The last taboo in whispered-about women’s health topics, incontinence is still a “silent epidemic.”

By Elizabeth Kiefer
Feb 01, 2019 @ 3:30 pm
Alexis Jang

The first time Lily* thought something might be wrong was during college. She and her girlfriends often went out to the bars on Saturday nights in their small East Coast town, dancing and drinking. Afterward, they would hop on a public bus back to the dorms — and sometimes, Lily just couldn’t hold it. Buried in a photo album from those years, there’s a picture of her doubled over, laughing at the sheer ridiculousness of having peed her pants.

At first, Lily chalked her bladder issue up to the dumb stuff that happens when you’ve had one too many vodka sodas. But as time went on, the urge would arrive out of nowhere and she’d have to literally sprint to a bathroom. Lily’s job, in the medical technology industry, required her to be on the road a lot. Before getting in the car, she’d map out public restrooms where she could stop along the way, never knowing when she would need to pull off the parkway for an emergency pee.

The situation went from random and inconvenient to anxiety-inducing. She recalls, several years ago, being at a work function on a boat with 100 people and just one bathroom — a night that turned out to be the final straw. No one else noticed the urine trickling down her legs as she waited in line, but Lily was understandably mortified. Not long after that, she made an appointment with a urologist to talk about treatment options and was dismayed, though undeterred, by the doctor’s response: You’re very young to be having this problem.

At 30, Lily was young — and athletic, and healthy. She’d never been pregnant or suffered serious pelvic trauma. Nor did she fit the profile typically associated with incontinence symptoms. But, after switching doctors, she ultimately received a diagnosis of urge incontinence. “You see those commercials, you know, the ‘gotta go, gotta go, gotta go right now’ ones,” Lily says, referring to the Dexatrol LA medication ads that ran through the early-2000s. “It’s never women who look like me — they’re older. But that’s not always who it is.”

She’s right about that. One in four women over age 20 will experience at least one pelvic-floor disorder at some point in her lifetime, including urinary incontinence, fecal incontinence, and pelvic-floor prolapse, according to a 2013 study by the The American College of Obstetricians and Gynecologists. Dr. Marsha Guess, a Colorado-based urogynecologist, calls incontinence a silent epidemic, reflecting both the proportion of the population it impacts as well as the fact that sufferers are often too embarrassed to come forward about their symptoms. “Unless you had urinary tract infections as a kid, or some kind of neurological issue that brought you to a urologist, nobody really talks about this stuff,” adds Dr. Anika Ackerman, a urologist based in New Jersey.

In recent years, the taboo surrounding various women’s health topics has begun to abate, thanks to increased conversations about everything from breast pumping at work to infertility issues and period panties. Incontinence may be the last bastion of body-stigma — the one health conversation women aren’t having. But according to Guess and other experts, we’re overdue for a more open dialog about the “pee word,” too.

According to a survey conducted by the National Association for Continence, nearly two-thirds of women with incontinence symptoms have not discussed their concerns with a healthcare provider. On average, women wait 6.5 years between experiencing their first symptom and bringing the issue up with their doctor. Dr. Roger Goldberg, the director of urogynecology research at the University of Chicago North Shore University, cited on Parents.com, said: “Even a seemingly uneventful pregnancy and delivery can change urinary control for up to 50% of women.” That means half the moms in your life pee differently now than they did pre-kids, which is probably not something you’re talking about over cocktails.

So what is urinary incontinence? Put simply, it’s a loss of bladder control. There are two main types: The first, stress, is the most common, and it occurs when you put pressure on the bladder (while laughing, jumping, even running on the treadmill, for example). Stress incontinence is caused by laxity in the pelvic-floor muscles, and it's common among postpartum women as well as women of advanced age. It's the culprit behind that much-whispered-about pee-when-you-sneeze scenario. Urge incontinence, on the other hand, is the result of the bladder contracting when it shouldn’t — a.k.a. overactive bladder syndrome (or OAB). Then there’s mixed incontinence, which is a combination of the two.

