My Story….I believe my IC started with the birth of my sweet son in 1996. I had a planned c-section with him, but something happened that made the procedure happen faster than normal and I ended up having to lay flat for 24 hours with a catheter. This was the first time I had any abdominal surgery or a catheter. Six weeks later my journey began.
It started with not been able to urinate and being in awful pain. I was diagnosed with a kidney stone, although it never showed up on an IVP. I slowly started developing other symptoms, mainly urgency and frequency. I saw my urologist and family doctor who diagnosed me with UTI’s although it never showed up on the test done, but was put on antibiotics just in case. I then started developing what I thought were female problems. Experiencing heavy and painful periods. This was after I decided to have my tubes tied. Second abdominal surgery. Also my urgency and frequency just kept increasing. So my gyno and I started trying to figure out what my “female problems” were?? Tried birth control and other things and just could not get the pelvic pain under control. So we decided on a hystectomy, thinking this would help. Well it did not. Things kept getting worse, by now 2 yrs have passed. When we, my gyno and I, could still not figure things out, and with my pelvic pain, urgency and frequency just getting worse he said “I think you have IC and you need to be tested..” Well he wrote a note for me to take to another urologist, this being number 2, please test her for IC.
I went for my appointment, told the new uro my problems and gave him the note from my gyno. He looked at me as told me “You’re too young for this disease, and even if you did have it, there is nothing that can be done for you.” I left feeling discourage and upset and helpless. By now along with my IC symptoms, I also developed severe allergies, asthma and migraines, something I have never had before. It was another 3 yrs and another 3 urologists before I found anyone that would sit down and listen to me. During these 3 yrs I kept records of how many times I visited the bathroom during the day and I realized this was not normal, but I still thought maybe this was all in my head.
I finally found an amazing urologist, by chance, I was having another kidney stone attack and was referred to him. This time he was a younger uro. I went in and told him my symptoms, going to the bathroom every 15 to 20 minutes, and even after going I still feel as though I need to go. And the pain I have. We talked and he said I think you have IC. He then set me up for a potassium test. I went in and it was positive. Finally after 5 yrs of dr after dr I had my diagnoses. But along with being happy I was sad. Sad because I asked for this test 2 ½ yrs earlier. Sad because I had a hysterectomy done that in reality did not need to be done. I felt and still to this day that IC cost me to lose a body part that I did not have to lose, had my diagnoses come earlier than what it did. Now my journey begins.
My new uro did not specialize in IC, so he sent me to another uro in his practice that did. And we started my treatments. Started with Elmiron and Atarax. I also was scheduled for the Hydrodistention and Cystoscope. For proper diagnoses and hopefully for theuaptic purposes. I was unable to take the Elmiron due to side affects and the Hydro/Cysto was not helpful with curbing my symptoms. Meds that I tried where the above mentioned, Elavil, Ditopan (and the other bladder spasms meds) , Prelief, Zoloft, Lexapro, Neurotin, Xanax and I am sure others I just can’t think of right now. Treatments include DSMO, Urethral dilation’s (done 3 x) Hydo/cysto (both under anthesia and in office). And for me most of the above either provided side effects or just did not work. I was told this was because I went so long without diagnose and no treatments.
In Sept. of 2001 I decided to get the Interstim implanted. I wanted my life back. I have had set backs with the Interstim also and have had to a revision done in May of 2005. Right now my symptoms are still not under control the way I would like for them to be. But I REFUSE to give in to this disease. I know one day there will be a cure and I will never let this get me down. It did in the beginning but not now. Even with my set backs I know there are others out there that are worse off and just beginning there experience with this disease. And if I can pull myself up out of my dark hole I hope they know they can to. This disease took just about everything it could away from me, but it will not take my dignity and faith away….
My love and prayers to those just beginning their journey.
Patricia
