After Two year remission it's back..... :(

[Ali11091209]

I had in 2013 a cystoscopy with Hydrodistention and after that I was ok I had my normal life back but now since 8/2015 it started again and I have to change my doctor because at work they changed my insurance I feel like I have to start all over again and it seems like I don't have a lot choices to find a new doctor, today is my appointment with my primary doctor so he can give me the approval to see an specialist and I'm in pain , I just want to cry , I feel hopeless at this time.

[ICNDonna]

Re: After Two year remission it's back.....

I'm so sorry you're in pain. The same sort of thing happened to me. I had the hydrodistention that diagnosed my IC --- and pretty much erased my symptoms for almost two years. Now I have an occasional flare if I screw up, but have had hydrodistentions when symptoms just won't go away. I sincerely hope that you will find relief soon. It's sad that you have to see a different doctor, but you should be able to get your records sent to the one you have to see.

Sending well wishes your way,
Donna

[Ali11091209]

Re: After Two year remission it's back.....

Hi Donna,

you always watching for others , I appreciate it your words. god bless you!!!

[Ali11091209]

Re: After Two year remission it's back.....

Hi Donna,

you always watching for others , I appreciate it your words. god bless you!!!

[green_the_fish]

Re: After Two year remission it's back.....

Hi Ali,

My IC has been under control for a decade now, but I feel like I can relate to your post. I fought so hard to get my life back after developing IC, and now bile reflux is putting me through the same ordeal again. I developed bile reflux in a new city; I've had to start over with new doctors who don't know me and a new insurance plan that I don't quite understand yet. It makes me feel hopeless to be disabled by a new chronic condition after all I did to live a productive life with IC.

What I try to think about is the fact that I've gotten past a painful chronic illness before, so I should be able to do it again. You've made it through this before, too, so there's definitely hope of you experiencing remission again.

Good luck

[Ali11091209]

Re: After Two year remission it's back.....

Hi green the fish , owww that's a long time in remission hope some day it happen to me I just pray in God this go away some day !!!😊😊😊

[green_the_fish]

Re: After Two year remission it's back.....

Just to be honest, I don't think I experienced remission. I've had IC symptoms daily since I developed the disease at 15. When I say I got past it, I mean I reached the point where I no longer had pain from IC and my symptoms were no longer interfering with my life. I think if you can reach a level where your symptoms are very low-level, you can be just as active as someone in remission

[Ali11091209]

Re: After Two year remission it's back.....

Hello,
I would like to know if the Cystocopy with Hydrodistention it is save to do it again or how often is good do it, I finally went to see doctor but he doesn't want to help me he is saying that is just back pain... I went to see a doctor in mexico he is an urology he told me that in mexico there is a medicine call domuso and is not in use in the USA I would like to know anything about it and he wants to do the Cystocopy with Hydrodistention and treat me with that medication but I don't know if its save to blow my bladder again I'm been having also a lot vaginal burning and advice? . thank you very much for any advise and time.

[ICNDonna]

Re: After Two year remission it's back.....

Hello,
I would like to know if the Cystocopy with Hydrodistention it is save to do it again or how often is good do it, I finally went to see doctor but he doesn't want to help me he is saying that is just back pain... I went to see a doctor in mexico he is an urology he told me that in mexico there is a medicine call domuso and is not in use in the USA I would like to know anything about it and he wants to do the Cystocopy with Hydrodistention and treat me with that medication but I don't know if its save to blow my bladder again I'm been having also a lot vaginal burning and advice? . thank you very much for any advise and time.

I suspect that "domuso" might be DMSO, which IS available in the United States and has helped some people. It's not used as much any more, but there are still some folks who are having good luck with it.

After I had my first hydrodistention in 1975, I experienced relief for two years --- I have had the procedure done over forty times now --- when my symptoms return and won't go away, we schedule me. I have read that something like 50% of ICers do have relief from hydrodistention. You should be able to find a good urologist in your area.

Sending healing thoughts,
Donna

[Ali11091209]

Re: After Two year remission it's back.....

Thank you Donna for the advise I also have a problem with general anesthesia my bladder gets numb like 3 or 4 days and I remember that one doctor told me to get general anesthesia but except my bladder is that possible?

[ICNDonna]

Re: After Two year remission it's back.....

If general anesthesia is a problem for you, you could request a spinal. I have had many spinal anesthetics for hydrodistentions. It was interesting because I was able to watch on a TV screen and saw how raw my bladder looked when it was stretched.

Donna