Or, Why I am changing to a female doctor
See that image above? That’s a scene from Chicago Med, season 6.
If I had watched the show in spring of 2021, when it came out (instead of now, on DVDs from the library), I might have diagnosed myself sooner.
Do you know what interstitial cystitis (IC) is?
I did not.
I did not, until about year ago, when I got into a conversation about bladder pain with a woman in my Buy Nothing group.
In 2006, I went to my doctor for repeated UTIs. The doc shrugged, said they weren’t UTIs and he didn’t know what was going on, and gave me an RX for the antibiotic you take for UTIs. (Which – you aren’t supposed to take antibiotics for UTIs anyhow.)
He told me to take a pill every time I had sex, since that seemed to be a triggering event.
A few months later, Mr T and I were out of town. I had UTI pain so bad that I called my doc for a painkiller. To his credit, he called an RX in to a local Walgreen’s immediately, but it still took a few hours to be ready.
And nobody – not the doc, not the pharmacist – saw fit to mention that AZO is the UTI painkiller and it is available over the counter.
After I married Mr T, the problem persisted.
I asked my primary doc. He said there might be drugs I could take. I said I didn’t want to take a drug for the rest of my life – I wanted to understand and solve the problem.
He sent me to a urologist who put a wand up my hoo-ha and looked at my bladder, which had no problems that he could see.
“But I feel like I need to pee all the time and sometimes it hurts,” I told him.
He told me I needed to train my bladder – that my bladder had become the boss of me.
He was right about that – I had let my bladder become the boss. I trained it and I needed to pee less frequently, but I still got the bladder pain.
I did not return to the urologist because my insurance said it was a hospital visit and charged me a $700 hospital deductible and a $500 lab work deductible.
I argued that he was a specialist who happened to have an office in a teaching hospital and I should be charged only the $45 specialist co-pay, but Blue Cross of Michigan is the worst insurance company in the world and my rebuttals fell on deaf ears.
And the expert had not seen anything. Clearly, this was a problem I would just have to learn to live with.
It got worse and I couldn’t live with it.
Two years ago, after I had had several doctor visits/calls about the UTI pain that would not go away, my doc prescribed oxybutynin, which is used to treat bladder spasms and has the happy side effect of reducing hot flashes for some women.
My bladder did not get better and my hot flashes did not diminish.
Once I learned about IC, I tried different treatments, including aloe extract, which got very expensive during the pandemic and did not work for me.
It was not until last year that I saw that some foods trigger bladder pain.
After years and years of gastrointestinal problems, including two bouts of c. diff and a fecal transplant, a very dear older friend has just learned – JUST NOW – that she might be gluten sensitive. My friend is not someone who spends hours online doing research. This is information she would trust her physician to give her.
And he didn’t give it to her until after she had serious GI problems.
My friend Shelly is a nurse practitioner who visits elderly people at home. When her patients have problems with discomfort, Shelly starts with diet.
“It’s so often what someone is eating,” she told me.
When I saw my about to be former doctor for my physical last fall, he asked if I was still taking the oxybutynin.
I told him I was not – that it had not helped me.
Then I told him I had figured out what my problem was.
“Have you ever heard of interstitial cystitis?” I asked him.
“Of course,” he answered.
“Even the writers of Chicago Med know what interstitial cystitis is!”
(He didn’t really say the part about Chicago Med. But he did say the first part.)
And I didn’t even know what to say.
If you knew about it, WHY DIDN’T YOU SUGGEST TO ME THAT IT MIGHT BE THE PROBLEM?
Why didn’t my doctor in Memphis tell me that I might have this weird thing called interstitial cystitis? That I should keep a food diary to see if certain foods, like vinegar and lemon juice and hot peppers, might trigger symptoms?
Why didn’t my first doctor here tell me I might have this weird thing called interstitial cystitis?
Why didn’t the VERY EXPENSIVE urologist tell me I might have this weird thing called interstitial cystitis?
Why didn’t my about to be former doctor tell me I might have this weird thing called interstitial cystitis?
Why didn’t anyone offer me the possible solution years ago?
Instead, I have spent so many nights awake, waiting for the AZO to take effect so the pain will go away and I can sleep.
I have used thousands of dollars in medical resources.
I have spent hours and hours and hours in pain.
And all along, they knew.