Intersistial Cystitis cause of constant interrupted sleep.

[AmandaM]

Hi Everyone and thanks in advance for understanding if I’m posting in the wrong area. I was diagnosed at 55 (after menopause) with IC by a wonderful NP who specializes in IC. This was after six years of misery, two GPs (women) and three urologists (men) who all basically patted me (two physically patted me) on the head and told me to meditate or take anti-anxiety or other mediations for muscle relaxation or overactive bladder. By the way, I was prescribed Baclofen to relax my bladder and got severe UTIs (ok, every UTI is severe, sorry) after taking ten MG for more than one night. Turns out, many muscle relaxants cause urinary retention and urinary retention causes (wait for it) UTIs.

I’ve handled flares, sometimes well, sometime not so well. A really great day for me is when I just have slight burning and moderate pressure/pelvic pain with feeling like I have to go, but being able to hold off for an hour or two. I’ve personally found that asking people to imagine having a UTI without having access to antibiotics because it’s an IC flare, not an infection, hits home in explaining an IC flare, rather than “Painful Bladder Syndrome.” I’ve tried to explain IC to others and get blank faces. When I explain it’s like having slight, mild, moderate, severe or horrific UTI symptoms, they get it and are shocked that people can live like that. As we all know here, we are warriors in a battle that not only includes IC itself, but uniformed doctors and clinicians.

My question to the forum is, what does one do with the constant interrupted sleep due to having to get up to use the bathroom, on a good night, 6 to 8 times, and if course during moderate flares 12 to 16 times a night, severe flares up to 18-20 times a night which basically means no sleep. I don’t drink or take any medication (started off with Elmiron but fortunately for me, had to stop due to side effects) and strictly follow the IC diet. I’m sure many others have the same constant, nightly interrupted sleep and other than camomile teas and other natural approaches, anyone finding success with more than a couple hours of UNINTERRUPTED sleep ?

One more question ? Does anyone know if the effects of IC interrupted sleep due to bathroom visits are being studied ? I often worry about what the cumulative effects of years and years of interrupted sleep due to IC will bring in later years.

I’ve been on and off this wonderful site for many years. Thank you, all, for sharing your stories, information, advice, comfort and support. Wishes for you today include moments of joy, a few spurts of laughter, and knowledge of your value.

[ICNDonna]

Does it help at all to have marcaine or lidocaine instilled? I have a friend who has some relief from self instilling a mixture that includes lidocaine. I've been doing pretty well for a while, but I have found that marcaine works better for me --- it seems to last longer.

You probably have already done this, but sometimes we can identify triggers by keeping a detailed diary, noting time of day, everything that goes in the mouth, activities, frequency, pain levels. I wish I could help.

Sending gentle hugs,
Donna

[AmandaM]

I’ll definitely try the marcaine…thank you so much for the suggestion !!! I’ll check back with results. I try to keep a pretty specific journal of food, activities, etc., but admit at times I’m less than diligent. I suspect, too, that the onslaught of Covid (who would have ever thought we’d be dealing with this) , the constant ups and downs, limitations and all the mental and emotional aspects of Covid are playing a part. Thanks again Donna.

[ICNDonna]

I have to agree that Covid has had an effect on all parts of our lives --- I miss the wonderful family celebrations, especially on the holidays --- and it's looking like Christmas will be more of the same.

Donna