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The medical epidemic few women have been willing to talk about – until now

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When Carmel Price’s mother had an operation six years ago, Price helped her in the hospital but never really knew what the procedure was for. “I heard that she was having ‘reconstructive surgery,’ like that her organs had moved around and they were putting them back where they belonged,” said Price, a university professor.

Then Price had two babies of her own and suddenly she understood – and unlike many women in the past, she is talking about it.

“My bladder was bulging outside of my body, and if I was on my feet for any significant length of time, like if I was giving a three-hour lecture, or running or jumping, it would fall out even further.” Her mother confirmed that it was the same thing she’d had.

Pelvic organ prolapse – when a woman’s bladder, uterus, or rectum falls down through the vaginal canal – affects millions of women in America, and becomes more likely the older they get. The average age women start to notice pelvic floor disorders, which include prolapse as well as urinary and fecal incontinence, is 56; by 80, half of all women have one or more symptoms. One in 10 end up in surgery.

And yet for years, few women talked about it. Gynaecologists often do not notice it in routine exams, and many women have lived with the condition for years or even decades without realising anything could be done.

“This is a stigmatised condition,” said John DeLancey, a Univeristy of Michigan professor of gynecology and urology. “It’s nothing people would talk about in polite company … And because nobody talks about it, everyone thinks they’re the only one.”

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Recently, however, the conversation has opened up ever so slightly. Last month the actress Kate Winslet spoke publicly about her urinary incontinence since having babies. The FDA recently approved several versions of a pelvic floor muscle trainer, which provide feedback via a smartphone app. And new internal devices for incontinence and prolapse, which advocates say work better than earlier versions, are just hitting the market.

“There has definitely been a sea change starting this calendar year,” said Missy Lavender, executive director of the Women’s Health Foundation, which does education and advocacy on the issue. “We suddenly have people looking at women’s pelvic health, going, ‘Why don’t we do more?'”

References to pelvic organ prolapse appear in Egyptian hieroglyphics, Medieval woodcuts, and the Bible (which says it is a sign a wife has been unfaithful). Treatments throughout the ages included fumigating the lower abdomen with herbs; tying a woman upside-down to a ladder and shaking it; or menacing the wayward organ with a hot poker to frighten it into place.

In reality, pelvic floor prolapse is similar to a hernia where the organs and vaginal walls are pushed out through an opening in the muscles of the pelvic floor. The condition is most common among women who have given birth; in 10-15 per cent of vaginal deliveries, the attachment of the muscles to the side walls tears, weakening the ability of the muscles to support the organs. Most women have no idea there is a problem until years later, when the muscles weaken with age and are no longer able to hold the organs in place.

“It’s not painful so much as uncomfortable,” DeLancey said. “They feel this intense pressure. Often they say they have a backache.”

Pelvic floor problems run in families. Other risk factors include obesity, routine heavy lifting, older maternal age at first birth, and the use of forceps during delivery.

Treatments include the use of a pessary, an internal support device that women can insert to hold the organs in place, or surgery using the patient’s own tissue or a mesh to lift and repair the fallen organs.

There are 320,000 surgeries a year for pelvic floor disorder, 200,000 of which are for prolapse. For less advanced cases, physical therapy can help reduce symptoms.

Left untreated, the prolapse can grow to the size of a grapefruit or larger, and it can become painful if the organs pull on the ligaments. It can become dangerous if the prolapse causes blockage in the tubes that attach kidney to bladder, And it can put women at risk of reduced activity and social isolation.

“Urinary incontinence is one of the top reasons people end up in nursing homes – people don’t want to deal with the smell,” said Cheryl Iglesia, director of MedStar Washington Hospital Center’s Section of Female Pelvic Medicine.

In the US, more pads are sold for incontinence than menstruation, Iglesia said. “It is a problem because we don’t have enough trained experts [in pelvic floor issues] to handle the aging population.”

Even when it is not dangerous, it erodes enjoyment of life. Women stop exercising because physical activity tends to worsen the condition – especially running or jumping, or activities involving weights, sit-ups or squats. Some avoid intimacy, fearing that prolapse or incontinence will repel their partners.

But even when women do speak up, they can hit a gender bias.

“My ob-gyn said, ‘Oh, your body just changes after having a baby’ and it’s just life,” said Price, 38, who since her diagnosis has shifted her research to study the issue. “It felt really dismissive. It made it seem like my surgery was elective, as if I was having cosmetic surgery. In other words, if I was willing to be sedentary and just live with it, it wasn’t necessary.””

Washington Post

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Henry Sapiecha

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