Interstitial Cystitis: Anyone have symptom relief tips?

Posted by januaryjane @januaryjane, May 6, 2020

Ive been diagnosed with IC for awhile and am on Elmiron. It has been helping pretty well. The past few days Ive had a bad flare. I try not to take advil/ibuprofen. Any others out there with IC that have symptom relief tips? Im staying away from the 4 Cs, and other irritants in food, drink. (The 4 Cs being caffeine, carbonated, citrus, vit. C.)

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mmorley | @mmorley | Feb 12 4:26pm

All cranberry products are to be avoided for anyone with Interstitial Cystitis. Cranberries are very acidic and can cause extreme pain in someone who has this disease. It is good for infection but NOT for IC, where the bladder lining is deficient and inflamed.

mmorley | @mmorley | Feb 13 4:05pm

In reply to @krissyd "Unsweetened pure cranberry juice" + (show)

Sorry, just to clarify....Cranberries are great for bladder infections because they are so acidic. That's the very reason that those of us who have Interstitial Cystitis (deficient lining of the bladder, chronic inflammation and pain) should never have cranberry products as they cause us a lot of pain and further irritation.

DebbieS | @sparkyd1 | Feb 24 8:07am

In reply to @mmorley "I've had IC since the late 1980's when it frequently took several years to be diagnosed..." + (show)

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!

jjb1225 | @jjb1225 | Feb 25 11:52am

In reply to @sparkyd1 "Your comments offered suggestions I haven’t used thus far in an approx 10 year battle with..." + (show)

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.

mmorley | @mmorley | Feb 25 4:59pm

In reply to @sparkyd1 "Your comments offered suggestions I haven’t used thus far in an approx 10 year battle with..." + (show)

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.

mmorley | @mmorley | Feb 25 5:11pm

In reply to @jjb1225 "Your comment caught my attention. I also live in Michigan ( GR area). I have wondered..." + (show)

Hi, that's great you are finding the pelvic floor PT helpful. Usually, with IC the bladder pain improves during urination and with a UTI it hurts a bit more during urination. The most common way IC is diagnosed is through cystoscopy (looking into the bladder with a scope and under anesthesia). Then they do what is called hydrodistention (instilling liquid into the bladder). The hallmark for IC would be blood seen by the dr. when this is done (again, you would be under anesthesia and would not be aware of any of it). Before that is done, though, they would still test your urine to be sure it was not just an infection. I encourage you to see a urologist if this continues if you haven't already. I say all this as a retired RN and as a pt with IC. The pain started for me in my 30's and as I am now over 70 it has decreased. (I was told this is often the case that the pain decreased after age 70). Best wishes to you.

mmorley | @mmorley | Feb 25 5:27pm

In reply to @sparkyd1 "Your comments offered suggestions I haven’t used thus far in an approx 10 year battle with..." + (show)

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

ggarrepy | @ggarrepy | Feb 26 9:51am

Last year I thought I had IC and went on line for any treatment info I could get. so painful. Well, it turned out that I actually had bladder cancer. Please make sure you are correct with your diagnosis of IC. Check in with a Urologist if you have not already.