Sunday, February 21, 2010

"Tell me where it hurts..."


Being diagnosed with Interstitial Cystitis is difficult. Basically it is first & foremost not even recognized by some doctors as an actual disease. In fact, 20 years ago it was called the "hysterical woman" disease!

When I was diagnosed in June 2009 the main way of being diagnosed was through a Cystoscopy with Hydrodistention and a Potassium Chloride Sensitivity Test. Both of these can be very painful to people who have IC, so it is a big step to have them performed. For me, I just simply had to know what was going on! I was told it could be a really painful step in the journey, but I wanted to know. I had to know!

First my urologist explained briefly what to expect during the procedures, which I had already researched on the internet extensively. She & her assistant left the room so I could undress (what fun!) and I put on a paper gown. My husband has come along for the visit, but honestly, I had never felt more alone.

The assistant came back & used lidocaine gel to numb my urethra. (If you are preparing to have this done, don't hesitate to tell them if it hurts at any point! Sometimes lidocaine takes longer to work in some people.) When she catheterized me I wasn't numb enough & the pain began.

First she emptied my bladder... which was really full. Like surprisingly full! It felt like it took forever for her to get it emptied. She later told the doctor (within my hearing) how much my bladder had in it & it was a rather large amount for a normal woman's bladder! IC actually was at one point diagnosed by small bladder size. I wouldn't have fit that criteria, for sure!

After my bladder was empty she flushed in sterile water. I was to judge the pain on a scale of 1-5. To me it was only a 1. I felt mild pain, but mostly just felt like my bladder was full & I needed to pee!

After the water was emptied out, she flushed in a solution of potassium chloride. OUCH! I only gave it a 3 on the pain scale. Honestly, I had felt much worse pain in some flares I had, but it still hurt enough to tell us my bladder wasn't healthy!

After that was emptied out, she pushed in a combination of lidocaine & water, to help numb my bladder. Then while my bladder was full, the doctor came in for the cystoscopy. I wasn't supposed to feel anything, but I could feel pressure from the insertion & it didn't stop until she was done.

She said that the lining of my bladder appeared healthy, which was a good sign. About 10% of people with IC have Hunner's Ulcers, which are large ulcers that cause extreme pain. It is the worst form of IC you can have. I didn't have bladder cancer, or cysts or anything visually wrong with my bladder.

Therefore I was tentatively diagnosed with Interstitial Cystitis. There really isn't a perfect definition of IC, but I always try to describe it as thus: Tiny holes have sloughed off my bladder lining. The holes allow painful things like acidic foods & preservatives to go straight to my bladder muscles & make them spasm. The spasms create extreme pain & urgency. There's no cure for IC & most of the treatments are subjective to the individual. Many patients have to take a creative approach to treatments to even feel like they can live from day to day!

The worst part of the procedure for me happened a couple hours later. And I truly wish I had been warned this could happen- I had been given lidocaine in my bladder to help with the pain, but after going to the bathroom once, sharp horrible throbbing pain set in- during a movie, no less! I ended up with a terrible flare- a 5 on a scale of 1-5, so much worse than what happened when they were giving me the test!

Since being diagnosed, I've learned so much about IC and how it hurts different people. Mine seems to be rather specifically linked to how much urine I have in my bladder, and how concentrated it is. I am almost in a constant battle each day, trying to find the right level of hydration that keeps me pain free, but also from having to run to the restroom every 20 minutes.

If you believe you are interested in having the Potassium Chloride Sensitivity Test this is a good link to read prior to testing:

Also, it is good to keep in mind where you are having the test done & how long they will keep you there. If you are doing it at an OB/GYN or GP office, will they have adequate pain relief available, should the test cause you to flare? Is the office willing to let you hang around for a couple hours, or come back, should you end up in extreme pain? Will they be willing to send prescription drugs home with you that could help with immediate pain? These are just some things to consider before springing for the PCST test.

There are many providers who will treat you as an IC patient without even performing the test, though they many want to still do a cystoscopy to rule out ulcers, cancer, etc.

For me, I chose to go through with the test, even after hearing horror stories about the pain, because I wanted to know exactly what was going on in there! And even though there wasn't anything that was seen to be wrong with me, I was able to get on the pathway to healing & controlling my pain. In the end, that day of pain was a very valuable step for me.

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