Will MOVE if I can locate an IC specialist!

**QueenMellyBee** · 01-17-2012, 09:08 AM

Muy husband's job will concede to a "hardship" move if I can find a specialist in either Orlando or Tampa regions.

I have the names already of the Drs in the "Find a Doctor" section of this website. Although seeing a name on IC-network is reassuring - personal recommendations from fellow sufferers goes the extra mile. I am talking about MOVING here! Upheaving my husbands whole career for this! I wanna be sure I get it right. (Obviously I would make a preliminary appt with them, even get a second cystoscopy if necessary - just to see if the Dr. knows their stuff.......before moving entirely).

I have exhasuted the only doctors even recommended for Melbourne, FL area to treat IC, and they all seem to differ in treatment, ideas about IC, and options. I get the feeling that they are unsure about everything and guessing a lot. My faith in them has run dry.

If anyone wants to post here or PM me of Orlando area OR Tampa area recommendations - Please do! I don't care if they are Gyno, Uro, or UroGyn.

Thank you so much to anyone who reaches out to me.

**jen74** · 01-17-2012, 10:57 AM

I hate to say it, I live in Chicago IL, and I have seen the top 5 uro/urogynes here that specialize in IC. Put it this way, I am not just having my regular primary care doc trying to help me with all my issues. The only thing a uro or specialist is going to offer you are meds and bladder instillations. There is also physical therapy, interstim( which sometimes works for only frequency).

My reccomendation is that you look into finding a specialist first even if you have to travel to get to the appointment. I would not make any rash decision to move somewhere before you even see a specialist and work with him/her first. You may be disappointed. I just would not want to pick up and move to a different state without knowing if a doctor is going to be able to help you or not. That is just my opinion. Good Luck in whatever your decision is.

Jen

**jen74** · 01-17-2012, 10:58 AM

** oops, I meant I am Now just having my primary care doc try and help me.

Jen

**QueenMellyBee** · 01-18-2012, 02:45 AM

In response to that, I am not moving from/to another state..... I already live in FL. I would just be moving 1.5 or 3 hours away. So of course I would have prelim appts with these docs before making any decisions.....which I stated in my initial post.

I am glad that it worked for you to go back to a generic physician for something as obscure and difficult as IC. Most basic Doc's don't even know what it is, let alone have the knowledge and training to deal with IC's nuances. And Uros, Gyns, and UroGyns have MUCH more to offer than just instills and meds. Plentey of women on this board can attest to that; Treatment options that a Primary Care doesn't even have the equipment or whereiwithall to administer. Sorry to disagree, but it's not what I am looking for at all, and I think your case is the exception, not the rule as an IC patients.

Anyone with recommendations for Tampa or Orlando?

**jen74** · 01-18-2012, 04:58 AM

It is just that in my experience, I have seen the top urogynes here where I live and basically the only thing they can offer is different meds( which any doc can prescribe), bladder instills, which yes, you are correct, most regular Primary care docs will not do this, but some gynes will), PT which again anyone can go to PT all you need is a referral. That is about it, other than they can do a bunch of tests on you( i.e. cystoscopy, hydro) which are not really of any benefit to most in terms of treating this disease.

The last urogyne I saw was the best one in all 5 I have seen. He was really nice and was I would say the most knowledgable of all of them. But he even was at a point where he was referring me to other doctors as he had nothing else to offer. I am not saying it is bad to see a urogyne or uro at all. I was just stating that "I myself" would not pick up and move unless I was seeing a doctor for a very good length of time and knew if he/she was going to be able to help me in the long term or not. That is all I was saying. Who knows, I may eventually go back to my urogyne if I need to, just that I do not know what he will be able to offer me that he already has not. There are not that many treatments for this disease other than medications, diet, and PT and bladder instills. Most people will find some sort of relief from one of them. My biggest issue is all the side effects from all the treatments. Anyways, good luck and best wishes.

Jen