Ajj1ao
06-24-2009, 03:54 AM
This is the first IC forum I’ve joined. I’m a 25-year-old woman who was diagnosed w/ IC seven years ago. I’ve never met anyone else with this disease, so I’ve never been able to talk to anyone who understands what it’s like. I’ve been poking around the posts - it’s good to know that I’m not the only one living with this! I’d like to participate in the discussion, so I’ll share my IC experience, typing in the novel glow of realizing that those reading will understand. If you have had a similar experience, or have productive advice, please share!
Long car trips were the bane of my existence when I was a kid. Unfortunately, my family, who lived in MD, liked to drive places like Florida and Wyoming. So even as a child, I would refuse all beverages for the entire day, so I could pee on something close to a normal person’s schedule. My secret rule was that I was not allowed to drink anything until we were installed somewhere for the rest of the night (i.e., home, a hotel). I’d rush into the hotel rooms and gulp down as much water as I could hold, knowing that I would not let myself drink anything else for another 24 hours. My “small bladder” was a family joke. I would be yelled at to “hold it” and “stretch your bladder!” It was humiliating. “When we get home this time, we are taking you to see a doctor!” Dad yelled once. I could not think of anything more awful than being taken to the doctor over my bladder. But I wouldn’t land at the urologist for another ten years. I (and my parents) just told ourselves that my bladder was small and it wasn’t a medical issue.
I always had to know exactly where the bathroom was throughout my childhood and teen years. I thought it was normal to get up five times a night to pee. Then late in high school I began to have severe pelvic pain, especially after drinking soda. I’d be doubled over with burning pain in the mornings before school. At a routine physical when I was about 18, I looked at the question on the doctor’s inventory: “did I urinate frequently?” Well, sure, I thought, maybe I do on some days. To my discomfort, the doctor asked me about it. Did I pee more than eight times a day? Duh, doesn’t everyone? Apparently not. I got my first referral to a urologist.
Thank goodness she was a sensible doctor who didn’t mess around with antibiotics for a nonexistent infection or a referral to a psychiatrist. After one look at my symptoms she handed me an “Interstitial Cystitis Questionnaire”. I looked at the questions and felt like they had been written about me. Other IC sufferers will understand what a huge moment this was for me! To realize that I was not a crazy obnoxious kid with a too-small bladder: I had a disease that other people had, too. Even before I began any treatment, this was a moment of bliss – for the first time, feeling like my bladder problems weren’t my fault.
I went through the usual IC diagnostics, including ultrasounds, urodynamics, Cystometrogram, urinalysis, hydrodistention and Cystoscopy. It was agony each time I was catheterized. “No, it’s not painful, it’s just a bit uncomfortable,” the physician’s assistant admonished as I yelped in pain. The diagnosis was confirmed by a second urologist. He appeared at my bedside as I came out of the anesthesia for the Cystoscopy. “I could see your bladder bleeding. You have Interstitial Cystitis,” he announced, and left. On my follow-up visit, I tried to ask him if the disease would progress, or if it would affect a future pregnancy. He was very dismissive, saying there was no point in talking about that yet (I was 20 at the time). I went on a regimen of Elavil, Prosed and Elmiron. The medications were a pain to take and, over the months, didn’t seem to help. I disliked the urologist anyway, and even a simple pelvic exam was painful. I didn’t go back to a urologist for five years. I swore off the drugs and told myself I was managing my symptoms by staying dehydrated and swearing off coffee, tea, soda, caffeine, tomatoes and most fruit juice.
Meanwhile, especially once I got married and moved in with hubby, the sexual problems got into full swing. Sex is agonizing – during a flare, it’s some of the worst pain I ever experience. I try to breathe and meditate to bear the pain, so it doesn’t affect my partner more than it has to. My libido is pretty much rock-bottom, since sex is, in my mind, irrevocably linked with massive pain. I try to have sex at least once a week regardless, for hubby's sake. Sometimes hubby is understanding, and calls the disease my “si-si-cystitis”.
