NEED ADVICE PLEASE on Uro appointment & getting diagnosed

[kablois]

Hi everyone.
My Uro appt is tomorrow finally. I have been suffering for 2.5 months now with IC symptoms and have seen a handful of doctors who kept putting me on antibiotics etc. I have felt desperate and found comfort here so thank you. I'm just really nervous about my uro appointment tomorrow. I live in Paris where doctors are considered as Gods. My GP has given me a letter of reference but only cos I asked him as I had already made the appointment. In the letter he mentions that I read about IC on the internet and that he's never heard of it. He appeared cross that I'd seen a few other docs already, but he was on holiday, then I was and I was desperate. ANyway... I'm not sure what to say exactly tomorrow because would you believe it I am feeling MUCH better today - no pain, less frequency, just a nagging awareness that I have a bladder and slight burning in my urethral area. I have only peed every 1.5 - 2 hrs today (down from every 30 mins average). I have had 5 days respite over the last 2 months and that was when I saw another uro who put me on antibiotics as a precautionary mesure anyway and said he hoped he wouldnt see me again. The nitrofurantoin, followed closely by my period gave me a dreadful flare, and I have had symptoms since then until today. I am sure I have IC but find these short periods when I feel better very confusing and am scared that tomorrow unless I pretend to be in agony she won't take me seriously. I'm just plain scared I guess and am trying to make alist of things to say and ask. Any words of advice from you more experienced ICers?? Thanks a lot - this appt is SO important for me cos this uro is on the list of the French IC association so at least I know this one has heard of it!

[ltlmiss]

I am in the same boat as you, I just seen the uro for the first time last month and am going to my next appointment this Thursday to schedule my hydro/cysto. The funny thing is that for about the past two weeks I have been feeling pretty good, no burning or pressure. Only at night but not as bad. Im not sure why, maybe because my hormones are under control because I have been on birth control regularly for a month now? I don't know why, but I have had what I thought of as an extreme case of I.C. for a couple of years now and I've came this far to not have it diagnosed officially. I could use some advice too! I guess we could be happy that we haven't been as miserable?

[kablois]

Hi - what did your Uro say on the first appt? Should I say I suspect IC or will that irritate her cos I'm supposed to be the patient and she's the doctor? I guess you never had an office cysto then? Was it the Uro who put you on meds / BC pills for hormones? My worst pain was last week during my period.

[ltlmiss]

Hey! When I went to my first visit, the doctor told me that with my symptoms, that it was looking like that was what I had. My regular doctor prescribed me Elmiron after having repeated negative urine samples and thought too that I had I.C. The first appointment my doctor did a complete physical on me and told me to do a 48 hour voiding diary and after looking at thet would decide whether to go on with the cysto. He knew that I had been in a lot of pain and said normally he would do an in-office cysto, but in my case because of the suspected I.C. it would be too painful for me. Thank god! There is no way I would be able to handle that! The doctor that I had luckily seemed educated on I.C. so I was very relieved. Don't be worried about telling the doctor that you suspect I.C., if you feel that is really what is going on you have to stand up for yourself. I've realized this after going for two years in compete agony and not doing anything about it. Finally I started standing up to the doctors that had been treating me like crap at the emergency rooms and found a good doctor that put me on the right path. Still, I would like to know if I.C. would show up in my bladder since I have been feeling better. I hope that you find the right doctor soon that can help you. Good luck sweetie!

[ltlmiss]

My gynecologist put me on the birth control pills. I had one of my ovarys removed last November so it could be possible that my hormones have been making things worse. So far something is different.

[sandramac]

Hi ladies ! Can I suggest you start a daily log of when you symptoms get worse ,with your cycles and food's eaten etc. That's always a big help for you and for your Doctor as well. So you both have a idea what will be your own trigger's. Good Luck !
Hugs Sandra:cat: :cat: :cat:

[lan]

Hi Kablois - If your doctor is familiar with IC, she will understand that it is not unusual for us to have some days when we feel better than others. It is probably best to be honest about how you have been feeling. Your doctor should take into consideration how you have been feeling for the past 2.5 months - not just how you are feeling on the day of your appointment. I hope that your appointment goes well. I am keeping you in my thoughts. Let us know how it goes. Linda

[kablois]

Thank you SO much for your advice - I don't know how I would have survived the last couple of weeks without this site. Only a few hours to go til I see the Uro. It's crazy to get so stressed over something that should be a step in the right direction, but this thing has been sending me mad and I have felt so alone with it - I'm keeping my fingers crossed.