I am 46, a wife, an RN in ICU, and breed Ragdoll Cats. When I was 20 is when I first remember peeing a lot. I was in the Hospital undergoing tests and my Dr. asked me, “Was there anything else I needed to check out?” I told him that I peed a lot and then feel like
I have to go again. So he ordered a Urology consult. The Urologist came that evening, took my history and ordered an IVP and Cysto in the morning.
Upon waking up from the Cysto I found I had a 34 french catheter in my bladder. The normal size is 16-18. I instantly had spasms and pain in my urethra! The Urologist came in my room and started laughing! He said, “You are right, you do pee a lot as your capacity is 250cc. Your urethra was constricted so we put big cath in to dilate it.” Then he said the words I will never forgot! “You have Interstitial Cystitis, a progressive, incurable disease and your capacity will get smaller, become painful and there in NO treatment. When your capacity goes down to 150cc or less you will need a Urostomy.” Then he walked out of my room leaving me all alone with this information.
I felt soooo alone. DEVASTATED! I had just been given my death sentence. Who wanted a urostomy bag.!! I was a nurse. I knew what this was and it was gross, I wanted no part of that!!!!!!!! Well I knew there was nothing to do so for the next years I just peed a lot. Gradually the bladder pain started and I had frequent UTI’s.. My husband was great about it. He said I had 40 miles to the bladder. When we got married in 1987, he took pictures on our Honeymoon of me coming out of all the womens restrooms…he had a lot!!
I had many trips to the ER with flare ups but they didn’t know what IC was and would give me nothing for pain. So here I was still in misery. My flare or daily symptoms I had then and today are pelvic pain, urethritis, bad urgency, shooting pains down my legs, around buttocks, bladder pain and distention. My bladder at times would be so painful and full that I had to be cathed as I couldn’t go on my own.
SEX! How I wish I could say it was wonderful. But it is painful. I have to use all kinds of lubricants, always looking for one that is better then another. We don’t have sex that often. That bothers me a lot. But my husband understands.. He said we’ll just take it one day at a time.. isn’t he great!!!!
In 1991 I was reading a magazine and read an article on IC. I couldn’t believe it there was finally something out there for me! I read about the meds, instillations and treatments available . For the first time I felt there was finally HOPE!! I immediately saw a Urologist and we scheduled a Cysto and Hydrodistention. He started me on Vicodin, Prosed, Cipro and Atarax. Finally,someone wanting to help my pain!!
My capacity was 175cc, voiding 30-40 times a day and 12 times a night. The Elavil let me sleep and I only got up once. The pain meds let me hold my urine longer and the hydrodistention got my capacity up to 400cc. I finally had a life!! From that time on my Uro did hydrodistentions every year to keep my capacity up and it also helped my pain. I also did the IC diet, bladder training, but still have not given up smoking! I have to be honest!!
Also in 1991 I found out I had the gene for Huntingtons Disease. My Mom is in end stages with this horrible hereditary disease, and it usually starts around 45 years in my family. In 1993 I started having symptoms of HD; short and long term memory trouble,and mild arm movements. Today my symptoms have progressed more that I have had to cut back on work and have less stress in my life. In January 2004 I fell and tore my left Rotator cuff. Now I added more pain to my already painful bladder! I worked in a sling but was in so much pain in my shoulder. I had always had depression most of my life and it reared its head more in 1980 when I got the diagnoses of IC. Then add the Huntingtons Disease and now Rotator Cuff, I had a lot on my plate. My depression got so bad I didn’t get out of bed unless going to work. All the stress of having IC for so long and no one believing you made me depressed. So now my pain meds were increased to deal with all the pain. I was soo tired of hurting!! I was in a deep hole. I didn’t want to live anymore and on March 12th I had a bad car accident which I caused myself, but didn’t tell anyone when it happened. A few months later I finally went to the Psychiatrist and told him all and I went inpatient for help. I then went out patient for a while and now I go monthly seeing a therapist. I got put on Wellbutrin and Lexapro.
Today I feel great. The meds and therapy have helped so much and I have done some work too (haha). I know I had to go through this to grow. I had to deal with all my issues.
In Sept 2004 I went to a new Urologist who specialized in IC. He started me on Oxycontin 20mg, which now in March 2005 I’m on 40 mg. I had a hydrodistention with instilation of meds which felt good. I tried Elmiron without results. My plan is now Hydrodistentions every 6 months, Atarax, Prosed, Estrogen cream for my Vulvodynia, bladder training, and keeping catheters with me for emergencies.
My outlook is very hopeful as I know there is so many things out there that will become available in the future for us that are under development for our Incredible Shrinking Bladders. I know I can deal with my pain today. I have made it through these last two years; severe depression and I learned I am not ready to give into anything. I will fight all the way, always look for something new. This summer I will be getting the Interstim. I am excited and looking foward to this procedure!
Nancy in Georgia