I always kept a busy schedule and don’t let my symptoms stop me unless they’re at their most severe. Pain seems most acute early in the day, and sometimes this requires an extra thirty minutes curled up in bed. I work full-time in a physically active job, and also work as a writer, doing theatre reviews. This definitely ups the difficulty of daily life – I try to get a seat on the aisle, and I’m at the front of the line (you know which line!) at intermission. Ever since I got my diagnosis, my family was a lot nicer about my constant fixation on where the bathrooms are (and my hatred of long, lonely highways). I hate trying to explain the disease to others who notice on a day when I’m in severe pain. If I have to, I just say I have a condition that feels like a lifelong bladder infection, but is not an infection.
Life’s gotten a big harder in the past few years, when I started with worrisome achy muscles/joints all over my body and painful skin on top of the bladder problems. After bouncing between PCs and specialists for months and feeling like a pincushion from doctors trying to diagnose Lupus and Rheumatoid Arthritis, I was diagnosed w/ Fibromyalgia, which I’ve since learned some sources associate w/ Interstitial Cystitis. My rheumatologist suggested that the fibromyalgia was a result of the IC: my body had been bombarded w/ chronic bladder pain for so many years that now my nervous system is screwy and I feel pain everywhere all the time. Anyone else been told similar?
This week I went to a new urogynecologist, trying to effect a shining new dawn of mature, proactive self-care. “Well, you’re textbook,” he said as he pulled off his gloves after the exam. “Textbook what?” I said. “Interstitial Cystitis,” he said. He doesn’t seem overly concerned about my pain, and did not seem optimistic that there was help for the pain. He gave me a prescription for VESIcare, noting that it would help my frequency but not my pain. We discussed InterStim therapy and I decided to try a few more drugs before going to surgery.
I try not to let the IC rule my life. The whole “fluids are the enemy” mindset, which I adopted to control the symptoms even before I knew they were symptoms, does make life difficult. And few things are more horrifying than the prospect of a bus without bathrooms. And don’t get me started on highways without rest stops every twenty miles. Twenty-something friends think it’s bizarre that I never have more than one beer. Gee, thanks for reading this tiresome novel about yours truly. First time I sit down to write about my IC and it gets a little out of hand. I went to the bathroom twice since I started writing this. Let me know if you’ve had similar experiences (bathroom breaks optional while you type).
Long car trips were the bane of my existence when I was a kid. Unfortunately, my family, who lived in MD, liked to drive places like Florida and Wyoming. So even as a child, I would refuse all beverages for the entire day, so I could pee on something close to a normal person’s schedule. My secret rule was that I was not allowed to drink anything until we were installed somewhere for the rest of the night (i.e., home, a hotel). I’d rush into the hotel rooms and gulp down as much water as I could hold, knowing that I would not let myself drink anything else for another 24 hours. My “small bladder” was a family joke. I would be yelled at to “hold it” and “stretch your bladder!” It was humiliating. “When we get home this time, we are taking you to see a doctor!” Dad yelled once. I could not think of anything more awful than being taken to the doctor over my bladder. But I wouldn’t land at the urologist for another ten years. I (and my parents) just told ourselves that my bladder was small and it wasn’t a medical issue.
I always had to know exactly where the bathroom was throughout my childhood and teen years. I thought it was normal to get up five times a night to pee. Then late in high school I began to have severe pelvic pain, especially after drinking soda. I’d be doubled over with burning pain in the mornings before school. At a routine physical when I was about 18, I looked at the question on the doctor’s inventory: “did I urinate frequently?” Well, sure, I thought, maybe I do on some days. To my discomfort, the doctor asked me about it. Did I pee more than eight times a day? Duh, doesn’t everyone? Apparently not. I got my first referral to a urologist.
Thank goodness she was a sensible doctor who didn’t mess around with antibiotics for a nonexistent infection or a referral to a psychiatrist. After one look at my symptoms she handed me an “Interstitial Cystitis Questionnaire”. I looked at the questions and felt like they had been written about me. Other IC sufferers will understand what a huge moment this was for me! To realize that I was not a crazy obnoxious kid with a too-small bladder: I had a disease that other people had, too. Even before I began any treatment, this was a moment of bliss – for the first time, feeling like my bladder problems weren’t my fault.
