Has anyone been diagnosed using a non-invasive procedure?

[Ginji9]

Hi all.

I'm fairly new to the boards (lurking mostly), and I've read a lot about people being diagnosed with cystoscopy and hydrodistension.

Has anyone been diagnosed using other methods? I am really reluctant to do anything invasive at this point. I'm following an IC diet, and since my main symptoms are the constant urge to pee and some pain in my lower left side (plus bladder burn if I eat the wrong thing), I'm not eager to exacerbate or accelerate the problem with someone poking around inside me.

Thoughts, anyone?

Barrie

[aprilmae]

I had a cysto done and it did not show anything. My original uro decided based on symptoms that I had IC.

I later decided to switch to a urogyn - the best in my area. During my first visit he had me take the PUF test (a questionnaire about symptoms, pain, frequency, urgency) which was then scored. He also spent a lot of time talking to me and asking very direct questions. He also did an examination on me to feel the bladder spasms and also the nerve issues I have. It was at this point that he decided he agreed with the original diagnosis. He did not feel I needed a hydro. I have a good friend on this board (maybe she will post) who just had the PUF test done also. Many doctors are using these other less invasive procedures when they feel it is enough to diagnose. My doc told me he did not feel another test was necessary because of the discomfort it would cause. His goal is to get me out of pain. I have started PFT and we are also trying different combos of meds.

Remember, when you are in the process of being diagnosed it is your body and you know it better than anyone else. Only do what you feel comfortable with and if you don't like the doctor or the staff - SWITCH!!!! This is a group of people you will see a lot of until your symptoms are controlled and you have to feel comfortable dealing with them.

Feel free to ask any questions you may have.

Good Luck!!

[Berkshire Road]

I was diagnosed in a way very similar to April's. Just the PUF test, internal exam, and discussion. Also started me on meds (if they help, then that is diagnostic also). I never had a painful test like the Potassium Sensitivity or Cytst/Hydro, and I never plan to. I definitely have IC. In fact, I was approved for Social Security Disability based on the IC dianosis and depression. I also see a Uro-Gyn who deals specifically with women's pelvic pain and sexua pain disorders.

Don't agree to anything you're not comfortable with. As April said, it's your body! Good luck to you!

[Ginji9]

Thanks AprilMae.

I wonder if your doctor was willing to make that diagnosis because you had a previous cystoscopy. Hmmm.

But, you're definitely right about doctors. I already "fired" one uro who told me that I just had "sensitive bladder" and it was in my head. Please.

Anyway, thanks for the great reply.

Barrie

[aprilmae]

He did not have the results of the cysto in front of him when he made the diagnosis. He was merely going off of what I told him. In talking to him I do not believe he would have gone the route of a cysto.

However, Carolyn did not have anything invasive done and was given a diagnosis.

[Ginji9]

Thanks for the responses. Berkshire Road, would love to PM with you sometime about your fight for disability.

I have seen two NYC drs. who specialize in IC, and they prefer to go the invasive route. But, I am listening to my body, and now to you!

Thanks again.

[ICNDonna]

At the time I was first experiencing IC symptoms, I had symptoms almost identical to what my father had experienced with bladder cancer --- so it was extremely important to me to have a definite diagnosis. I'm really glad I went the hydro route since it has helped my symptoms substantially.

Donna