Up to 80% of sexually active people have been exposed to HPV at some point in their lives, according to Summer Dewdney, MD, a gynecologic oncologist at Rush University Medical Center. The virus is a slow-growing disease that can cause genital warts a couple months after exposure, or no symptoms at all, leading to cervical cancer if it remains undetected.

Preventative measures against cervical cancer include regular Pap smears, vaccinations, and practicing safe sex. But, for those with abnormal cells found during a Pap test, colposcopy, or biopsy, LEEP is often the most promising option.

An acronym for Loop Electrosurgical Excision Procedure, LEEP removes precancerous cells from the cervix. When one patient, Sarah* received abnormal Pap test and biopsy results related to HPV-caused cell abnormality, doctors suggested she undergo LEEP.

The procedure requires a thin wire loop that serves as a knife to remove any precancerous or cancerous cells found on the cervix. 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
  • 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, can sever nerves that are connected to the brain. The uterine cervix has nerves connected to the brain that can 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.”

Possible complications following LEEP include cervical stenoses and miscarriages. Cervical stenosis is the narrowing of the cervix, which can make getting pregnant difficult or cause problems with passage of fluids like menstruation.

Cervical stenoses after LEEP may occur in up to 19% of patients after conization procedures such as LEEP, according to a trial conducted by Smart Patients, which ended in 2018. Data from a study conducted by Obstetrics & Gynecology reports a 6% rate of cervical stenosis after loop electrosurgical excision procedure (LEEP). The discussion noted that both the volume of tissue removed and a history of previous LEEP are significant independent predictors of stenosis.

Data on the occurrence of miscarriage following the LEEP procedure is inconsistent. Per one study from 2015, in 116 women studied, an 18% increased risk of miscarriage was reported among those previously treated with LEEP. A different study cited a positive association with second trimester miscarriages

Official medical guidelines indicate second trimester miscarriages are the main risk group with LEEP. It's relevant to note that hospitals have only been keeping better records of various miscarriages in more recent years. Future data will more accurately reveal risk of miscarriage following LEEP.

One patient, Maria*, explains that she believes her LEEP is related to difficulty she has faced with getting pregnant. Maria has also had “several miscarriages.”

“I do blame my LEEP for my trouble getting pregnant,” said Maria. “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 the medical literature is old and needs to be revisited in newer studies, 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.