(Article from The New York Times)

The organ is “completely ignored by pretty much everyone,” medical experts say, and that omission can be devastating to women’s sexual health.

If there was one thing Gillian knew, it was that she did not want a hole punch anywhere near her genitals.

So when, in 2018, a gynaecologist recommended a vulval biopsy to check for signs of cancer, she hesitated. The doctor suspected that the whitish speck of skin that Gillian had found next to her clitoris was lichen sclerosis, a skin condition that is usually benign. To Gillian, a registered nurse, taking a chunk out of her most sensitive body part sounded a bit extreme.

But in the end she consented. He was a doctor; she was a nurse. She assumed he was the authority on this part of the body. “I never worked in OB-GYN before,” said Gillian, who asked to be identified by her first name to protect her privacy. “I was pretty clueless.”

For the biopsy, she was placed in stirrups and given a spinal epidural to numb the area. Afterwards, to stem the bleeding, the doctor put one hand over the other and pressed hard against her vulva — the outer female genitalia, including the inner and outer labia, the opening to the vagina and the clitoris. Even through the anaesthesia, she could feel the pressure against her pubic bone. She screamed.

A month later, Gillian was in bed with her boyfriend when she realized that she could no longer reach orgasm. She could become aroused, but at the moment of no return, “it ended into nothing,” she recalled. “And that’s still how it is.”

When she informed her gynaecologist, she said, he speculated that she was experiencing numbness caused by scarring and that it would go away in time. It did not. Alarmed, Gillian began seeing one specialist after another in search of an explanation and, hopefully, a solution.

That’s when she discovered that no one wanted to talk about her clitoris.

After hearing about her injury, she said, one urologist compared her to a rape victim and said she must be having a trauma reaction to her biopsy. Next, according to her medical charts, a women’s health specialist diagnosed her with “perimenopause” and prescribed testosterone cream. Another gynaecologist recommended an “O shot,” or vaginal rejuvenation procedure.

When she tried to direct the conversation back to her clitoris, she was met with blank stares. “They looked at me like I was completely insane,” Gillian said. “I just kept on saying there’s something wrong with my clitoris, and they were, like — it was like they did everything but acknowledge the clitoris.”

‘A side note at best’

Some urologists compare the vulva to “a small town in the Midwest,” said Dr Irwin Goldstein, a urologist and pioneer in the field of sexual medicine. Doctors tend to pass through it, barely looking up, on their way to their destination, the cervix and uterus. That’s where the real medical action happens: ultrasounds, Pap smears, IUD insertion, and childbirth.

If the vulva as a whole is an underappreciated city, the clitoris is a local roadside bar: little known, seldom considered, and probably best avoided. “It’s completely ignored by pretty much everyone,” said Dr Rachel Rubin, a urologist and sexual health specialist outside Washington, D.C. “There is no medical community that has taken ownership in the research, in the management, in the diagnosis of vulva-related conditions.”

Asked what she learned in medical school about the clitoris, Dr Rubin replied, “Nothing that sticks out to my memory. If it got any mention, it would be a side note at best.”

Only years later, on a sexual-medicine fellowship with Dr Goldstein, did she learn how to examine the vulva and the visible part of the clitoris, also known as the glans clitoris. The full clitoris, she learned, is a deep structure, made up largely of erectile tissue, that reaches into the pelvis and encircles the vagina.

Today, Dr Rubin has appointed herself Washington’s premier “clitorologist.” The joke, of course, is that few are vying for the title — out of embarrassment, a lack of knowledge or fear of breaching propriety with patients. “Doctors love to focus on what we know,” she said. “And we don’t like to show weakness, that we don’t know something.”

This near-universal avoidance has consequences for patients. In a 2018 study in the journal Sexual Medicine, Dr Rubin, Dr Goldstein and colleagues found that a failure to examine the vulva and clitoris led doctors to regularly overlook sexual health conditions. Among women visiting Dr Goldstein’s clinic, nearly 1 in 4 had clitoral adhesions, which occur when the hood of the clitoris sticks to the glans and can lead to irritation, pain and decreased sexual pleasure.

The authors concluded that all health providers for women should routinely examine the clitoris. But that was easier said than done, they wrote, as most providers “neither know how to examine nor feel comfortable examining the clitoris.”

This oversight has the potential to harm women, as well as trans men and other people with vulvas. There have been documented injuries to the clitoris in procedures including pelvic mesh surgeries, episiotomies during childbirth and even hip surgeries. When performed poorly, a labiaplasty — a procedure to reduce the size of the labia minora, and one of the fastest-growing cosmetic surgeries worldwide — can also damage nerves, leading to genital pain and loss of sexual sensation.

Many of these injuries could be prevented, Dr. Rubin said, if doctors just spent more time getting to know the clitoris. In January, she made this point to a roomful of mostly male doctors at the annual convention of military urologists in Palm Springs, Calif., during a lecture on female sexual health. Practical, animated and unflappable, she was voted as having the best lecture at the conference.