The pelvic floor is a series of three layers of muscles. When functioning properly, they work in harmony with other muscle groups, such as your core, deep abdominals, and diaphragm. The vagina is what Guess calls a “supported structure” composed of three walls: the front (which supports the bladder), the top (which supports the uterus), and the back (which supports the rectum). Compromised pelvic-floor muscles can lead to incontinence, as well as organ prolapse (a more extreme result, when an organ slips out of place).

Treatment for urinary incontinence varies depending on the patient, from noninvasive interventions to oral medication to pelvic-floor therapy with a physical therapist to surgery (which includes the controversial transvaginal mesh you may have heard about). But it starts with recognizing the symptoms — and a willingness to bring them up with your doctor, which for many women is a not insignificant hurdle.

"Nobody wants to cross that line because of social stigmas."

Dr. Kathleen Connell is Dr. Guess’s colleague at the University of Colorado Hospital, and specializes in female pelvic medicine and reconstructive surgery. Speaking on the phone earlier this month, she and Guess said they often tell patients to invite friends over for dinner and, after some wine, broach the topic of incontinence. “Nobody wants to cross that line because of social stigmas,” says Connell, “but once you start talking about it, people really open up. They think it’s an elderly person’s problem. But so many young women are incontinent, too.”

While childbirth and pregnancy play a part in incontinence among younger women, it’s also prevalent among people who have never had kids. Dr. Erin Weber, a Brooklyn-based physical therapist who specializes in pelvic-floor rehabilitation, sees women who range in age from their 20s to their 70s, plenty of moms and non-moms among them.

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“Anyone who walks into a drugstore can see there are entire aisles dedicated to incontinence. Clearly, this is a problem for the masses, not just a few women,” she explains. But Weber worries that we’re conditioned to reach for products for symptoms instead of seeking out a solution for the root cause.

“People have said to me, ‘It’s just like, a normal amount of leaking after I run.’ They’re rationalizing that it’s normal to avoid addressing an issue,” Weber says. For new moms, she says it’s fine to have a little bit of leaking for up to three weeks after delivery. After that, she recommends seeing a physician or physical therapist to make sure those muscles are working correctly.

Behaviors and habits, some that might date back decades, can also play a role. “We learn as kids to void our bladders every time we leave the house, which can put us into this overactive bladder state,” she says. Ackerman, the urologist, adds that, frankly, some of us need to work on our pee posture. Sure, hovering can seem preferable to bodily contact with a questionable seat, but it also means that you’re clenching muscles that should be relaxed, which can lead to incomplete emptying of the bladder and even incontinence over time.

More transparency and education, say both Guess and Connell, are key, whether you’re a new mom, an older woman, or anywhere else on the spectrum. Rather than women working to bring up urinary issues when something is wrong, health professionals should create the opportunity for their patients to discuss this in a routine way.

“We can probably prevent a lot of incontinence by talking about it, and doing more preventative treatments with younger women,” says Connell. “These are symptoms that impact quality of life, that increase the risk of depression and social isolation, and decrease self esteem.” In other words: Nothing that women should have to just live with.

"It was not the sexy squirt."

At 37, Karen* cannot remember a time in her life when she didn’t experience any leakage; for decades, it was just something she dealt with. Bladder issues impacted her sex life with her husband — it didn’t matter if she’d gone to the bathroom seconds before hopping into bed, the second he touched her, she would leak.

“It was not the sexy squirt,” Karen says. “It was a gush. I actually bought waterproof bed pads because it would soak through a towel.” Her partner tried not to make her feel embarrassed, but the impact on their sex life was unavoidable. “Oral was completely off the table — I was too self-conscious — and it didn’t matter what he or anyone else said … the thought of not being able to control felt really unsexy.” Then, in 2018, while researching workshops on tantric orgasms, Karen came across a product that caught her attention: Yarlap, a device developed to help women strengthen and tone pelvic-floor muscles, which received a Women’s Health FemTech Award in 2018.

