Hydrodistension showed no IC but red areas, what do I have?

[lele1981]

Hi, last year I had a cystoscopy and urethral dilation after years of cystitis/uti symptoms with no signs of infection. My doc had me on nightly antibiotics just incase until we both decided enough was enough and I should get uro input. So following my cystoscopy last year I've had frequent urination on and off along with reactions to foods, basically this made my initial problem seem like a walk in the park as some days i felt like i lived in the bathroom or was too sore to work.

My Uro suspected IC based on this so put me on amitriptyline and vesicare plus pain meds as required, along with this and giving up wine and spicy foods my life was mostly back to normal. On my last uro visit they decided to try hydrodistention to help, I had the procedure done 5 days ago and have been told that my bladder showed no signs of IC but there were red lesions that they took samples of. I'm waiting to hear the results which will be a few weeks yet.

What I want to know is if I don't have IC what's wrong with me? I'm worried they will say I'm fine, it's all in my head and take my meds away. any suggestions would be much appreciated. X

[Judy Gee]

your post

Hi Lele, I sure hope someone has answered you by now. I have heard your story many times. I think you can still have IC with out the typical signs. Maybe Donna or someone else can answer this question. Maybe you could go to another forum and post this same one that you did. Hope your feeling better. Judy G

[lele1981]

Hi Judy,

Thanks for your reply, I haven't heard back from anyone else yet. I hope the biopsies show something as I feel like maybe I'm imagining all the pain if they say there's nothing to see wrong with my bladder.

I will have a look at other forums and see if I can find someone else that's had a similar problem. X

[ICNDonna]

It's very possible that you have interstitial cystitis, but you will need to wait for biopsy results before knowing for sure. I do think it would be a good idea to give the IC diet a try --- you'll find the link to the printable food list (you'll want to print it landscape) in my signature below.

Sending healing thoughts,
Donna

[Mothergoose]

I had a few hydros from different uros before getting a diagnoses, when my uro said he saw IC for sure he just wondered why the other didn't see it. No we know my bladder is permaently streached bigger than normal, they other Dr. just put enought saline in for a normal bladder and could not see the signs of the ulcers or cracks, the last uro figured this out put double the normal amount of fluid in and could plainly see it.

We are all different, I have retention issues so my bladder never emptys and fills fuller than most people before it is too full, these other Dr. didn't take that into account when trying to diagnose me, they figured it was IC or a neurogenic bladder they did not figure on it being both.

Just goes to show sometimes you need to seek multiple opinions, I am glad i did.

MG

[sailawaygrl]

I don't think that is the definitive answer. There is no perfect test to detect IC, that is why they have you take the PUF and test for other diseases as well. My bladder doesn't look as bad as others but I still have IC. I have severe IC and suffer pain daily. I know the waiting is unbearable but hang in there. If you feel you have IC and don't get the diagnosis, I would suggest a second opinion.
S

[Linda May]

Ic

I think you need a second oppinion, It is not in your head.

[donnadb040]

lele... your bladder doesn't have to have hunners ulcers or really anything visible to have IC... It's really based on your symptoms and what treatments have/have not worked for you. For many of us, there have been no successful treatments and continued bladder pain for many, many years! Hopefully, that will not be the case for you! There are lots of treatments to try so don't feel discouraged.... try them ALL if you have to but keep on trying until you get relief!

[lastael]

I am curious as to how bad the hydrodistention really is and if can cause more problems than before the procedure? I cancelled my hydro for now and will start dsmo treatment January 24th. What was your recovery time?
Thanks so much for any info! lanissa

[ICNDonna]

Lanissa: Most people will recover fully from a hydro within two to three weeks; a few take longer. It's been a major treatment for me for my 36 years with IC and I usually plan to take it easy for a week or so. When I was working we would schedule for a Tuesday or Wednesday and I would return to work the following Monday.

My uro has always ordered pain meds for the first few days, but I rarely need them for more than a day or two if I just relax and don't try to do too much. I usually feel better the day after a hydro than I do the day before.

My last two hydros were done in an outpatient surgery center and I was admitted in late morning and home in time for husband Terry to fix me some soup for dinner in the evening.

Donna

[mary124]

When I was dx in 1992 the hydro didn't show any signs of IC; but the biopsies did show that I have - for the last 12 years been taking Elmiron; tried a few other meds along with it but always had to get off of them for some reason or another. I too have hydros done as a major treatment. Usually takes me a few days of staying off of work, and by a couple of weeks I am usually back to my old self.

[lastael]

Thank You for the responses! My uro doctor said he has not had much success with the Elmroin(sp). But that the DSMO he has had success with that. Has anyone else tried the DSMO treatments? Does the biopsy confirm IC with the findings of mast cells? And can you have IC without the findings of mast cells? But mast cells are needed a confirmation? Sigh, it can be overwhelming. I have to admit I just started anxiety meds again to deal with it.

[bladderpain451]

Can't lesions be caused by IC? I didn't know a bladder biopsy confirms IC, I know it could confirm chronic inflammation. I think I had the mast cells, I'd have to recheck my records, but I don't remember that being an issue with the diagnosis. I think they look for glomerulations, hunner's ulcers, inflammation, bladder capacity (which don't necessarily matter), & burning without the presense of infection. If hydro helps you, then how could it not be IC? OMG I have all those problems above at some time or another and hydro didn't do a thing for me. If it helps you, they need to keep up the good work. I don't see any reason why they wouldn't, if it relieves your symptoms.

[ICNDonna]

lastael, I was treated with DMSO for several years and it did help. Elmiron does take up to six months or longer to become effective, but some find it's worth the wait. I had side effects from it and had to stop taking it. Given the same circumstances, I would try it again.

Donna

[ceebee]

Mothergoose thanks for your entry, I think I may have a combination of IC and neurogenic bladder. I am definitely going to get referred to Dr. Fenster in Vancouver I was reading his credentials and he is the Doc I want to see.