Bleeding question...

[Mich56]

hello everyone. My name is Michelle. I was diagnosed about 5 years ago with IC and have had it under control for close to 4 years. I do that with diet. I had taken Elmiron for the first year, however it really didn't seem to help any. I occasionally get a flare up, but they are usually pretty minor, and I kind of know when to expect them because it is from something I ate.

However, in November, I started bleeding again. That was how I first got diagnosed....kept going to dr for "infections" with a lot of blood in my urine. Just to make a long story short it took them 2 years before figuring it all out. I am sure some of you know how that goes! So anyways, started to bleed in Nov. went to the urologist, and we did another cystoscopy....incase he missed cancer or something.....nothing there. Well here we are today again, and I am bleeding once again. I have not had a flare up or anything, nor did I in Nov. So what the heck is going on. I have had two c-sections in the past two years...one in June of 03 and August of 04.

If anyone could give me some answers, or suggestions. I was thinking of going back to the dr. again and demanding other answers for this. I am not sure that it is my bladder even. Perhaps it is my kidneys!?! I really don't know anymore. I am tired of it, and I mean tired. I get really tired when I get flares, and when I start bleeding like this.

Thanks for listening.
Michelle from BC Canada

[tigger_gal]

I would diffently call your doctor. maybe he should schedule you fot a cstyo/hrdro.
good luck and keep us posted
Brat

[Sarojini]

Definitely agree -- time to call the doctor! Visibile blood in the urine should always be investigated with a few tests to rule out infection and other things. Good luck :grouphug:

[ICNDonna]

I'm another who agrees --- you really should see your doctor ASAP to find some answers. I almost always have red cells in my urine, but not visible blood.

Donna

[Mich56]

Thanks everyone! I went to my family physician today, and she tested my urine. Definitely blood there (no kidding!), but no infection. She told me to talk to my urologist and go see him. If he doesn't do any investigation on it, she would refer me to someone else for a second opinion. What a mess. This has been going on for too long! Frustrating!

Michelle

[emilyrose197377]

I am sorry to hear I hope you get the info and the help you seek. Ypu will be in my thoughts and prayers.

Take care
Kim

[shirley47]

So sorry to hear about this.I would keep on it until at least one of the doctors did something,because there has to be a reason for you doing this.I"ll keep you in my prayers

[karen10300]

Hi. When i got up the morning that I was scheduled for my hydro-cyst, I had alot of visible blood in my urine. Scared me to death because I am on coumadin which is a blood thinner.& I surely don't need this. Was very glad that I was seeing my doctor that morning and he was doing the hydro-cyst that day. During the procedure he didn't see any real active bleeding. He explained to me that what he feels happened was that while I was sleeping I filled my bladder more than I normally due and with how irritated & inflamed my bladder was and then over extending more than normal for me, it more than likely caused a blood vessel to burst. There was a tinge of blood in my urine that whole day but it was gone the next day. my doctor told me that if he had seen active bleeding he would have taken me to surgery that day to cauterize (sp?) the blood vessel. Any time there is bleeding you need to see your doctor because it is a sign that somethng is not right since this is not normal.

[Mich56]

Hey everyone!

It has been a while since I have been on here (05!) but I can tell you that things haven't changed much! I continue to have hematuria (blood in my urine) without cause (as far as I know, anyways)...last year I had a Duodenal ulcer that the doc said was something that IC patients see??! I have been under the weather for months, and have been dealing with Vertigo and headaches galor since the end of December. While it has gotten a bit better, we don't know the cause. The first doc I saw in regards to the headaches, fatigue and vertigo told me that I was depressed! Damn doctor...I did go back two weeks later and saw another Dr because the Vertigo was not going away. He told me right away that I certainly wasn't depressed b/c I was smiling too much - that of which I knew. He sent me for a CT scan, that showed nothing.

Something that I have been noticing a lot on here since coming on this site again is the vulvodynia conversations. Curious about that because for years I have had so much pain after orgasm that I can't even be touched. But it is only after the orgasm that it is most prominent. So I am not sure that is something to be concerned about. I have never spoken to my doc about it or anything...

So here I am today, tired and flu like symptoms (upset tummy, IBS stuff etc) and blood in my urine. I have had the blood since Thursday night...I am also experiencing a lot more incontinence than usual as of late. Especially when I sneeze.

Oh and another thing, two years ago I was denied life insurance from a company because they found there to be too much protein in my urine. I did go and ask my doc about that recently (yeah, I know I didn't do it right away!) and we did a 24 hour urine sample, but that must have come back normal because I didn't find out any results.

okay, enough ranting...thanks for listening :)

[Sue10]

When I was first diagnosed I had visible blood in my urine. It was a dark color.....looked like tea. It usually happened at my first morning pee. My urologist said this is common with IC. I have not had that anymore since my IC is better controlled these days.
I hope you get some answers.

[Katrina]

:welcome: back
Something that I have been noticing a lot on here since coming on this site again is the vulvodynia conversations. Curious about that because for years I have had so much pain after orgasm that I can't even be touched. But it is only after the orgasm that it is most prominent. So I am not sure that is something to be concerned about. I have never spoken to my doc about it or anything... That sounds more like PFD to me than vulvodynia. You may want to look into pelvis floor dysfunction...and something that can relax your pelvic muscles may solve the problem.

I have never had visible blood in my urine except during infections so I not very helpful with that...but since I loose plenty of blood in my stools I can definately relate to the issues that chronic blood loss creastes...dizziness, fatigue, headaches....are you iron deficient?

Also if you are having control issues or a lot of spasms...that too may be related to the pelvic muscles somewhat....definately talk to your doctor about that aspect of IC...PFD.

leaky kidney?

[Mich56]

When I was first diagnosed I had visible blood in my urine. It was a dark color.....looked like tea. It usually happened at my first morning pee. My urologist said this is common with IC. I have not had that anymore since my IC is better controlled these days.
I hope you get some answers.


Thanks Sue10 - I have had blood continuously (mostly microscopic) too, but I get these bouts where it looks more like cranberry juice. They keep telling it is common with IC as well, however, because of all the other symptoms (extreme fatigue, IBS etc) I want some further testing to rule out kidney issues. However, they haven't been so accomodating.

[Mich56]

:welcome: back
That sounds more like PFD to me than vulvodynia. You may want to look into pelvis floor dysfunction...and something that can relax your pelvic muscles may solve the problem.

I have never had visible blood in my urine except during infections so I not very helpful with that...but since I loose plenty of blood in my stools I can definately relate to the issues that chronic blood loss creastes...dizziness, fatigue, headaches....are you iron deficient?

Also if you are having control issues or a lot of spasms...that too may be related to the pelvic muscles somewhat....definately talk to your doctor about that aspect of IC...PFD.

leaky kidney?

Thank you for this! I am going to do some investigation on this...and possibly start doing some exercises for it to see if it improves...

As for the iron, that is certainly a concern I have been anemic in the past and probably am every month during my menstruation.

I guess for me one of the biggest issues is the docs around here....can't get a good one that will spend more than five minutes with me. I have had my family md for a while, yet I wold like to have one that will take the time to listen to me and do the testing that is related to what I am saying rather than jumping the gun for meds all the time.

[Cortana-mana]

It sounds a lot like PFD problems to me too. My body doesn't know how to stop spasming after an orgasm. When I pee after sex, the spasm will sometimes be strong enough to cut off my urine stream, let it go again, cut it off again, let it go again...etc.

I find heating pads or warm baths immediately after really helps to relax those muscles. I was told by my pt to do gentle stretches like the child's pose. Those are amazingly helpful, but probably something you should consult a doctor about before trying.