Does this seem odd for IC specialists..hmm?

[Dreamlove15]

Alright, I have been diagnosed with IC for about 2 months now. it hasn't been an easy road. But it seems to get harder just dealing with Doctors. Now I go to a doctor in Oklahoma city who is on the list in the patient handbook. But I have never seen him :/. Yea odd. It's a so called resident clinic. Anyways the teaching hospital supposedly does the most IC research in my area. Now this would make you think they are up to date with all the latest treatments and such. Nope, they don't even know what an instill is or what a tens unit is. I wonder if they even know where the bladder is these days. It makes me nervous...like really nervous. It just may be that I may have to get on medicaid and drive cross country to find a doctor who knows their stuff. This is just so frustrating. It just seems like all they know how to do is write Rx's without explaining them. They tell you to go to medication assistance but dont sign the paperwork for almost 2 months after you've told them over and over to sign it.... and experiment on your body with painful hydro's...do biopsies without telling you the results...and never putting the results in the computer. I think these are all signs im at the wrong place...but what can i do but continue until i get some kind of healthcare insurance...this sucks. I cant work to try and get insurance...im just so stuck...and I feel like they really dont care about anyone...and i have another appt in 13 days and im afraid im going to see the same Dr. who made me cry when he MISTAKENLY told me I didnt have IC because he hadnt read my chart....srry for this long post. I just want to know if im being over dramatic about the situation or if something sounds wrong here.

[windchaser]

OMG thats horrible, I also dont have insurance but my uro has saved a friend of mines life so hes pretty good but uncomfortable with me being so young, so I dont think he knows much about IC but he is willing to work with you in payment he bills you so it helps me alot im in arkansas. Anyways i would look for another uro if i were you i wouldnt feel comfortable going there either.........

[ICNDonna]

I think it would be a good idea for someone to go with you to your appointment.

Hugs,
Donna

[Dreamlove15]

Hi Donna,

My mom always accompanies me at my doctor. She doesn't leave me alone just because of reasons such as this...She feels the same way I do. She feels bad that she can't afford insurance for me and that I have to endure this kind of treatment...:/

[leelee88]

Geesh it sure sounds like you are in a bad situation. But don't give up. I would get prepared. Print out everything you can about IC and on your next appt be ready and armed. This is your body!! Sometimes the Drs will be willing to work with you but need a little push in the right direction. But after your next visit if you still do not feel comfortable then i would suggest you start looking else where.
I know it's tough right now with no insurance, but hang in there. Things will get better..Good luck and I hope everything goes well..

[SharonA]

It might help if you spend some time printing some of the information available here about IC; the treatments and meds available to us, along with a pain diary, a food diary, a void diary and a personal journal detailing how you feel, how you deal and what you need from your health care providers. It is a lot of work and it is sad that we are sometimes forced to do this, but it can help you get the right care that you deserve to get. Don't let the doctors off with a shy "thank you". Insist that they listen to you and talk with you. If they don't, then insist that they send someone in who will. If they tell you to leave before you get the answers you need, go to the Director of the hospital and file a complaint and insist that you be heard, one way or another. The hospital may have an office that has someone who is a go between patient and physician. If so, go there with your concerns about not getting proper care. You can also file a complaint with the Medical Board of your State. If you are anything like me, then confrontation is the last thing you want to do. But if you don't stand up for yourself and insist on proper medical care, no one else will.