hope you find another uro who treats you like you deserve to be treated..
Brat

[applebetty]

I agree with everyone else. You need to find another uro doctor. I tried all the instills and the last one I tried was heparin/lidocaine and that helped for two days. I went once a week (and still do) to have it done and that has been 5 years now. I learned just how to do it at home but doc is still letting me go there once a week for it. The support there helps me a lot. When you have a really good doctor that helps too. You should have slapped them. I did walk out on one doctor who kept telling me nothing wrong and wait another 3 months. Easy for him to say. Hope you find some help. :grouphug:

[daisi24]

Thanks for all the replies. I am going to tell my uro I need some more options or to be referred to someone else. My therapist told me I need to be assertive in my health care and thats the first step I am going to do! I will let you all know what happens I see the uro on thursday.

take care,
tara

[ICNDonna]

It's your primary care physician you need to contact for a referral. And I suggest you ask the primary care doc to order elmiron for you if your uro won't. It can take six months or more for elmiron to become effective. It does sound like a second opinion is a good idea for you.

Donna