Women Aren’t Being Warned About the Sexual Side Effects of The LEEP Procedure

Goodman, a 27-year-old from California, had some bleeding after her LEEP, which she’d been told to expect. “But I’d [also] experienced a total loss in sex drive,” she says. At first, she didn’t think it was related, but even as she physically healed, her sex drive didn’t come back.

“Then suddenly, in the middle of the night, I got a feeling,” she says. She got out of bed and googled “LEEP + sex drive” and found a well of stories about women reporting similar symptoms. “I panicked,” she says. She left several messages with her doctor but never heard back. “If I’d known the procedure would cause this, I never would have got it.”

The majority of women recover fully from the LEEP, safe in the knowledge that they have eradicated the cells that could potentially lead to cervical cancer within 10 years. Nearly three out of 1,000 women will have abnormal Pap tests in a year, a US population study from 2004 found, and 1.5 of them will have the two highest levels of dysplasia. The number of LEEP procedures carried out, however, is difficult to ascertain: The American College of Obstetricians and Gynecologists (ACOG), the Centers for Disease Control and Prevention, and the American Society for Colposcopy and Cervical Pathology—whose members are the doctors who perform the procedure—said they don’t have the data.

While the LEEP is routinely presented as “very safe,” some risks are acknowledged: Slightly heightened risk of premature labor, low birth weight, second-trimester miscarriage, and—in rare cases—a narrowing of the cervix which could obstruct menstruation and cause pelvic pain and possibly infertility. But increasingly, anecdotal evidence from Goodman and thousands of other people like her suggests that, for a small minority, there might be more to it.

The women I spoke to for this article, as well as numerous women and trans men who recounted their experiences online, tell a remarkably similar story. The LEEP was presented to them as a simple procedure with few risks, so they were shocked to experience sexual side effects that they had not been warned about. Then, when they report the sometimes devastating impact to their sex life—such as complete loss of libido, pain during intercourse, or sudden inability to orgasm—they were told by their doctors that it could not possibly be related to the LEEP. Often, they were dismissed entirely, and told their symptoms were due to something else, or all in their heads.

For a decade, Orson felt alone with her problems. “I would turn over in my sleep, thinking, ‘Is my body still here?’ I just didn’t feel connected to it,” she says. Her experience led her to set up a Facebook support group, “Healing from LEEP/LLETZ.” A year in, the group has over 700 members. “I set it up to support the women who feel like they’re going crazy, because everyone who’s had this procedure seem completely fine except for them,” she says. “They’re not getting any help from mainstream medicine.”

The official stance from most US doctors—and generally worldwide—is that there are no proven sexual side effects to the LEEP procedure; the commonly available medical literature from the likes of the ACOG, or from highly regarded hospitals, doesn’t even mention that it could be possible. But the idea that performing surgery on a women’s sexual organs may have unintended consequences is no longer as controversial as it used to be. The impact on sexual function from hysterectomy with full cervical removal is increasingly acknowledged following medical research, and the FDA recently issued a warning that so-called vaginal rejuvenation procedures can lead to, among other things, “pain during sexual intercourse.”

While it’s not the mainstream view, there are doctors who have seen enough patients to be convinced that interfering with the cervix via the LEEP procedure can affect sexual function. “There is a fundamental view that is missing. The vagina, the cervix, the anterior vaginal wall [aka the G-spot], the clitoris, the labia, the hymen—these are sexual things. It’s unfathomable to think that you could operate in that region and somehow manage to avoid side effects to sexual functions,” says Irwin Goldstein, director of sexual medicine at Alvarado Hospital and clinical professor of surgery at the University of California at San Diego.

At its core, the issue stems from a fundamental difference in how the medical community views male and female sexuality. Goldstein compares it to prostate surgery in men, which typically comes with a conversation about sex: “You might do a radical prostatectomy for prostate cancer. [The possible consequence on sexual function] is within the consent form—it’s the standard of care. It is fully discussed.” Men’s sexuality tends to be taken seriously in a way that women’s simply isn’t, says Goldstein, whose pioneering work in sexual medicine was instrumental in developing Viagra as well as its female version, Addyi. “It’s a huge loss when someone’s sexual pleasure, their quality of life, is taken away from them without appropriate communication from the doctor.”

