Many women are experiencing severe and long-lasting side effects after getting a LEEP. So why isn’t the medical community listening?

Five months ago, I received a phone call from my OB-GYN informing me I had abnormal cells on my cervix and that a loop electrosurgical excision procedure (LEEP) would be necessary to remove the cells and prevent cervical cancer.

I had gone in for a regular Pap, like I do every year, and was told that I needed a biopsy. When my results came back, my doctor told me they would need to use a low-voltage electrical current — a LEEP — to remove the abnormal cells from my cervix.

The term “abnormal cells” originally shook me. I assumed these cells would eventually turn into cervical cancer, so I agreed to what I thought was a harmless and necessary procedure.

After the procedure was performed I began experiencing complicated symptoms — an infection, weakness, and pelvic pain — all of which challenged my recovery time.

I also became depressed. I felt an overwhelming numbness — not in my body, but in my mood and livelihood. Some days I struggled to even get out of bed.

Concerned, I Googled my symptoms and discovered several forums and personal blog posts where women detailed a variety of complications. On the other hand, more detailed medical information was hard to find.

I continued digging and was shocked to learn that many “abnormal cells” may never lead to cancer. Instead, these so-called “abnormal” cells are similar to moles on your body and having them removed isn’t always necessary.

Cervical cancer is relatively rare, compared to other cancers. Approximately 0.6 percent of people will be diagnosed with cervical cancer in their lifetime.

I began reaching out to other women who were experiencing similar symptoms to my own following a LEEP and I discovered many others who had been affected in different ways.

I spoke with Sarah, a woman from the U.K. who underwent the procedure in 2010. She said she knew something was wrong when she stopped feeling any sense of sexual arousal.

“It wasn’t like crap sex, or that I wasn’t into the guy. It was like something had been removed surgically from my body. It was so frightening. I can’t even begin to say how it affected me sexually,” she explained, adding that her ability to experience an orgasm was also greatly diminished following the LEEP. “I had lost my entire sense of sexual identity and connection to my body. I was in a really terrible place. I couldn’t even cry. I was so numb.”

Sarah also experienced a loss of sensation in her labia and overall vagina, which culminated in her loss of feeling during an orgasm, which she believes is a direct result of the surgery.

Sarah’s story deeply resonated with me. While I’d never had issues with intercourse or having an orgasm after my LEEP, I too felt a disconnect from my body and emotions.

However, many women — myself included — don’t initially attribute such side effects to the procedure.

Kate, who had a LEEP thirteen years ago and now resides in Switzerland, recounted her first time having sex after the LEEP. “It was like an orgasm. I could feel the muscle moving, but it was so odd. It was like it couldn’t connect to feeling anything for pleasure. Everything felt really weak. After that, sex was always painful.”

After the LEEP, Kate also had difficulty simply sitting up. “It felt like my stomach muscles couldn’t hold myself up,” she said. “It hurt to sit down and it’s still hard to sit for long periods [of time].”

In addition to the physical pain, Kate found she was experiencing a loss of creativity, too. She described feeling as if a part of herself had been completely severed.

As an artist, I also struggled with creativity immediately following the procedure. Bedridden, I wrote an emotional article about abnormal cells for a major platform just a day after my LEEP. My editor, doing her job, cut into my writing. I found myself incredibly distressed and overwhelmed at the end of her email. I took off from work and retreated under the covers.

Dr. Irwin Goldstein, MD, the director of San Diego Sexual Medicine, has been researching sexual dysfunction since the 1970s and has authored more than 325 publications. He’s also the editor-in-chief of The Journal of Sexual Medicine and helped develop Viagra in the 1990s.

He’s one of the few doctors conducting research on LEEP and how it affects women.

I spoke with him and he explained to me that the “cervix brain connection is severed [during a LEEP], and that results in the inability to transfer critical sensory afferent information from the cervix to the critical brain areas.”

