interstitial cystitis after chemo anyone ?

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roby7
roby7 Member Posts: 55
edited June 2015 in Chemotherapy - Before, During, and After

hi Hi,

I finished chemo ( taxotere and cytoxan) on 3/19

On the first day of April I had a strange sensation in the clitoris area. I started tamoxifen after that so the chemo is the reason. My symptoms developed and now they are

Urgency and frequency I always have the urge to urinate for two month now

Pressure and discomfort in the urethra area

Sore clitoris

Urine burning some days

This is really hard and annoying

I went to different doctors gynecologist and urologist

Took several medicines

But all of them said it is from cytoxan no one gave me other reason

The tests and the ultrasound are fine no uti

One of the doctors said interstitial cystitis

I am really depressed

The symptoms are annoying

I stopped lyrica and Advil

I started Estrace cream as my oncologist said that

Any advice??

Wish u all the best

Thanks,

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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2015

    I have not been diagnosed with it, but I am still undergoing chemo and have every single symptom of it, with blood in the urine as well. Those symptoms are on "my list" to discuss with MO tomorrow. I have been on Cytoxan twice, so I should not be surprised. I hope it is not permanent! Hoping you get soem relief.

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2015

    I didn't do chemo but may have interstital cystitis. My urologist isn't sure if she wants to call it that yet. I'm on Tamoxifen, it did seem to coincide with appearance of symptoms. Perhaps Tamoxifen is making your situation worse? Double whammy of sorts. What helps me is drug uribel, and avoiding tea/coffee, anything with lemon/lime in it, carbonated anything. I'm also on Estrace. i was given information about an elimination diet but it was extremely restrictive, so I really didn't try it. That's all the advice I have, hope it's worth at least $.02.

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  • Italychick
    Italychick Member Posts: 2,343
    edited June 2015

    image

    my step daughter dealt with interstitial cystitis for several years, and was on pain meds, had her bladder flushed, everything they could possibly think of. We were at the emergency room constantly. She went to a urologist and went through every drug they had. We were told by an alternative doctor to try the product I have pasted in the product image. When she feels the pains, she drops one pill in a liter of water and chugs it down, doing for several days in a row. No more pain, and she has been using it now for about three years. I have also used it for a UTI and it cleared it up with no antibiotics. I am just throwing it out there. Best of luck to everybody.

    It is sold by REI as a camping water purifier, and I think Amazon might have it too.

    If anybody has questions, please feel free to pm me.




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