I recently have been diagnosed with Interstitial Cystitis, I was wondering if anyone else with Fibro suffers with this.
Hi Sharon - I was diagnosed with IC years ago and over the years it has gotten better with diet and care with bath products, etc. For a while the pain was just awful and I felt like I had a bladder infection so much of the time. I know how frustrating it can be. Sending Big Hugs and good thoughts.
Linnie
Thanks Linnie! I go for a follow up visit tomorrow maybe he can come up with a treatment plan for me. I had a Cystosopy 2 weeks ago and he was saying that the procedure alone sometimes help the symtoms but so far it hasn’t worked for me. Thanks for your input I appreciate it!!
Sharon
My IC is so crazy, I can go a day or two and not be bothered but then out of no where bam!! I’m in terrible pain!! Anything you all can suggest would be great. I’ve began keeping a journal and i"m gonna share it with my Dr tomorrow maybe we"ll find a treatment that will work for me.
I don’t smoke or drink and I gave up sodas a long time ago, the only caffeine I have is one cup of coffee in the morning and maybe a glass of ice tea with dinner, I know that there are foods that can cause flares but I’m not sure right now what they might be, that’s why I wanted to start a journal. Again, thanks for the input!!
Sharon , I’m so sorry about your IC, I have worked as a urology nurse for 23 years & have cared for many IC patients, so I do understand what you are going through. When you had your Cystoscopy did they put you to sleep ? What I have seen is that having the Cystoscopy awake can diagnose it but not always treat it. If your symptoms are still bad, go back to your Urologist and ask if he/she can stretch the bladder under anesthesia , there are also medications they can put in the bladder. Stretching the bladder can be very painful with out anesthesia & so without anesthesia the bladder can not be over distended like it should. ( sometimes just the cysto can help) but most people need the bladder over distended, if they say they did distend it, they may have a little, but not as much as they can if you are asleep. It’s far to painful to stretch the bladder as much as needed to treat IC
Feel free to message me if you have any questions, if your not getting relief with the urologist you have, I would recommend finding another one. Different dr 's treat IC in different ways even though they may say a Cystoscopy can be a treatment, there are other treatments.
Hugs & blessings
dee B
Well Lovett I had replied to your comment but somehow it disappeared! LoL.
I did have the Hydrodistention done in the hospital but unfortunley it didn’t eliminate the problem, it seems better though than before the procedure but I’m still bothered.
I seen my dr today for an follow up appt and I ask if maybe this would get better in time he said it was possible but no guarantees of course, it just varies in different women. So I decided to see how things go and if I’m not doing any better in 3 weeks which I will see him again, then well discuss other options. I’ve got Meds for the discomfort so I’ll make it, lord knows I’ve been through a lot worse things. I do have a great Dr who is very kind and compassionate and also listens to what I’m saying which I love. Thanks for sharing your info with me, I’ll keep you up to date!!!
"Hugs"
Sharon
I was diagnosed with IC a couple years ago and also pelvic floor muscle spasms... just seem that everything is related to fibromyalgia and some kind of muscle myalgia in some part of my body. it sucks!