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By HEALTH/Kristine Thomason
Updated Feb 20, 2017 @ 6:45 pm
Credit: Michael Loccisano/Getty

Have you ever heard of pelvic floor dysfunction? Neither had Zosia Mamet until she was diagnosed with the condition after years of confusion about what could be causing her unbearable pelvic pain.

The Girls actress opened up about her difficult experience at AOL’s Makers Conference in Los Angeles earlier this month. "For six years it felt like I had the worst UTI of my life," she said.

But the answer wasn’t a UTI, or a bladder infection, or any other condition numerous doctors and medical tests (including urine, stool, sonogram, CT scan, and others) could decipher. “I wanted a UTI like a kid wants a puppy for Christmas,” she said. “Because every time my test came back negative, it meant I still didn’t have an answer to what was causing my insane urinary frequency, unbearable pain during sex, and a vagina that felt like someone had stuck a hot poker up it.”

After countless negative tests, many reputable doctors told Mamet that the pain was all in her head and she’d have to “learn to self soothe.” That is, until one doctor finally diagnosed the 29-year-old with pelvic floor dysfunction, a surprisingly common condition that affects one in three women.

Despite that statistic, Mamet’s multi-year quest for an answer isn’t uncommon, says Jen Gunter, PhD, San Francisco-based gynecologist who specializes in pelvic pain. Since there’s a wide range of symptoms associated with pelvic floor dysfunction, the condition is often misdiagnosed as anything from a bladder infection to endometriosis to, as in Mamet’s case, psychosis.

But pelvic floor dysfunction (also referred to as pelvic floor disorder, high-tone pelvic floor disorder, or somatic dysfunction of the pelvic floor) is a very real condition, says Dr. Gunter. “It can be used to describe a pelvic floor that’s too weak, or one that can be tightening inappropriately.” The latter—which is what Mamet experienced—can arise as the result of surgical trauma like a hysterectomy or delivery (both vaginal and C-section), or completely out of the blue. In either scenario, “what happens is the muscles can develop increased tension and get tighter, which can lead to a variety of other symptoms,” says Dr. Gunter. However, experts still don’t know for certain the underlying causes of the condition.

Symptoms may include difficulty inserting a tampon (since the muscles are contracted), an overactive bladder (caused by muscle spasms), pain during or after a bowel movement, feeling like your partner is “hitting a wall” during sex, and trouble reaching orgasm (again, due to contracted muscles). And, of course, many women also experience the general, excruciating “hot poker up my vag” pelvic pain Mamet described.

If any of these symptoms hit home, Dr. Gunter says it's crucial not to write off your pain as a UTI, or assume that sex is simply supposed to hurt. She also advises paying attention to the type of pain you’re experiencing. Your organs don't feel pain in the same way your nerves and muscles do, and pain in the latter group is generally really specific, she says. "So if a woman points to one side and says I have pain here, it actually can’t be her ovary, but it may be muscle pain.”

And if you do in fact have pelvic floor dysfunction, the best course of treatment is simple physical therapy, says Dr. Gunter. They’ll help you to strengthen your muscles that control and support the pelvic floor (such as your psoas), and also teach you to bring better practices into your daily life, like improving your posture. Some doctors will also suggest vaginal dilators or, in some rare cases, botox, to help enhance the work done in physical therapy.

VIDEO: Behind the Scenes with Zosia Mamet

At times, Dr. Gunter says, doctors may prescribe nerve medication. However, she suggests staying far away from other drugs like vaginal valium or benzodiazepines since side effects, such as constipation or muscle spasms caused by withdrawal, may actually make your symptoms worse.

Again, it's important to keep in mind that while this condition may be common, many doctors are still unaware pelvic floor dysfunction exists and some even think it’s made up, says Dr. Gunter. “But we have specialized doctors and physical therapists trained to treat it, and it's possibly one of the most common causes of pelvic pain I’ve seen.” So if you’ve been "diagnosed with chronic anything in the pelvis," she says, seek help from a gynecologist who specializes in pelvic pain to "be sure it’s not your muscles."

And when it comes to any pain or medical problem a doctor tries to dismiss, don't be afraid to stand up for yourself and your body.

“It is essential as women that we know our bodies, and that we trust them, and that we don’t ever let someone tell us that what we’re feeling isn’t real,” Mamet said while closing out her presentation at Makers. “Just the fact that you’re feeling it makes it real.”

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