Zosia Mamet's Pelvic-Floor Dysfunction Felt Like the Worst UTI Ever

It took years to get the right diagnosis.

February 13, 2017

Zosia Mamet made a startling revelation recently: She suffered from undiagnosed pelvic pain for six years. “For six years, it felt like I had the worst UTI of my life,” the Girls star revealed at the AOL Makers Conference. Doctors subjected her to a battery of tests, including urine and stool exams, sonograms, and CT scans to check for bladder infections, urinary tract infections, and more. To Mamet's frustration, everything kept coming up negative.

“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 years of testing, the 29-year-old says she was told by several doctors that the pain was in her head and she’d need to “learn how to self-soothe.” In fact, she recalls, one doctor said, “I think you’re just going to have to come to terms with the fact that you’re going to have to live the rest of your life in pain.”

Luckily, she finally received a diagnosis: pelvic-floor dysfunction. She'd never heard of the condition, but, she notes, estimates suggest that one in three women have it.

Your pelvic floor is a group of muscles that support the organs in your pelvis—including your bladder, uterus, and rectum—like a sling, the Cleveland Clinic reports. These pelvic floor muscles ultimately help control your bowel and bladder movements.

Pelvic-floor dysfunction is a broad term that encompasses a number of conditions that can impact your pelvic floor, like pelvic organ prolapse, chronic urinary tract issues, fecal problems, and vaginismus, a condition in which a person’s vaginal muscles squeeze or spasm uncontrollably, Jessica Shepherd, M.D., an assistant professor of clinical obstetrics and gynecology and director of minimally invasive gynecology at The University of Illinois College of Medicine at Chicago, tells SELF.

While there isn’t a lot of data on pelvic floor dysfunction, Dr. Shepherd says it’s probably more common than people think. “It’s grossly underestimated because women don’t report these issues,” she says. “They feel some shame, especially if they’re younger. Either they’re not seeking help or don’t talk about it.”

Sandip Vasavada, M.D., a urologist with the Cleveland Clinic, tells SELF that it’s also hard to get numbers on how common this is because it’s so underdiagnosed. "It is quite common, but there are challenges in diagnosing it properly," he says. "Generalists tend to not be aware of this existing." Even if they are, "doctors have to weed out a lot of different conditions," Dr. Shepherd says, noting that women with pelvic-floor dysfunction may be misdiagnosed with issues like endometriosis.

Women’s health expert Jennifer Wider, M.D., tells SELF that pelvic-floor dysfunction becomes more common as women age, but it isn't a normal part of the aging process. (Meaning if you suddenly develop it in your 30s, don’t assume it’s just because you’re getting older.)

In younger women, pelvic-floor dysfunction can be caused by childbirth, a history of sexual trauma or abuse, high-impact sports like horseback riding or gymnastics, obesity, and smoking (which damages collagen, meaning the tissue in your body can't provide support the way it should), Dr. Shepherd says.

The symptoms of pelvic-floor dysfunction can vary, but they may include pain and pressure in the vagina or rectum, a frequent urge to pee, pain during urination, muscle spasms, bowel problems, and a feeling of heaviness in your pelvic area, Dr. Wider says. Women may also have pain during sex, the Cleveland Clinic reports.

Once a patient is diagnosed, experts still have to figure out what the actual problem is, Dr. Vasavada says. It could be an issue with coordination of the muscles of the pelvic floor, for example. Treatment also varies depending on the type of pelvic-floor dysfunction you suffer from, but Dr. Wider says it can involve medications, surgical procedures, and even pelvic physical therapy in which a physical therapist works to tone or relax a person’s pelvic floor. (Mamet says she underwent physical therapy.)

Recovery is possible, but Dr. Shepherd says it varies from woman to woman and is ultimately a personal definition. For example, a woman who suffers from urinary incontinence due to pelvic-floor dysfunction may feel that she’s recovered when she leaks less on a regular basis. A woman with vaginismus due to pelvic-floor dysfunction may be happy when she’s able to have sexual intercourse or insert a tampon without pain.

No matter the cause, Dr. Vasavada says people "can get a lot of help" once they're given a proper diagnosis and treatment.

If you suspect you might have pelvic-floor dysfunction, talk to your doctor and be honest about your symptoms. “The best way to work through this is when we can have an open discussion,” Dr. Shepherd says.

While it may take time to get to a proper diagnosis, it’s crucial that you advocate for yourself. “I learned the hard way that it is essential that we as women know our bodies and that we trust them,” Mamet says. “And that we don’t ever let someone tell us that we are feeling isn’t real because it is—if you are feeling it, it is real.”

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