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I have interstitial cystitis and its horrible. Never had any kind of tests Done for it and my obgyns that I’ve gone to are not at all helpful. When that flares up it overrides any other kind of pain because it’s unbearable! Like an awful UTI that won’t go away! If you have it, please tell me what kind of treatments you’ve been given. Or any kind of specialists you’ve seen. This and fibro are a horrible pair!
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Members rallied around someone struggling with interstitial cystitis and fibromyalgia, sharing that the two conditions often occur together... Read more
I had a recent episode where I thought I had a bad UTI. No infection and my GP said it was probably IC. I had never heard of it before. I think I’ve probably had this a few years now as I recall more milder symptoms that would come and go. I cut out coffee for a couple of weeks and avoided any acidic foods. My GP prescribed something called Vagifem that helped and my Naturopathic Doctor told me to apply pure vitamin E oil to the area. This had worked so far. I find if I drink too much coffee, it does irritate it. I also have a friend with IC and she recommended a book called “The Interstitial Cystitis Solution” by Nicole Cozean. She also saw a physiotherapist that specializes in pelvic floor treatments and it did wonders. Apparently taking baths is something to avoid as well.
I hope you find relief as it is so uncomfortable.
Sending gentle hugs. 🤗
Yes it is the same for Interstitial Cystitis. It works to calm the bladder muscles and walls of bladder. That is why it helps with interstitial cystitis
@A MyFibroTeam Member, are you on cymbata? When I was on cymbalta I had the urge to urinate but couldn’t go. (It wasn’t as bad as the IC I had years before than) I kept thinking I had an UTI, I would get tested, but there was never an infection. I later found out it was a side effect from the cymbalta. I’m in a few FB support groups for fibro, several people said they had the same side effect from cymbalta.
I was finally dxed with IC in 1999. You, if you haven't already, should see if you can get in with an urologist to see if you can get dxed or not. And not just that but one who deals with patients who have IC. My doctor that I see specializes in IC.
My lining to my bladder is in taters and just about gone so I deal with that. Diet makes a huge difference for me. The medications they have for IC has not really done buckus not one iota. I have ended up with an interstim implant that gives me relief.
I suggest visiting https://www.ichelp.org for information and if possible find a support group. The one I had in town dissolved. It is hard as hell to have IC or Fibro but to have both, which is very common, is hard.
As you can see there are a few of us who have both so feel free to ask away if you have any more questions.
I suffer with that too.
It's no fun.
I take berberine & echinacea.
Yes some foods can aggravate like sugar, coffee & other.
Does anyone know if pain and a sensation of heaviness and pressure in the vagina is a symptom of IC?
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