IC Awareness Month – Day Two – Diagnosis

So, today is all about the diagnosis. And I can say that my diagnosis was one of the easier ones from what I hear from other IC folks.

In 2015, I had to have a hysterectomy due to uterine prolapse. As it turns out, my doctor marked on my chart that he had done a cystoscopy (one of the tests most commonly used to dx IC) during this procedure, but oddly, that wasn’t communicated to me post-op. All I knew was that during my recovery, I was MISERABLE, and what I didn’t know was that it wasn’t normal post-op misery. My bladder was the problem. But, within months of recovery, I started dealing with a slew of issues from the hysterectomy that were unforeseen, so my bladder pain was kind of lumped into all of that mess, and it became one big ball of pain and complication constantly, day in and out for months…

Fast forward 14 months from that surgery, another specialist and rounds of tests with that specialist, and I was having another one to fix the issues from the hysto. My new specialist (a urogynocologist) had to install mesh to hold up my bladder, rectum, and vaginal vault – all of which were also prolapsing (my body is a dumpster fire). And, my recovery for THAT was doubly awful and tender, and as it turns out, the doctor for that one ALSO did a cystoscopy. However, he did tell me this, but I was so in and out of it on pain killers the day of and after my operation that the word “cystoscopy” never really registered with me. However,  when I went in for my post-op and told him that my abdomen was super tender whenever I touched it and that some foods and activities had been making miserable for about the last year alongside the tenderness, he told me that I had IC. He had noticed it when he was in there for the operation, and he reminded me that he’d mentioned it to me in the hospital. I had to remind him I was so drugged up that I was lucky I remembered my name. We had a good laugh, and he got me on the right path to understanding this disorder and what it means.

He gave me papers on it and a brief overview, alongside treatment options and his recommendations (which I will cover in a post later on). But, I left that office feeling lighter just because I had an answer. He told me not to Google it because what I would see could be scary, but I don’t listen, and Googling did occur. Often. And instead of finding it scary, I was fascinated. So many stories existed out there of people dealing with what I had been dealing with and had no answer. I had felt like I was crazy, or that it was normal healing, but to know that what I was going through had a name made me feel like I wasn’t alone after all.

Now, that’s not to say it was a relief all around. To be diagnosed with a chronic disorder that is a medical mystery and masks itself as other things often was not exactly what I would call comforting – especially at my age. But, as I read site after site, and story after story, I started feeling less fear and apprehension and more comfort in knowing that I wasn’t alone – I wasn’t crazy (or crazier than usual). And for anyone who has dealt with something like this, knowing you aren’t alone is more than half the battle.


This is not a photo of my bladder, but I have seen photos of mine, and this is not a far cry from what it can look like. It’s ugly and burning and nasty… and it’s all a part of the joy of IC. Come back tomorrow for more on my month-long IC awareness journey…

And how does this make you feel?

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