incontinence

Illustrations by Brittany England

Not long after her first son was born in 2005, Elizabeth began experiencing periodic incontinence, or involuntary urination.

The stress of always worrying if she’d leak took its toll, and Elizabeth became depressed and anxious, particularly about sex.

“I definitely limited sex,” said Elizabeth, 41. “I was always damp down there, and [I didn’t feel] sexy,” she told Healthline. “There were all these accommodations and obstacles. I would never be on top because of the risk of urinating on my husband, and I was very reluctant to have sober sex. It was easier to have a few drinks and have sex because I was less inhibited, and if I did leak, I could blame it on being buzzed.”

Elizabeth says she never had a gushing episode during sex, but the fear of leaking became an insidious worry.

“A lactation consultant had told me that I needed to urinate before and after sex to avoid a urinary tract infection. But then I’d think I was going to leak again, and I’d have to go one more time. Leading up to orgasm can mimic the need to go, and that inhibited me so much, because I knew I had problems holding in my urine,” Elizabeth recalled.

Elizabeth isn’t alone. The Mayo Clinic estimates nearly 20 million Americans have urinary incontinence, and of them, 85 percent are women.

It can affect every area of life, cause depression and anxiety, and severely curtail sexual freedom and enjoyment.

Though much more common than widely known, urinary incontinence isn’t something women have to live with. Elizabeth, Sheryl, and Devon are going public with their stories in order to give other women the power and courage to speak to their doctors and take their lives — and sexual confidence — back.

Millions of women needlessly suffer with coital incontinence

A 2017 review of several studies found that urinary incontinence affects 20 to 40 percent of adult women, with nearly half of cases going undiagnosed (and therefore untreated).

“Many women fail to report the condition to their doctors out of embarrassment or the mistaken belief that they are alone — or that incontinence is a natural part of aging,” said Daniel S. Elliott, MD, professor of urology and board-certified in female pelvic medicine and reconstructive surgery at the Mayo Clinic in Rochester, Minnesota.

According to a 2016 study that looked at the reasons why so many women have undiagnosed and untreated UI, only 55 percent of women reported discussing their incontinence with their healthcare provider. A miniscule 3 percent reported that their provider initiated the discussion.

Researchers recommended “systematic screening of women to overcome barriers to evaluation and treatment.”

Probably even less reported is coital incontinence, or leakage during sex. It’s estimated that it occurs in 24 to 66 percent of women with urinary incontinence.

And according to a 2004 study, nearly three-fourths of all women visiting a urology clinic for urinary incontinence or other lower urinary tract symptoms hadn’t been asked about their sexual well-being.

“Coital incontinence can happen for two different reasons and at two different times during intercourse,” Elliott explained.

“One type happens during penetration [of a penis or other object], which is usually due to stress urinary incontinence. A lot of women are familiar with this type: leaking while coughing, sneezing, laughing, or doing physical activity,” he said.

“The second and less common type happens during orgasm due to involuntary bladder spasms. This is similar to symptoms felt by women with overactive bladder, such as needing to urinate urgently and frequently.”

Elliott added that a lot of women will have combination problems — both stress incontinence and overactive bladder, referred to as mixed urinary incontinence. And that incontinence can also be related to pelvic organ prolapse.

“The condition is probably underestimated because people are so embarrassed to talk about it,” said Michael Kennelly, MD, professor of urology and gynecology and co-director of the Women’s Center for Pelvic Health at Carolinas Medical Center in Charlotte, North Carolina. “I treat many women with coital incontinence, but it’s rarely talked about.”

The embarrassment factor keeps women silent

Stress incontinence occurs when weak pelvic floor muscles let urine escape, which naturally happens as we age.

Aside from age, the three biggest risk factors for stress incontinence are childbirth, weight, and smoking.

Women may experience tissue or nerve damage during vaginal delivery, which weakens the muscles. Being overweight raises the risk because excess weight puts pressure on the abdominal and pelvic organs.

However, any sort of repeated stress on the pelvic floor can provoke the symptoms of stress incontinence. A chronic cough or a job that requires heavy lifting or squatting may contribute, according to Megan Schimpf, MD, a board-certified urogynecologist and associate professor at the University of Michigan.

