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Hi Everyone,
I am a 29 year old female and was just diagnosed with IC on Monday afternoon. Well, at least the words out of the urologist's mouth were "I believe cystitis is causing part of the problem" and "I believe you are in the early stages of IC". The RN in the room and I both took it as an official diagnosis. Anyway, my journey to the diagnosis of IC began last August of 2010 when I was 28. It was a Friday morning, and I woke up with severe fatigue, tons of nausea, and a low-grade fever. I could barely lift my head off of the pillow, that is how tired I was. Later on that same day, I started to feel some crampy pelvic pain, only on my right side, similar to menstrual cramps. This is in addition to the earlier symptoms. I knew that it was too soon in my cycle for it to be cramps. The pain, to this day, is always just to the right of my bladder. It can be crampy, stabbing, or burning. The next morning I went to urgent care when they opened, because the pain got worse. The did a urine on me, and I believe it was positive for ketones, blood, and protein. They sent me to the ER for a Cat Scan to see if I had kidney stones, a ruptured ovarian cyst, or appendicitis. Everything checked out to be negative, so I was sent home. My doctor on Monday sent me back to the ER to see if they had missed anything, and they still had no conclusion about my pain, so I was sent home, again. A follow-up to a NP at my OBGYN's office showed no signs of any gynocological issues going on. All urines during this month, also, tested positive for a trace amount of blood.
I had a brief spell from September to October where my pain and the other symptoms seemed to subside. Then, in November, all of my symptoms came back. Additionally, I noticed that I was urinating a little more than usual, because I was also noticing some urgency that had never been there before. Hence, I was urinating more to try and get rid of the urgency. At my request, I had my PCP refer me to a urologist. After completing a lot of paperwork very thoroughly, and answering a lot of specific questions, the urologist and the NP in his office performed a pelvic exam. I was told that I had pelvic floor dysfunction and that my pelvic pain was the result of pelvic floor spasms. I said "what about the microscopic hematuria?". And the uro and NP attributed it to me sometimes straining to start my urine flow. In my mind, I know I have never strained hard enough to begin urinating so that it would cause microscopic hematuria. I am also a medical professional, so I know these things, LOL. They gave me some samples of Prosed (not even a Rx) and prescribed pelvic floor PT. I left that office crying from the pain of the exam, as well as because of the frustration of not knowing what PFD was and what the PT was about. I never did go to PT. I decided, instead, that I needed another opinion...
I decided my 2nd opinion better come from my OBGYN (the actual doctor, not NP, no offense), who I trust with my life. I couldn't get in any sooner than my annual exam, which was earlier this month. She did a pelvic exam and kind of disagreed with the PFD diagnosis. She said I might be spasming down there a bit, but that PFD would not cause a low grade fever and/or microscopic hematuria. And, my urine that day was still trace positive for blood. She decided she wanted me to have a microscopic hematuria work-up. She referred me to another urologist. Last week I had a consultation with him, and he mentioned the possibility of early IC. On Monday I had an in-office cysto with a KCl sensitivity test. LOTS of pain with the catheter and the scope. He diagnosed me with early IC based on all of my symptoms (I have all of them that are listed in the Elmiron pamphlet), based on the KCl test making me a little crampy (on a scale of 1-5, I gave the pain a 2), and based on how I answered the questionnaire on Elmiron's website. I got a score of 13 on it. I just started on Elmiron yesterday.
So, with all of this being said, here are some questions I have:
1. My in-office cysto showed a healthy-looking bladder with no stones, tumors, ulcers, or glomerulations. My uro said I could still have IC because early IC can present itself with a healthy-looking bladder. Any thoughts on this?
2. My frequency is not too bad, normally 8-10 times within a 24 hour period. Does anyone else have frequency that is not too horribly frequent?
3. My worst with frequency was 16 times in 24 hours. This was this past Friday. However, I had no pain. Has this ever happened to anyone, as in no pain but more urinating in one day?
4. At my worst (flaring), I always have the following other symptoms: low-grade fever, microscopic hematuria (trace positive for blood), nausea, and lots of fatigue. Does anyone else flare this way?
5. Finally, my pain occurs soon after urinating, while my bladder is filling up with urine. It is definitely painful by the time my bladder is full. There is a short time period of relief right after I pee, and then the pain begins again. Any thoughts?
Thanks in advance for your responses! Sorry this is so long, but I wanted to be thorough!
