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Pelvic floor disorder affects 1 in 3 women: 5 things you need to know

Mom-to-be Kimberly Johnson carefully planned the home birth of her baby. But she wasn't prepared for the severe injuries that came with it.
/ Source: TODAY

Expectant mother Kimberly Johnson carefully planned the home birth of her daughter. But while the delivery went smoothly for the baby, Johnson, now 42, wasn’t prepared for the severe injuries that came with it.

A pelvic tear that didn’t heal properly and a uterine prolapse, where the top of her birth canal dropped lower into her vagina, left her physically and emotionally devastated. It was nine months before she was diagnosed with a pelvic floor disorder, and another six years before she felt completely healed.

“I was so relieved to finally get the help I needed,” said Johnson, a San Diego-based women’s health specialist and author of an upcoming book about her experience. “But I was also shocked to encounter this black hole in women’s health. There are so many changes that happen to a woman post-birth that no one is talking about.”

Kimberly Johnson
"There are so many changes that happen to a woman post-birth that no one is talking about," said Kimberly Johnson.Edica Pacha

Johnson’s case is extreme, but she’s certainly not alone. Research shows that about one in three American women experience what’s known as a pelvic floor disorder in their lifetime — a term refers to a range of conditions including:

  • urinary and fecal incontinence
  • constipation
  • pelvic organ prolapse
  • pain during intercourse and vaginal penetration

Although pelvic floor disorders aren’t new, experts say there's more talk about them, with celebrities like “Girls” star Zosia Mamet speaking openly about her condition, and pelvic floor trainers popping up everywhere from reality TV shows to swag bags at the Oscars.

With this awareness have come some serious misconceptions, doctors say. Pelvic floor disorder isn't normal and women shouldn't feel they have to suffer through it alone.

These are sensitive topics that can be difficult to broach with a doctor,” said Dr. Barbara Levy, vice president of Health Policy for the American Congress of Obstetricians and Gynecologists. “I want women to know that there is help available for them if they want it.”

With that in mind, here are five things you need to know about pelvic floor disorders:

1. The pelvic floor isn’t really a floor.

While its name implies a flat surface, the pelvic floor is actually a three-dimensional bowl-like network of muscles and connective tissue that extends between the hip bones, the pubic bone and the tail bone, Levy said.

Its function is to both hold in the pelvic organs, including the bladder, uterus, bowels and cervix, and let out bodily fluids and, during childbirth, a baby.

“I think these are the most important muscles in the female body,” said New York-based physical therapist Isa Herrera, who wrote “Ending Female Pain” and created the website PelvicPainRelief.com. “If you don’t have a good, functioning pelvic floor, you’re going to have repercussions throughout the female body.”

2. Kegels aren’t always the answer.

Most women have heard of the Kegel, a toning exercise that involves raising and tightening the pelvic floor, that everyone from OB-GYNs to Pilates instructors have called the path to pelvic floor health since the 1940s.

But while Kegels can help 60 to 70 percent of women with stress incontinence — meaning peeing a little when they cough, sneeze or jump — the exercise can make that dysfunction worse for the rest, said Rhonda Kotarinos, a Chicago-based physical therapist.

That’s because although most women are taught that these muscles are left weak and stretched out after childbirth, in many cases, they’re actually too high and tight, Kotarinos said. This can happen when the pelvic floor involuntarily over-contracts in response to a tear or excessive pushing during childbirth, or as the result of stress or sexual trauma.

Dr. Kimberly Kenton, director of the Women's Integrated Pelvic Health Program at Northwestern Medicine, said that for this reason, she never recommends strengthening exercises until women have had their pelvic floor muscles evaluated by a professional.

To assess the pelvic floor muscles’ strength and length and make sure that a woman can correctly do a Kegel, Kenton said she tells women to visualize trying to suck up a marble with their vagina as she does a two-finger internal pelvic exam. She then has them relax and allow the pelvic floor to stretch in equal measure to check its range of motion, and feels for tight bands or tenderness.

“I want to make sure that women are finding the muscles and doing the exercise right,” Kenton said, noting that it’s like a physical trainer watching a client do a squat or bicep curl, and correcting their form if necessary.

3. Moms aren’t the only ones affected.

Stress incontinence and prolapse are most common in women with kids, but after age 65, it doesn’t matter if you’ve had kids or not. "We’re all at equal risk for urinary incontinence,” said Kenton.

Post-menopausal women often develop urge incontinence, meaning there’s a misfire in the brain/bladder connection that causes the constant urge to urinate — and can result in the bladder involuntarily dumping its contents. Often with urge also comes frequency, which happens when someone pees too often for how much fluid they’re taking in.

Other risk factors that can contribute to pelvic floor disorders include obesity, smoking and genetics, although experts say they see plenty of young women, men and children who don’t have any risk factors and still develop pelvic floor disorders.

“Girls” star Zosia Mamet shared how she endured six years of pelvic pain before being diagnosed with and treated for pelvic floor dysfunction.

4.Treatments range from non-invasive to surgical.

If you’re experiencing signs of a pelvic floor disorder, see your doctor or OB-GYN.

Women with incontinence or prolapse may be referred to a urogynecologist specializing in female pelvic medicine and reproductive surgery.

Local providers can be found at the American Urogynecologic Society’s Voices for PFD.org website, said Dr. Amy Rosenman, director of urogynecology at UCLA Medical Center and a past president of the group.

After diagnosis, treatments include non-invasive options, like pelvic floor physical therapy or the use of a tampon-like insert for stress incontinence. A diaphragm-like pessary, which supports the pelvic organs and holds them up and in place, can also offer relief to women with prolapse.

There are also minimally invasive options to treat urge incontinence, like Botox injections in the bladder, as well as surgical options for many types of dysfunction, from 20-minute outpatient laparoscopic procedures to more involved surgeries.

5. The jade egg doesn’t work.

A variety of pelvic floor trainers, from a jade egg to an iPhone-synced device called the Elvie, have gotten a lot of attention recently.

The crystal egg, which is touted by celebrities like Gwyneth Paltrow and a star on “The Real Housewives of Atlanta,” can cause new problems or inflame old ones if it’s not used correctly, doctors say. So, save your money.

“Walking around with a jade egg in your vagina would be like trying to make your upper body stronger by carrying a 5-pound dumbbell around,” Kenton said. “It doesn’t work that way.”

On the other hand, the $199 Elvie — a sleek and modern mint-colored pelvic floor trainer, which was given to celebrities in the 2017 Oscars gift bag and uses an app-based game to incentivize pelvic floor strengthening — got a more positive response.

“Anything that helps patients stick with a training program is a good thing,” Rosenman said.

With more awareness of the pelvic floor, specialists hope women can get treatment for problems like urinary incontinence or painful intercourse sooner.

“It’s really about improving your quality of life,” Kenton said.