This anatomy, she stresses, isn’t magic, just biology. “It’s not just this strange, mythical area that’s supposed to give you orgasms,” she said in her office in Rockville, Md., in early July, surrounded by penile prostheses, pelvis models and a large Hitachi wand. “You should know what is what and where things are coming from.”

A tradition of neglect.

So why don’t we know? To Dr Rubin, the reason is simple: The clitoris is intimately bound up in female pleasure and orgasm. And until very recently, those themes have not been high on medicine’s priority list, nor considered appropriate areas of medical pursuit.

Even in fields like urology, where male sexual pleasure and orgasm are considered integral, women’s sexual health “is seen as hysteria, Pandora’s box, all psychosocial, not real medicine,” said Dr Rubin, who is also the education chair of the International Society for the Study of Women’s Sexual Health. “Sexual health and quality of life is not something we focus on for women.” (In contrast, Viagra is one of the most lucrative pharmaceutical drugs in recent decades, bringing in tens of billions of dollars to Pfizer since being introduced in 1998.)

Gynaecology, for its part, is far more focused on fertility and preventing disease. “We don’t do a great job about talking about sex from a pleasure-based perspective,” said Dr Frances Grimstad, a gynaecologist at Boston Children’s Hospital. “We talk about it from a prevention standpoint. We’re trying to prevent S.T.I.s,” or sexually transmitted infections. “We’re trying to prevent pregnancy unless you’re trying to get pregnant. We don’t talk about sexual pleasure.”

Dr Helen O’Connell, Australia’s first female urologist, recalled that in her own medical training, the clitoris barely made a cameo. In the 1985 edition of the medical textbook “Last’s Anatomy” that she studied, a cross-section of the female pelvis omitted the clitoris entirely, and aspects of the female genitals were described as “poorly developed” and a “failure” of male genital formation. Descriptions of the penis went on for pages. To her, this widespread medical disregard helped explain why her urology peers worked to preserve nerves in the penis during prostate surgeries but not during pelvic surgeries on women.

Dr O’Connell set out to investigate the full anatomy of the clitoris using microdissection and magnetic resonance imaging. In 2005, she published a comprehensive study showing that the outer nub of the clitoris — the part that can be seen and touched — was just the tip of the iceberg, equivalent to the head of the penis. The full organ extended far beneath the surface, comprising two teardrop-shaped bulbs, two arms and a shaft.

By failing to appreciate this anatomy, she warned, surgeons working in this region risked damaging the sensitive nerves responsible for pleasure and orgasm, which run along the top of the shaft. In procedures like pelvic mesh surgeries or urethral surgeries, “things are potentially in the crossfire,” Dr O’Connell said. “You always need to be thinking of what’s underneath, what’s hidden from view that you’re potentially altering.”

Increasingly, women are speaking out about injuries they sustained in this area during routine procedures. One is Julie, a 44-year-old office manager in Essex, east of London, who lost her ability to orgasm in 2012 after a minimally invasive hip operation to address back pain. She shared her story publicly in The Telegraph last year, using only her first name to avoid discrimination by future employers.

During a Zoom call in January, Julie described waking up from anaesthesia to a searing pain around her clitoris. Her surgeon told her that it was just bruising and would fade. A few months later, she found that she could no longer orgasm. When she tried, “it was literally like someone had pulled a plug out of the socket,” she said. “Everything went dead.”

It took two years of internet searching for her to realize that a cylindrical post placed between her legs during the operation had likely crushed her clitoral nerves. The use of the device, called a perineal post, is known to cause nerve damage, but this was not mentioned on her consent form.

Julie compared her injury to losing the sense of taste or smell — a pleasure taken for granted but when lost changes everything. “It’s 10 years, and I still can’t believe it,” she said over Zoom. “And I haven’t come to terms with it.”

Gillian is still trying to understand the cause of her own injury. Was it the biopsy? The crushing pressure her gynaecologist applied afterwards? Four years and 12 specialists later, she has resigned herself to the fact that she may never recover that sensation. “This changed my whole life,” she said. “The devastation from this is something you can never repair. Ever.”

A new medical map

When Dr Blair Peters, a 33-year-old plastic surgeon at Oregon Health & Science University, first began performing phalloplasties for trans men and nonbinary people, he was surprised to see how large the nerves of the clitoris were — about three millimetres in diameter, on average. (By comparison, the sensory nerve of the index finger is about one millimetre wide.)

“When I went through medical school, we did not learn anything in particular about the clitoris beyond the fact that it exists, basically,” said Dr Peters. As a result, he said, he developed “this subconscious bias that it’s not going to be this super apparent structure. But it is.”

Dr Peters is among a handful of young, social media-savvy doctors who, like Dr Rubin, are helping expand medicine’s map of this terrain — and, in doing so, ensure that what happened to Julie and Gillian doesn’t happen again. As part of his efforts to improve sexual sensation for phalloplasty patients, Dr Peters recently magnified clitoral nerves and counted up how many nerve fibres they contained. The number he found — embargoed until he presents his findings at a conference later this month — was “significantly more” than 8,000, the figure often cited, which is drawn from an outdated study on cows.

