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Interstitial Cystitis Community
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Avatar universal

IC/UTI symptoms, negative cystoscopy and lack of support

I've had chronic IC/UTI symptoms for the past 4 years and a few years ago I was diagnosed with IC based on symptoms. Over the years I have found effective ways to treat my symptoms, such as taking nitrofurantoin when my symptoms get bad and drinking lots of fluids throughout the day. I recently moved back in with my mother. Last week I had a cystoscopy done and it came back negative, but it was the most horrible medical procedure I've ever had in my life - pure torture (most people say it doesn't even hurt). As a result, the doctor who performed the cystoscopy said he didn't think I had IC.

Now my mother doesn't believe that I have any bladder issues and that it's all in my head and that drinking less fluids is going to fix the problem. She also berates me for taking too much antibiotics (I take it every 2-3 times a year when my symptoms get really bad and it helps a lot). The thing is that that drinking less fluids makes my symptoms WORSE. My mother often SCOLDS ME FOR HAVING SYMPTOMS, claiming that it's all happening because I'm not listening to her advice. Often times she'll say things like "you should learn to live with your symptoms and simply ignore them" (I can't ignore them because they're so bad!!). She keeps claiming that she's "just trying to help" yet she seems to disregard the fact that her actions really offend me. Instead of being compassionate and understanding she makes it harder for me to deal with my symptoms, because now I need to deal with her scolding sessions too. Honestly it would be so much better if she didn't "try to help" and just let me manage my symptoms.

Does anyone else have UTI/IC symptoms with a negative cystoscopy?
Does a negative cystoscopy really mean that I don't have IC? If it's not IC what else could I be suffering from?
Also, has any of you had to deal with family members who constantly scolded you because of your symptoms? or people who simply didn't believe you?
2 Responses
649848 tn?1534633700
COMMUNITY LEADER
I'm not sure what you mean by "negative" cystoscopy... cystoscopy doesn't always indicate IC, but that doesn't mean we don't have it.

What symptoms do you have?  There are other things, such as pelvic floor dysfunction, etc that can also cause symptoms similar to IC...
Avatar universal
This sounds exactly like my case. Nothing was found in my cystoscopy but my doctor prescribed me Elmiron anyway and it has started to help. It also started with multiple UTI's starting February last year. My mom also does not understand and claims that I don't have interstitial cystitis and everyone gets uti's and that if I lower my stress I will feel better.
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