interstitial cystitis and RSD
 

Hello all! So I have been having some bladder issues for a while now. It has gotten much worse recently. I went to my family doctor this morning and she mentioned interstitial cystitis. I looked it up online and I saw that it is a form of RSD. I have read some posts on here about it also. Forgive me if I am repeating previous questions...those of you who have this, what do you do for it? Do you take the same meds as you do for RSD elsewhere?

Thanks!
Nanc

I have many of the symptoms. My OBGYN wants to do hysterectomy due to prolapse and then some mesh thing to help hold up my prolapsed bladder. He told me what a MAJOR surgery this would be. He also said I was in the driver's seat and we'd do it when I was ready. Let's see I think that was 3 years ago. I am scared of the surgery even though I know that some day I will more than likely do it. Sorry that your having trouble hon. I wish I had some good advice. Perhaps someone else will. :hug:

Hi Vrae. Sorry about the issues you are having. I have had RSD since '91 and I had a hysterectomy and o-rectomy in '96. I figured I would develop some bladder issues in time...these are not the issues I expected :(

I knew nothing about RSD back then, no one really did! The things I have read about RSD in the past few years explained a lot about stuff I experienced that no doctor could explain.

I know what you mean. Granted you are an RSD veteran, but when I was told just a few months after the surgery that rendered me RSD back in 2004, there wasn't much on the internet that I found back then either. I so wish I had known the things to do that MIGHT have got me any time in remission.

I am having a hell of a night tonight. Oh I hate when it flares :mad:, then I cry b/c pain, which I try to keep in check b/c it only makes it worse. I am getting to where both my feet are so involved I am concerned about how much longer I will be able to use them. Just a short trip to the bathroom tonight is agonizing. Sorry to complain. It just is what it is I suppose. I hope you're feeling better!

I was lucky that mine was discovered and treated right away back in '91, I was in remission for many years. I bit a rock that was in my food at a restaurant. Lost my three back bottom teeth after failed root canals, then ended up with dental implants. This is what caused the RSD in my face. The hospital's pain clinic I was treated at said this was the first time they had ever seen or heard of it in someones face. They wanted my dentist (who got me to the pain clinic) to submit my case to the medical journal. He didn't do it because of fear of being "laughed at" since it was so unheard of. I sued the restaurant to cover the $13,000 spent on my mouth/face. I didn't get much more than that. Had I known what RSD was back then I would not have settled! Even when I came out of remission, my flare-ups were manageable. I hurt my right hand in 2009 and developed RSD there...then it spread with a vengeance. I learned so much more about it when it started spreading. I completely understand you concern about having it in both feet, mine are both affected too. We went to the store yesterday to pick up new meds and a few groceries. I hit my little toe on the cart when checking out, and oh the pain! By the time we left, I could barely walk.

I am sorry you are having such a hard time. No need to apologize for complaining, it is completely understood and acceptable!!! Thankfully I did sleep better last night, which is great considering I didn't the night before because of this new bladder pain...so frustrating! I hope you are having a better day today.

Nanc :hug::hug:

Thanks Nanc. Yep, much better, mornings are always better for me. Although I'm not looking forward to the night. It always seems to be worse at night. Anywho, thanks again Nanc! Have yourself a wonderful day!!

Well, I had the series of tests and was officially diagnosed with interstitial cystitis. Due to allergies, I cannot take the meds normally prescribed for IC. I am trying the IC diet, but there is so much conflicting info online. One list will show something is "IC friendly" while another list will show it as an "avoid"! So confused!! This is difficult for sure...already gluten free and have many food allergies, now this. Trying to determine what I can eat is a challenge. :eek:

Any advice would be appreciated!
Thanks!
Nanc