You may have heard that Zosia Mamet, one of the stars of HBO's Girls, came out last month about her struggles with pelvic floor dysfunction (PFD), which caused her years of sexual difficulties, pain, and problems with urination. "For six years it felt like I had the worst UTI of my life," Mamet said during an address at the AOL's Makers Conference in Los Angeles. "They told me I was crazy." She described how she was misdiagnosed, was prescribed medication that made her gain weight and feel depressed, and ultimately was told that it was all in her head. After suffering for years with misdiagnoses, Mamet finally found a doctor who knew her condition was real. "I wouldn't trade in my pain. My pain taught me everything," said Mamet. "We need to trust our bodies. Just the fact that we are feeling it makes it real."
The sad truth is that Zosia's story is not unique. Millions of women (and men) suffer from various forms of PFD and feel just as alone and "crazy" as Zosia describes.
Thankfully, awareness of pelvic floor issues is on the rise. Yet there are still misconceptions about PFD and discrimination against—and apathy toward—people with PFD symptoms.
Let's clear things up and talk about why PFD is, in fact, a BFD.
What is PFD?
Pelvic floor dysfunction (PFD) is a term for a musculoskeletal disorder that can cause a wide range of symptoms in your pelvis.
Let's look at the first part of the term, the "PF," or the pelvic floor. The pelvic floor is a group of muscles that sit at the base of the pelvis. The pelvic floor muscles keep you stable, high, and dry, acting as a support system for your abdominal and pelvic organs. They also help close off the orifices they surround, including the urethra, vagina, and anus in women, and the urethra and anus in men.
The "D" in the term PFD refers to a lack of—or a change in—function of the pelvic floor muscles. This usually presents as weakness or excessive tension in the pelvic floor and manifests as either a lack of support (causing issues such as pelvic organ prolapse or back pain), or a lack of closure (causing issues such as bladder leakage, fecal incontinence, or unintentional "slips" of wind). Too much closure, or an inability to relax these muscles, can cause painful sex, difficulty initiating the stream of urine, and generalized pelvic pain, which is often felt in the buttocks, tailbone, or groin.
Whether weakness or excess tension is the primary dysfunction, a lack of coordination and control of the pelvic floor (and surrounding) muscles is usually the ultimate concern. Thankfully, there is help in the form of pelvic floor physical therapy.
Why aren't more people getting help?
Despite rising awareness about PFD, many people are still embarrassed and ashamed to admit they have problems such as bladder leakage, sexual pain, and problems on the toilet. It can feel "weird" to talk about these issues with family and friends, and awkward to discuss them with a health care provider with whom you may have only a five-minute window for consultation. Many individuals would rather suffer in silence than discuss their most personal concerns and "dirty little secrets" with a provider who is often a stranger—and a rushed stranger at that.
To make matters worse, since these problems are only just now starting to be openly discussed, some health care providers are not yet aware that there are conservative (noninvasive, nonpharmacological) treatment options such as pelvic floor physical therapy.
A clinician has the power to make or break the spirit of a person suffering from PFD.
From not knowing where to send clients, to making offhand comments that should NEVER be made in the first place, the patient-provider aspect of the PFD story is crucial. Over the years, I've collected stories from women who have described their providers' lack of sympathy and lack of awareness about potential treatment options for PFD.
One woman's midwife commented, "this (prolapse) is normal after childbirth; get used to it."
Another woman wrote to me with the following question and story:
When I look at my lady bits the vaginal opening is a nice healthy looking pink...but it looks like chewed-up bubble gum. I first noticed this after my son was born almost 10 years ago but was told by a quite rude female doctor that I was just 'inspecting myself a bit too closely.' I am now divorced and very self-conscious about getting back out there anyway, but with the added insecurities of having someone completely turned off by how I look 'down there.'
As a health care provider myself, when I hear these reports, I feel a mixture of sadness and anger bubble up inside... How unfortunate that people (particularly medical providers) continue to harbor the belief that the pelvic region is something that should be off-limits as far as conversation, self-awareness, and self-care!
Of course these are isolated incidents. Many health care providers are fully aware of PFD signs and symptoms and are supportive and knowledgeable about conservative treatment options. My sincere hope for anyone dealing with PFD is that they will encounter one of these more enlightened providers.
In conclusion, PFD is a BFD, and there is hope.
When it comes to PFD, please realize that these underdiscussed problems are MORE COMMON than you might think.
If you're dealing with PFD, know that you are not alone, and if you need help with something, speak up! Talk to your health care provider, and if he or she doesn't take you seriously, talk to someone else. There is help out there, and you know your body best… So listen to it if it's telling you that something is "off."
For stories of women dealing with PFD, watch this video. And to find a women's health physical therapist locator, check here.