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Yet another sad story
Hi everyone,
I have been in and out of this Forum since my diagnosis in 2005. I am still struggling to accept that I have this disease. Whenever I flare-up, I get desperate, go to the doctors, order new supplements, change my diet, etc. Then mysteriously things get better and I start feeling like I'm a normal person again. A few beers, tomatoes, pieces of chocolate later...well, you know the story.
I first had this disorder in the late 1970s, when I was in my early 20s. I had been living in the Middle East and had just recovered from a life-threatening bout of typhoid fever. When I returned, the IC hit. Of course, I wasn't diagnosed with anything and was told that it was all in my head. I remember leaving yet another doctor's office in tears, and feeling as if my life was over--no more sex, traveling, a good night's sleep, or days without pain. Then, mysteriously, the condition remitted, and stayed away for 35 years!!
In 1993 I had the sudden onset of fibromyalgia, but with the help of a great doctor it was brought under control. I have been taking Ultram and Lodine XL for this condition since 1995. I am lucky that I found a combination of meds for it that works. Of course, now I'm wondering whether the chronic use of these meds triggered or worsened my IC.
The IC came back in 2005. At first it was a minor annoyance, but it's gotten progressively worse. I do not have the condition under control yet. I've tried various supplements, acid reducers, Algonot products, Aloe Vera, ad nauseum, basically everything for sale on the IC website. Nothing has really worked. I know of some dietary things that are sure to cause a flare (acidic drinks, booze, tomatoes, vinegar, almost all fruits). I take Oxybutin 20 mg a day; without it, I go into instant flare. I'm not taking anything else for it right now except for OTC Pyridium, which doesn't help severe flares.
Most of the time I live in a state of low-level misery. I can work and have sex sometimes, but my boyfriend has to put up with my constant peeing. I can't imagine living with a man and having a normal relationship. Sometimes weeks go by when I barely function due to a flareup. I routinely pee 8 to 12 times a night. I wear pads every day and adult diapers when things are really bad. I am constantly pushing and straining to empty my bladder. I cannot hold anything in there for even a moment due to excruciating pain. When I'm flaring I will be pushing out pee every 10 minutes or less. Naturally, I am now getting lower back pain.
I have had very little luck with doctors. I live in LA so I have access to some of the best, including the ****urologist. I am very disappointed in my treatment at UCLA thus far. The last time I was there they did a cystoscopy on me in the office with no anesthesia, and I was screaming in pain. They told me that they couldn't find anything. When they were done I could hardly walk and there was blood all over the table. They treated me like I was a nuisance and I had to crawl out of the office in severe pain. The only thing that seemed to interest them was when I told them that I had blood in my urine. My doctor subsequently ordered thousands of dollars' worth of tests, MRIs with contrast, CT scan, etc., etc. Just my copays were over a grand. I haven't gone back for the results because I'm so disgusted with them over there.
I had a more thorough cystoscopy under anesthesia back in 2005 and that doctor found Hunner's ulcers. That doctor, unfortunately, was one of those types who gets mad at you when you don't improve. He basically cut me loose. So I ended up at **** and I'm not getting anywhere. They have nothing to say to me when I ask, "why would there be ulcers then, and not now?" They want me to take Elmiron but I took it for years without much change and it would cost me $175 for a month's supply.
Anyway thanks to those of you who have read this sad story. I hope that someday I will find the right combination of meds, a good doctor, the right supplements, etc., to at least get this thing under control. I am so sick of being in pain, wetting my clothes, and feeling out of control.
Best wishes,
Victoria
I have been in and out of this Forum since my diagnosis in 2005. I am still struggling to accept that I have this disease. Whenever I flare-up, I get desperate, go to the doctors, order new supplements, change my diet, etc. Then mysteriously things get better and I start feeling like I'm a normal person again. A few beers, tomatoes, pieces of chocolate later...well, you know the story.
I first had this disorder in the late 1970s, when I was in my early 20s. I had been living in the Middle East and had just recovered from a life-threatening bout of typhoid fever. When I returned, the IC hit. Of course, I wasn't diagnosed with anything and was told that it was all in my head. I remember leaving yet another doctor's office in tears, and feeling as if my life was over--no more sex, traveling, a good night's sleep, or days without pain. Then, mysteriously, the condition remitted, and stayed away for 35 years!!
In 1993 I had the sudden onset of fibromyalgia, but with the help of a great doctor it was brought under control. I have been taking Ultram and Lodine XL for this condition since 1995. I am lucky that I found a combination of meds for it that works. Of course, now I'm wondering whether the chronic use of these meds triggered or worsened my IC.
The IC came back in 2005. At first it was a minor annoyance, but it's gotten progressively worse. I do not have the condition under control yet. I've tried various supplements, acid reducers, Algonot products, Aloe Vera, ad nauseum, basically everything for sale on the IC website. Nothing has really worked. I know of some dietary things that are sure to cause a flare (acidic drinks, booze, tomatoes, vinegar, almost all fruits). I take Oxybutin 20 mg a day; without it, I go into instant flare. I'm not taking anything else for it right now except for OTC Pyridium, which doesn't help severe flares.
Most of the time I live in a state of low-level misery. I can work and have sex sometimes, but my boyfriend has to put up with my constant peeing. I can't imagine living with a man and having a normal relationship. Sometimes weeks go by when I barely function due to a flareup. I routinely pee 8 to 12 times a night. I wear pads every day and adult diapers when things are really bad. I am constantly pushing and straining to empty my bladder. I cannot hold anything in there for even a moment due to excruciating pain. When I'm flaring I will be pushing out pee every 10 minutes or less. Naturally, I am now getting lower back pain.
I have had very little luck with doctors. I live in LA so I have access to some of the best, including the ****urologist. I am very disappointed in my treatment at UCLA thus far. The last time I was there they did a cystoscopy on me in the office with no anesthesia, and I was screaming in pain. They told me that they couldn't find anything. When they were done I could hardly walk and there was blood all over the table. They treated me like I was a nuisance and I had to crawl out of the office in severe pain. The only thing that seemed to interest them was when I told them that I had blood in my urine. My doctor subsequently ordered thousands of dollars' worth of tests, MRIs with contrast, CT scan, etc., etc. Just my copays were over a grand. I haven't gone back for the results because I'm so disgusted with them over there.
I had a more thorough cystoscopy under anesthesia back in 2005 and that doctor found Hunner's ulcers. That doctor, unfortunately, was one of those types who gets mad at you when you don't improve. He basically cut me loose. So I ended up at **** and I'm not getting anywhere. They have nothing to say to me when I ask, "why would there be ulcers then, and not now?" They want me to take Elmiron but I took it for years without much change and it would cost me $175 for a month's supply.
Anyway thanks to those of you who have read this sad story. I hope that someday I will find the right combination of meds, a good doctor, the right supplements, etc., to at least get this thing under control. I am so sick of being in pain, wetting my clothes, and feeling out of control.
Best wishes,
Victoria
,but im here to share information with everyone.Maybe we can find a cure one day
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