SOOOOOOOOO confused!!!

[tamie26]

2 years ago I began to have pain in my clitoris, libia, and basically all of my vaginal area. IT felt like I was being stabbed in the clitoris along with this oversensative feeling alomost like arousal but to much. I would get shocks that would run into my leg and rectum and the pain does not stop. My bladder felt like it was on fire and that it might blow up. I went to the bathroom 20-30 times a day, up at night, can't sit for long periods of time or lay down because of the pressure it puts on my pelvic and bladder area. I went to the urgent care, ER, Gyn, PCP, over and over, test after test. No bladder infection was found, no PID, no bacterial, or viral infections found anywhere. Finally I was sent to a URO, she said you have IC. Began treatment with Amatiptyline (sp?) and pelvic floor physical therapy. The meds helped me sleep but after a year with her all she ever wanted to do was put me on more meds and send me to more therapy ($$$$$). She never did a cysto, or looked at my bladder in anyway. She made her dx based on my symtoms, puff test and process of elimantion. I decided to go to another Dr. to get a second opionion.

He did the puff test (written questions of symtoms), potassium sensativity test (OUCH!!!!!!), a cystoscopy. He said you have trigonitis and urethritis and put me on antibiotics for seven months, keep in mind I have still never tested postitive for any type of infection. The symtoms remained so he did a hydrodistention. So now he says well you have trigonitis and urethritis, and mild IC. He puts me on Elmiron and Atarax (just started 2 days ago). Right now I am in a flare, I can't sit or lay down for too long. My whole vaginal area feels inflammed and my bladder is bloated and in pain. He wants me to go back on antibiotics.

I also revisted my old Uro, she says that trigonistis and urethritis are all part of the IC disease and that antibiotics will do nothing and that in her professional opionion this is classic IC. She further went to say that my other Uro is old school and using terms that are outdated. He disagrees and wants to put my back on antibiotics.

His feeling is that the pain I feel in the clitoris and vaginal area are due to the massive inflammation I have in the urethra that they are not related to the IC.

I am so confused and in so much pain. Why do Docters that have the same degree, disagree so much.

Do any of you get this stabbing, shocking, electrical, burning, throbbing, etc. pain on your clitoris, vaginal area, rectum, legs, etc. Including the buring pain in the bladder? I feel like I am going crazy and I just want a definative answer about my condition. Are these symtoms related to IC or do I have three different issues going on at the same time??????? Do any of you have any answers? Your insight would be so helpful. Please forgive my spelling it is horrible!

Tamie26

[leelee88]

Tamie maybe these links may help...

http://www.ic-network.com/forum/showthread.php?t=48989

http://www.ic-network.com/forum/showthread.php?t=34448&highlight=sensations

[ICNDonna]

It's not unusual for an IC patient to first be diagnosed with trigonitis or urethritis, both of which can be a part of interstitial cystitis. Sometimes it's difficult to locate the specific source of a pain since most of us can have what we call "referred" pain. When I'm flaring, my bladder spasms can cause pain to radiate down my legs to the knees.

Elmiron can take six months or longer to become effective, but some ICers find it gives them a great deal of relief. Are you following an IC diet? That can be the thing that helps most.

It does sound like you have been given an accurate diagnosis. You have already done the PUF, potassium sensitivity, and hydrodistention --- any one of the three can add up to a diagnosis.

Sending warm healing thoughts,
Donna

[Claredale]

Yes, I have had the stabbing (peeing shards of glass) feeling several times last summer. All I have ever been diagnosed with is severe IC. I had IC for years before that symptom became an issue, but it was definitely related to spasms from my IC and my urethra so much more sensitive. When my IC was full blown, I lived with the shooting pain in my upper thighs. It felt as if I had been riding horses for days! I have never had a kidney stone in my life. I have only had one truly diagnosed UTI in my life and just had a yeast infection once very early in my diagnosis, which gratefully didn't last long. It never hurt, just itched like crazy. After that, my doctor advised me to go to the GNC and buy acidopholis for "my flora". I feel I had a UTI last month, but being on Prosed DS, I think that messed with my test results, but I had those classic feelings of feeling as if my bladder was being squeezed and it hurt so bad to pee. Definitely ended with a scream after even just a few drops of urine. I was never put on antiobiotics, which I didn't push since I am so very sensitive to them, but I drank so much water and relied on my B&O suppositories to get me through.

I hope you feel better quickly!

Hugs, Tracey

[tamie26]

Thanks to all of you that have shared your thoughts.
Tamie

[judy45]

I used to have the same vaginal pain. I was diagnosed with vestibulitis and given and estrogen cream to use daily. Let me tell you that bad boy worked in like 3-5 days! I was also told to stretch the vaginal area (down low) before putting the cream on. This also helps make sex less painful. There is another one called vulvadynia, but I am not exactly sure what that is, I know it is similar and about 75% of ICers have PFD, vulvadynia or vestibulitis also. The good news ease they are much easier to fix than IC.