New here and confused

[GypsyRayne]

I have had bladder problems for years. At first it was UTI's, then it was you have blood in your urine but no bacteria. Several years ago a dr told me that some people just have cronic bladder infections. He put on antibiotics for about a year. During this time, I would still get infections and would have to go on stronger meds, then back to the regular one.

I went to the uro. and he told me he thought I had IC. I had xrays and a cystoscopy. The uro said my bladder is healthy.

Something is wrong with me and I am discouraged. Here are my symptoms, every month before my period I have horrible pain and burning, feels just like it did after the cystooscopy, for anyone who has had this. It burns really badly after sex. My back and sides hurt. I have to pee at least every 2 hours, if I can last that long. I take cystex like candy.

Does this sound like IC?

Thanks.

[leelee88]

Have you seen a GYN, I would have them rule out endometriosis. Also even with a Cysto IC may not be seen and your bladder may look healthy even if you have IC.. It usually take a cysto/hydro for this. Or you could ask for a less invasive procedure like the PST test. Where the Dr puts some solution in your bladder and sees how you react to it.. Whatever you do. DO NOT give up! Find a dr who will listen to you..If you feel like you are not getting the right answers please get a second opinion..

[Chibelle]

Some doctors don't always know what is wrong. I went to 2 doctors and both of them thought I had UTI's, but I found out they were wrong. They did not do a culture, and they assumed I had a UTI because I was bleeding and had puss in my bladder. The second doctor, a urologist, even told me I had UTI's because I shaved and used soap to clean myself "down there." I ran out of the office crying and I slammed their door.:rant: I finally went to a good urologist and he did a test where he put two solutions in my bladder, and concluded that I probably had IC.

Some people's cystoscopy looks normal even with IC. They usually can only see if you have ulcers and obvious things. I hope you get better because sometimes it can be a long journey.

[c2miracle]

Hello and welcome GypsyRayne (love the name) All I can say is hang in there and keep positive. Unfortunately there are doctors out there that don't give a hoot! I have been called "crazy" before and it is very disturbing and then you begin to doubt yourself. We are all here for you. I can't say if it is IC or something else going on, but hopefully you will get a diagnosis very soon! I would maybe try the IC diet, you can get off this website and see if that helps. Stay Positive!!! :smile tee

[Mrs. Peel]

I went to the ER with flank pain. The urinalysis they did showed epithelial cells (bladder was shedding them) and the lab asked the Dr. to repeat the test, but he didn't bother. He just decided I botched the clean catch.

As if we don't know how to give a urine sample by now. Right ladies?

[MommaWuzzi]

Did they do a hydrodistension with your cystoscopy? I was really surprised when I saw a cystoscopy on YouTube by an IC Awareness group and they had the bladder filled TWICE - because my bladder was only filled once (of course, it was also bleeding at the first fill). On the cystoscopy on YouTube, the bladder looked normal the first time. On the SECOND fill, the glomerulations all started showing up as little red pinpoints and the diagnosis was IC. Just how THAT patient's body worked.

Also, a friend of mine who has adopted me since the IC diagnosis (a local support leader) said that at a lecture she attended the speaker said that people can have IC symptoms and have small thinnings, etc., that THEY are very aware of that don't show on cystoscopy, and then described a small tear missed by several people reviewing the results. You CAN have IC and have a very NORMAL looking cytoscopy. It only takes some thinning or one missed tear to give you a lot of pain.

Hang in there, and if you don't agree with your doctor and the way he handles you, keep looking until you find someone that you can TELL has your best interests at heart!

Welcome to the ICN! :welcome:

[ICNDonna]

If the cystoscopy was done in the doctor's office, it would usually not diagnose IC. When I had my first cysto as a part of the diagnostic process, my bladder appeared to be completely normal and healthy. It wasn't until it was stretched during a hydrodistention under anesthesia that the IC was apparent.

Donna

[navemj]

I would check with my gynocologyst to rule out endometriosis.
Maryann