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Hello all, my name is Jonathan (35 year old male) and I found this website today and thought I’d join. My story is about just 6 months old and I am not 100% sure I have IC yet, though my urologist has me on an IC diet. I’ll try to keep my story from being too long but want to give enough info to see if perhaps someone else has experienced a similar situation.
In mid-March I had to go to Florida for a wedding and on the flight, it hit me that I really had to go, but just my luck we were descending and I couldn’t go. So I had to hold it for 45 min. and by the time we landed I literally had pain in my lower back and in my bladder. I was lucky to get to the restroom in the airport and felt completely relieved at that point.
Well, I was down there 3 days and I noticed all of a sudden that I started having sensation type feelings that I had to go. Almost like a panic sensation. I’d immediately go to the restroom and feel somewhat better, but it would happen again later. The whole 3 days were pure torture as I kept having the sensation and worried at times that I had to go, but then I really didn’t. Other times I felt I had to go and really did. I kept thinking back to the plane trip and wondering if something happened by me holding it.
Well I returned home and immediately got an appointment with my primary care doctor and he took a urine sample and said everything was fine. The concern, I guess, was that maybe holding the urine for that long may have caused a UTI or other infection, but nothing was found. He said he’d refer me to a urologist.
Well, I went to the one he referred me to and they took a urine sample and did a physical prostate exam. The urologist really wasn’t sure and prescribed me with some sort of anti-inflammatory sense I mention a sensation or tingliness in the urethra and that my bladder when full felt more like it was full in the penis area and not the bladder. Nothing really got better and I went back and immediately was given to a PA and she thought I had an overactive bladder and gave me samples of Vesicare.
I took the vesicare for some weeks with little to no change and had one last appointment with this urologist and he really didn’t make me think he knew what he was doing, so I changed urologists.
Well, before I continue, keep in mind that months are passing and I am not incontinent, just have an irritated feeling in the urethra and occasionally have multiple urges to go to the restroom, but I guess my body is re-adapting to this new change as my bladder for the life of me does not seem connected to my penis anymore, with the sensation feeling.
So, I go to the new urologist and he does a physical prostate exam and he declares I have a prostate infection (prostatis) as it hurt when he pressed on my prostate. Now he did press hard and it was only my second, so it may have hurt worse to me than normal. Anyways, a course of 6 weeks on antibiotics was prescribed and also another anti-inflammatory and basically nothing changed. I still had sensation at my desk of pressure in the urethra indicating perhaps I should try to go to the restroom and an irritated feeling. I did mention to both urologists that two times after sex with my wife I had a sharp pain and blood and they both just said it was blood vessels likely breaking, particularly if there was nothing continuing after that short time. Really, I was at my wits end.
On a return visit, another $50 copay, the urologist wanted to set my up for urodynamics and a cystoscopy. Well being 35 and never having a catheter I asked if the cystoscopy would be better to have first. (I learned ONLY during the cystoscopy that they still use a catheter for numbing—nice of them to tell me.) So I set up the appointment for a cystoscopy which was last Tue.
Now the urologist did not go over the procedure with me, except to say no strictures were seen, but set yet another appointment at the end of this month. The nurse gave me a IC diet sheet, which was the ONLY indication that is what he thought I might be suffering from. I will say that since mid-March until last week, I have not kept to any one diet and have not noticed the issues getting worse or better, but just remaining the same. In fact, in August on my anniversary I had quite a bit of alcohol and noticed no change and actually less problems, which is why I am just beside myself.
I don’t know if I have IC or something else. I have mentioned to both urologists lower mild back pain on the right side and neither thought it was something to worry about.
In short, my symptoms are as follows:
1. Irritation in penis/urethra while sitting and sometimes when voiding.
2. Bladder when it is full or in need of voiding no longer feels full in the bladder area but now feels full at base of penis or middle of penis.
3. When I go to restroom, sometime it’s a lot and other times it’s not as much as it seems it should be.
4. The flow is sometimes strong and sometimes weak.
5. The sensation of urine coming out of penis feels different, almost like urethra is numb, yet still feels irritated, if that makes any sense.
6. I do milk the urethra as I’ve had dribbles in the past and found this to help out and noticed that even after milking, shaking and blotting on toilet paper that when I go to sit back down at desk, 2 min, 5 min, maybe even 10-15 min. late a little dribble comes out just enough to make a little damp place in my underwear. But due to all of the other issues, I don’t even know what is normal with that anymore.
7. Constant feeling even after going that there is something there. I have even had 16oz. bottles of water that before mid-March of this year I could drink and not have to go immediately, where now I’ll have to go 5-6 times in 2 hrs. occasionally, BUT not all the time. There’s NO consistency.
