Uro says I should be better by now?????

[Stacey65]

Oct. 19th I had my last DMSO/Heparin treatment. I went to see my Uro today and he said I shouldn't be in pain anymore. He said between the 6 treatments and being on Elmiron since Sept. 5th. I should be better. He said Elmiron takes 6 - 8 weeks to work, well it's not! He said I am the only patient he's had that hasn't gotten better from the treatments. I take Vicodin ES just to be able to make it through the day. I am on Short Term Disability from work.
I had an MRI last month because of severe lower back pain, but everything showed up fine. I had a Cat Scan 2 weeks ago, and everything showed up fine. I'm having a Colonoscopy next week. My Uro thinks my bloated belly is from a bowel problem. I told him that the more I hurt the bigger it gets. He thinks its gas. He also wants me to see my Gyno in 2 weeks to check for Endo. He said if the 2 tests don't show anything then he will have to do a Cysto/Hydro.
He wrote a note for me to have another month off, but he just kept saying that he doesn't understand why I'm not better. Well if he doesn't know, how should I know?
I am in pain every day, sometimes it's not that bad and sometimes it's horrible. It's either my bladder, my back or both. Sometimes I feel like someone has beat the heck out of me.
I just don't know what to do anymore. Anyone have any ideas?

[traceann]

Oh I wish I had answers for you! But I do know that Elmiron takes up to 3-6 months to see some improvements and 6-12 to feel the full benefits, so I can't imagine why he's saying 6-8 weeks??? If only!! That would be great, lol.

I guess I can say hang in there on your Elmiron - it took me about 3 months, I wasn't perfect - but way better than where I was starting from! And after 8 -12 months I was doing really well. One other thing is DMSO doesn't work for everyone - just like every other med in the IC Game, lol. I would gather all the Elmiron and other meds/treatments info you can (this site has quite a bit) and take it to your doctor, and go from there... I would also seriously question why he thinks 6-8 weeks is the time frame for feeling no pain, lol ;)

Hope you do start feeling better soon!!!!!!!!!!

BIG hugs!

[glassd18]

Stacey,

I present with both bladder and back pain too. It took 4 months of taking Cystoprotek to have any relief. I also am bloated all of the time. I had a CT scan last January, and it came up negative, and I'm also considering an MRI to look at my lower back, but am not convinced that it will show anything except empty pockets after paying the bill.lolololo IC and IBS sometime go hand in hand too. I'm with Tracey on this one about your md's time frame for pain. It can take months to feel the benefits, and of course some do not get any relief from it at all. We are all different, but I hope you do have success with it. Try to hang in there.

[patricia1]

First off I am so sorry you are feeling so rough. Sometimes I really think that uro's and doc's dont understand the full amount of pain IC patients can have. I have been to countless uro's and the only person to completly understand my pain and stand by me since the get go is my gyno. To me he has been my saviour...

But like traceann stated it can take anywhere from 3mth to 12mth to find the full benefits of Elmiron. It is not a medicine that can work overnight. The only thing I can say is give it some more time to see if it starts working. Also there are other treatments to try. This is what make IC so unusual because no one single treatment helps everyone. Just because it works for most of his patients do not mean that it will work for you. I do hope you start feeling better soon.

[babygirlh1]

Hi Stacey

I think it is unfair for any doctor to tell a patient when they should "feel" better. If no cure exists for IC, then how does he/she expect the symptoms to disappear?

Elmiron does not work for everyone. It took almost 6 months for me to start getting relief and it was not through Rx alone. It was a combination of things.

Are you considering seeking another doctor? It sounds like your doctor is more interested in dismissing you instead of helping you. :confused:

I am sorry you have to deal with this. It is bad enough that IC patients have to deal with chronic pain and then to add the stress of a doctor that thinks you should be "cured" makes our lives more frustrating! :rant:

If you like your doctor to give it another try, maybe you can write down some questions and have a talk with him/her. Try to find out what the reason is for the doctor to think you should be all better when no cure exists and IC patients need lots of care and treatments.

Good luck. I hope you get some relief soon.

[Stacey65]

I asked him about having the cysto/hydro and he feels that, that is a radical treatment???? He said he'd rather I get checked for Endo. If I have endo then I don't think he wants to do the cysto/hydro, but isn't that how you tell how bad the IC is? He diagnosed me with the potassium test.

[patricia1]

I had a potassium test for the inital diagnose. Then I had the Hydro/Cysto just to make sure. There are doctors now days that will not do the procedure because they do believe they are radical and invasive. But on the flip side, not only can they see how bad it is and whether or not you have the Hunner's Ulcer, some IC patients find that the procedue helps put them in remission and they use them as a treatment option. I think that if you and the doctor have different opinons on what to try and what to do that maybe you should look for a different one that will listen and try to help more. Also there are patients that have IC and Endo also they tend to call them the "Sister Disease" I think that is the right name.

[ICNDonna]

I also question where the idea came from that elmiron helps within weeks --- most reports say it takes up to six months or longer for it to be effective.

And DMSO doesn't help everyone. I'm not certain what I'd do in your shoes. Maybe after you see a gyn you'll have a better idea of what to decide.

Sending warm encouraging hugs,
Donna

[meme]

Hey, sorry you're feeling bad. I've been on Elmiron for about six mos now and only recently noticed it helping, and I still have flares sometimes, been doing better though now that I'm on Elavil also. Anyways, Cysto/Hydro was the first thing that my Uro did, actually its the first thing that my last Uro did too. My Uro said that a Cysto/Hydro is the best way to tell if you have IC. I'm sorry that your doctor has upset you, I would be upset too. I've had doctors tell me before that if they couldn't figure out how to help me then it must be gyno related. Its so frustrating. Does your Uro do alot of IC cases? I can't understand why he would think that 6-8 weeks on Elmiron would be enough. Also, the DSMO treatment that I had made me hurt worse! Hope this helps and you feel better soon!

[debbiejean]

i had a cysto four years ago. i believe THAT is what brought on the IC. i could be wrong, but i feel that in my spirit. i know they are necessary sometimes. if you have plenty of choices in your area for a uro, i'd look for another....TRUST your gut feelings. i will be praying for clear direction for you. God bless.

[Freckles]

I would never have another hydrodistention either. I had one 9 years ago and it made me 100 times worse than I was. But this stupid uro also decided to fulgarate some tissue (which I found out later is normal tissue) while she was in there so I don't know if it was from the hydro or the cautery, but it's something I wish I would have never done. My uro wants to do another and is so mad that I won't do it. Too bad, never again.
Karen