Here goes…
Hi, my name is Laura, and I have interstitial cystitis. Chances are that you’ve never heard of interstitial cystitis. Interstitial cystitis is sometimes referred to as painful bladder syndrome – which you’ve still probably never heard of – but at least which it gives you a clearer idea of what the condition involves. Interstitial cystitis is a chronic pain condition that often causes pain in other areas of the pelvic region; many patients with it also have related conditions such as vulvodynia (which I have), endometriosis, fibromyalgia, and more.
Doctors don’t know what causes interstitial cystitis yet, and there is no cure. There are treatments available – there has been some luck with a medication called Elmiron, and even certain combinations of nutritional supplements – but it is commonly believed that interstitial cystitis is best controlled by changing one’s diet. One noted dietician who deals with IC, Julie Beyer, has said that 80% of people who adopt the diet experience at least some relief of symptoms, and that no other treatment has a success rate this high.
In June 2008, I started experiencing discomfort, and thought I had a urinary tract infection. My doctor at the time did too, but when my pain did not go away, and the bacterial cultures came back negative, she diagnosed me with interstitial cystitis and sent me off with a two page pamphlet. This was not very useful to me, and I was not convinced that I had interstitial cystitis – from what I’d read, it involved having to urinate up to 60 times a day, and I only experienced pelvic pain. Over the next few months, I returned to my previous practice, and worked with a doctor there to try to find out what was going on. Since I have a family history of uterine fibroids, and was diagnosed with polycystic ovary syndrome (PCOS) in 2005, I felt there were other conditions that might have made more sense – fibroids, endometriosis, or ovarian cysts. After an ultrasound of my uterus was uninformative, so my primary care physician referred me to a urogynecologist. I met with this specialist in October 2008, and he confirmed the diagnosis of interstitial cystitis with a potassium sensitivity test. If the test sounds unpleasant, I can assure you, it is. Moreover, reading about it was downright scary – I called my parents in tears the night before my test, frightened that I’d be in pain for weeks after. It wasn’t nearly as bad as I’d expected it to be, but I was in discomfort for a few weeks afterward. (My specialist asked later if they’d given me a rescue solution – which is supposed to ease the discomfort one feels if the test is positive. They didn’t, which annoyed him – so the blame there lies with the nurses.)
Late last year and early this year, I received heparin and lidocaine instillations – a mixture was inserted directly into my bladder. This involved being catheterized approximately 3 times a week for about a month and a half. Frankly, now that I’ve had it done so many times, I am no longer phased by it, especially since the instillations helped.
Since then, not much in my care has changed. Over the last few months, however, I’ve felt worse. About a month and a half ago, I experienced a bad flare-up due to menstruation. Unfortunately, it’s entirely common for women with IC to have flare-ups along with their periods. I was in so much pain I spent most of the weekend in bed. Despite following the specialist’s admonishment to take 800mg of ibuprofen as soon as I started feeling bad, the ibuprofen did not help me. Since that flare-up, I almost feel like I’m back at the drawing board.
I’ve told you a bit about the physical aspects of IC, but I haven’t touched on the emotional aspects. I have long experienced mild headaches, and I’ve learned to block out the pain and still be functional. I tried to do this with my interstitial cystitis, but it doesn’t work; the pain is draining. Some of my friends with similar conditions had told me, back in college, about the spoon theory (PDF) but I understand it now – as she says, a truly healthy person doesn’t understand, and I didn’t. This statement in the story resonates best with me: “I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”
Honestly, I don’t want to think about those choices. It feels unfair. I don’t want to think of myself as sick. I hate it when my friends make me feel guilty for leaving a party early, or not drinking – even though I do it to take care of myself. What I’m most angry about, though, is food.
I’m overweight, and I am an emotional eater. Food is my comfort. I’ve been trying to deal with this in recent years, and it seems that the best theorists on compulsive overeating – people like Geneen Roth, Carol Munter and Jane Hirschmann – tell me that the way to deal with this is not to limit myself. They say that I should legalize all foods. Well, sure, I can legalize all foods – but if I drink a Diet Pepsi, I’m going to be in excruciating pain. I can’t legalize all foods and be healthy.
I’m so mad. Part of me – my inner five-year-old, if you will – rebels at these strictures. She stomps her foot and says, I don’t care if this is bad for me, I want to eat it and I’m going to eat it and YOU CAN’T MAKE ME NOT EAT IT. Nyah.
My older, more mature self is just scared – and I imagine the inner five-year-old is too. How can I cope when I am – as a new friend described it – “watching the boundaries of my life close in on me.” How can I cope when my primary coping mechanism is being taken from me?
I spent a chunk of last week crying. I think I am finally beginning to grieve for the loss of my life as it might have been. Grieving for what I have yet to give up.
So that’s where I am right now. I think that I need to write about this, because writing is one coping mechanism that hasn’t been taken from me yet, and because it has always helped me work through emotional situations.
I am happy to report that I have a very supportive and understanding family, and a good support network – of other IC patients, other patients with invisible illnesses, and friends and coworkers. I am going to need them.
