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I was first diagnosed with Interstitial Cystitis in 2010 by family doctor. I had been diagnosed time after time (as in every week. I'm sure the doctor was tired of seeing my face) urinary infections. However, I didn't respond to any of the four antibiotics I had attempted. Various urine cultures came back negative.
At the time, I was just tired of having to pee all of the time. I'd occasionally have some urethral burning, but not very significantly. I was put on Elmiron and Oxybutynin. The Elmiron seemed to do nothing and the Oxybutynin seemed to make it worse and GIVE me an actual urinary infection. I had terrible bloating and did actually respond to antibiotics that time.
I had done some reading on IC (and from my own knowledge in the veterinary world - animals get it too!) and hadn't thought too much about it. My frequency went away on it's own and I kinda shrugged off the diagnosis.
This year, starting around March, I was worried a previous gynecological issue had returned. I was having horrendous abdominal pain. Sweating, panting, fetal position curling, fever, pain so bad I would come close to vomiting.
When I was 20, I had grown a tumor on my left ovary. They removed it and it came back again. The second time it had come back, I told them to take the ovary out. One ovary > cancer, even if I was only 20. Even though the biopsy was negative, the cells surrounding it were atypical, which as I know from the veterinary world, usually indicates either pre-cancerous or at least not good.
All of my gynecological results (ultrasound, bloodwork, etc) came back normal. I was highly confused. It was almost identical pain as I had when I had the tumor. I was ridiculously upset. I didn't know where the pain was coming from.
At some point, it dawned on me that it could be IC related. I pulled up information on IC again and began reading about how abdominally painful the disorder is and that many people are on opiates and other heavy-duty pain killers just to cope with the pain; that the life of an IC patient is similar to that of a dialysis patient or a patient with chronic cancer pains.
I was ecstatic. Why? I knew this was the reason. It all made so much sense now. I immediately started seeing my doctor to find out what I could do and to stop the pain that was simply unbearable. I knew that this while this disorder could change the quality of my life, it wasn't cancer.
I'm currently on Elmiron still (after reading that it can take quite a while for any sort of improvement to show) and my family doctor has put me on Imipramine. He also has me on Vicoprofen per need (I am currently up to about 3-4 a day, sigh).
I'm trying to get back in with my urologist, who I had also seen at the time. He had me set up for a cystoscopy (around the time I had first seen my family doctor for the urinary issues) when I lost my insurance and had to cancel.
Now that I am in more pain than ever, I am desperately trying to get back in with my urologist. They said the earliest they could get me in would be July 8th, even with my insisting the urgency of the matter.
Looks like I'll be looking for a new urologist.
Anyway, it is so wonderful to be surrounded by people that understand what this is like. Look forward to becoming an active member
At the time, I was just tired of having to pee all of the time. I'd occasionally have some urethral burning, but not very significantly. I was put on Elmiron and Oxybutynin. The Elmiron seemed to do nothing and the Oxybutynin seemed to make it worse and GIVE me an actual urinary infection. I had terrible bloating and did actually respond to antibiotics that time.
I had done some reading on IC (and from my own knowledge in the veterinary world - animals get it too!) and hadn't thought too much about it. My frequency went away on it's own and I kinda shrugged off the diagnosis.
This year, starting around March, I was worried a previous gynecological issue had returned. I was having horrendous abdominal pain. Sweating, panting, fetal position curling, fever, pain so bad I would come close to vomiting.
When I was 20, I had grown a tumor on my left ovary. They removed it and it came back again. The second time it had come back, I told them to take the ovary out. One ovary > cancer, even if I was only 20. Even though the biopsy was negative, the cells surrounding it were atypical, which as I know from the veterinary world, usually indicates either pre-cancerous or at least not good.
All of my gynecological results (ultrasound, bloodwork, etc) came back normal. I was highly confused. It was almost identical pain as I had when I had the tumor. I was ridiculously upset. I didn't know where the pain was coming from.
At some point, it dawned on me that it could be IC related. I pulled up information on IC again and began reading about how abdominally painful the disorder is and that many people are on opiates and other heavy-duty pain killers just to cope with the pain; that the life of an IC patient is similar to that of a dialysis patient or a patient with chronic cancer pains.
I was ecstatic. Why? I knew this was the reason. It all made so much sense now. I immediately started seeing my doctor to find out what I could do and to stop the pain that was simply unbearable. I knew that this while this disorder could change the quality of my life, it wasn't cancer.
I'm currently on Elmiron still (after reading that it can take quite a while for any sort of improvement to show) and my family doctor has put me on Imipramine. He also has me on Vicoprofen per need (I am currently up to about 3-4 a day, sigh).
I'm trying to get back in with my urologist, who I had also seen at the time. He had me set up for a cystoscopy (around the time I had first seen my family doctor for the urinary issues) when I lost my insurance and had to cancel.
Now that I am in more pain than ever, I am desperately trying to get back in with my urologist. They said the earliest they could get me in would be July 8th, even with my insisting the urgency of the matter.
Looks like I'll be looking for a new urologist.
Anyway, it is so wonderful to be surrounded by people that understand what this is like. Look forward to becoming an active member
I am sad that you have been diagnosed, but there are so many wonderful people who can help!
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