When a powerful doctor makes a mistake

I have removed all personally identifying information.

She was just 18 when he agreed to perform a labiaplasty on her. Like many naive young women, she thought her labia minora were not supposed to stick out.

Like many naive young women, she had not been able to find her clitoris. When she went looking for answers on the Internet, she read that clitorises can be “hidden.” She also read, in medical journals and on surgeons’ websites, that protruding labia minora are considered “unfeminine” and “embarrassing.” She became convinced she had an embarrassing problem. She read that surgery was the solution.

He had been recommended as the best OB/GYN surgeon at a major hospital. She was confident she was in good hands.

He completely removed her labia minora, performed a clitoral hood reduction without her consent, and cut the dorsal nerves of her clitoris. The glans of her clitoris would never be sexually sensitive again.

He had only done a labiaplasty twice before. Like most OB/GYNs who do these procedures, he had not been trained to do them.

He never disclosed that anything had gone wrong, but he stopped doing these surgeries after that.

She knew she had lost sensation but didn’t understand what that meant. She assumed everything would work out when she started having sex. She thought it was her fault. She didn’t know enough about her anatomy to understand he had done a separate surgery without her consent. She started seeing a new doctor because she was so uncomfortable. The new doctor was his partner. Upon seeing an 18 year old with completely amputated labia minora, she said nothing.

Later, the young woman worked up the courage to ask her doctor if her surgery had caused her difficulty with orgasm. She could not feel anything without a vibrator, she said. Despite the visible scars reaching well into her clitoral hood, her female doctor told her her surgery could not have affected her sexual function.

The original male doctor meanwhile became president of a state medical association.

The young woman finally found her clitoris. The glans was not sensitive like it was supposed to be. She went to a new female doctor. The new doctor also told her her surgery could not have affected her sexual function. She suggested she fall in love. Though the new doctor was “horrified” that all her labia minora had been amputated, she did not tell her she could report it.

The young woman started doing research. Eventually she figured out a clitoral hood reduction had been performed without her consent. Given the course of the dorsal nerves along the clitoral body, she figured out they must have been injured.

The young woman did a lot of research. She realized the course of the dorsal nerves was never mentioned in literature on clitoral hood reductions. It was never shown in OB/GYN journals. It was never shown in OB/GYN textbooks. She also learned that the sexual function of the labia minora was rarely described. She thought her doctor must not have realized they were important. How else could he have completely amputated them? She thought he must not have realized the dorsal nerves were at risk. She decided this error must have occurred because her doctor didn’t know the anatomy.

She wrote him a letter telling him what he had done and asking him to help her change training standards to protect other patients.

He responded reminding her that the surgery was her choice. He reminded her that she had requested her labia minora not stick out. He had only tried to give her what she asked for.

He told her he stayed far away from her clitoral hood and frenulum. But there were scars to prove otherwise.

The young woman became emotionally unstable after reading this letter. She wanted to report him but was told the board would likely blame her and take his side. She had never had what happened to her confirmed by a doctor, so she went to see one. It was confirmed. This was what she had needed to give legitimacy to her complaint, she thought.

But it became unbearable. No one around her seemed to understand the magnitude of what had happened. People asked her what the big deal was. People asked her why she needed justice. When she tried to talk to therapists, they asked about her feelings about her mother. It had taken 7 years to finally get it confirmed. She had hoped it was fixable somehow. It wasn’t fixable.

She felt ashamed. How could she have been so stupid to not file a lawsuit when there was still time? She read research on resilience. Based on all the parameters surrounding her trauma, she did not think she could ever be okay. It was like getting horribly raped in a world where rape isn’t considered a crime. She read she needed acknowledgment, support, etc. Most of all, she needed to change the problem of pervasive systemic negligence. But no one was even seeing it. She didn’t like the wreck of a person she was becoming.

One night she set Joy Division “Atmosphere” on repeat, took 60 Vicodin, some Xanax, some Benadryl hoping that would help stop her heart, and as much whiskey as she could drink. Her dad checked on her in the middle of the night. He took her to the hospital.

She was afraid to report after that. She was afraid of getting told it was her fault. She was afraid of people defending her doctor. One OB/GYN she had gone to had said:

“You should have known all surgery carried risk. You can never completely control a result.”

It had been wrong site surgery. That should never happen. But she was afraid of this. She was afraid even doctors wouldn’t understand the difference between the labia minora and the clitoral hood.

She told herself she would report him when she got more stable. Back then there was no statute of limitations. She thought she had time.

When she finally got the courage to report, they had passed a new statute of limitations. She missed it by a week.

So she started coming up with new ideas for how to stand up for herself. She wrote a letter to the head of patient safety at the hospital. He agreed to meet with her. But she was too afraid. She thought if she wrote down everything she needed to say, complete with references, this would help. She started writing.

But she hated writing. She’d never been any good at it.

She wrote what she called, “A Clinical History, Causal Analysis, and Proposed Solutions.” She wrote a background of the anatomy and prevalence of labiaplasty. She wrote a clinical history of herself. Then she broke down all the causal factors accordingly:

1. Motivation — This section alone became 80 pages long, covering all the research pertinent to motivation. The point was to keep people from blaming her. Her decision to seek surgery was not wrong based on the information she had.
2. Lack of informed consent — She wrote about how physician ignorance of vulvar anatomy and potential risks leads to a lack of informed consent. Patients who assume their doctors have been adequately trained are sorely mistaken.
3. