Post-tubal ligation syndrome: Women discuss side effects of getting 'tubes tied'

For some women, sterilization leads to all sorts of awful symptoms that they refer to as post-tubal ligation syndrome. Experts say more research is needed on the topic.

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/ Source: TODAY
By Meghan Holohan

When a woman decides she is done having children, there are many options to prevent a further pregnancy. One popular method, tubal sterilization, has left some women with serious and unexpected side effects that puzzle doctors as well.

Tubal ligation surgery, often referred to as "tying your tubes," is a permanent method of birth control — and the most common form of it worldwide. For Stacey Underwood, it seemed practical after the birth of her fifth child. But her symptoms began immediately following the procedure.

“It is like my body went into shock,” Underwood, 36, from Lexington, North Carolina, told TODAY. “Something was completely weird within six to eight hours.”

Since undergoing a tubal ligation five years ago, Stacey Underwood has experienced numerous symptoms she attributes to the procedure. She hopes the experts pay more attention to post tubal ligation syndrome. Courtesy of Stacey Underwood

A week later, the chills and night sweats began. Worried, she called her doctor who recommended that Underwood visit the emergency room because they feared she had postpartum preeclampsia.

“They were like convulsing chills and I would wake up and my clothes would be drenched,” she explained.

Though the tests did not reveal any underlying problems, Underwood still felt sick.

“I remember sitting down and Googling my symptoms,” she said. “Post-tubal ligation syndrome came up.”

What is post-tubal ligation syndrome, and what are the symptoms?

For an upcoming series, TODAY asked women to share their stories about difficulties getting a health diagnosis. A surprising number of women told TODAY about complications after tubal ligation. The condition is referred to as post-tubal ligation syndrome in the medical community, although it's not widely understood. 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.

Women reported to TODAY they experienced additional symptoms like fatigue, migraines, nausea, depression, mood swings and loss of sex drive.

Some doctors speculate the lingering problems could be the result of hormone loss or other undiagnosed conditions.

“I never got my spring back,” Kristen Hoy, 35, of Clementon, New Jersey, told TODAY. “My first period … I literally fell to my knees and I had to go to the ER because I was bleeding through a tampon in an hour.”

Since then, Hoy has experienced crippling nausea, migraines and worsening moods.

“I just got noticeably more depressed,” she explained. “I couldn’t shake this tiredness.”

Hoy knew she did not want any more children after her third child and her doctors said sterilization worked the best. Yet she received little warning about the side effects.

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“They said ‘Your hormones will be fine. You won’t even notice,’” Hoy said. “It was complete havoc.”

Underwood and Hoy believe they are experiencing PTLS, yet struggle to get help.

“I feel so defeated. I would walk out of the office and cry. I would get nowhere,” Underwood said. She has been experiencing symptoms for the past five years and they have been worsening, including near-constant bleeding.

“For women to go through this and doctors not to listen, it feels heartbreaking," she said.

Understanding the confusion surrounding PTLS

According to the most recent statistics from the Centers for Disease Control and Prevention, over 13% of women ages 15-44 have undergone tubal sterilization. It is permanent, but not perfect. A very small percentage of women can become pregnant after it. Experts say that after accidental pregnancy, regret is the most common side effect.

“If you change your mind, it is difficult to reverse,” Dr. John Harris, assistant professor in the Department of Obstetrics, Gynecology and Reproductive Sciences at University of Pittsburgh School of Medicine, told TODAY.

According to the American College of Obstetricians and Gynecologists, in tubal sterilization, the fallopian tubes are removed or cut and tied with special thread, closed shut with bands or clips, sealed with an electric current or blocked with scar tissue formed by small implants. The goal of the surgery is to prevent the sperm from reaching an egg.

Tubal ligation should not impact how the ovaries work or change the amount of hormones a woman produces. But doctors admit there is not much research on the procedure — or, more specifically, what happens to women after tubal ligation.

In the late 1990s, the Centers for Disease Control and Prevention released the CREST study, which looked at failure rates of tubal ligation. In it, researchers also asked women about their periods.

“One of the things they did look at: Does tubal ligation cause abnormal menstruation?” said Dr. Charles Monteith, who has a practice specializing in tubal reversals in Raleigh, North Carolina. “The conclusion was it did not.”

But the study didn’t examine any of the other symptoms that women report after tubal ligation. In most cases, women ask for reversals because they want more children, Monteith said. But some experience symptoms that just don’t make sense and that has changed his thinking.

“I (used to) say that tubal ligation doesn’t cause problems,” he said. "I have since come to understand otherwise."

“These symptoms all have been reported and there is more or less evidence around them,” Harris said. “A minority of women may feel like their periods are different.”

Though, he noted that studies have not shown that tubal ligation impacts how women’s bodies function.

“We can’t find that there is a difference of how the ovary works,” Harris said. “There shouldn’t be a direct relationship between tubal ligation and sexual function. I totally believe that women are experiencing these symptoms. It is a little bit harder when you can’t say it is, ‘This one thing.’”

Gynecologist Dr. Christine Greves has also heard from patients who say their bodies have changed after tubal ligation.

When Greves, of the Center for Obstetrics and Gynecology at Orlando Health, counsels about family planning, she often talks about reversible methods, such as an intrauterine device. While she believes there’s little evidence of PTLS, she thinks some women experience symptoms afterward because they’re no longer relying on oral contraception.

“It is not that the tubal itself that causes this issues," said Greves. "It is the lack of hormones."

Monteith has noticed endometriosis on the fallopian tubes of some of his patients, that seemed to have occurred after the tubal ligation and he believes this relationship needs to be further explored.

For other women, he thinks that some lifestyle changes that occur after tubal ligation are causing symptoms.

“For most women, for most of their reproductive life, they are on some hormonal method to prevent pregnancy,” he said. “Taking hormonal birth control, being pregnant, breastfeeding, (and these) tend to decrease pelvic pain, periods.”

Post-tubal ligation syndrome treatment

There is no test for the syndrome. Symptoms begin weeks or months after the procedure, not years, said Monteith. Women experiencing side effects should have their hormones and thyroids tested, he suggested.

Non-surgical treatments like hormonal therapy, oral birth control, thyroid medication or pelvic floor physical therapy could reduce symptoms. But if nothing else helps, a reversal might offer relief, Monteith said.

"I consider tubal reversal a last resort," he said.

For women like Hoy and Underwood, though, years of stubborn symptoms have left them frustrated. They simply want doctors to take their pain seriously.

“I lost the trust,” Hoy said. “I wish that there would be more studies done on this procedure. Not everyone tolerates the outcome the same.”

If you have experienced PTLS and would like to share your story with TODAY, please fill out our questionnaire here.