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First it was pinkish and now it's more dark. It's only visible on my panties...can't see any blood when I pee. Doctor did urinanalysis several times and it always shows blood.
He doesn't know what's going on - I passed two small kidney stones 4 weeks ago, had a bladder infection before then, but cultures now are clean.
We started on the path of an IC diagnosis for me, just because of what you described.
I had off and on abdominal pain, lower back pain, visible blood in my urine (very dark), in office test said infection, but lab culture said no infection. Then we started talking about food triggers and other tests, etc. Eventually had cystoscopy with hydrodistention in November and got official diagnosis.
I was getting used to the IC diagnosis and paying attention to things that made me flare when I found out that I had multiple kidney stone blockages that were causing some of my more severe pain. After I finish up my stone treatment, I will go back to tracking things that cause me flares because there won't be any confusion about if it if kidney stone or IC pain.
No infection for Bob either, but he recently had blood work done and is anemic. Doc is pretty sure it is the IC bladder just weeping (crying). Baby that bladder is the only thing that works for him. Antibiotics are discussed here all over. Never had to use them, but know more women than men tend to get infections. (Could be wrong about that, we just have not had to deal with it YET). Think a lot of ICers have traces of blood in their urine??? Can't see it, and if you take pyridium, you would never be able to see it anyway.
I always have microscopic hematuria when I have to give a urine sample. I have never had visible blood in my urine. I was curious about this as well so I looked through some old posts on this board and found that it seems to be pretty common amongst most of us.
I also see Dr. Moldwin. Are you in NYC? I've only seen him once, recently, and I liked him and felt like he listened. My main issue is the feeling of always needing to pee when I know I don't.
Has Dr. Moldwin helped you out a great deal? What are your symptoms and what has helped the most?
Don't worry about the blood. I know it would be nice if it really were an infection that could be fixed but I think it's just normal IC stuff. Ugh, this disease is ridiculous and it's even more ridiculous that through reading this board it seems like very little people figure this puzzle out. It freaks me out!
Rachael
Dr. Moldwin and Dr. Kohan are the 2 best IC doctors in our area (ok Long Island, close enough) IMHO. I prefer Moldwin but Kohan is great and very nice as well. My primary symptoms are frequency, pain and the ever popular periodic super bad flares. I'm in Queens. Thanks for reaching out.
I often have leukocytes in my urine too though not the red blood cells. When they are there my urine is cloudy and I think maybe I'm getting yet another infection....my pcp always treats me when there are white blood cells because it could be the start of an infection.
Mine has a similar approach but I'm only going on a steady diet of antibiotics if Dr. moldwin says I should. Lol.
Hi Hannah,
I just saw your post. Sorry you didn't get a response, I am sure it wasn't intentional. Anyway about your topic. I always have hematuria (blood in urine) but mine isn't visible. I have also done the at home test and it will say I have lukesytes (I know that is mispelled, sorry) but when I go to the Dr and they do a culture mine comes up negative. As I understand it, my Dr goes by the culture and not the dip stick test. Therefore, he doesn't give me an antibiotic. I thought that what showed in the culture was the definitive answer. I don't know what to tell you. I don't usually have many infections though. Hopefully someone else will see this and tell you their experience.
I assume you are in pain from the infection? I hope they are giving you something for that.
Sandra
I'm so used to the pain I didn't even ask. Lol. I just use heat. That your situation even sounds like mine makes me feel a bit of relief, thanks for your response.
I often have leukocytes in my urine too though not the red blood cells. When they are there my urine is cloudy and I think maybe I'm getting yet another infection....my pcp always treats me when there are white blood cells because it could be the start of an infection.
I've always (for years) had blood in my urine. Sometimes visible, sometimes not. I don't know if it's an IC "symptom" but I've seen that lots of people here that have it.
I always have microscopic hematuria when I have to give a urine sample. I have never had visible blood in my urine. I was curious about this as well so I looked through some old posts on this board and found that it seems to be pretty common amongst most of us.
I also see Dr. Moldwin. Are you in NYC? I've only seen him once, recently, and I liked him and felt like he listened. My main issue is the feeling of always needing to pee when I know I don't.
Has Dr. Moldwin helped you out a great deal? What are your symptoms and what has helped the most?
Don't worry about the blood. I know it would be nice if it really were an infection that could be fixed but I think it's just normal IC stuff. Ugh, this disease is ridiculous and it's even more ridiculous that through reading this board it seems like very little people figure this puzzle out. It freaks me out!
Hi Hannah,
I just saw your post. Sorry you didn't get a response, I am sure it wasn't intentional. Anyway about your topic. I always have hematuria (blood in urine) but mine isn't visible. I have also done the at home test and it will say I have lukesytes (I know that is mispelled, sorry) but when I go to the Dr and they do a culture mine comes up negative. As I understand it, my Dr goes by the culture and not the dip stick test. Therefore, he doesn't give me an antibiotic. I thought that what showed in the culture was the definitive answer. I don't know what to tell you. I don't usually have many infections though. Hopefully someone else will see this and tell you their experience.
I assume you are in pain from the infection? I hope they are giving you something for that.
So when they (My regular uro not my specialist uro) culture my urine they find no bacteria but there's blood in my urine and white cell activity and the little sticks keep turning purple. AZO test strips too. So I test positive for infection in the office but not in the lab cultures. We've tried cipro and macrobid with no results and I'm confused and worried. Anyone have experience with this? (Personal, I know you're not doctors giving medical advice, etc. Unless you are. Lol.)
I need feedback on this badly, it's been going on 3 months. I see moldwin in a few weeks and no they can't make it sooner.
Help?
Love, H.
I'm a little disappointed no one bothered to respond to this. You guys are my only source of other ic information and even a kind word would have helped.
So when they (My regular uro not my specialist uro) culture my urine they find no bacteria but there's blood in my urine and white cell activity and the little sticks keep turning purple. AZO test strips too. So I test positive for infection in the office but not in the lab cultures. We've tried cipro and macrobid with no results and I'm confused and worried. Anyone have experience with this? (Personal, I know you're not doctors giving medical advice, etc. Unless you are. Lol.)
I need feedback on this badly, it's been going on 3 months. I see moldwin in a few weeks and no they can't make it sooner.
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