By otakuyassine3@gmail.com 
Lili Reinhart’s comments about being diagnosed with interstitial cystitis ring so true for those who’ve had chronic health issues, including myself.
In case you missed it, Lili shared her diagnosis last week along with the caption, “I was inspired to talk about this after my grandmother was ignored by doctors for months when exhibiting clear symptoms of cancer — and it was only after her own strength and advocation for herself that she was given a blood test that diagnosed her. And by then, the cancer had spread.”
The first time I heard the phrase “interstitial cystitis,” or painful bladder syndrome, I was at a urogynecologist after experiencing weeks of chronic pain. The middle of my back was hurting, I felt exhausted and had numerous GI issues. Even getting the referral to the specialist hadn’t been easy — a previous doctor had told me to try eating vegetables (I’m already a vegetarian) and exercising (I can’t exercise when I’m in pain). And, on this day, the recommended five-star doctor was running over an hour late during my lunch break.
When I finally saw him, he asked a series of questions about my medical history, including my prior diagnosis of PTSD. He asked what it stemmed from, and I told him that I had previously been raped. “Would you prefer to see a female doctor?” he said in turn. Yes, I thought, but you’re already late, I’m hungry, and I’d rather just get this over with.
To my surprise, I had to then undergo medical testing that involved having a catheter inserted. He’s an expert, I kept repeating to myself as my legs went into stirrups and my anxiety spiked. This is fine, this is fine—
“Have you ever had a problem with your labia? Like, when you wear jeans?” the doctor asked. I said no, I hadn’t. “Well,” he added, “if you want to reduce the size of your labia, we can.” I immediately felt mortified. Is he trying to upsell me a labiaplasty while I’m half-naked? I stayed quiet until it was over.
In his office after the test, he told me that I might have interstitial cystitis. To deal with the inflammation, he suggested a herbal oil and wrote down the name of a brand. I informed him that I wouldn’t feel comfortable taking it. He replied, “Don’t worry, this one won’t get you high.”
That weekend, I went to a party where I happened to meet someone with interstitial cystitis. Even more strangely, she had been diagnosed by the same doctor. She then proceeded to tell me that she had such a traumatizing experience with him that she’d been forced to kick him out of the room. “Oh yeah, and did he try to sell you the oil he makes?” she asked. I had no idea it was his own product.
In a follow-up, I complained to the medical establishment. I told a somewhat disgruntled employee everything, including what I’d heard that weekend, ultimately repeating again and again, “He suggested to a rape victim that she should get a labiaplasty, that at least feels inappropriate.” She told me I had “misunderstood” and offered me a conversation with the doctor, which I declined.
After a lot of crying over the pain and the mistreatment from doctors, I went via the hospital route and saw two specialists who were able to diagnose me. It took half a year, which, anecdotally, is quite fast in the scheme of things. I don’t have interstitial cystitis. In fact, the next urologist I saw actually listened to my trauma history and suggested it might be related to the physical manifestation of the pain.
I was able to get appropriate treatment because I have great health insurance and a job that allows flexibility. Numerous studies show that women in pain aren’t usually taken as seriously as men. The numbers get even thornier for women with mental illness, such as myself, and women of color.
So, what can be done? Well, if you’re a doctor, you’re in a great position to make change. But on the patient side, one specialist from the Katz Institute for Women’s Health echoed Lili’s words and said, “Many women don’t feel empowered to speak up for their health and wellness. Instead of reinforcing the idea that they be ‘good patients,’ we need to encourage them to push back.”
It’s a tall ask for when you’re in pain. But, until things change, at least know that you’re not alone.