There is a mass of research conducted on best practices for screening and treating abnormal cervical cells with the aim of reducing pregnancy-related side effects, but there’s little consideration of how the LEEP may impact sexuality. There are a few smaller studies that focus on the subject, such as a 2010 paper from Chiang Mai University in Thailand which found that the LEEP is associated with “small but statistically significant decreases in overall sexual satisfaction, vaginal elasticity, and orgasmic satisfaction.” In 2016, researchers from the University of California published a review in the American Journal of Obstetrics & Gynecology that reviewed six papers published on the subject between 1982 and 2010. The authors concluded that “sexual function and sexual relationships” are indeed impacted after treatment of abnormal cells. “More in-depth research is needed to better understand the effects of different treatment modalities on women's sexual health and relationships during and following treatment,” they wrote.

One possible explanation as to why the sexual aspect of operating on the cervix has been largely ignored goes back to the influential Kinsey Reports. Written in 1953, Sexual Behavior in the Human Female claimed that the cervix has no sensation, a conclusion that was arguably at odds even with Kinsey’s own findings. While it has since been largely disproven, it’s still a commonly held belief among doctors; LEEP patients are often told that the cervix has few, if any, nerve endings. Barry Komisaruk, a behavioral neuroscientist and distinguished professor of psychology at Rutgers University, has conducted research showing not only that the cervix is flush with nerves, but that, for some women, the organ is primarily responsible for orgasm.

More from VICE:

”The cervix is remarkable in that it has three different pairs of nerves that carry sensation from it: the pelvic nerve, the hypogastric nerve, and the vagus nerve,” Komisaruk says. What’s more, Komisaruk has discovered that this third nerve, the vagus, carries sensation from the cervix directly to the brain, circumventing the spinal cord, as evidenced by his finding that women whose spinal cord is severed can still orgasm from cervical stimulation. “I don’t know of any other organ in the body that has three different sets of sensory nerves carrying sensation from it,” Komisaruk says. “The cervix must have a very important physiological role.”

Asked why a woman may lose her ability to orgasm after the LEEP, a procedure that doesn’t interfere with the clitoris or G-spot, Komisaruk says more study is needed to say with certainty. But the LEEP can sometimes require removing a more significant part of the cervix, and his and others’ research shows that all of these nerves are connected to overlapping regions in the brain. It’s known that if you amputate a hand, for example, this may cause degeneration of a sensory pathway going all the way up to the brain, he says. Likewise, it’s possible that interfering with the multiple nerve centers that make up the cervix affects the entire genital-sensory cortex in a similar manner. “By removing the sensory innervation of the cervix, you could have far-reaching effects on the sensory input coming from the other genital sensory regions. That might account for why some women have altered motivation or sensation,” Komisaruk says.

Cervical cancer used to be the leading cause of cancer death for women in the US, according to the CDC, but the numbers of women who get cervical cancer have fallen by 50 percent in the past 40 years, a change largely attributed to widespread testing. The official recommendation from ACOG is for women to undergo a Pap smear every three years depending on overall health and age, with the goal of detecting abnormalities before cancer can develop. Still, about 13,000 US women are diagnosed with cervical cancer every year, according to the American Society of Clinical Oncology, and about 4,000 of them will die from it.

While there are some doctors working on promising alternatives to the LEEP, some of which have run into funding hurdles and other challenges, there isn’t yet much else that practitioners can offer to women at risk of developing cervical cancer. Maria Kyrgiou, a clinical senior lecturer at Imperial College in London who has published research on the pregnancy-related risks of the LEEP, says that doctors are careful to offer the LEEP only to patients who really need it. “Because of the research showing the risk of premature labor, we are cautious about not overdoing it,” says Kyrgiou, who is also a gynecologic oncologist at the West London Gynaecological Cancer Center. “We only treat women when we think they have a significant precancerous lesion.”

Kyrgiou is not unsympathetic to the anecdotal evidence of the LEEP’s sexual side effects, but stresses that doctors need to follow the medical research. “I’m not dismissing what these women are saying. These side effects have been brought up in some of the committees I’ve been part of,” she says, referring to the research that indicates a link between hysterectomy and sexual dysfunction. “We’ve discussed the lack of orgasm after procedures. But there's a danger that women are taking non-evidence-based discussions and making that part of their decision-making process about whether to have a treatment they clearly need.”

