My condition first presented as a harm- less, if painful, urinary tract infection. I was on a work getaway in the New England woods, far from my regular doctor, when the symptoms began. “I just need some antibiotics,” I told the regional clinic’s nurse-practitioner. I’d had many UTIs in the past, I assured her. I knew what they felt like, and they felt exactly like this. Nonetheless, she insisted on testing my urine. She returned to the exam room, perplexed. She’d found no bacteria, she said, but wanted to send my sample to another lab. “If that test also comes back negative, you might have interstitial cystitis.” She gave me some handouts about “IC,” and refused to write me a prescription for antibiotics until she received my lab results in two days. Two days? Had this woman ever had a UTI? The burning pain, as anyone who has had one knows, impedes your every waking millisecond. Your consciousness relocates to your crotch. A friend of mine—a doctor, in fact—suffered UTI-like burning for months before he had surgery to correct a problem with his urethra. Afterward he told me, “I’d rather cut off one arm than experience that pain again.”
Later that night, I looked through the IC information the nurse-practitioner had given me. IC is a chronic inflammation of the bladder wall. No one knows why you get it, and there is no cure or treatment. There is no reliable way—or sometimes no way at all—to relieve the pain. Do not read those handouts! I admonished myself. You have a UTI!
I did not have a UTI. The culture came back negative. According to the nurse and her pamphlets, all signs were pointing to the cystitis. In a panic, I called my doctor in New York; New York doctors have cures for everything. “You’ll just have to ride it out,” my GP said when I described my symptoms and the preliminary diagnosis. “If women ruled the world, we might have a cure for interstitial cystitis,” he said, sighing. “But they don’t.”
Happy times. I turned to the Internet for solace. I learned that diet can cause “flares,” i.e., more intensely painful episodes. I learned that sex can cause flares (not that sex interested me). I spent the next few days weeping in the woods about all the sex I should have had. Why had I ever claimed I was “too tired”? What was wrong with me? I had a perfectly good vagina back then, why hadn’t I used it more?
Not that the problem was my vagina. Or, well, not exactly. A week after my first symptoms appeared, I returned to New York City and began the testing hell of “diagnosis by exclusion.” IC is a diagnosis you receive by not receiving any other. One by one, my urologist crossed off the alternatives—not kidney stones, not a yeast infection. Soon we were left with just one grim option: bladder cancer. But my bladder-cancer test was more than a week away, and even a day in chronic-pain terms might as well be a decade. I asked my urologist if, in the meantime, I might start some of the treatments she’d suggested I could try to “lower my pain baseline” if I proved to have the condition. One was acupuncture. (You know you’re in uncharted medical territory when your Western doctor cites acupuncture as your best pain-relief option.) The other was pelvic- floor physical therapy. She didn’t tell me what it entailed; I didn’t ask. I was too desperate to be curious.
Which meant that I walked in to my first appointment without the slightest clue what I’d encounter. Would I have to take off my clothes? Yes, I would. Would I have to allow a woman to put her rubber-gloved hand inside my vagina and reach so far into it that I was pretty sure she’d entered a hidden compartment that no longer qualified as “my vagina”? Yes to both. Yes to anything, if it would get me out of pain. Prior to this, I thought of myself as—had even bragged about being—a person with a high pain threshold. I’d stoically endured regular migraines for more than 30 years; I’d had two natural childbirths. But this burning around my urethra (and clitoris) stripped me of my identity. I became nothing but a nerve-ending receptor. During my darkest hours, I’d been reduced to scary math. How many years must I live this way? How old must my children be before my suicide won’t psychologically destroy them?
While I lay on the exam table, my therapist, Sarah Emannuel, explained that the pelvic floor is like a braided hammock of muscles suspended beneath your pelvic bone. Because quarters are so close down there—your urethra, your vagina, and your bowel are all near neighbors—the pelvic-floor muscles, when they misbehave, can disrupt the normal functioning of all three.
She conducted a thorough interview involving everything from my reproductive history to my diet to my sleep patterns. She asked me to describe the pain and where it was located. I still felt the burning, but I’d also developed a terrible, raw ache on the inside right wall of my vagina, almost like a contusion caused by the rough sex I definitely wasn’t having. “That doesn’t sound like IC,” she said of this last symptom. Emannuel put her hand inside me, touching my hip bone from the inside. She then hooked her fingers under my pelvic bone to access the soft tissue be- neath. “That’s it!” I said. Using her fingers, she pushed firmly into the spot. I felt as if I’d been temporarily sprung; the sensation was akin to the relief you feel after your tight shoulder muscles are given an almost painfully intense massage. I left her office in a daze. She hadn’t confirmed anything, diagnostically speaking, but she had assured me that IC really was very rare.
And after two sessions, Emannuel was fairly certain I did not have it. (Of all the patients who’ve come to her with a diagnosis of IC, only one, she believes, really had it; another therapist I spoke with agreed that IC is overdiagnosed by doctors.) What I definitely did have was pelvic-floor dysfunction (PFD) and, more specifically, a “trigger point”—a tight and spasming muscle—in my pelvic floor, for which there are a number of possible causes. PFD is a broad category that covers a wide range of conditions such as incontinence, irritable bowel syndrome, and discomfort during sex. My trigger point might have been caused by doing Kegel exercises either obsessively or incorrectly (nope), or a past trauma to the area (not that I could recall), or pregnancy/childbirth (in my case, too long ago to be the culprit), or obesity (no). Trigger points also can be due to stress (bingo). People hold tension in their pelvis, just like they do in their shoulders or back.