IC or not?

[Daja7777]

I have been seeing a urol. for about 4 years. First off I have had problems with uti's for as long as I can remember. I started having painful spasms and feeling the need to urinate alot and not being able to empty completely. I have been dilated twice and had a urethral incision which seemed to help, but now I am back to the beginning again. I can't stand the painful spasms and my urethra seems where the most pain is. My urol. said he doesn't believe in the diagnosis IC. I have had a few scopes and destention tests and he says everything looks ok. Well everything doesn't feel ok. Does anyone know if you can have IC and the scope not show anything? Please give your opinions on what you think might be going on with me because I am at my whits end with this. Thanks so much Ginger

[K9wife]

Whether it is really IC or not, the symptoms you have and the pain are all pretty familiar to most of us here. You'll find a TOn of useful stuff on this site, regardless of your diagnosis. Pain relief is pain relief! Read on.......

[Silverfox]

I agree with K-9wife, but please don't let him cut on your poor little urethra it needs to be left alone. I would try other treatments you can learn about here.

Many, Many years ago some Drs. at a top clinic, who told me "I was at God", they also told me and my husband that it was all a mental problem and yet they told me that I would one day need them to remove my bladder.(???) :hmm:

I saw so many Drs. and I was super Dr. shopper, so I went to see a urologist in the UK. Well he did complete exam and hydrodystention and told me that my pain was real as he told me under anesthesia I responded as someone in severe pain would, with a racing pulse and reacted in severe pain. He told me that he didn't agree with the Americans on IC and that when he looked at my bladder it was normal and that you could stretch any normal bladder out and poke at it and cause bleeding and pinpoint hemorages. He told me that "real IC" was very rare. I had no ulcers. He said he didn't know the cause of my pain, but that it was real, and that he believed I would someday know. Oh, he told me never let anyone take out my bladder.

From my memory I believe my bladder symptoms began when I was very little maybe 3 or 4 and I was in trouble at school by age 6. Most of my worst symptoms were in the urethra and they grew worse as I got older. Of course I had many other symptoms and related conditions but I ignored them as the bladder and urethra were so terrible and needed the most relief. Don't ignore your other symptoms and make a list and talk to your Dr. about any others that you have. I made that mistake as my other symptoms were important.

So, I went years and terrible painful years trying to figure out what was wrong. My Mother developed over-acctive bladder. My older sister bladder infections and some bladder symptoms without infection. My little sister also developed bladder frequency and is now worse.

Because of our families history with this painful bladder symptoms we are part of a genetic study by the University of Maryland. The Dr. doing this study is very kind and I believe that they will solve this mystery of IC and maybe OAB too. My family has alway kept it a secret and now I think its time to let go of the shame and embarrassment so the cause and cures will be found for IC.

Very best wishes and keep doing your homework and learn all you can, and you will find answers that will help and I believe someday the cure.

[ICNDonna]

To answer your question --- when I had a cystoscopy in my uro's office, without the distention --- my bladder looked healthy and normal. But when it was distended under anesthesia, the pinpoint bleeding and presence of Hunner's ulcers confirmed the IC diagnosis.

However --- not every IC bladder will do any bleeding when stretched. You might ask your uro about a potassium sensitivity test.

Donna

[KristaM]

Hi there,
Did you have your cystoscopy done with a hydro or did they just look at your bladder without the stretching? You really need a hydro done and if that dosen't show anything then get the potassium test done. First off, I understand as well as others here what you are going through. Your symptoms are very similar to many symptoms of IC. Could you possibly find another uro who at least belives that Ic exsists? This Dr will never diagnose you with Ic is he does not believe it is a valid disorder. Believe me IC does EXSIST... I'm living it everyday as well as many many others. Good luck to you and I hope that you get relief soon.
Krista

[diane57]

Yes I agree with KristaM. If you have a uro who "doesn't believe in the diagnosis IC", I would look for another uro. There are lists of doctors who are familiar with IC on this website, or you can call around to different uros in your area and ask if those doctors are familiar with IC and if they treat IC patients. Or you might just put a post here asking if anybody has an IC-friendly URO in your area that they would recommend.

[sheryl*]

:welcome: Ginger, i agree witht he others, it may be time to seek another urologist, IC is real, and form what I am learning here and on the web etc, that you can still have IC with out things showing up witht these tests, and as the others say, regardless what is causing the pain you are in pain, and something causing it, its not in your head :bonk: . An 4 yrs is along time to be suffering and no lasting releif. I have not gottenthe hdrodystention yet but thats my next step, I am gathering you have had this done form you post, did they do a biopsy when there? They will be on me to rule out other casue, cancer ect. I hope you find a uroloigst that will not disregard your symtoms and will keep on going til he/she finds the source of your pain, and it able to adequalty treat it. This is a great site here and you can find lots of information too, Ihave been treking through some old posts and threads started by others and have found so many similarties its unbeliveable, even thing you would not think would be associated with IC, it may be worth a look at for you to see if you can relate to some of these http://www.ic-network.com/forum/archive/index.php?f-77.html, theres alot to look at, but just click on what may jump out at you and read them, you will see that many of your symtoms are very much simailr to IC regardless of what showing are not showing, your urologist needs to be very thorough, and find out whats causing your pain, if not IC then he needs to fund out what. Hope that you get some relief real soon :grouphug: ......