For many women suffering after the LEEP, the fact that they weren’t told about the potential side effects has caused them to lose trust in doctors—some even say they would never get a Pap smear again. But ignoring a lesion that merits a LEEP procedure carries a 50 to 70 percent risk of developing cancer, Kyrgiou says.

When Leigh Nadel, a 35-year-old from Georgia, had her LEEP three years ago, she was terrified of getting cancer, having watched her grandmother die from melanoma as a teen. “When I talked to my doctor on the phone, she made it sound really urgent. It sounded like, ‘If you don’t do this you're going to get cancer and die.’ They don’t tell you about the potential side effects. They don’t give proper informed consent at all,” Nadel says. Nadel developed an infection afterward, and even after her fever cleared, things weren’t right. “For several months after my surgery, I was in pain. It was constant—even as I was just sitting down and working,” she says. Unimpressed with her doctor’s response, she sought out specialists, but even when approaching gynecological surgeons, it took her six tries to find one who’d seen a case like hers before. After two months of intense treatments with antibacterials and steroids, Nadel is no longer in constant pain, but something seems to be amiss still as sex has never been the same. “My body anticipates discomfort and pain,” she says. Things have improved over time thanks to a massage technique that helps relax the cervical scar tissue. “Still, sex has to be taken slow, lots of foreplay, certain positions only. It's more limited now,” Nadel says. “Luckily, I have a partner who is very understanding.”

The risk of developing cancer means that many women would proceed with the LEEP procedure even if they were told about the full range of potential side effects, and several of the women Tonic spoke to stressed that they don’t want to sound flippant about cancer risk. While some campaigners are pushing for further research into alternatives to the procedure, many simply want the sexual side effects acknowledged. Women deserve to know about the risk, they argue, and be trusted with all the information so they can make an informed decision about their bodies.

Everybody I spoke to for this story said that not being taken seriously by their doctors when reporting post-LEEP side effects made the experience far worse. “[Before the procedure] my doctor actually said I didn’t have to do the LEEP if I didn’t want to,” says Nicole Lane, a 27-year-old from Illinois who had the procedure almost a year ago. Lane hasn’t had any physical sexual side effects, but life is very different: “It’s not even like a depression, it’s just like a complete emptiness and a numbness,” she says. “I’ve never felt like this in my whole life. I’ve always been such an energetic person.” When she went back three weeks after the procedure because she was still bleeding, Lane’s doctor suggested her discomfort was all in her head.

Goldstein, the sexual medicine scientist, explains that nerve damage from the LEEP could potentially feel like emotional numbness. Researchers are only just beginning to understand all the ways in which we experience sexuality, which is linked to several regions of the brain. While it’s not yet fully clear how it’s all connected, Goldstein explains how he has seen a number of women with anhedonia—the inability to feel pleasure—respond favourably to Addyi, the female version of Viagra which actually works more like an antidepressant by targeting the brain (as opposed to male Viagra which simply increases genital blood flow).

Kelly Ann, a 27-year-old from South Africa, has asked several doctors about the pain she’s been experiencing during intercourse since having the LEEP at age 20. “I have always been told it's because I'm too dry, or too anxious. Even when I say it's not that, they just do a Pap smear and say my results are fine.” But things have never been the same, and it extends beyond sex. “I have these random bouts of pain where it feels like my insides are falling out,” Ann says, “and I can’t do anything but wait for it to pass.”

A bright spot in all of this is that there should be far fewer LEEP procedures performed in the future, as young people can now be vaccinated against HPV, the virus that causes 70 percent of cervical cancers. In the meantime, researchers like Goldstein have found that Addyi and certain off-label medications, can be used to help patients who are experiencing loss of sexual function post-LEEP. Physiotherapy for vaginal scar tissue has also proven effective in studies.

For now, most women who are struggling with diminished sexual function post-LEEP are getting more support from internet forums than from the average doctor. As a cure is a long ways off, a good place to start would be more honest and open communication from medical professionals. “Fundamentally, this is about respecting that the woman is sexual,” Goldstein says, “[and] that operating on organs can have adverse effects—especially the cervix, specifically LEEP.” The key is to recognize the fact that sexual function is relevant to quality of life—for women as for men—even in the face of potential cancer.

Sign up for_ Coping,_ Tonic's weekly newsletter about anxiety, depression, and dealing with it all.