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Interstitial Cystitis: Anyone have symptom relief tips?
Kidney & Bladder | Last Active: Mar 7 11:50am | Replies (32)Comment receiving replies
Your comments offered suggestions I haven’t used thus far in an approx 10 year battle with IC. Until recently, my flares were 3-4 times yearly, lasting a week or so each time with severe abdominal pain, urgency, pressure and burning. Currently, I get bladder installations every 6 weeks or so, usually with good success. Since my last installation on 01/11/2024, I’ve had three flares that I treated with Pyridium and Advil. Third flare yesterday sent me to urgent care because the pressure occurred very quickly along with a bit of blood. This flare was diagnosed via urine specimen as a UTI. I had just one UTI in the past, more than 5 years ago.
I am very physically active in gym cardio, weight lifting, power walking, yoga and Pilates. I am convinced these help, particularly those exercises that work the pelvic floor. I am seeking referral from my PC to a pelvic physical therapist. This PT mode REALLY helped three years ago and virtually eliminated flares for quite awhile.
I am going to follow your suggestions and join the ICA and look for an IC specialist in Michigan. I was evaluated by a PA in a pelvic specialty practice and was told at the time My symptoms did not match IC and was referred for PT before seeing the doctor.
Trying to stay positive and I hope you remain the same. Thank you!
Replies to "Your comments offered suggestions I haven’t used thus far in an approx 10 year battle with..."
So sorry for the pain you are going through. I completely understand and empathize. It's great that you are looking into an IC specialist and the ICA. They can really help. A book that I found helpful (was written in 2000) is the Interstitial Cystitis Survival Guide by Robert Moldwin MD. There are probably several newer books with updated info but I thought this worth mentioning.
Your positive attitude is a definite benefit. Among other things, I have used imagery at times, such as imagining soothing cool milk coating my bladder (my creativity kicking in but we should have as many tools as possible in our tool box) and self hypnosis. Anything that we, personally, can do for ourselves is a plus. I wish you well in your search for comfort. Please let me know how you are doing. I care.
There are 2 IC specialists I found that are in Michigan and they are among the top 20 in the country.
Kenneth Peters, urologist, Beaumont Health System, in Royal Oak, Michigan
and
Daniel Clauw, urologist, University of Michigan, in Ann Arbor, MI
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Your comment caught my attention.
I also live in Michigan ( GR area).
I have wondered for years if I have IC because of my pain episodes.
I started Pelvic Floor Therapy @ 6 months ago and I have made TERRIFIC progress with the exercises and the serious incontinence I have experienced for many years.
A few weeks ago the pain spasms have begun again.
I do not think it is a UTI at this point - so I am asking - what is it?
Who evaluates or diagnosis IC ?
One of my urologists believes it has todo with the nerves from the S1- S3 joints in lower spine that branch into the pelvic areas. I do have degenerative disk disease.
I am thrilled with my progress with PF PT teaching though which means not wetting the bed anymore 🤗🤗
Oh, I am 76 but still very healthy except for my weight problem.