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View Full Version : Just been diagnosed with interstitial cystitis - anyone else?


tan235
17-05-18, 01:05
So I"m not sure how to feel...
But the urologist has said it's very likely to be Interstitial Cystitis.
He doesn't want to put me through any invasive testing but says my symptoms are textbook IC.
I've been reading about it and I shouldn't have done that.
All these symptoms started after the birth of my daughter, and I get what feels like a low-grade UTI but this time the flare has lasted 2 weeks. I"m not happy, I'm slightly terrified and currently in bed feeling sorry for myself.
Love to hear from anyone else who has this?
Leslie735
17-05-18, 03:37
I wasn't diagnosed but had a terrible fear of it 4 years ago. It's actually what set off my HA. I had what you described, a low grade UTI. Antibiotics did nothing and the tests were clear for UTIs. I googled and IC came up. I fit the symptoms but didn't have any pain. I went to a uro gynecologist and she didn't test me but told me I didn't have it that it was anxiety. Anyway, I was still freaked out by it and still had symptoms. This went on for 8 months on and off. One day during my several googling sessions I ran across something called TMS (Tension Mind Syndrome). Basically your mind causes the symptoms based on repressed emotions. I won't go into details but you can look it up. I did the journaling progr and talked with a lot of people on the forums and within a few days the symptoms disappeared. Feel free to PM me. *Hugs*
tan235
17-05-18, 03:58
I don’t have pain either! Just an urgency and a discomfort ... will google it
Leslie735
17-05-18, 04:06
I don’t have pain either! Just an urgency and a discomfort ... will google it

Yes I did too! I tried the diet and it did nothing.
tan235
17-05-18, 05:26
That's an amazing discovery - thank you - have you had any other flare ups since then?
I get them on and off and normally alway linked to my IBS .... I think what I have is a form of IC but not the 'garden variety IC' - the urologist was really not overly concerned, he just said, 'don't google.'
WiseMonkey
17-05-18, 09:11
Yes, I've been diagnosed with IC (yet another autoimmune condition). I control it with diet and drink lots of water and luckily the flares are infrequent. The last one was in 2010 and 15 years previous to that. I had a scope done at the urologist then treatment for it. I had frequency and bad muscle spasm pain.

The diet is https://www.ichelp.org/wp-content/uploads/2015/07/food-list.pdf
tan235
17-05-18, 09:35
Oh wow Wise Moneky - we have similar afflictions, don't we?
What did the urologist give you to take?
My urologist didn't give me any advice or information on how to look after it?
I get the 'flares' few and far between and they normally only last for a couple of days but this one is still going 2 weeks later.... going back to the urologist. He did no testing he just based it off the symptoms.
So nice to hear from you - thank you.
x
WiseMonkey
17-05-18, 10:19
Oh wow Wise Moneky - we have similar afflictions, don't we?
What did the urologist give you to take?
My urologist didn't give me any advice or information on how to look after it?
I get the 'flares' few and far between and they normally only last for a couple of days but this one is still going 2 weeks later.... going back to the urologist. He did no testing he just based it off the symptoms.
So nice to hear from you - thank you.
x

I had a bladder stretch under general anesthetic then an infusion of soothing medications put in. Subsequently I had 3 bladder infusions with a numbing agent plus some Vesicare (anti-spasmodic) tablets. It took a few months to recover. If I get some aching, I immediately drink lots of water with an inflammatory.