After Rebecca Revely had her third child, she and her husband decided their family was complete. Many women she knew had their tubes tied as a form of permanent birth control, so in 2013 the now 38-year-old mother had tubal ligation surgery, expecting to be free of the side effects of hormonal birth control.
Almost immediately she knew something was wrong.
By the time she returned to the doctor for a checkup, her symptoms were getting worse.
“I was already saying, ‘Hey, what is going on with me? Something is not right,’” Revely of Ashland, Kentucky, told TODAY. “We had never heard anyone say anything adverse about having their tubes tied.”
Her belly bloated massively, her hair started thinning and sex with her husband hurt. Her doctor ran blood tests and conducted a physical exam but didn’t find anything concerning. That’s when Revely’s internet search uncovered post-tubal ligation syndrome (PTLS), a collection of symptoms that some women say they experience after having their tubes tied.
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What is post-tubal ligation syndrome?
Tubal ligation is where a doctor either clips, sews, cuts or removes fallopian tubes to stop the egg and sperm from meeting, preventing pregnancy. It’s one of the most popular forms of birth control worldwide, according to the American College of Obstetricians and Gynecologists (ACOG) and the Centers for Disease Control and Prevention (CDC) notes that 13% of women age 15 to 44 have had their tubes tied.
Doctors consider it to be a low-risk procedure and some say the two biggest side effects are regret and accidental pregnancy — it has a 0.5% failure rate according to the CDC.
Yet an unknown number of women claim to have problems afterward. Post-tubal ligation syndrome is a condition that is not widely understood in the medical community. According to a review of literature on the topic published in 1992, some women reported experiencing a variety of symptoms, including painful periods (cramps), prolonged bleeding during periods and mid-cycle bleeding. Despite tubal ligation being a common procedure worldwide, there's been no further research why some women experience debilitating side effects and others have no problems.
Earlier this year, dozens of women reported to TODAY they experienced additional symptoms like fatigue, migraines, nausea, depression, mood swings and loss of sex drive.
Some experts dispute the condition exists.
“There has been no known post-tubal ligation syndrome. There is no clinical definition of what post-tubal ligation syndrome is,” Dr. Donna Mazloomdoost, director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Pelvic Floor Disorders Network in Bethesda, Maryland, told TODAY.
“There is probably a subset of women who have a reaction of scar tissue and have a disruption,” Mazloomdoost explained.
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How common are tubal ligation reversals?
Like Revely, women who are impacted by PTLS struggle to find relief. Some believe that having their tubal ligation surgeries reversed may be the only cure for their unpleasant symptoms. However, a reversal surgery is not simple and is not recommended by doctors.
“The reversal itself is a much more difficult procedure,” Dr. Carolyn Givens, medical co-director at Pacific Fertility Center in San Francisco, and an ACOG fellow, told TODAY. “It is intended to be permanent.”
Givens said reversing a tubal ligation involves very fine sutures and can take about two to three hours. Sometimes it’s impossible to reverse it, because there might not be enough of a tube to reattach. Reversals are more successful when there is an adequate amount of healthy fallopian tube left. During the procedure, doctors will ultimately use small stitches to reattach the undamaged ends of the fallopian tubes to a woman's uterus.
In 2015, Revely sought to have her tubal ligation reversed. Neither her OB-GYN nor her physician had heard of PTLS. Other doctors quoted her a fee of about $20,000, since insurance does not routinely cover the procedure. Revely eventually traveled to an OB-GYN in Tennessee who performed the procedure for a reasonable price.
Immediately afterward, she noticed a positive change.
“It felt different,” she said. “Within a few short weeks my body started to behave itself. The pain with intimacy went away completely. My hair came in thicker. All the things seemed to be related.”
But then she became pregnant with her fourth child.
"Having a child wasn’t necessarily the goal but it was a happy byproduct," she said.
Another patient who says she's been suffering from PTLS has yet to undergo a reversal. Stacey Underwood has been bleeding vaginally for more than six months straight and experienced a blood clot, which her doctor believes is because the clip used to close off her tube is dislodged.
“When I (saw) the tubal reversal specialist he thought maybe that my hormones were off, which was the cause of my constant vaginal bleeding. He did a hormone panel test and absolutely everything came back normal, so there is no other reason for my symptoms,” the 36-year-old from Lexington, North Carolina told TODAY.
Underwood's reversal surgery is scheduled for sometime in August.
Dr. Charles Monteith who conducts tubal ligation reversals in his practice in Raleigh, North Carolina said he has seen some women who say they have PTLS, but he considers a tubal ligation reversal a “last resort.”
“Women need to be evaluated for other conditions,” he said. “If no other conditions can be identified … then thinking about reversal is something that might be helpful.”
Consent for permanent sterilization
The experts agree that when doctors discuss sterilization with their patients they need to stress it’s permanent and make sure patients clearly understand that. The women interviewed for this story also hope that doctors will disclose that there could be negative side effects to the procedure.
"It is the biggest regret of my life," Underwood said of her tubal ligation surgery, and she's still struggling to deal with its effects.