HBO's Girls star Zosia Mamet endured six years of "unbearable" pain before discovering she had PFD. Here, an expert explains what this confusing condition really is, symptoms you may experience, and how best to treat it.

By By Abby Haglage
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Zosia Mamet has a simple message for women everywhere: Excruciating pelvic pain isn't normal. In her 2017 MAKERS Conference speech this week, the 29-year-old opened up about her six-year battle to find the cause of what she says felt like the "worst UTI in the world." Turns out, it was something much different.

Suffering from "insane urinary frequency" and "unbearable" pain during sex, Mamet says she went to every doctor and specialist she could find to track down an answer, but when urinary tests, MRIs, and ultrasounds all came back normal, her doctors started doubting her complaints and pain level. One misdiagnosed her with an STD and put her on an antibiotic; another suggested she was "going crazy." (Mamet's co-star, Girls writer-producer Lena Dunham has also been vocal about her health struggle with endometriosis.)

After trying everything from painkillers to hypnosis, Mamet went to her first female doc and finally found an answer-a condition, she revealed, that is shockingly common: pelvic floor dysfunction (PFD). So, what actually is your pelvic floor? The term refers to the group of muscles, ligaments, connective tissues, and nerves that support and help the organs in your pelvic area function properly. For women, the organs in questions refer to your bladder, uterus, vagina, and rectum. According to the Cleveland Clinic, pelvic floor dysfunction is defined as the inability to control those pelvic floor muscles in order to have a bowel movement, or more specifically, people with PFD contract these muscles instead of relaxing them.

While Mamet finally found her answer (and proper treatment) after years of frustrating doctor visits and misdiagnoses, her struggle isn't a new one.Despite the lack of awareness about this disorder, studies suggest that one in three women will experience PFD in their lifetime, but the women's health world still keeps information about this "under the rug," says Robyn Wilhelm, a physical therapist who runs a pelvic floor physical therapy center in Arizona. Here, Wilhelm shares more about what PFD actually is, how it's diagnosed, and what we can do to deal with it.

Painful sex can be a symptom.

The most common initial symptoms are unexplainable pelvic or groin pain, including possible pain with intercourse or orgasm," says Wilhelm. But pain isn't the only indicator that there is a problem. Due to the location of the pelvic floor muscles, the condition can also cause improper functioning of your bladder and/or bowels-leading to urinary and fecal incontinence or constipation, she says. Yikes. (P.S. Did you know that peeing in the shower has some surprising pelvic benefits?)

The cause is still unclear.

Considering how many women are affected, you might think doctors have a handle on what exactly causes PFD. Think again. The science world is still trying to nail down a specific cause of the disorder. While one big misconception is that it's the result of pregnancy or childbirth, neither has to occur for a woman to be at risk for developing PFD, says Wilhelm. Other reasons it can develop include traumatic injury, or even poor posture. Plus, female athletes often report symptoms associated with PFD, such as urinary incontinence, but the reason is unknown, she says. Finding the root cause of your PFD can be a long, taxing process of investigations and tests, but specialists such as pelvic physical therapists or physicians who are well-versed in the pelvic region, may be able to offer a more definitive answer, says Wilhelm. Even still, a cause and effect pathway is still hard to determine in some cases, she warns.

Misdiagnosis is a common problem for those with PFD.

Unfortunately, Mamet's years spent shuffling from doctor to doctor without answers is a common narrative-it's indicative of what Wilhelm calls a "lack of awareness and knowledge" in the medical field, both for how to diagnose PFD and what to do for women who suffer from it. "On average, women will see five to six professionals before being diagnosed accurately," she says. "The awareness has improved steadily in the last five or so years, but we still have many women suffering in silence or not being able to get the help they need."

There are ways to treat it-and physical therapy is one of them.

Getting diagnosed with PFD doesn't mean submitting to a lifetime of pain. While medicine (e.g., muscle relaxers) can be used to manage the pain, biofeedback through physical therapy is the most effective treatment. According to the Cleveland Clinic, the nonsurgical technique provides an improvement for more than 75 percent of patients who try it. "Physical therapy performed by a pelvic physical therapist can be very effective," says Wilhelm. While the pelvic floor muscles are the focus of this treatment, other muscles can be contributing to the pain as well, so there's more to this than lying on a table. Other techniques Wilhelm uses with her patients include external and internal manual therapy, myofascial release, stretching, and electrical stimulation.

No, you are not crazy for thinking there is a problem.

"People mistakenly cast off symptoms that often occur with PFD, such as urinary incontinence, as 'normal' effects of having babies and growing older," says Wilhelm. "It can be common, but should never be viewed as normal." So, if you think you're one of these women, save yourself years of silent suffering and head to a doc or therapist who specializes in PFD stat.

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Comments (1)

Anonymous
March 25, 2017
As a Pelvic Health Physical Therapist I am overjoyed to see coverage of pelvic floor dysfunction in the press. However, as a woman who has struggled with misdiagnosis and disease I think your article falls very short. Using PFD as a diagnosis is like saying to someone who has torn cartilage in their knee that their only diagnosis is Vastus Medialis insufficiency. PFD derives from somewhere, especially in the young, never pregnant population and the real story here is how gynecology has failed this poor woman. She has an underlying cause to her pain. The symptoms listed suggest both IC and Endometriosis, two conditions that can be helped by treating the pelvic floor but not cured and in the case of endometriosis for every minute we are misdiagnosing women with PFD instead of the wrong cause we are costing them their lifestyle and fertility. Endometriosis should be treated in multidisciplinary settings that include complete EXCISION of endometriosis and then pelvic floor therapy to help with remaining pain. As a woman who suffered a long time and as a physical therapist, I wish someone has explained this to me earlier. I spent far to much time thinking my pain was only muscular, wishing that was the answer and by the time I received diagnosis of endometriosis it was far to late to fully help me. You have a responsibility in the press to cover the real story here and not sum everything up into muscular dysfunction