Overactive bladder occurs because the bladder muscles contract involuntarily, even when the bladder isn’t full of urine. The contraction creates the urgent need to urinate.

Experts consulted by Healthline emphasize that any type of incontinence isn’t a normal part of aging, and treatments are available.

However, because of the embarrassment factor, most women deal with urinary incontinence in silence. This can have a significant impact on their sex life, as well as their overall mental health.

In a 2017 study of 113 continent and 243 incontinent women aged 30 to 70, researchers found that 53 percent of the incontinent women reported sexual abstinence (defined as more than six months without sexual activity).

The researchers concluded that women with urinary incontinence were more likely to be sexually abstinent and showed less sexual desire, sexual comfort, and sexual satisfaction than their continent counterparts. Though a small sampling, the results confirm what Kennelly and Schimpf report anecdotally.

“I have a 42-year-old patient who hasn’t had sexual activity in a year and a half because of leakage. She’s afraid, because she doesn’t know if she’ll leak during sex and her husband will smell the urine,” Kennelly shared.

“Sexuality is a big part of life, and women need to feel comfortable. If they aren’t getting answers from their current health providers, they shouldn’t settle. There are providers out there who will work with them to eliminate incontinence and improve their overall quality of life,” he said.

One of the reasons women often endure in silence is the lack of information available, particularly as it relates to mental health.

Scientific studies are few and far between, are often done in countries other than the United States, and generally only look at a specific demographic or use a small sampling.

This has made it difficult to get an authoritative overview of urinary incontinence. One 2015 study of nearly 2,000 women aged 65 and over (25.4 percent of whom had urinary incontinence) found that the risk of stress was 2 times higher — and for depression, 1.5 times higher — among those with urinary incontinence.

The study concluded that “health-related quality of life in older women with urinary incontinence was relatively low, while levels of stress and depression were high.”

In a 2017 study among nearly 7,500 women aged 19 and up, 1.41 percent had peptic ulcers, but among women with urinary incontinence, 3.5 percent had them. Only 1.4 percent of women without urinary incontinence had peptic ulcers.

Common treatments

There are numerous treatments available to treat both stress incontinence and overactive bladder, which may be used solo or in combination. For both conditions, the Mayo Clinic recommends behavior therapies (such as losing weight and bladder training) and pelvic floor muscle exercises, known as Kegels, with instruction by a doctor or physical therapist who specializes in the pelvic floor. Medications may also be used to treat both conditions.

Elizabeth’s husband, whom she’s been with since they were both 16, was completely supportive. He told her not to worry and relax, but she couldn’t. Finally, after the birth of her third child, she talked to her OB-GYN, who referred her to a urogynecologist. This is a doctor who specializes in the care of women with pelvic floor disorders and has training in both gynecology and urology.

After physical therapy didn’t work, Elizabeth opted for surgery in 2010, and had a mesh sling implanted. She went in for the procedure at 7 a.m. and was home before lunch.

She says surgery was immediately 100 percent effective. She could run, jump, lift heavy objects, and have sex without leaking a drop. Elizabeth says she was given a second chance and can once again have fun without physical limitations.

“There has been a slow but steady increase in our sexual compatibility. It took a few months to get my confidence back, until I started realizing I could be carefree, but then there was this wonderful exploration,” Elizabeth said. “This is the happiest I’ve ever been with myself as a woman, and my husband and I are having the best sex of our lives.”

Additional treatments for stress urinary incontinence include a vaginal pessary. This is a small device inserted by a medical professional to support the bladder and prevent leakage. Another option is urethral inserts. This is a disposable device akin to a tampon inserted into the urethra to prevent leakage during times of heavy activity.

Surgery is usually the last option. The most common procedure performed for stress incontinence in women is placing a sling under the urethra. The sling can be made from the patient’s own tissue, animal or donor tissue (pubovaginal sling), or a synthetic mesh material. It’s an outpatient procedure.

