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Have you ever been diagnosed with interstitial cystitis or experienced any type of bladder issues with your AS?

This week I was diagnosed with Interstitial Cystitis. I have heard people in the community mention they have bladder issues, and upon further research learned that sometimes IC is linked to rheumatic conditions and fibromyalgia.

  1. Katie:
    \
    I knew I wanted to get back to someone about this. Sorry it took so long.

    Here are some references.

    Nice general reference:

    https://www.painful-bladder.org/pbs-ic_ass_dis_introduction.html

    A mentioned association:

    https://tmu.pure.elsevier.com/en/publications/a-case-control-study-on-the-association-between-rheumatoid-arthri

    Association with treatment ideas:

    https://www.columbiaurology.org/adult-urology/urinary-disorders/female-urinary-disorders/interstitial-cystitis

    a case control study from 2013:

    https://www.columbiaurology.org/adult-urology/urinary-disorders/female-urinary-disorders/interstitial-cystitis

    Katie: I was not familiar with this, I hope these links might help out.

    I am so sorry i am late.

    rick - moderator

    1. Wow, thank you for taking the time to look into all of that Rick! Good information is never too late!

      I recently joined an IC facebook group and have actually come across a few women in there with AS as well. I'm still learning so much, so any and ALL information is appreciated!!

      -Katie

  2. Hi Katie,
    My heart and thoughts are with you. I understand completely what you might be going through. I strongly believe that there are many, many of us with AS abs related conditions who also have concurrence of IC or bladder issues. So happy you found an online community of people who struggle with IC and AS, that’s exactly what you need for support!

    Coincidentally (or not?) I was first diagnosed with IC prior to my AS symptoms ever knocked on my door. Like a full 10 years prior. I was 16 when I first experienced symptoms related to IC, and 19 when I received my actual “true” diagnosis through a pelvic laparoscopic surgery. My whole world was laser focused on IC treatment and surviving it as a teen and young college student, that suddenly when I was through grad school, my symptoms began to subside and my AS symptoms began. I can’t make this stuff up. One was traded for the other. Now I have minimal to no IC symptoms and moderate to severe AS.

    Interestingly these last 2 big flares left me with UTI’s and increased bladder urgency and other symptoms. These symptoms are nothing compared to my other AS symptoms, but I made sure to note them in my health log. Anxiously I’ve always wondered if I would be plagued with both and if my IC symptoms would return.

    I can imagine you’ve scoured resources online, but I know the IC-network website was super helpful for me during that time. Unfortunately I don’t have resources related to the cooccurrence of IC and AS, but I know the life style treatment recommendations are definitely helpful for managing both AS and IC flares. I did go to a nutritionist for my IC back in the day, and followed a low potassium, anti inflammatory and low starch diet which was helpful to life changing at times. My nutrition and diet are very similar to that currently to manage my AS symptoms as well. No doubt these conditions overlap.

    You’re not alone. Sending all my best,
    ~Melinda

    1. Melinda,

      Thank you so much for sharing all of that with me! Shortly after posting here, I joined a couple of groups on facebook for IC and found several people there with AS as well!

      What you said about how one sort of traded out for the other, that is exactly what has happened to me at this point. I seem ( and I say seem with caution) to be in remission from my AS. I still am very stiff in the mornings, but it is nowhere near the severity that it was a year ago. My IC, on the other hand, causes me a lot of issues daily. I keep getting recurrent UTI's and pelvic pain looms. I take amitriptyline for it and it has helped tremendously!

      I so appreciate you taking the time to respond to my post. I hope you continue to see progress in the management of your AS symptoms.

      -Katie

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