Post Cysto Question

[BarbS]

Hi this is my post first . I have had UTI's for 34 yrs. I was diagnosed with CIC aprox 1 1/2 yrs ago. I had tried most of the meds and therapies available. 8 months later I am now a patient who has a neurostimulator implanted to help with the IC. Though it is not for everyone I am very fortunate to have had excellent results from it. Started having what we thought was a "major flare up" aprox 1 month ago, yesterday I had a cysto w/distention, found out IC is basically in remission, bladder capacity great, lining looks good etc. Yeh!!! Though did find out urethra is very imflammed, dctr also showed me pics and explained to my husband and I that there were spots on the bladder they refer to as "chickenpox" there was a slew of them and they are what is causing the horrible pains I am having. Told us there were brought on by the re=current UTI's. Though never have had them in my life. I am very familair w/UTI's and CIC. I was wondering if anyone has ever heard of this and if so can tell me the medical name these "chickenpox" are known as. Would like to research more before my follow up w/him this week. Thanks in advance to anyone who can help. My heart goes out to all of you as we all now how painful these times can be.
Best regards,
Barb

[ICNDonna]

I'm not familiar with the term "CIC" --- is it another term for interstitial cystitis? The spots you have in your bladder might be Hunner's ulcers --- you might ask your doctor if that's what you have. They do go with IC.

I wish I had answers for you.

Warm hugs,
Donna

[vm]

That is confusing feedback b/c it sounds like he told you the bladder lining looks great - BUT there are "chicken pox" looking things on it. :confused: Perhaps you could call the office Monday and ask if they could give you the technical name for them?

[BarbS]

Hi Donna & Kim
Thanks so much for the replies. The CIC - sorry stood for "chronic" IC. These "chickenpox" things :confused: supposedly are on the exterior wall of the bladder. No ulcers were present on the internal portion. That part looks awesome compared to before. It's just real frustrating how these md's give you these medical terms then you are so out of it in recovery you don't remember what it was even when they tried to explain it in easier meanings ;-) Not too concerned, have to follow up this week just was hoping someone perhaps had heard of this before. Thanks soooo much for your support, and again my support goes out to all of you out there. If I can be of help to ANYONE please feel free to let me know, cause..... been there done that before :-)
Love
Barb

[vm]

The ONLY thing I can think of is the pods of bacteria they have spoken about recently. That some people get these pod like things of bacteria within the wall of the bladder when they have lots of UTIs.

I am trying to find that info on the site. I will post it when I find it. :)

[BarbS]

Kim,
Thanks again for the support and research. I spent the whole day on the internet just trying to figure out what he was talking about. I do know he told my husband and I we will have to treat me more aggessivly going foward but did not want to ellaborate at that time. Darn I am glad he didn't cause I couldn't remember to try right now :-0) So guess was just seeing if it seemed common to any other ic patients. Will keeping searching. Thanks so much for all the support you have all offered thus far! Kim, you are amazing, hang in there.! Again If i can help of anyway to other's please let me know. :love: :love:

[vm]

This is the only thing I have found. I know there is info at the ICN about it, but I'll be danged if I can find it! LOL

This sounds like something on the inside of the bladder wall, but I'll post it anyway:

Stubbornly recurrent urinary tract infections may occur because bacteria multiply inside the cells that line the bladder wall, forming "pods." Studies in mice show that bacteria like E coli cluster together in a matrix called a biofilm, with pod-like bulges sticking out on the internal bladder surface. The pods are protected from the usual host immune response until they break open, releasing the bacteria and triggering another round of inflammation and symptoms ( Science 2003;301:105-107[Abstract/Free Full Text]).

http://bmj.bmjjournals.com/cgi/content/full/bmjusa.03090006v1


Good luck and let us know what the "chicken pox "stuff is when he explains it. LOL

[jodi.b]

Hi there,
I had a cysto in March-Kidney stone removed- and dr found what he called polps in my bladder. One apparently looked very strange and he tool a biopsy
and I had to wait 6 days to see if I have cancer or not. I did not. I started to burn and have frequency 6 week later.
I then had a cysto in August, to check it all out, and the polps had all but cleared up. They did the water dist to the bladder and ever since I have just burned, had frequency, always negative to bacteria. very uncomfortable. Still working on this. Looking for new uro in Melbourne.
May be it is polps. If it is, one of the main things that bring them on is smoking. I gave up on the 17th Jan o6 and I still have not smoked and according to the dr I was vitually clear in August.
Regards
Jodi B

[jodi.b]

Hi there,
I had a cysto in March-Kidney stone removed- and dr found what he called polps in my bladder. One apparently looked very strange and he took a biopsy
and I had to wait 6 days to see if I have cancer or not. I did not. I started to burn and have frequency 6 week later.
I then had a cysto in August, to check it all out, and the polps had all but cleared up. They did the water dist to the bladder and ever since I have just burned, had frequency, always negative to bacteria. very uncomfortable. Still working on this. Looking for new uro in Melbourne.
May be it is polps. If it is, one of the main things that bring them on is smoking. I gave up on the 17th Jan o6 and I still have not smoked and according to the dr I was vitually clear in August.
Regards
Jodi B