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Glutenfreegal

Updated 1y ago

Dealing with Interstitial Cystitis: Seeking Advice

Have had a lot of new symptoms since august. Multiple UTIs, bladder pain that lasts for weeks, anal pain in addition to bladder pain, can’t empty bladder all the way, daily leakage. My doctor thinks I have interstitial cystitis. How were you diagnosed/treated?

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QuinnS

2y

Hello, to revive an official diagnosis you have to have a cystoscopy. Highly recommend pushing for anesthesia. Having IC and someone going up your inflamed urethra with a sharp object then filling your bladder with water, triggering a flare is… not fun. Some doctors put you under but mine didn’t give me an option, saying if I were a man, I would get it but my urethra is small so I should be fine.
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Blaire

2y

I never had a cystoscopy. I just got diagnosed after a history of uti's and kidney stones. And coming in with bladder pain but no infection
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Blaire

2y

is that something you have to have?
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Kintsugi13

2y

I had a cystoscopy about eight years ago and it was not fun. I agree with QuinnS that having someone with you and asking for whatever pain meds you can get for the procedure is crucial. For regular symptoms, I find that Pyridium has been amazing and side effect-free for me. My IC really flares up mostly when I have a ton of stress and/or when I let me bladder get too full.
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Lelabel

2y

Firstly sending lots of sympathy your way!💕 Those are the exact symptoms I experienced prior to my diagnosis. I had a cystoscopy done for a diagnosis but highly recommend finding someone who will put you under for the procedure. I opted to be put under after reading others experiences and feel it was the better choice. Hope this helps!
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PinkPantalones

2y

I know I’m late to the party but it took years to diagnose my IC. And it was diagnosed with a cystoscopy. I agree with everyone else, demand they put you under for it.
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Alice99

2y

I was originally diagnosed with pelvic floor dysfunction after under going a cystoscopy awake. My bladder spasmed so badly they had trouble pulling the scope back out. At the time the symptoms I had seem very similar to yours now but after over a year of of PT I was still experiencing lingering bladder pain and was eventually diagnosed with IC. 10/10 would recommend being out for the procedure, and also looking into pelvic floor dysfunction because both conditions can share symptoms and effect one another
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QuinnS

2y

Once you are diagnosed, go to pelvic floor physical therapy. Helps a lot with exercising, sex, and more
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Lil_mew

2y

It sound like you have IC and pelvic floor disorder which would explain the bowel issues. I have pelvic floor physical therapy and trigger point injections into my bladder every 3 months
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Preschool_Teacher

2y

Hydrodistension/ cystoscopy by urologist that specializes in ic. Don’t let them do it when awake only under anesthesia. If they insist on doing it awake don’t walk run from that dr as fast as you can- too painful if done awake and often because of that they can’t get the diagnosis
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IsabelleCarroll

2y

I had a cystoscope and maybe it’s different for everyone but it didn’t hurt too much for me at all!! The whole thing was pretty quick and minor so I would say the experience seems to vary person to person.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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