I went through the usual IC diagnostics, including ultrasounds, urodynamics, Cystometrogram, urinalysis, hydrodistention and Cystoscopy. It was agony each time I was catheterized. “No, it’s not painful, it’s just a bit uncomfortable,” the physician’s assistant admonished as I yelped in pain. The diagnosis was confirmed by a second urologist. He appeared at my bedside as I came out of the anesthesia for the Cystoscopy. “I could see your bladder bleeding. You have Interstitial Cystitis,” he announced, and left. On my follow-up visit, I tried to ask him if the disease would progress, or if it would affect a future pregnancy. He was very dismissive, saying there was no point in talking about that yet (I was 20 at the time). I went on a regimen of Elavil, Prosed and Elmiron. The medications were a pain to take and, over the months, didn’t seem to help. I disliked the urologist anyway, and even a simple pelvic exam was painful. I didn’t go back to a urologist for five years. I swore off the drugs and told myself I was managing my symptoms by staying dehydrated and swearing off coffee, tea, soda, caffeine, tomatoes and most fruit juice.
Meanwhile, especially once I got married and moved in with hubby, the sexual problems got into full swing. Sex is agonizing – during a flare, it’s some of the worst pain I ever experience. I try to breathe and meditate to bear the pain, so it doesn’t affect my partner more than it has to. My libido is pretty much rock-bottom, since sex is, in my mind, irrevocably linked with massive pain. I try to have sex at least once a week regardless, for hubby's sake. Sometimes hubby is understanding, and calls the disease my “si-si-cystitis”.
I always kept a busy schedule and don’t let my symptoms stop me unless they’re at their most severe. Pain seems most acute early in the day, and sometimes this requires an extra thirty minutes curled up in bed. I work full-time in a physically active job, and also work as a writer, doing theatre reviews. This definitely ups the difficulty of daily life – I try to get a seat on the aisle, and I’m at the front of the line (you know which line!) at intermission. Ever since I got my diagnosis, my family was a lot nicer about my constant fixation on where the bathrooms are (and my hatred of long, lonely highways). I hate trying to explain the disease to others who notice on a day when I’m in severe pain. If I have to, I just say I have a condition that feels like a lifelong bladder infection, but is not an infection.
Life’s gotten a big harder in the past few years, when I started with worrisome achy muscles/joints all over my body and painful skin on top of the bladder problems. After bouncing between PCs and specialists for months and feeling like a pincushion from doctors trying to diagnose Lupus and Rheumatoid Arthritis, I was diagnosed w/ Fibromyalgia, which I’ve since learned some sources associate w/ Interstitial Cystitis. My rheumatologist suggested that the fibromyalgia was a result of the IC: my body had been bombarded w/ chronic bladder pain for so many years that now my nervous system is screwy and I feel pain everywhere all the time. Anyone else been told similar?
This week I went to a new urogynecologist, trying to effect a shining new dawn of mature, proactive self-care. “Well, you’re textbook,” he said as he pulled off his gloves after the exam. “Textbook what?” I said. “Interstitial Cystitis,” he said. He doesn’t seem overly concerned about my pain, and did not seem optimistic that there was help for the pain. He gave me a prescription for VESIcare, noting that it would help my frequency but not my pain. We discussed InterStim therapy and I decided to try a few more drugs before going to surgery.
I try not to let the IC rule my life. The whole “fluids are the enemy” mindset, which I adopted to control the symptoms even before I knew they were symptoms, does make life difficult. And few things are more horrifying than the prospect of a bus without bathrooms. And don’t get me started on highways without rest stops every twenty miles. Twenty-something friends think it’s bizarre that I never have more than one beer. Gee, thanks for reading this tiresome novel about yours truly. First time I sit down to write about my IC and it gets a little out of hand. I went to the bathroom twice since I started writing this. Let me know if you’ve had similar experiences (bathroom breaks optional while you type).