However, in 2008, the U.S. Food and Drug Administration (FDA) issued a public health notification regarding serious complications associated with the use of synthetic mesh. This followed reports of complications — infection, pain, urinary problems, and recurrence of incontinence — from nine different device manufacturers.

In 2011, the FDA released an updated report on the safety and effectiveness of surgical mesh for pelvic organ prolapse. In January 2016, the FDA reclassified transvaginal mesh as a “high risk” device.

“The FDA warning was specific to the [pelvic organ prolapse] meshes. However, the slings are made out of the identical mesh of the prolapses, so if you have problems with one, you have problems with the other. Patients need to be aware that there are mesh complications — they are less common with the slings — but they are still not zero risks associated with them,” Elliott said.

There are no comprehensive studies on patient satisfaction with the surgery. However, a 2014 study did look at patient satisfaction of 565 women who had midurethral sling surgery to treat stress incontinence. The patient satisfaction rates were 85.9 percent in the retropubic (pubovaginal) group and 90 percent in the transobturator (synthetic mesh) group.

The study reported they were either “mostly” or “completely” satisfied with regard to urine leakage. Subjectively assessed success rates (symptoms were significantly improved and patients were mainly pleased with surgery outcomes) were 62.2 percent and 55.8 percent, respectively. More than 95 percent of participants in both sling groups said they’d have the surgery again or recommend it to a family member or friend.

Elliott says that there are complications with both types of slings, including failure. He lists the following as possible complications of the mesh sling:

  • scarring
  • vaginal pain
  • pain with intercourse
  • vaginal mesh exposure
  • vaginal mesh erosion into the urethra or bladder
  • infection from the mesh

With pubovaginal, Elliott explains that there are more potential risks at the time of surgery, including a longer recovery time, but over the long term, patients don’t have issues of sexual pain and scarring. This is because it’s the woman’s own tissue. It just reabsorbs into her body.

“I think a woman has to be fully informed of all complications that are known, regardless of the frequency. That’s exactly what the FDA warning was talking about,” Elliott said.

Elliott stresses that women need to question their surgeon thoroughly. What’s important is for the patient to know how experienced their surgeon is: How many procedures has the surgeon performed, and how closely do they follow up with patients? The latter influences the accuracy of data.

“Many big institutions, such as the Mayo Clinic, follow their patient’s results, so I can tell a patient this is how many I’ve done and these are my results, because I follow them. A lot of times in the community, doctors don’t do very many, they weren’t trained by an expert, and they don’t follow results. So, they will quote the studies done by experts, and extrapolate that to themselves. The patient needs to be aware that surgeon experience is incredibly important. This is important for all surgeries, but with slings, there is so much more art to it, where you put the sling, how much tension to put on it, and where you do the dissection. So, it’s important,” Elliott explained.

Surgery isn’t effective for treating the bladder spasm that causes overactive bladder, which leads to incontinence during orgasm. In addition to treatments already mentioned, the Mayo Clinic lists Botox injected directly into the bladder, nerve stimulation, and in severe cases, surgery to either increase bladder capacity or to remove the bladder completely as other treatment options.

Exploring alternatives

Sheryl experienced incontinence as a child, due to trauma. It cleared up when she was a teenager, only to return after she underwent a hysterectomy at the age of 37.

“Sex became painful, and my incontinence came back,” Sheryl said. “Vaginal muscle atrophy caused pain and discomfort during intercourse, along with urgency and frequent urination, especially right afterward. It made me want to avoid intercourse at times.”

The 54-year-old felt embarrassed and was in denial. She had to urinate about every hour for two days after intercourse, but says she didn’t want to see the evidence that intercourse and frequent urination were related. About five years ago, the symptoms became so bad that she finally confided in her doctor.

“When my current gynecologist informed me that it actually was a thing, I was relieved and felt validated to some extent,” said Sheryl, whose doctor recommended a laser treatment to alleviate various symptoms, including the urgency to urinate after sex.

Sheryl’s doctor explained that the bladder is getting pushed around and slightly traumatized because of the other issues. Rather than undergo the expensive treatment, Sheryl has opted for a more natural remedy: pelvic floor exercise.

