"After 27 Years, IC Does Not Rule My Life"

By Donna K. (Oregon)

I developed severe abdominal pain following an abdominal hysterectomy. By the time I returned to work six weeks after surgery, I had already had what my gyn diagnosed as two urinary tract infections. He said bladder infection was not unusual following such surgery so I took the medications he ordered. When the “infections” kept recurring after the healing process should have been complete, he then told me that it’s not unusual for women to have such symptoms following a hysterectomy and that it is almost always psychological. That was my last visit to his office.

I decided then that I needed to see a urologist. I first saw the urologist in the spring of 1975. The tests I had were an IVP, which diagnosed a “double collection system” meaning I have a third, partially formed, kidney with an inactive ureter. I also had urodynamics teting and an office cystoscopy. I was found to have a constricted urethra, which was enlarged by dilation. This improved my symptoms for several weeks.

While all of these things were happening, my primary care physician became incapacitated by a stroke so I was forced to find a new one. My pain was returning and I was very discouraged. The way I selected my new physician was, as my son says, “I picked a moe” .... I wrote down a list of physicians I felt were acceptable, then did the eenie, meenie, minie, moe .... and picked the primary care physician who has cared for me since that time.

At my first appointment with him, we mostly just talked. And when I told him my gyn had intimated that my pain was in my head, he shook his head and said he thought it was in my abdomen and suggested I see a different gynecologist and made a referral.

The new gyn recommended exploratory surgery to try to locate the cause of the pain; I had the surgery in August of 1975. What he found was that almost all of my abdominal organs were tied together with spider-web-like adhesions, which he excised. I couldn’t believe the improvement in my pain level.

Unfortunately, the severe pain returned within a month after the surgery for adhesions. The difference was that this time the pain was centered in the bladder. So I ended up back in the urology office, at that point extremely discouraged. I’m afraid I was ready to give up. My bladder capacity was 300 cc, which in 1975 wasn’t considered to be small enough to think about IC, but after conferring with another uro, my doctor suggested we try an overdistention (hydrodistention), along with biopsies, to at least rule it out. What he found was a classic case of IC, complete with Hunner’s ulcers.

The hydrodistention eased my symptoms so much I felt like I was well .... and very relieved. There wasn’t a lot of information available about IC in the 70’s and no thought had been given to a diet connection. I pretty well found out for myself that cranberry juice, coffee, carbonated beverages, were problems. It took a long time to figure out which foods are triggers for me. I have children with allergies, which made me suspect that at least part of my problem had to be food related. What I would have given for the list now available for new ICers!

My road to diagnosis was almost two years long. And it took more time to find my personal IC triggers, but now, after 27 years, I do very well. I know what I need to avoid, what medications help me most, and still have the same urologist. I am able to go on long walks, can travel .... we do make frequent stops .... and by and large lead a completely normal life. I worked full time for nineteen years with IC and decided on an early retirement when my husband was able to retire in 1994.

I consider myself a success story because, even though I have had to make some lifestyle changes, I lead an active, normal life. I made a conscious decision early in my life that I would not allow IC to rule my life and so far it has not. If I’m having a good day, I have learned to enjoy the day --- and tomorrow I will worry about tomorrow. If I have pain, I take pain medications and I never travel without them.

My IC Tool Kit contains:

Antispasmodic
Pain Medications (with anti-nausea meds to go with them)
Pyridium
Prelief (both tablets and granulated)
Antacid (excellent source of calcium)
Heat pad
Ice pack (works better than heat sometimes)
My IC friendly cushion
Travel Johns (They really are great and easy to use!)
Panty liners
Bottled spring water if we travel
Restroom access card from the ICA
MedicAlert bracelet because of medication allergies