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Interstitial Cystitis
A MyFibroTeam Member asked a question šŸ’­

I have had interstitial cystitis for 10 years now. I have been having a flare for a few weeks and I need an option on what to do. I can't get in to see my primary for 2 weeks to get a referral to see a urologist and its been so bad at night and I'm beginning to not be able to hold my urine. I have the chills so bad from the pain and drinking warm water isn't helping along with all the pain meds that I take thru out the day. Would the ER even be able to do anything if I don't have an infection? Iā€¦ read more

posted September 3, 2015
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A MyFibroTeam Member

Thank you all for your answers. My Dr called the next morning and said they had an opening that morning! Thankfully cuz I wouldn't have made it thru the long weekend! It turns out that I have a kidney infection! I didn't realize it was more than IC. @A MyFibroTeam Member I used to have that treatment done and it worked well! My Dr put in a referral for a urologist. I have been super careful about what I eat and drink and have been drinking lots of water. I'm still feverish and I was instructed that if I'm not feeling better by tomorrow, that I need to go to the ER for IV antibiotics. I hope I wake up feeling better because they have admitted me before when I have gone in for the IV

posted September 6, 2015
A MyFibroTeam Member

Hey. This probably won't be of any use in the short term but long term wise. I have interstitial cystitis too and I have treatment call cystistat. They put in a catheter to enter your bladder and inject medicine that creates a synthetic lining around your bladder. This in the long term stops irritation in the bladder and reduces or stops symptoms all together. I have this treatment weekly for 6 weeks and then move to every other month, it really has helped and pain and bladder issues has reduced dramatically. maybe look into this ? I hope this helps !x

posted September 4, 2015
A MyFibroTeam Member

@A MyFibroTeam Member it generally depends. sometimes yes, other times its just uncomfortable. my urologist said my biggest giveaway to IC is blood in the urine (interstitial cystitis causes your bladder wall to be irritated even without an infection present which causes it to bleed, along with signs of a urinary tract infection, the burning,discomfort, needing to pee more often without having an infection)

posted December 2, 2015
A MyFibroTeam Member

Watch your diet, make sure you stay away from coffee and pop it might be a good idea to look up interstitial cystitis diet. I have really bad pain because I won't give up my coffee. Certain foods I eat I know really bother me. It take some experimentation and elimination. Pyridium does work for me but I still leak. I have to say I do have to wear poise pad everyday. There have been times when I've had to run to emergency and I'm late on the way or when I cough or laugh. I had DMSO treatments but I didn't like it

posted September 4, 2015
A MyFibroTeam Member

hi @A MyFibroTeam Member. from my experience, my doctor looked at my history of infections and bladder issues. from there I had a Cystoscopy (a camera in the bladder) and a biopsy of the bladder tissue (a minor op under general anaesthetic). from that they line up all the symptoms you suffer with the symptoms of interstitial cystitis for a diagnosis

posted September 4, 2015

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