Man with IC, just diagnosed this month, please help

[RobertAG]

I was diagnosed with IC on September 3rd. Prior to that date, I had to urinate more often than usual and sometimes I would have to go back to the bathroom to urinate a few drops more. In July, I started having some pain in the tip of my penis. After failed attempts at anti-biotics, the doctor scheduled a cystoscopy with hydrodistension and diagnosed me with IC. I never heard of it before and he told me nothing about it. When I got home, I researched IC on the Internet and was horrified and scared that my life as I knew it was over.

Since September 3rd, I have been in pain every day. What is strange about my condition now is that I wake up with minimal pain that usually increases to a burning sensation in the afternoon. When I eat dinner, for some reason, I feel better. Has anyone experienced this? Also, yesterday, I woke up and was urinating a lot of blood. It looked like all blood and no urine. I went to the ER and was told that this problem is typical of IC. I was weary of what I was told because I did not read this on any of the web sites I looked at, including the ICN. The blood seemed to clear up a bit when I left the hospital only to return last night and this morning. It is better now, but I am afraid it may come back. Has anyone experienced this? Does anyone has any insights? Could this be the after effects of the cystoscopy, even though it is three weeks later. Please advise if you can.

I have read a lot of the information on this site and the posts and am relieved that such a caring group of people are out there to help.

[Stella1609]

A lot of IC patients have microscopic blood, but visible blood in your urine is NOT normal! I'd make an appointment for a second opinion.

[VickiB]

Welcome to the ICN RobertAG!

The amount of blood you describe seems excessive to me and three weeks strikes me as coming on a bit late if it were related to your cysto/hydro. But, I'm not a doctor so my thoughts aren't worth a whole lot! Have you been in contact with the doctor who did your procedure about this? If not, you might want to try to touch base with him tomorrow. -For your own peace of mind if nothing else!

When I'm in a flare, starting off the day with minimal pain that increases as the day wears on is typical for me. I think the physical activity of the day has a cumulative effect, making my irritated bladder more & more angry as the hours pass.

I hope the information you've been reading on this site has taken you to the diet section? (Diet makes all the difference in the world for me so I always feel the urge to champion it!)

I hope the pain you're experiencing eases soon!
Vicki

[acapa]

Robert,

I would definitely get in to see another doc ASAP. Peeing pure blood seems more than usual IC symptoms for men from what I have heard and from what I have read, IMHO.

[elitynski]

Robert, I would definitely see a Dr. about the blood in your urine. It may be normal or it may be something else. Regardless, it would be best to check with a medical provider to find out exactly what is going on.

Please don't panic, but simply make the appt and I would guess since you are showing blood in the urine they would fit you in very quickly.

Good luck and please let us know how you are doing.

[ICNDonna]

That much blood could indicate that you have an infection. Definitely give your uro a call and ask to be checked. That much blood is NOT typical of IC!!!!!

Are you following an IC diet? If not, I think today is a good day to start.

Sending healing thoughts,
Donna

[RobertAG]

I appreciate all of the responses to my message. I have an appointment with the doctor tomorrow. I had a small amount of blood in my urine this morning. I am not urinating that much since this bleeding began and while I have some pain, it has been relatively mild.