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I would like to remind all new potential IC patients how VERY IMPORTANT it is to DOCUMENT EVERYTHING about your symptoms before and during your doctors visits.
I had symptoms of a UTI for three weeks, and already taken anti-biotics twice with one hospital visit because of the pain, before I stumbled on a walk-in urologist who suggested that I had IC. At that point, i already knew a little bit about IC after discovering this forum but couldn't find any doctor who knew what it was. He told me to document a voiding diary for a week and then prescribed me elavil. At the same time, my family doctor had set up an appointment for me with an office urologist that i had to wait 3.5 months to see. During those three months, I healed tremendously, but sadly my walk-in uro decided to leave the clinic. By the time i had my first consultation with the office urologist, the pain was still chronic, but it had become manageable and i was no longer in tears everyday. We finally scheduled a cystoscopy two weeks later and he followed up with a letter to my family doctor.
I didn't realize how important documenting evidence was. When i was first in a lot of pain, I wrote on the forum about the feelings i was dealing with but nothing concrete about my urine. The walk-in doctor that prescribed me elavil told me to start peeing in a cup which i started doing. At my worst, I knew I was slightly bleeding. It was esp apparent in the mornings, i would pee into one of the many empty water bottles i had lying aound and it would be a deep orange color (and this is WITHOUT taking the bladder pain pill that turns your pee orange. That pill is apparently "not available" in Ontario anymore). Aside from that, my urine was very murky. You could not see your fingers on the other side of this clear bottle if you held it up. and you could see strips of tissue-like sediment. Slowly, i started to recover and now my urine looks mostly normal. anyway, I now realized that I should have documented this somehow.
WRITE EVERYTHING DOWN THAT YOU CAN ABOUT YOUR URINE. PEE IN A CUP AND TAKE PICTURES OF IT IF YOU CAN. esp if it doesn't look normal!
I think that's what would have helped me a lot and that I wouldn't be stuck with the predicament i am now in.
The following are excerpts from the letter that was given to my family doctor by the urologist that did my cystoscopy. I had it photocopied and i am now sharing it with you. I now have to re-convince my family doctor that what i have is real.
"...Cystoscopic review was coordinated and this fails to demonstrate any pathology to suggest either chronic cystitis, IC or carcinoma in situ. (Vixie) has been reassured and encouraged to cut back in her consumption of water, of which she's been drinking 3 litres a day, to perhaps 1.5-2 liters. Further, I would be very reluctant to stop the ELavil abruptly and have suggested that she follow up with you so that this can slowly be tapered and subsequently discontinued. In those individuals with IC, one symptom often seen is that of suprapubic discomfort which is relieved by micturition and which is exactly the opposite in this instance where Vixie's suprapubic discomfort is more likely to be mroe notable post micturition. One wonders whether or not some of her complaints are functional in origin...."
"...This woman's past medical and surgical history is otherwise essentially unremarkable. She was apparently seen at a walk in clinic and started on Elavil for her complaints and is now taking 150mg daily....."
My family doctor, who is very sympathetic, now does not know what to believe. I left the appointment in tears.
So to all new patients out there, if you've googled and googled and googled, then it's not a far reach to write down everything you can, it's degrading and embarrassing but taking pictures might also help. Whatever you can so you have something more concrete to show your family doctor.. in the unfortunate case that your uro doesn't believe you.
I had symptoms of a UTI for three weeks, and already taken anti-biotics twice with one hospital visit because of the pain, before I stumbled on a walk-in urologist who suggested that I had IC. At that point, i already knew a little bit about IC after discovering this forum but couldn't find any doctor who knew what it was. He told me to document a voiding diary for a week and then prescribed me elavil. At the same time, my family doctor had set up an appointment for me with an office urologist that i had to wait 3.5 months to see. During those three months, I healed tremendously, but sadly my walk-in uro decided to leave the clinic. By the time i had my first consultation with the office urologist, the pain was still chronic, but it had become manageable and i was no longer in tears everyday. We finally scheduled a cystoscopy two weeks later and he followed up with a letter to my family doctor.
I didn't realize how important documenting evidence was. When i was first in a lot of pain, I wrote on the forum about the feelings i was dealing with but nothing concrete about my urine. The walk-in doctor that prescribed me elavil told me to start peeing in a cup which i started doing. At my worst, I knew I was slightly bleeding. It was esp apparent in the mornings, i would pee into one of the many empty water bottles i had lying aound and it would be a deep orange color (and this is WITHOUT taking the bladder pain pill that turns your pee orange. That pill is apparently "not available" in Ontario anymore). Aside from that, my urine was very murky. You could not see your fingers on the other side of this clear bottle if you held it up. and you could see strips of tissue-like sediment. Slowly, i started to recover and now my urine looks mostly normal. anyway, I now realized that I should have documented this somehow.
WRITE EVERYTHING DOWN THAT YOU CAN ABOUT YOUR URINE. PEE IN A CUP AND TAKE PICTURES OF IT IF YOU CAN. esp if it doesn't look normal!
I think that's what would have helped me a lot and that I wouldn't be stuck with the predicament i am now in.
The following are excerpts from the letter that was given to my family doctor by the urologist that did my cystoscopy. I had it photocopied and i am now sharing it with you. I now have to re-convince my family doctor that what i have is real.
"...Cystoscopic review was coordinated and this fails to demonstrate any pathology to suggest either chronic cystitis, IC or carcinoma in situ. (Vixie) has been reassured and encouraged to cut back in her consumption of water, of which she's been drinking 3 litres a day, to perhaps 1.5-2 liters. Further, I would be very reluctant to stop the ELavil abruptly and have suggested that she follow up with you so that this can slowly be tapered and subsequently discontinued. In those individuals with IC, one symptom often seen is that of suprapubic discomfort which is relieved by micturition and which is exactly the opposite in this instance where Vixie's suprapubic discomfort is more likely to be mroe notable post micturition. One wonders whether or not some of her complaints are functional in origin...."
"...This woman's past medical and surgical history is otherwise essentially unremarkable. She was apparently seen at a walk in clinic and started on Elavil for her complaints and is now taking 150mg daily....."
My family doctor, who is very sympathetic, now does not know what to believe. I left the appointment in tears.
So to all new patients out there, if you've googled and googled and googled, then it's not a far reach to write down everything you can, it's degrading and embarrassing but taking pictures might also help. Whatever you can so you have something more concrete to show your family doctor.. in the unfortunate case that your uro doesn't believe you.
Can you find a new dr?
then put me on Macrodantin for 6 weeks. Its important to find a healthcare provider who respects you and will listen to you.
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