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After complications from a bladder prolapse surgery, a patient named Grace developed a hematoma, or pooling of blood, and she needed pelvic floor physical therapy to help her pelvic muscles relax after holding such a large mass of blood. Without PFPT, Grace’s pelvic pain could get so severe that it was unbearable to sit down, and even after her hematoma disappeared, Grace still got flares: sudden onsets of pain that she says felt “like somebody was literally putting a vise into my vagina.”
Even though Grace sometimes rated these flares as high as 9 out of 10 on the pain scale, her insurance company was skeptical about whether her PFPT was medically necessary, constantly demanding reevaluations that forced Grace to temporarily put her treatment on hold. During these breaks, Grace had no way to handle flares aside from making a note to bring them up with a provider later. “I think it took me longer to get better because I had to keep taking breaks,” she says. “I definitely got into very dark places at times. The pain was very triggering.”
Grace has also been to physical therapy for a torn rotator cuff in her shoulder—a much smoother process. “I don’t even need to get a doctor’s script for my shoulder,” she says, “but trying to get pelvic PT, you’d think I was asking for a new kidney or something.” Because common knowledge about pelvic health is low, with many patients feeling uncomfortable openly discussing this area of the body, the gravity of pelvic issues often goes overlooked. “I think people can understand a torn rotator cuff,” Grace says, “but they can’t necessarily understand pelvic hematoma until they’ve had one.”
Pelvic floor therapy is a form of physical therapy focused on the group of muscles and tissues that support the bladder, bowel, and reproductive organs. When these muscles become overly tight or loose, patients can experience issues like pelvic pain, pelvic organ prolapse, sexual dysfunction, and incontinence—which all have serious implications if left untreated. Pelvic floor therapy is used to either strengthen or relax these muscles through techniques including physical exercises, lifestyle modifications, and manual therapy, where the provider applies pressure to the pelvic area.
For some patients, pelvic floor therapy serves a purpose as fundamental as allowing them to sit in a chair without excruciating pain or leave the house without needing to access a bathroom every 15 minutes. Despite this, Grace’s experience is an extremely common one, since insurance policies that restrict appointment timing and limit the types of covered interventions or diagnoses have forced many pelvic floor therapists in the U.S. to stop accepting health insurance.
Pelvic health disorders can affect patients of any gender, but they’re about twice as common in women, and pelvic floor therapy is often falsely perceived as a women’s health treatment. This means not only that awareness about male pelvic health remains extremely low, but also that pelvic floor therapy is undervalued in a way that’s typical for female-specific treatments.
Insurance policies also fail to take harder-to-quantify aspects of treatment into account when determining coverage, which is particularly problematic when it comes to pelvic floor therapy. Feelings of trust between patients and providers are especially crucial in a specialty like pelvic floor therapy. Because symptoms are located in an intimate area of the body, patients may feel embarrassed or vulnerable talking about them with providers, especially when symptoms stem from past sexual trauma. Patients may also feel distressed about undressing and undergoing manual therapy with a provider they don’t fully trust, which can make it hard to make progress. Plus, patients with pelvic floor issues have often been frequently dismissed by other providers who lack knowledge about their conditions, and they may take longer to trust a new provider after being failed repeatedly in the past.
“Insurance companies don’t pay you to talk to patients. They pay you to do things with patients,” says Michelle Thibeault, a pelvic floor physical therapist in Meriden, Connecticut. Because most insurance policies reimburse providers with a flat per-service rate, which doesn’t increase with longer appointment times, providers like Thibeault have to keep appointments short to cover the costs of keeping their practices running. That means that the crucial conversation it takes to look at a patient holistically, taking individual lifestyle factors into account, is often what gets cut out first.
Jessie Klein used to be at an in-network practice before opening Willow Pelvic Health, a private PFPT practice based in New York and New Jersey. Though appointments were 60 minutes long at her former practice, Klein saw two patients per hour, working with one at a time while the other did exercises with an assistant. Because Klein values one-on-one time with patients, she decided not to accept insurance at Willow. “You can think with better clinical rationale and creatively, as opposed to having to just maximize the time you have,” she explains. Klein also recognizes that some in-network providers struggle with burnout because they’re incentivized to see as many patients as possible. “The job is nonstop,” she says. “You sometimes don’t have a break to go to the bathroom.”
Other providers add that insurance companies don’t always cover all of their necessary interventions. Pelvic floor occupational therapist Marlene Handler, for example, says many insurance companies refuse to cover the relaxation techniques she uses to assuage patients’ anxiety, overlooking that patients have to be in the right state of mind before other tactics can be applied. “If you don’t feel safe in your own body, it doesn’t matter what kind of skills I have as a clinician,” Handler says. “Your body will not recover.” Since leaving the insurance model to open the Lifted Lotus, a private pelvic floor therapy office in Brooklyn, she notices that her patients are improving faster—often requiring only about five to seven sessions, while many at her former practice returned for months on end before making progress.
For some patients, challenges with coverage feed into existing apprehension about undergoing such a vulnerable therapy. “For me, with this kind of pain, there’s an element of always trying to get out of dealing with it,” says one patient who asked to remain anonymous. After being forced to quit PFPT due to the cost, she says, “It felt like I was able to sneakily, but intentionally, ignore the issue.”
Marlene Berke was first referred to PFPT when she was 21 and found herself unable to have sex. “By unable,” Berke explains, “I mean if I tried, I’d get sharp, stinging, burning pain.” Berke had to wait three months to see a PFPT who took her insurance, which only prolonged her uncertainty about the cause of her pain.
What Berke didn’t know was that those three months were just the beginning of what’s now been a seven-year ordeal of switching from PT to PT, with each new practice presenting a brand-new set of obstacles. For a while, Berke drove 40 minutes each way to see the closest provider that took her insurance. Later, she gave in and paid hundreds per session to see a private therapist, because her pain was so severe that she could barely walk. “I was so scared that something was seriously damaged or wrong because it was hurting so much,” she explains. Berke has a Ph.D. in computational cognitive science from Yale, and she says trying to get effective treatment was more onerous than the six years of getting her degree.
Many providers are fighting to increase access to pelvic floor therapy—for example, Handler says, she uses her position on the board of the New York State Occupational Therapy Association to build awareness about the essential nature of pelvic health care. Still, there’s only so much that can happen without larger-scale changes to the U.S. health insurance system, which fails to recognize the value of treatments requiring high levels of patient-provider interaction. When asked what could make it easier for pelvic floor therapists to work in the insurance network, Klein says, “I don’t even think it’s within reality in our current health care system. I couldn’t even tell you a tangible solution.”
