Ulcers??

[Dani72]

Hi,
I just had my 5th cysto 2 days ago. My bladder is much worse than when I had my last in October of 2003. The doc said my bladder is ulcerative???? What does this mean??? Is it the worst kind you can have???? He really didn't explain anything to me.
Thanks,
Danielle

[Sarojini]

He probably means he saw Hunner's Ulcers in your bladder. These generally correlate with more pain, etc... at least I gather that from things I read. They are associated with more severe cases of IC.

[sedavis]

I too have the ulcers in my bladder. I was diagnosed a little over a year ago. I have heard of some people having them removed by laser but my uro hasn't suggested this. From reading all the posts over the last year I dont consider myself to have any more pain and maybe a lot less than the others on the list. If you type Hunners Ulcers into a search engine you can find out more info. I think only about 10% Of IC patients have these ulcers. Good Luck, Sue

[Dixiefireball]

I had Three large hunners on my bladder but i had them removed May 19 04. yes they can be painful.
I do pray things will get better for you.
Rhonda

[sedavis]

Rhonda, I had a top IC doc tell me that Hunners Ulcers and IC were two different diseases. Guess we are lucky enough to have them both. Have you heard this theory? Sue

[Dixiefireball]

No I havent heard that

[KimMulry]

I have Hunners Ulcers also. I don't know how many and I have blood in my urine on occasion. Dixie, How was your surgery to remove them? how did the surgery to remove them come up?
My last form of treatment was DMSO's with the heparin. I am having a flare right now and I am trying to pretend it doesn't hurt. It isn't working though. :headbang: go figure.
My poor family has had pasta three nights in a row! Oh well!

[ICNDonna]

I also have Hunner's ulcers, but I wouldn't call my IC severe. I'm pretty well controlled by periodic hydrodistentions and DMSO instillations.

Donna

[sedavis]

I wonder if those of us with IC and Hunner's ulcers react differently to traditional IC treamtments. From reading Donna's posts on the list I understand that her reactions to Hydro/Cystos ares positive as was mine. When mine was dont for diagnosis it gave me back my life. Then I hear how others react negatively. I do know that no one treatment fits all. Sue

[KimMulry]

My first hydro (for diagnosis also) gave me back my life for about 8 months and then my symptoms came back full force.

[sedavis]

I was symptom free for about 7 months but when IC recurred it wasn't nearly as severe. Of course by then I was on meds and following the diet. I have noticed my flares last about a week to 10 days. I did ask my Uro if I could have another Hydro/Cysto if mys ymptoms became severe again and he agreed. that gave me a sense of relief. Sue

[Dixiefireball]

I just asked my doctor was there a way to remove them. at first he didn't want to do it since i wasnt doing well at the time but after time went on i did start to get better and im not going to sit here and tell you this will help you but it did me the heparin and marcaine treatments took away all my pin point bleeding we found this out while he was in my bladder doing the removeal of the hunners and scar tissue. I don't have no regret that i had it done at all I hate the uti i have right now after my bladder is still angery at me because of the surgery. but I would still do it all over again and the way they talk i will have too.:( In my case the hunners will keep going on my bladder because the blood cells in my bladder are feeding the hunners.:(

[sedavis]

I worte down your Heperain and Marcaine treatment and I'll mention it to my Uro. So far he's been open to my questions and suggestions. I"m getting bossy as I've decided it's my body and bladder and I want some control over what treatment I'm getting. He wants me to have an IVP with a catheter and I've put it off until I can find out what the catheter is going to tell him. Just another uncomfortable procedure.I think all the docs should have to try the things they recommend to us. Sue

[Dixiefireball]

Sue i do believe the key to getting better is both pat. and doctor working together and both to have an open mind. I guess you can say i'm lucky I did alot of research I have asked alot of question I knew what I was asking for also I believe the more you know about yourself and your treatment the better off you are!
I listen to my doctor and he listen to me we both have learned alot from each other.
I never knew what IC was until he said i had it still it took me over a year to find this group so i was reading everything i could get my hands on so when i got at the end of the book the doctor office sent me i found this web site and I tell you this was one of the biggest blessing that could had happen to me I listen and learn by others errors and success. still I have an open mind.
If i hadnt been welling to take the chances on the heprain and marcaine treatments after everything i had read I wouldnt be any better now. Just a year ago i had over 90 pin point bleeding spots on my bladder and three ulcers on my bladder. I went full blast on the heparin when a new study came out that said it was safe well it worked!!:thumbsup: (for me) after i started getting better my color came back to my face i felt better and they could see it in me and the way i talked NO i'm not better but i still have high hopes in getting better and with my wonderful supported family right here and the careing understand URO. i have I will get better maybe not a cure but at least to where i have little to know infection ((((that I pray for daily)))) because i have them to offen. and to have little to no pain i'm so sick of taking a pain pill daily.
I'm not sure if the surgery helped me or not to be trueful because now i have this infection and i'm in alot of pain and it will take until monday morning to find out what meds are right for me I have been taking leviquin since before my surgey.
Still even I would do it all over again because i did find out the pin point bleeding is gone from my bladder scar tissue was removed from my bladder. (which needed to be removed it was from many uti) and i found out that the pin point bleeding was gone so it was wroth it just to find out the treatments i have been useing is doing some good.
I wish you all the best with all your treatments my advice is this
if you dont feel right with one doctor find one you do.
make sure your doctor will listen to you as much as you listen to him.
be open and honest with all your medicine your taking and have tried that did or didn't work.
try new things but give it time to work

I love you all :love:
sending you many hugs and prayers
Rhonda