“As a Pilates instructor, I know that pelvic floor muscle strength is very important for leakage postpartum or postsurgery, because the bladder sits right on the pelvic floor,” Sheryl said.

Not only has Sheryl been able to alleviate some of the urgent need to urinate right after sex, but she and her husband of 23 years have discovered that with lots of foreplay, the pain problem is reduced due to improved natural lubrication.

“Our sex life is much better now that he focuses more on my pleasure before intercourse,” Sheryl said.

Regaining strength and confidence with physical therapy

Devon was playing with her three children one day in 2015 when she felt dampness in her underwear.

“It felt like I was starting my period, but since I had a hysterectomy three months earlier, I knew that couldn’t be it,” Devon, 36, said. “So I went to the bathroom and saw that I had a wet spot. It was only a little bit of urine, but enough that I knew it wasn’t normal.”

Her leakages increased over time, so Devon started wearing panty liners more often. She says it’s difficult for her to pinpoint exactly when the incontinence began affecting her sex life: She was having other issues, including pain, related to her hysterectomy. Less than a year after that surgery, Devon had a mesh sling implanted to fix her prolapsed bladder.

“Everything kind of worked together to affect sex,” Devon explained. “It wasn’t every time, but it was often enough. I would urinate a little during penetration, but it didn’t feel so much like urinating as just a release. I don’t think my husband ever noticed, he never said anything. I just knew I was more lubricated than usual.”

Because of the pain and incontinence, Devon avoided sex. She didn’t say anything to anyone for a while because, after two surgeries in one year, she felt overwhelmed. She assumed both issues would go away on their own. They didn’t.

In November 2017, Devon and her doctor decided that the best course of treatment would be pelvic floor therapy to strengthen the muscles that support the bladder. Her doctor explained that the techniques include muscle strength tests (internal and external), deep breathing, yoga stretches, and biofeedback. But beyond that, Devon didn’t know what to expect. Devon now describes her physical therapist — one of the only female pelvic floor therapists in her area — as wonderful.

“For the first 20 minutes or so, we talked about everything I was experiencing and feeling. Then, I would lie down on the examining table in her office, no pants or underpants of course, and she would use a gloved and lubricated finger to find trigger points of pain inside of me,” Devon explained.

“She would rub them and put pressure on them until they went away, which usually caused a warm sensation. That’s how I knew they were going away. My PT explained to me that these trigger points were causing the tension and tightness inside my pelvis, and that is why I was leaking. My bladder was not ever fully emptying, because everything was so tight and constricted,” she said.

After her second session, Devon noticed a difference in her ability to empty her bladder properly and thoroughly. She could also go for longer stretches without having to urinate. She’s now completed eight sessions and only plans to go back for more if her symptoms return.

“I’ve had had sex twice since PT, and the urinating hasn’t happened,” said Devon. “But I’m still very gun-shy about jumping right in, because I don’t want it to hurt again, I don’t want to have incontinence again, and I don’t want to go back to PT. I’m still trying to work out the mental piece of all of it.”

Breaking the silence

Incontinence, particularly coital incontinence, may very well be the last taboo in women’s health. Though experienced by millions of women, it’s rarely been spoken about publicly. However, Elizabeth, Sheryl, and Devon represent a new generation of women who are speaking out in hopes of empowering others.

One of those women is Chelsea Allison, 30, who has experienced bladder leakage. She was struck by the scope of the problem and how invisible and stigmatized it remains. In December 2017, she founded the website Juno, a startup focused on destigmatizing urinary incontinence.

“There is a natural tendency for women to wonder, ‘Is this normal?’ when something new happens with their bodies. Or, worse, assume that it isn't normal, that they aren't normal,” said Allison. “So, bladder leakage becomes much more than a little dampness. Women feel betrayed by their bodies, ashamed, and afraid. I’ve had women tell me they’ve chosen celibacy over risking a leak during intimacy.”

Juno offers educational resources and support through a private community. Their online magazine covers urinary incontinence and is developing content specific to coital incontinence — including a recently published essay on returning to sex after physical floor therapy.

“It’s not something we have to suffer in silence,” Allison said. “There are treatment options for women’s physical needs and support for their emotional ones.”