My story seems somewhat different from most I have heard. Until July 2002, I had only had 3 bladder infections in my life and I was 33 years old. I have a history of endometriosis and had a hysterectomy in April of 1999. In June 2002 I had surgery to have my ovaries removed due to recurrent endometriosis and a large endometrioma that was bleeding into my left ovary. I started on hormone replacement therapy immediately but at 2 weeks post-op I was in terrible pain in my left side. When I tried several times to get into my doctor and his staff would not take my seriously, I changed doctors. My new doctor took me off of the estrogen and put me on progesterone to counteract any remaining endometriosis that was left inside of me. We worked on the assumption that some endometriosis remained and the HRT stimulated its growth.

In July 2002 I went to my new doctor with what I thought was a bladder infection. My culture came out clear and we chalked it up to the pain from my recurrent endo. This I know today to be my first symptoms of IC. By October 2002 my health was deteriorating quickly, my belly was swollen to about the size of a 5 or 6 month pregnancy and I was urinating about 20 times a day and 6 to 10 times at night. I was taking two 10mg oxycodone tablets every 4 hours around the clock for pain and could still barely walk – the pain was so severe.

My new doctor decided I needed surgery to “look around in there” but did not want to do it himself. He sent me to an endometriosis specialist in San Jose, California to have surgery. It was this doctor that first said the words “interstitial cystitis” to me. I had never heard of it before! He told me that he wanted to do surgery to try to find the source of my left-sided pain but before he started he would do a cystoscopy with hydrodistention to check for IC.

When I woke up not only was I shocked to find out that I did have IC with the telltale pinpoint hemorrhages but I was also horrified to find out that a large portion of my left ovary (along with the endometrioma) had been left inside of me! It was adhered (securely, I might add) to my left ureter and to my bladder. My gynecologist said that eventually that mass would have continued to rot and would have spread poison throughout my body. Thus began my journey with Interstitial Cystitis.

In the last 11 ½ months I have reached a plateau where I have pain and frequency everyday but not at a level that consistently impairs my activities. I credit this plateau to the combined use of hydroxyzine and weekly DMSO treatments. I have also been diagnosed with IBS but have been successfully treating it with diet modifications.

Over time I have learned that while anger and blame are permissible and maybe even required at times, it is important not to dwell on these things. We can “what if” ourselves to death but it will not change anything. I believe the old adage “the only way to eat an elephant is one bite at a time” holds true for those of us with IC. We can have “normal” lives after an IC diagnosis but we need to be flexible enough to accept that what we know as “normal” may have changed and just take life one day at a time. My faith is very important to me and I live each day under the promise from Joshua 1:9 that says “Have I not commanded you? Be strong and courageous. Don’t be afraid and don’t be dismayed for the Lord your God is with you wherever you go”.

Thanks to the IC Network for playing a large part in my emotional support on a daily basis!

Sincerely,

Pam