After an abnormal Pap test result, Sarah* had a biopsy, which found more serious abnormal cells stemming from HPV. As treatment, doctors suggested she have a LEEP, or a Loop Electrosurgical Excision Procedure, to prevent cancerous cells from growing on the cervix.

The procedure requires a thin wire loop which serves as a knife to remove and prevent any cancerous cells from forming. Most online research says that the procedure is painless and fairly simple, leaving the patient with no severe complications or concerns. This has proven to be incredibly false for many people with a cervix far across the globe as patients have been coming forward to detail their painful experiences.

Common concerns include:

  • Miscarriages
  • Depression
  • Cervical stenosis
  • Lack of creativity
  • Chronic pelvic pain
  • Inability to have an orgasm.

According to a group of people in a grassroots Facebook group called Healing from LLETZ/LEEP, these concerns are debilitating and ignored by professionals.

Dr. Irwin Goldstein, a doctor in California, is seeking answers for patients suffering from low term effects. He, along with Dr. Barry R. Komisaruk, are some of the few medical professionals who are seeking out answers for those suffering from the consequences of a LEEP.

The procedure, though meant to do good for the cervix, actually severs nerves which are connected to the brain. The uterine cervix has three nerves connected to the brain that stimulate orgasm, desire and reward, and are pertinent to an individual’s sexual anatomy. And since the cervix is only 2.5 centimeters long, these nerves are right in the pathway of the procedure (which is sometimes repeated over a time period).

“Healthcare providers don’t view the cervix as a sexual organ,” explains Dr. Goldstein about the issues surrounding the LEEP and more broadly, believing women’s pain. “They don’t discuss the sexual health consequences.”

Dr. Goldstein explains that depression can occur after any surgery, but it can definitely happen after a LEEP due to our fight or flight response being disrupted during the tampering of the nerves.

Rachel Kazez, LCSW, therapist and founder of All Along, an organization that helps people understand mental health and find the right therapy, explains that anything with the “descriptor ‘invasive’ can be traumatic.” She continues that it’s “often something that removes our sense of autonomy and/or invades our boundaries. And ‘invasive’ implies boundary-breaking, extreme, out of control, or intrusive.”

Doctors simply aren’t listening to patients, especially regarding women’s health. Kazez says “OB/GYN’s should check in with patients about their emotional needs. Not only will it lead to a better patient experience emotionally, it can also affect the physical side of the operation.” She says, “For example, by reducing muscle tension to reduce pain, or increasing the likelihood that the patient will follow through on aftercare recommendations and health maintenance/prevention.”

Miscarriages are the only clear possible complication listed for LEEPs online and by a medical professional. However, the complication is listed as “rare” when in reality, these numbers are probably higher than we think but no concrete testing has been done.

Maria* explains that she’s had “several miscarriages” after finally have a baby last year.

“I do blame my LEEP for my trouble getting pregnant. They cut at a part of my genitalia — it’s essentially Female Genital Mutilation — and because of this, my family and I suffered emotionally and physically.”

Other women experience a complete absence of libido or any feeling whatsoever in their vagina, clitoris, and cervix. Others experience intense discomfort in the pelvic region, sex becomes impossible, sitting becomes an aching pain.

Kylie*, who had her procedure thirteen years ago, says that she starts to physically shake whenever she talks about her LEEP.

“I realized that it’s a sexual trauma,” she says, tearfully. “No one understands how this affects your brain, it affects your creativity, your thinking.”

Although this information still isn’t in the medical literature, and LEEPs are a reality for a generation where HPV is prevalent, change can begin on a grassroots level. People all over the world intend to continue to use online platforms as a megaphone in order to reach the patients who are confused and alienated in their experience, who think they are the only one, when in reality there are hundreds — even thousands — of us waiting to be heard.