I am a 29 year old female and was just diagnosed with IC on Monday afternoon. Well, at least the words out of the urologist's mouth were "I believe cystitis is causing part of the problem" and "I believe you are in the early stages of IC". The RN in the room and I both took it as an official diagnosis. Anyway, my journey to the diagnosis of IC began last August of 2010 when I was 28. It was a Friday morning, and I woke up with severe fatigue, tons of nausea, and a low-grade fever. I could barely lift my head off of the pillow, that is how tired I was. Later on that same day, I started to feel some crampy pelvic pain, only on my right side, similar to menstrual cramps. This is in addition to the earlier symptoms. I knew that it was too soon in my cycle for it to be cramps. The pain, to this day, is always just to the right of my bladder. It can be crampy, stabbing, or burning. The next morning I went to urgent care when they opened, because the pain got worse. The did a urine on me, and I believe it was positive for ketones, blood, and protein. They sent me to the ER for a Cat Scan to see if I had kidney stones, a ruptured ovarian cyst, or appendicitis. Everything checked out to be negative, so I was sent home. My doctor on Monday sent me back to the ER to see if they had missed anything, and they still had no conclusion about my pain, so I was sent home, again. A follow-up to a NP at my OBGYN's office showed no signs of any gynocological issues going on. All urines during this month, also, tested positive for a trace amount of blood.
I had a brief spell from September to October where my pain and the other symptoms seemed to subside. Then, in November, all of my symptoms came back. Additionally, I noticed that I was urinating a little more than usual, because I was also noticing some urgency that had never been there before. Hence, I was urinating more to try and get rid of the urgency. At my request, I had my PCP refer me to a urologist. After completing a lot of paperwork very thoroughly, and answering a lot of specific questions, the urologist and the NP in his office performed a pelvic exam. I was told that I had pelvic floor dysfunction and that my pelvic pain was the result of pelvic floor spasms. I said "what about the microscopic hematuria?". And the uro and NP attributed it to me sometimes straining to start my urine flow. In my mind, I know I have never strained hard enough to begin urinating so that it would cause microscopic hematuria. I am also a medical professional, so I know these things, LOL. They gave me some samples of Prosed (not even a Rx) and prescribed pelvic floor PT. I left that office crying from the pain of the exam, as well as because of the frustration of not knowing what PFD was and what the PT was about. I never did go to PT. I decided, instead, that I needed another opinion...
I decided my 2nd opinion better come from my OBGYN (the actual doctor, not NP, no offense), who I trust with my life. I couldn't get in any sooner than my annual exam, which was earlier this month. She did a pelvic exam and kind of disagreed with the PFD diagnosis. She said I might be spasming down there a bit, but that PFD would not cause a low grade fever and/or microscopic hematuria. And, my urine that day was still trace positive for blood. She decided she wanted me to have a microscopic hematuria work-up. She referred me to another urologist. Last week I had a consultation with him, and he mentioned the possibility of early IC. On Monday I had an in-office cysto with a KCl sensitivity test. LOTS of pain with the catheter and the scope. He diagnosed me with early IC based on all of my symptoms (I have all of them that are listed in the Elmiron pamphlet), based on the KCl test making me a little crampy (on a scale of 1-5, I gave the pain a 2), and based on how I answered the questionnaire on Elmiron's website. I got a score of 13 on it. I just started on Elmiron yesterday.
So, with all of this being said, here are some questions I have:
1. My in-office cysto showed a healthy-looking bladder with no stones, tumors, ulcers, or glomerulations. My uro said I could still have IC because early IC can present itself with a healthy-looking bladder. Any thoughts on this?
2. My frequency is not too bad, normally 8-10 times within a 24 hour period. Does anyone else have frequency that is not too horribly frequent?
3. My worst with frequency was 16 times in 24 hours. This was this past Friday. However, I had no pain. Has this ever happened to anyone, as in no pain but more urinating in one day?
4. At my worst (flaring), I always have the following other symptoms: low-grade fever, microscopic hematuria (trace positive for blood), nausea, and lots of fatigue. Does anyone else flare this way?
5. Finally, my pain occurs soon after urinating, while my bladder is filling up with urine. It is definitely painful by the time my bladder is full. There is a short time period of relief right after I pee, and then the pain begins again. Any thoughts?
Thanks in advance for your responses! Sorry this is so long, but I wanted to be thorough!
03/11 
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