Hunners Ulcers

[bikingjudy]

I am anxious to hear from those who have Hunner's Ulcers and what (if any) has worked to ease the frequency, pain, etc.. I have already had 2 distensions, am on Elmiron, and try to practice the diet, but still getting up 6-8 times a night to void and can always feel discomfort in my bladder.:help:

[Judy777]

Hello! I was diagnosed with IC with Hunners Ulcers in 2005.

When you had your Hydrodistensions did they laser off the Hunners Ulcers?

I have had 2 Hydros since then. The first one was at diagnosis in 2005 and the URO removed the Hunners Ulcers with a laser. My 2nd Hydro was just this past October and my Bladder still looked pretty bad IC wise but the Hunners Ulcers did not come back. Most people with Hunners Ulcers who have them removed do say they usually come back at some point.

I think the things that have helped me the most are being put on Lyrica and the life saver is doing the rescue treatments at home with Heparin, Lidocaine and Sodium Bicarb. I can do these as often as needed at home. I have found doing them once a day is the best for me. If I skip to many days and don't do the treatment my bladder starts to get really angry.

Hope this helps!

Judy

[DebbieD]

My Hunners kept coming back. They woulf never go away. So Later I had a ileo-conduit made.

DebbieD

[Briza]

hi
Hunner's ulcers were discovered and removed during my dx process cysto/hydro in 2004. Although the hydro itself did not help with any of my other IC symptoms of pain, frequency, urgency, burning, back ache, but since recovering from the hydro I have not had the sharp, stabbing, double over w/ pain symptoms that I had non stop for over a year before the hydro... so I assume that having the ulcers removed 3.5 yrs ago could be the reason for the relief from those most painful symptoms and since those particular symptoms haven't come back I think probably the ulcers haven't come back. I don't ever want to have another hydro to find out....had complications and a much longer than usual recovery, so I pray that the ulcers/sharp stabbing pains never return:pray:
Best wishes :)
B

[barbclay]

I have a question for those of you with hunners ulcers!?! I was dx with Ic in 2003. At that time my doc did a cystoscopy&hydrodistention. Nothing was said about hunnes ulcers. It seems like I havetried everything, and not much helps my IC. Pain meds, and instills are my best bet. For about the past 9-12 months I have been having a very sharp,burning pain (in addition to the whole pelvic area) on my right side, and now my left. I had a tumor and my right ovary removed a few years ago. My gyno did a lap in Jan to see if he could see a problem-nope,everything looked good from the gyn point of veiw. I do feel these sharp pains are more located in the bladder. If you have hunners ulcers, how does the pain feel different than if you have IC without the ulcers?I do notice that I do not seem to get these sharp pains if I do my instills everyday (I am only supposed to do them 3x week at max)Does my question make sense? I wasn't sure where to post it. Thanks guys, any help would be great!!!

[Briza]

Hi
Wish I could answer your question about difference between the pain w/ or w/out hunner's ulcers. The uro who performed my hydro didn't tell me post op about the ulcers...it wasn't til a couple years later when I went to get a copy for myself of my biopsy and post op surgical reports that I found out that she had found the ulcers and burned them off. But like I mentioned in my post above though I still did continue to have burning and bladder pain that pretty much encompassed my entire belly region after the hydro, the sharp stabbing pains have never come back. Does that mean the hunner's ulcers haven't returned...I dunno...I guess the only way to find out would be to have another hydro to look and see but I'm not planning on doing that again, ever, if I can avoid it. If you've never actually read your post op and biopsy results yourself, you might ask your dr for copies and for a full explanation of anything that you don't fully understand that's written in them. Hope this helps Best wishes :)

[ICNDonna]

I was diagnosed with ulcers and I feel good most of the time. I do stick with my diet and have hydrodistentions when my symptoms return and won't go away.

Donna

[Sarojini]

I have Hunner's ulcers, but have never had them removed. I had InterStim surgery in 2007 to control the frequency/urgency, and I have a very good urologist and pain management specialist who work as a team. I take Atarax (hydroxyzine), Valium, and follow a long term pain management plan that includes oral medications and heparin/lidocaine instillations that I do myself at home.

While I don't find that I'm super diet sensitive, there are a few things that I absolutely must take care not to eat, so I stay away from them.

I do pretty well most of the time! :)

[curlycue]

I have them burned in 1994 in mexico. Dr said to me the only way you are going to feel some what better it to have them burned off and I was 24 and said OK go right ahead? he did it and it was the best thing I could have ever done,but therrrrreeeeee back.

[NewLife]

I am anxious to hear from those who have Hunner's Ulcers and what (if any) has worked to ease the frequency, pain, etc.. I have already had 2 distensions, am on Elmiron, and try to practice the diet, but still getting up 6-8 times a night to void and can always feel discomfort in my bladder.:help:

I have Hunner's ulcers and absolutely no pain (touch the wood). What triggers my frequency is almost exclusively fermented foods, even fruits and berries. If I avoid them, I am nearly symptom-free unless I am under stress. If I eat something fermented, it's bathroom trips every 20 min.