That’s all I can think of right now but thanks for reading and any advice.
In mid-March I had to go to Florida for a wedding and on the flight, it hit me that I really had to go, but just my luck we were descending and I couldn’t go. So I had to hold it for 45 min. and by the time we landed I literally had pain in my lower back and in my bladder. I was lucky to get to the restroom in the airport and felt completely relieved at that point.
Well, I was down there 3 days and I noticed all of a sudden that I started having sensation type feelings that I had to go. Almost like a panic sensation. I’d immediately go to the restroom and feel somewhat better, but it would happen again later. The whole 3 days were pure torture as I kept having the sensation and worried at times that I had to go, but then I really didn’t. Other times I felt I had to go and really did. I kept thinking back to the plane trip and wondering if something happened by me holding it.
Well I returned home and immediately got an appointment with my primary care doctor and he took a urine sample and said everything was fine. The concern, I guess, was that maybe holding the urine for that long may have caused a UTI or other infection, but nothing was found. He said he’d refer me to a urologist.
Well, I went to the one he referred me to and they took a urine sample and did a physical prostate exam. The urologist really wasn’t sure and prescribed me with some sort of anti-inflammatory sense I mention a sensation or tingliness in the urethra and that my bladder when full felt more like it was full in the penis area and not the bladder. Nothing really got better and I went back and immediately was given to a PA and she thought I had an overactive bladder and gave me samples of Vesicare.
I took the vesicare for some weeks with little to no change and had one last appointment with this urologist and he really didn’t make me think he knew what he was doing, so I changed urologists.
Well, before I continue, keep in mind that months are passing and I am not incontinent, just have an irritated feeling in the urethra and occasionally have multiple urges to go to the restroom, but I guess my body is re-adapting to this new change as my bladder for the life of me does not seem connected to my penis anymore, with the sensation feeling.
So, I go to the new urologist and he does a physical prostate exam and he declares I have a prostate infection (prostatis) as it hurt when he pressed on my prostate. Now he did press hard and it was only my second, so it may have hurt worse to me than normal. Anyways, a course of 6 weeks on antibiotics was prescribed and also another anti-inflammatory and basically nothing changed. I still had sensation at my desk of pressure in the urethra indicating perhaps I should try to go to the restroom and an irritated feeling. I did mention to both urologists that two times after sex with my wife I had a sharp pain and blood and they both just said it was blood vessels likely breaking, particularly if there was nothing continuing after that short time. Really, I was at my wits end.
On a return visit, another $50 copay, the urologist wanted to set my up for urodynamics and a cystoscopy. Well being 35 and never having a catheter I asked if the cystoscopy would be better to have first. (I learned ONLY during the cystoscopy that they still use a catheter for numbing—nice of them to tell me.) So I set up the appointment for a cystoscopy which was last Tue.
Now the urologist did not go over the procedure with me, except to say no strictures were seen, but set yet another appointment at the end of this month. The nurse gave me a IC diet sheet, which was the ONLY indication that is what he thought I might be suffering from. I will say that since mid-March until last week, I have not kept to any one diet and have not noticed the issues getting worse or better, but just remaining the same. In fact, in August on my anniversary I had quite a bit of alcohol and noticed no change and actually less problems, which is why I am just beside myself.
I don’t know if I have IC or something else. I have mentioned to both urologists lower mild back pain on the right side and neither thought it was something to worry about.
In short, my symptoms are as follows:
1. Irritation in penis/urethra while sitting and sometimes when voiding.
2. Bladder when it is full or in need of voiding no longer feels full in the bladder area but now feels full at base of penis or middle of penis.
3. When I go to restroom, sometime it’s a lot and other times it’s not as much as it seems it should be.
4. The flow is sometimes strong and sometimes weak.
5. The sensation of urine coming out of penis feels different, almost like urethra is numb, yet still feels irritated, if that makes any sense.
6. I do milk the urethra as I’ve had dribbles in the past and found this to help out and noticed that even after milking, shaking and blotting on toilet paper that when I go to sit back down at desk, 2 min, 5 min, maybe even 10-15 min. late a little dribble comes out just enough to make a little damp place in my underwear. But due to all of the other issues, I don’t even know what is normal with that anymore.
7. Constant feeling even after going that there is something there. I have even had 16oz. bottles of water that before mid-March of this year I could drink and not have to go immediately, where now I’ll have to go 5-6 times in 2 hrs. occasionally, BUT not all the time. There’s NO consistency.
That’s all I can think of right now but thanks for reading and any advice.
to the IC Network.
. Hospital based pain medicine doctor, pain therapist
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