Angry and frustrated

[delfin]

I've had off-and-on IC-like symptoms for about 4 yrs now. Mostly pressure and pain, especially after I go to the bathroom. The uro said he thought I might have a "mild" case of IC... but no tests for that were actually done. This past week I've been so uncomfortable, he put me on Macrobid.. again. And, again, it hasn't provided any relief. I called the office today, feeling brave, and told them I thought I needed a cysto. The receptionist (or nurse) called me back, telling me I hadn't given it enough time, to wait 'till Monday.

I'm angry and frustrated because I feel like...it's been 4 years!! Shouldn't I at least have a test to rule out bladder cancer or something even worse than IC? Why aren't we talking about medications or treatments that I've been reading about here on this site... like oral drugs or pelvic floor therapies? I've called another uro in NYC who I read about on this site... do you think I'm doing the right thing to jump ship??? Thanks.

[Berkshire Road]

Yes. I think you need to see someone who specializes in IC or at least has a good amount of experience with IC, and if there's someone you've heard of who is good with IC patients, GO. So many of us have gotten the run-around from doctors, been left in pain with no treatment or diagnosis -- and it's just wrong. You deserve better care than you're getting. So go get it!

Do you live in NYC, or nearby? I'm in the 'burbs in NJ. PM me if you want to talk; I'll be happy to send you my phone number.

Good luck.

[Cardholic]

What is your pain like after going to bathroom? That's my main complaint... but pain is always changing. Most of the time it's a stabbing pain, but sometimes it's a dull ache like pain. And sometimes I don't have pain at all The only reason I've had testing is because I had blood in my urine. I still don't have dx, I see my Uro next week to get results of yet 1 more test.

Did he even test the urine for infection before prescribing an antibiotic? It really bothers me to take them when there is no infection. I'm afraid that when I need it, They won't work.

There are no rules about seeing a new Doctor. In fact, your doctor should encourage 2nd opinions.

I had a cysto, and it came back as a normal bladder, but I understand that IC is rarely diagnosed in a regular office cysto, and would need to be hydrodistended under anesthesia for the diagnosis.

Good Luck, and I hope you get relief soon!

[delfin]

Thanks for your supportive words. I've put a call into the NYC doc... I need a plan of action!

[GriffsMommy]

I would say that everyone else is on the right track. You should call the other dr and see what they can do for you. If the uro thinks you have a mild case of IC why would he prescribe Macrobid. If you don't have an infection that shouldn't help at all. If he hasn't been willing to do other tests or try meds that might help then there doesn't seem to be much point in seeing him anymore. I hope you find some answers and relief soon.

[tigger_gal]

hi welcome to the icn.. I agree with the other gals, you need to find a new doctor, that knows what he is doing when it comes to ic.

[leelee88]

Hello and welcome ..I would get a new doctor.. Also if you are having lots of pressure that really could be PFD.. and yes therapy should help..