What to Expect For Your First Pelvic Floor Therapy Appointment After a GYN Cancer Diagnosis
Anyone impacted by cancer knows treating the cancer itself is just the tip of the iceberg when it comes to taking care of yourself.
For those impacted by gynecologic cancer—an umbrella term that includes ovarian, cervical, uterine, vaginal, and vulvar cancers—one of the ways you can continue to care for yourself is pelvic floor therapy.
Why? “The pelvis is part of an entire system,” explained Dr. Alex Hill, a Doctor of Physical Therapy with board certifications in oncology and women’s health and a specialization in lymphedema. In addition to treating patients in Jacksonville, FL, Dr. Hill also creates education content freely available for patients and clinicians alike at OncoPelvic PT.
“It doesn't act in a vacuum,” she said. “If there's something going on at the pelvis, it can potentially impact things above and below.”
This is especially important because, as Dr. Hill explained, different treatments for gynecologic cancers, like chemotherapy, endocrine therapy, surgery, and both internal and external radiation, can cause side effects or make existing symptoms worse.
Dr. Kristin Sapienza, a Doctor of Physical Therapy specialized in pelvic floor and lymphatic drainage and founder of the New York City-based FemFirstHealth, said some of the symptoms that pelvic floor therapy can help address include: “pain/burning in their labia or pelvic region, urinary leakage, urinary urgency and/or frequency, pain or difficulty achieving intercourse or undergoing a pelvic exam and difficulty with their bowels post-treatment.”
“There's so much shame that is centered around these things,” Dr. Hill said, stressing that despite any stigma, if these symptoms are impacting your quality of life, you deserve to seek care for them.
“You should be able to go out and play with your kids or go running or be with your partner and not have to deal with these symptoms. You need to enjoy your life.”
Why Accessing Pelvic Floor Therapy Isn’t as Simple as it Seems
While those diagnosed with gynecologic cancer can benefit from seeing a physical therapist before starting treatment, Dr. Hill explained that gynecologic oncology programs are a little ways away from adopting prospective surveillance models, in which “people come into rehab … to get baseline measurements of their overall strength, their mobility, their balance.”
Accessing care is also made more challenging due to a lack of providers with a cancer specialty, said Dr. Sapienza. This is compounded with long waiting lists for those who practice within hospital systems and “private and/or outpatient facilities [that] may be out of network with insurance and have a higher cost,” she explained.
“Another barrier is a lack of awareness that these pelvic floor symptoms have the potential to be treated,” said Dr. Sapienza.
“Patients are not being referred for the care that they need. You as a patient have to be a huge advocate for yourself. It’s very common to have these symptoms post-treatment, but it doesn’t have to be normal.”
But Dr. Hill stressed that it is never too late to start. For those who may already be experiencing symptoms, “There are still things that we can typically do to either really address and minimize or resolve the symptoms,” she said.
How to Find the Right Physical Therapist for You
Start by asking your oncology team for referrals before going online to find a specialized oncology and pelvic floor physical therapist in your area, recommended Dr. Hill. You can also consider adding two specialists to your team: one who is focused on oncology and another for pelvic floor treatment, she suggested.
Once you have found someone, treat it like an interview, said Dr. Hill.
Dr. Sapienza suggested asking questions like:
- Have they treated other individuals with a similar type of cancer treatment regimen?
- What happens during the initial evaluation?
- What are some complementary treatments that may assist in my healing journey?
- Do they communicate with my doctors?
Understanding how your physical therapist could work with your medical team is a way to combat what Dr. Hill called “the survivorship cliff.”
She explained that this can happen when a patient’s check-ins with their oncology team become more infrequent. A physical therapist—particularly one specialized in cancer—can then become a resource to help patients to understand their new normal or when something might require additional medical intervention.
What to Expect at Your First Pelvic Physical Therapy Visit
Whether you are beginning pelvic floor therapy immediately following a diagnosis or after the onset of symptoms, Dr. Hill explained that the first visit is about the provider and patient getting to know one another, clarifying your medical history and symptoms, and deciding on goals of care.
Sometimes, Dr. Hill said, these conversations can become intimate or uncomfortable, including discussing sexual preferences, such as positions or toys. She and Dr. Sapienza emphasized the importance of developing an open, communicative, and shame-free relationship with your provider is to ensure that you are receiving the care you need to fully address your concerns.
“The majority of pelvic therapists will say, ‘We're going to be talking about some uncomfortable things, if there's anything that you don't feel comfortable sharing, don't feel like you need to, but the more that you tell me, the more I can help you,’” she said.
“We embrace the uncomfortable in pelvic PT.”
It is only afterwards that you might move onto a pelvic exam to assess factors that could be contributing to symptoms, like muscle strength, coordination, or scar tissue.
The pelvic exam, Dr. Hill said, is important even for those for whom penetrative sex isn’t a priority because as gynecologic cancer survivors, pelvic exams will often be required as a part of follow-up care. “I always tell people, even if you're not sexually active, if your provider recommends you to use dilators, use the dilators.”
After all, Dr. Hill said, “That’s why so many physical therapists are so passionate about what we do, because we get you from rock bottom with your treatment and go with you on this journey to get you back to the best quality of life that you can have, regardless of your symptoms.”