In 2020, Victoria Gordon, a medical student at the Kansas City University of Medicine and Biosciences, led a study that sought to define a “danger zone” around the clitoris for plastic surgeons to avoid. During dissections of cadavers, she noticed that clitoral nerves sometimes branch out into fine tendrils, like roots, in ways that might be relevant to surgeons but were not previously described in the literature.

She hoped that others in the plastic surgery field would follow up on this finding, which was published in a plastic surgery journal. “I’m just a fourth-year medical student, I don’t think I should have to tackle this project,” she said in late 2021. “But no one else is.”

Doctors are not the only people urging medicine to recognize the full anatomy of the clitoris. In 2018, Gillian was searching online to make sense of her injury when she came across a Medium post by a woman in Dallas, Jessica Pin, whose situation sounded eerily like hers. Ms Pin, now 36, had lost most of her clitoral sensation after undergoing a labiaplasty at age 18.

After scouring the major obstetrical-gynaecological textbooks, Ms Pin learned that the nerves of the clitoris were rarely well represented, if at all — a key oversight that she believed left the clitoris at risk in a number of procedures. “This omission appears to be caused by sociocultural discomfort with the clitoris and a pervasive lack of regard for female sexual response,” she wrote on Medium.

Gillian was intrigued. “She was the only one talking about this on the internet,” she said. She sent the woman a Facebook message.

Ms Pin eventually began a social media campaign to get OB-GYN textbooks and training standards updated to cover this anatomy. Gillian quietly helped her build followers, then joined Ms Pin on Instagram, using the handle @nursevulvaadvocate. There, she found herself fielding hundreds of queries from around the world from people who had lost genital sensation as a result of medical procedures on or near the clitoris.

Gillian tried to respond to everyone, she said, but could not offer the medical advice that many of them sought. After six months, she closed her account. Today her efforts are more local: She often drives to doctors’ offices to drop off posters of clitoral anatomy. In her work with older patients, she pays close attention to any genital concerns, from vulvar itching to pain after cancer surgery.

Ms Pin pressed on. In the past few years, she has lobbied several textbooks and anatomical resources to update their diagrams of the clitoris and its nerves. Her efforts have reached the front page of Reddit, racked up over 160,000 followers on TikTok and landed her a guest spot on the “The Daily Show with Trevor Noah.” In 2019, she copublished a dissection study with her father, a plastic surgeon, on clitoral nerves.

Yet her tactics are not without controversy. She has been embroiled in numerous social media disputes, and has been accused of harassment for her persistent and sometimes inappropriate efforts to reach gynaecologists and anatomy textbook authors.

Now, after four years of advocating, “I want to be done,” she said. “It would be amazing if doctors start picking up the cause and start talking about this.” The fact that a few medical professionals have, including Dr. Rubin, is “a really big deal,” she added.

Every patient who enters Dr Rubin’s office, regardless of age, is taken on a tour of their own vulva. No longer is a sheet draped over a patient’s legs for the pelvic exam — a convention that Dr Rubin believes helps keep women’s “private parts” shameful and hidden. Instead, Dr Rubin starts by handing her patient a long-handled mirror to see the same anatomy that she will be examining.

With a Q-tip, Dr Rubin probes each part of the vulva for pain, pointing out the labia minora, labia majora and vaginal opening as her patient follows along. Then, she checks under the clitoral hood for adhesions or other skin conditions. The entire exam usually takes under five minutes. “We go at your pace,” she said recently in an exam with a 62-year-old woman, who was experiencing pain after sex. “You’re the boss of this show.”

Dr Rubin and her colleagues believe that their field is uniquely positioned to champion the clitoris and female pleasure. After all, said Dr Barbara Chubak, a urologist at the Icahn School of Medicine at Mount Sinai hospital in New York, “urologists are all about the phallus” — which the clitoris technically is, as it arises from the same embryological structures and is made up of the same erectile tissues as the penis.

“So by definition, clitoral anatomy could, and should, also be a urologic thing,” Dr Rubin added.

Moreover, urologists are perfectly comfortable waxing poetic about things that other providers are too squeamish to discuss. “Urology is all about peeing and all about sex,” Dr Chubak said. “The stuff that people are embarrassed to talk about, urologists want to talk about. Clitoral medicine belongs with the urologists.”

Still, it will take more than passionate “penis doctors,” Dr Rubin said, to give the vulva its due; there must be a concerted movement, one that transcends medicine’s traditionally siloed specialities, to understand and map this anatomy. And for that to happen, other fields need to recognize female sexual pleasure as essential and worth preserving.

“I truly believe we are just several decades behind on the female side,” Dr Rubin said. “But we have to do the work. And we have to have people interested in doing the work.”