When I asked Dr. Goldstein whether the LEEP’s side effects are caused from this loss of connection, sexual numbness, or both, he explained that yes, it’s indeed both. It’s “now interpreted as numbness or anhedonia,” which is a psychological condition where a person can’t experience pleasure in things that are typically found pleasurable.

The cervix has three pairs of nerves and each nerve goes to the left and right side of the brain. “The cervix is a sexual organ among other things, and during the LEEP, you chop out a good part of it where all of the nerves are,” Dr. Goldstein explained. He also noted that during a LEEP, these nerves run the risk of being tampered with or being completely removed from any connection to the brain.

Dr. Goldstein and his team are currently working with cadavers to look at the nerves in the cervix and how damage can be avoided.

Barry Komisaruk, PhD, from Rutgers University explained that the “cervix receives sensory input from three different pairs of nerves,” — pelvic, hypogastric, and vagus — “and I don’t know of any other organ that does [that].”

This area in the cervical canal is where curettage is completed during a LEEP, possibly severing essential nerves. However, a quick Google search will incorrectly tell you that “the cervix has no nerve endings,” thanks to the misinformed Region of Peel.

When I asked Dr. Komisaruk why this information isn’t easily available he said, “That’s a long and sad story. The myth that the cervix does not have any sensation originated from the 1953 Kinsey Report.”

Sexual Behavior in the Human Female sparked a sexual revolution and brought Alfred Kinsey to fame as a pioneer in human sexuality. But all of this aside, the study inaccurately concluded that the cervix, “is the most completely insensitive part of the female genitalia anatomy.”

The researchers even contradict themselves with this conclusion because their study points to an opposite outcome. Numbers ranging as high as 84 percent of patients responded to an object that was larger than a probe when put in contact with the cervix.

“It got into the literature,” said Dr. Komisaruk. “Ask any woman who has had a Pap smear. Obviously, they feel it. This myth has been perpetuated by the Kinsey Report.”

Moreover, the cervix has the ability to cause an orgasm. This is both according to a study in 2011, led by Dr. Komisaruk, as well as personal accounts from women — many of us experience blended orgasms which include clitoral and cervical stimulation.

In Komisaruk’s study, researchers mapped regions of the sensory cortex that responded to clitoral, vaginal, and cervical stimulation. The cervical stimulation almost directly mirrored stimulation similar to the clitoris. The researchers stated that there’s an obvious overlap in the three genital regions.

While the cervix may not be as sensitive as the clitoris, it’s definitely not insensitive.

So, why is this myth perpetuated? Dr. Goldstein says the issue is that most healthcare providers don’t view the cervix as a sexual organ. Furthermore, he said that doctors don’t “discuss the sexual health consequences” with their patients. “There is an assault of women’s genitals going on now in medicine,” he added.

It’s no wonder many of us feel rejected by the medical system. Medical resources for women experiencing complications of a LEEP are rare. Yet, numerous forums on the internet are filled with questions from women seeking guidance and a cure for their severe depression and physical pain after the procedure.

Kate runs a rapidly growing Facebook group called Healing from a LEEP/LLETZ, which is filled with testimonials from women describing the side effects they experienced after the surgery.

She writes actively about LEEPs, interviews patients, and confronts medical professionals. “No one understands what it’s like to go through this. It affects your brain, it affects your creativity, it affects your way of thinking.”

It’s essential to note that while testimonials are important, the only way to solve this issue — and to make doctor’s pay attention — is to publish medical papers and case reviews.

Dr. Goldstein says, “You can write all of the article’s you want, but it won’t change a doctor’s perspective.”

He encourages women to reach out to him in order to build studies and data on the medical trauma of women’s sexual health. It’s imperative that professionals are made aware of the potential complications.

Trusting a medical professional to cut into my cervix altered me, too. It disrupted my relationships, my work, and my entire perception of life. Women need to know all the facts before they decide if a LEEP is the right choice for their health, as it appears to be causing long-lasting complications for women all over the globe.

As Sarah pointed out to me, “This isn’t depression. This is surgical. This is a major disconnection of the nervous system.”

#MedicalMeToo matters and it matters now.