To use it, a woman inserts a tampon-sized wand into her vagina, which is attached to a small remote. Electrostimulation causes the muscles to contract, and, over time, get stronger. MaryEllen Reider, who co-founded the company with her father, Brent, a medical technology inventor, says that many women see a change in 12 weeks. Karen has been using it for about six months now and says that, for the first time in years, she is not constantly worried about proximity to a bathroom.

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In fact, Yarlap is among a wave of new tech tools aimed at improving women’s pelvic-floor health (some of which also tout the added bonus of better orgasms). Some, like Yarlap, are FDA cleared, can be purchased with or without HSA or flex funds, and were specifically created for bladder control. Others, like Elvie (which was part of the swag bag at the 2017 Oscars) aid in bladder control, postnatal recovery, and even enhanced orgasms. (Elvie can be purchased for $199 out of pocket.) There are other options, too. Matriac, a free app aimed at new moms, contains daily workouts for pelvic-floor strength. Others provide straightforward Kegel routines you can do at your desk.

When I asked Connell and Guess about digital programs and devices, they were encouraging, particularly for people who would not regularly be able to go to physical therapy. With patients in their practice, they start with noninvasive behavioral modifications like Kegels, avoiding irritants like caffeine and nicotine, and referring patients to physical therapy. (Weber, the physical therapist, explained that pelvic-floor therapy is less invasive than an OB/GYN exam, adding that pelvic-floor muscles can be accessed rectally or vaginally but there are various options available for someone uncomfortable with an internal exam.) In recent years, other new innovations, including nonsurgical options like lasers, have helped women regenerate vaginal muscles; another option is tibial nerve stimulation, in which a physician uses an acupuncture-like needle to stimulate the tibial nerve to treat overactive bladder syndrome (OAB).

If behavioral changes, physical therapy, or nerve stimulation don’t work, Connell and Guess might prescribe medication. These drugs typically help relax the bladder muscle, in cases of urge incontinence. But, as Ackerman explained, they often come with undesirable side effects like constipation, dry mouth, and, in older people, potential cognitive dysfunction.

As for surgery for those with stress incontinence, the “gold standard,” says Ackerman, is a sling, or a small piece of mesh that’s placed underneath the urethra to help support it. She notes that this surgery uses a smaller piece of mesh than what is used for organ prolapse repairs, and the ongoing transvaginal mesh controversy has mostly centered on the latter. A recent report in the Washington Post found that 3 to 4 million women worldwide have had mesh implants for incontinence or prolapse issues, and about 5 percent experienced complications. The paper goes on to explain that many such complications are permanent. “The urethral sling is still the standard of care and the FDA has reported that it is a safe and efficacious procedure for the treatment of stress and urinary incontinence,” Ackerman wrote in a follow-up email. Nevertheless, the treatment has been banned in several countries.

Botox is another option for those with urge incontinence or OAB. This entails small injections through the urethra. “Just like it relaxes the muscles in the face, it relaxes the muscles in the bladder,” says Ackerman. Another therapy she’s recently started exploring is The O-Shot: an injection of platelets that help regrowth of vaginal tissue around the G-spot — tissue which also helps support the area around the urethra. “People are thinking that might be the next wave of treatment for stress incontinence,” she says. More women in the field, and an increased interest in women's health overall, has led to an influx of new technology, Ackerman says. But, there is still a long way to go.

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As for Lily, a couple years ago, her medication for OAB stopped working. In a way, she was glad to get off it — the dry mouth it gave her was maddening. That’s when her Manhattan-based doctor suggested Botox. It’s not exactly painless (“I mean, it’s a shot in your bladder,” Lily says) but the whole thing is over in less than an hour. Most importantly: it helps. “I can drink a whole cup of tea in the morning and not stop on my way to work,” Lily says with a laugh. That’s progress.

Nighttime bladder issues are still a concern for her. On a bachelorette party trip with her girlfriends in the fall, she brought along pads, just in case. But she’s finally comfortable talking about it now, even with her girlfriends. And she urges other women to do the same. “Go to the doctor early, and have it checked out,” she says. If you do, you’ll find solutions are out there.

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*Names have been changed.