saw my uro today

[hopeful]

Well another day from hell at the uro. office. Ya know i should have realized from the first visit who I was dealing with and not given him a second chance but I had a lot of ?'s and he asked me to come in. My first visit consisted of him doing a procedure and then telling me I had IC he gave me all negative feedback and no hope....so leaving that first visit left me with a lot of ?"S
I took this am off from work to go in and do you know what his first words were......well beside how was I, I returned the ? to ask him how he was doing and he said stressed! I said stressed? He said yeah stressed Im stressed....he went on to tell me how he broke out with singles lastnight.....boo hooo I thought are we gonna talk about your prob or mine!!!! at least shingles is treatable.....but the nice reserved person i am said oh im sorry that can be painful. I work for Kaiser in adult med and so we had been emailing eachother back and forth a few times reguarding my ? but then he said it would be better to come in since i had so many and i agreed. I had sent him some info i found on the net via inter-office mail hoping that maybe him and i could start working together to figure this thing out. Boy was I wrong What a jerk....he went on to talk about something i had no clue as to why he was even talking about this matter i waited patiently until he was done and said ok here ive done all this research, ive gotton on the ic diet ive tried prelief and benadryl, and read these books and kept a voiding diary and good log i went on to ask him some ?s and all he kept telling me was you keep thinking im the expert and im not we know nothing about this illness and you have to be the expert he was very non sympathetic and i asked him why do you in the future want a biopsy and he said to confirm ic diag and to make sure no cancer i was like then what are you waiting for? he said he doesn't like the hydrodistension (sp) because it just makes matters worse not better but that he would do it anyway if i wanted to try. he said that he doesnt know if ic can cause cancer, and said the biopsy would put me out for a week and out of work that it is very painful. Well I wont bore you with the rest but he wants to do the biospy in oct with the hydro too....today im getting a new uro!!!!!!!!!!

i do want to do both these procedures but not with a doc who is not compassionate and one who has hardly any pt with IC. he asked me if i had started taking elivil i was like no because you havent given it to me yet you said there wasn't anything i could take to help. and this doc is cheif over in uro go figure anyways im searching for a new one today. just needing to vent. does anyone not stick to the ic diet and how are you doing with that? and has anyone had biopsies? was it real painful? thanks guys for listening

[Katrina]

Yes people have had biopsies....they are usually not very painful. Yes people have not sticked to the diet...infact some find they are opposite to the norm as to what hurts them. It is upsetting that a doctor says you need to be the expert.....I really think a doc should atleast say he is researching the disease.

I hope you get better luck with a doctor and find a treatment that helps you a lot.

Let us know if we can help you more.

[CareBear]

Hopeful,

I'm sorry that the Dr. visit didn't go so well. I hate it when that happens!! Please try not to be discouraged. Press on and find a new doctor. I have yet to work with a Urologist. I was diagnosed and have work with a psychiatrist who specializes in pain management. She got me started on meds and got me feeling better. Now my PCP calls in my refills. When I feel I need something, I research and then call him with the med I would like to try. Its not a perfect system, but it works for now. I'm sure at some point I will have to see another Uro, but all they wanted to do was more procedures, and I'm procedured out.

I do not follow the IC diet. I have found that I can pretty much eat what I want as long as its in moderation. I don't drink, so I can't vouch for alcohol. My biggest trouble spots are stress, not enough rest, and overdoing it physically. Every once in a while I will get impatient and start moving furniture by myself and I always pay for it!!! I have learned to take it easy--a normal paced walk is about all I can handle and I make sure I get lots of sleep. Stress is a sure killer, but the Zoloft helps curb the physical reactions to it. If I become overly stressed I have Zanax (Xanax?) however it is spelled to help control that. I only take it when absolutely necessary. But stress=pain=IBS=panic attacks=nausea=misery so I am careful to properly manage my stress, as much as I can control. I have also learned to be more laid back and let things go. I used to be a very Type A gogogo person. No longer, I have learned to just let things roll.

Well, sorry about my long message! Sometimes I just ramble!!!

Hope this is helpful!

Cari

[donutgirl]

What a jerk!!! I hope you find someone that will listen to you and work with you. There are good uro. docs out there. I have a great one in NC that ICers from all over the U.S. come to see. It makes a big difference to have faith in your dr.even if there is not a cure to this disease.

[vm]

When I was first developed IC I stuck to the diet like my life depended on it. It was extremely important for me. As I found treatments that worked I was able VERY gradually to add back in some of those foods. But diet was KEY for me for quite some time.