Summer Niles, of Washington, underwent tubal ligation surgery when she was 23, after giving birth to two children. She soon noticed her periods were becoming heavier and more painful than before. She also developed insomnia and premenstrual dysphoric disorder. “A week before my period, every single month, it was like my world was falling apart,” she recalled recently.

When researching her symptoms online, Niles stumbled across a condition called post-tubal ligation syndrome (PTLS). The syndrome describes menstrual irregularities, including heavy bleeding, pelvic pain, and other symptoms that some women link to their tubal ligation surgery — a link researchers have yet to confirm.

But Niles is far from alone. While first described in the 1950s, PTLS has gained attention in recent years on social media and online forums, where women share their symptoms and raise awareness about the condition. Meanwhile, the condition is sensationalized on websites promoting religious-based natural family planning, or unproven treatments.

At the same time, experts are urging clinicians to acknowledge the symptoms despite the lack of solid data to support the association with tubal ligation.

“There have been varying definitions used for tubal sterilization syndrome. Some focus on pain, some bleeding, and some include mood changes,” said Kavita Arora, MD, a representative of the American College of Obstetricians and Gynecologists and director of the Division of General Obstetrics, Gynecology, and Midwifery at the UNC School of Medicine, Chapel Hill, North Carolina.

PTLS has been studied, though not recently. The largest study, published in 2000 in The New England Journal of Medicine, compared around 9500 women who underwent tubal sterilization with 573 women whose partners underwent vasectomy. Those who had tubal sterilization reported less menstrual pain and bleeding than those in the control group, a finding the researchers attributed to chance.

Other studies haven’t found consistent abnormalities in ovarian function or consistent differences in hormone levels between women who have undergone the procedure and those who have not.

Eve Espey, MD, a professor in the Department of Obstetrics and Gynecology at The University of New Mexico, Albuquerque, New Mexico, said much of the research on PTLS “is very old, from the 1980s and 1990s and is methodologically flawed.”

Still, she said, additional studies are unlikely to be helpful. A randomized, controlled trial to deter mine cause and effect would be unethical, so any new evidence would continue to be plagued by biases inherent to observational data. Plus, “millions of women have undergone sterilization, so if there were a really strong effect, we would likely know it,” she said.

Catherine Cansino, MD, a professor in the Department of Obstetrics and Gynecology at the University of California Davis, pointed out, however, that clear evidence supports post-ablation tubal sterilization syndrome (PATSS) — a painful complication that can occur in women who undergo endometrial ablation after tubal ligation. In PATSS, blood accumulates in the uterus and blocked fallopian tubes because scarring from the ablation blocks the blood from flowing out of the cervix. However, for women who have had a tubal ligation without endometrial ablation, menstrual blood is shed normally through the cervix.

Cansino said her patients haven’t mentioned PTLS, and she advises them that most women do not notice worsened symptoms after the surgery. “Tubal ligation is one of the most common forms of contraception i n the world and it’s such a small proportion that describe PTLS-like symptoms,” she said. About 700,000 tubal ligation procedures are performed each year in the US. Globally, 19% of married women have had a sterilization procedure.

Possible Causes of PTLS

Researchers have proposed several theories about what could lead to PTLS. These include the possibility that surgery may impair ovarian function by changing blood supply to the organs, or the clips or rings used to occlude the fallopian tubes cause irritation and inflammation.

Today, doctors most often remove the tubes altogether in a procedure called bilateral salpingectomy as this method stops pregnancy and significantly reduces the risk for ovarian cancer. Arora said she has heard many fewer complaints about PTLS-like symptoms from her patients in the past 5 years, which may be due to increased adoption of this approach.

Although Arora said surgery could lead to the array of symptoms described by PTLS, conditions such as “adenomyosis, endometriosis, chronic pelvic pain, menopause, or other sorts of vasomotor and hormonal changes through the life course of a woman” could be to blame. Those ailments also are poorly studied, she added.

Over the years, a handful of Espey’s patients have described symptoms they attribute to tubal ligation. “They say, ‘my periods are out of whack and I feel emotional and I’m having hot flashes.’” But she thinks it’s more likely their symptoms are caused by stopping hormonal birth control after the surgery or the procedure coincided with perimenopause. Espey stressed she believes women “are having some of the very bothersome symptoms they report.”

Reversal Surgery: An Expensive Option Not Backed by Evidence

Despite the unclear etiology, several reproductive clinics in the US offer reversal surgery as a treatment option for PTLS. These include the North Carolina Center for Reproductive Medicine, in Cary, North Carolina, which claims on its website that “approximately 37% of women may experience symptoms consistent with PTLS following tubal ligation,” without citing a source.

Women who claim to have benefited from reversal surgery are easy to find on social media. Earlier this year, Niles paid $7500 to undergo reversal surgery. Since then, both her premenstrual dysphoric disorder and insomnia have improved, she said.

While the evidence for PTLS is weak, evidence supporting reversal surgery as a cure is virtually nonexistent, outside of claims from clinics that perform the surgery. For instance, one clinic claims “over 90% of our patients who have tubal reversal as a treatment for tubal ligation symptoms will report improvement.”

Cansino said she worries women will undergo the expensive reversal surgeries, which come with risks such as infection, bleeding, and anesthesia reactions, and still may no t address their symptoms. Plus, for those who do not want more children, a reversal surgery means they must use another form of birth control, which may have side effects.

Rather than recommending reversal surgery, Cansino said she treats the most likely cause of the symptoms to see if they can be improved. For example, if the complaints and clinical history align with endometriosis, she prescribes hormone therapy or pain medicines, depending on the woman’s symptoms and preferences.

Arora said she follows the same approach. If less–invasive measures fail to improve symptoms, “we tend to move towards hysterectomy as a definitive option that we know will take care of the bleeding or uterine pain,” she said. But she acknowledged reversal surgery could be a reasonable option in rare cases, after a full explanation of the risks, benefits, and other available options.

Espey said she suspects the concerns about PTLS are representative of a wider phenomenon in women’s health. She was a co-author of a 2018 editorial that described the initial fanfare around contraceptive options, based on limited evidence, followed by a flurry of media reports of side effects, also based on limited evidence. “Contraceptives have real boom and bust cycles,” she said.

It's difficult for physicians to say there’s no evidence for PTLS because “It looks like we’re not listening to women even though we do have alternate explanations,” said Espey. “The best approach is to always take women’s symptoms seriously and do our best to determine causes and treatment options that work for each person.”