Life With Interstitial Cystitis

           This is such a personal and for me, intimate topic. It speaks of a very private battle of chronic pain and physical limitation that I abhor admitting to. I have spent years planning my life around it's predictable nature, trying to outsmart the effects it had on my life. I have been silent in the presence of others and participated in activities I knew would exacerbate my symptoms because I simply didn't want to discuss my symptoms or complicate other's meal or activity plans. Eating at restaurants always seems to come with a painful price tag and physical exertion often left me sweating from the sheer pain it caused.

          Interstitial cystitis is characterized by bladder pressure and constant need to relieve oneself, searing bladder spasms, eurethra pain, vulvar pain, and all of it is exacerbated with movement. This includes lifting, or jumping, and sometimes even just walking. The experience is so much like a bladder infection that I keep urinalyses strips on hand so that I can tell the difference. (If a strip shows "nitrites" it is likely that an infection is present.) I have also had my urine cultured in a Dr's office just to be sure I wasn't dealing with an undiagnosed infection, but it always came back clear.

Painful Bladder 

        My troubles began at the age of 13. We had just made a family move that I found difficult to handle emotionally and was trying to adjust to a new school and making new friends. It seemed like I just woke up with it one morning! I noticed that drinking water seemed to help, but I was always running to the restroom. The cycle was drink a lot of water, pain and bladder pressure increased, relieve myself and the pain would dissipate or reduce. Then I knew to start drinking the water again because if I didn't have the water flowing through me, I would feel better for longer but eventually the pain would hit me like a tidal wave and there would be no water in my system in order to urinate and feel relief. This type of pain was excruciating and made it very difficult to walk between classes. I can still remember my face hot with pain and sweat sliding down my back as I willed myself to take each step. Adjustments had to be made when I went on trips or any circumstance when I could not plan on being close to a bathroom.

Diet Is A Trigger!

     As time went on, I noticed that my flare-ups of pain were largely clustered around food. I felt the best in the morning, right when I woke up. My pain was the worst almost immediately after eating and lingered for hours. But this realization gave me another tool in my belt. I could control when I ate and how much! I began to plan my activities around my meals...with physical activity being before, with less active work after meals.

      Even as a teenager I was actively searching on the internet and reading about bladder issues. There was a suggestion that having a more acidic urine would reduce infections. I began drinking orange juice (not from concentrate, 100% orange juice with no added sugar) when I was experiencing pain. WOW! did that ever help! A strong helping of orange juice and a trip to the bathroom and I was good to go! Years later I actually learned that the orange juice was making my urine more alkaline, not acidic, and that increasing the alkalinity of my urine greatly reduced my pain load! A dr. once hypothesized that a urine closer to a neutral ph would be less painful if the bladder wall was ulcerated or damaged in some way. In his opinion, acidic urine on a sore bladder would be much like spraying lemon juice on a scratch. 

      Learning about which foods created a lower or higher ph in urine was a game changer. I found many charts on the internet. Sometimes I find these charts do not agree, but mostly they do. Lemons, though acidic before we eat them, actually have a very alkalizing affect when eaten. For many years I relied on a constant source of lemon water to get me through the day. I still had pain and I was still running to the restroom constantly, but it gave me more freedom of movement. When I really needed fast relief I took a teaspoon of baking soda in water. UGH! I do not recommend that, by the way!

    When I left home, I didn't usually want to draw attention to myself with my lemons and vacations and family visits were often very sedentary for me as I tried to manage my pain levels more discreetly. My aging grandmother had more freedom of movement than I did!

Resources For Bladder Pain Sufferers

      Years went by like this until a midwife of mine lent me a book called You Don't Have To Live With Cystitis.  Reading a book about my symptoms and realizing I wasn't the only sufferer gave me hope of finding a long lasting solution. I read through a few other books on the subject and tried the diets and supplements, but did not find any relief. I did find that many people who struggle with interstitial cystitis do have similar trigger foods. Tomatoes were an easily identifiable trigger for me. Caffeine was one that many said was a problem for them. Caffeine wasn't something in my diet anyway but I decided to avoid it just to be on the safe side. 

       I also tried to keep a pain and food diary. But I never could find a discernable pattern.  I tried flushing my body with gallons of water! That seemed to be a good idea as it reduced my pain, but I basically had to live in the bathroom. I tried skipping meals, but it is hard to go for a long time without food and still be able to function.

                   Stay tuned for an update to this story and how improved my quality of life is, now!