Months passed, and my symptoms got worse, eventually affecting my daily functioning. I would have to pull over two or three times on my 30-minute drive to work just to pee. Walking to and from the bathroom was taking up half my work day, and I was stressed about getting fired because I wasn’t working. One day, I wore jeans to work, and I had to go home early because I couldn’t physically wear them anymore—which struck me as really weird. I was also newly dating my now husband and trying to have sex was beyond painful. It felt like stabbing, tearing, and burning. This whole time, I felt like I was going crazy. It just didn’t make sense that a UTI could be this bad and last this long.
One day that October, when I was on my fourth or fifth round of antibiotics, my legs started to itch. I was wearing a skirt, and when I looked down, I saw that I was covered in hives. It turned out, I’d become allergic to the antibiotics I was taking. At that point, I thought, There has to be something else going on. A Google deep-dive led me to believe I might have interstitial cystitis (a.k.a. bladder pain syndrome). So I found a urologist near me, and it was just my luck that he happened to also be a sexual medicine specialist.
After I relayed my whole story, this urologist hit me with a term I’d never come across (which is saying something, since I’d done quite a bit of reading about women’s health): hormonally mediated vestibulodynia (HMV). It causes vulva pain due to low levels of testosterone and estrogen—hormones that are essential for keeping vulvar tissues healthy. He had me get on the exam table and gave me a handheld mirror to look at my vulva. It was bright red and inflamed, and looking at it, I was like, Holy shit, how did I miss this?
Next, he did a Q-tip test, which is when a doctor lightly touches around your vulva with a Q-tip, and you rate each touch on a pain scale of 0 to 10. I remember thinking, This isn’t going to hurt at all. But I nearly slid off the table. The Q-tip felt like a paring knife. That landed me with the HMV diagnosis, which we confirmed with bloodwork as well; tests showed my testosterone levels were very low.
My doctor suspects my HMV was caused by taking a birth control pill. (Editor’s note: The pill may lead to lower levels of “free” testosterone in the blood; breastfeeding, menopause, and certain medications like spironolactone similarly affect hormone levels and also can cause HMV.) Going off the pill can be the fix for some people—but that wasn’t the case for me, as I’d been off of it for a couple years by the time I got diagnosed. The treatment my doctor prescribed, and which I’m still on today, is an estrogen-testosterone cream that I apply to my vulvar vestibule twice a day and a testosterone gel, which I rub into my calf a couple times a week (and is absorbed into my blood).
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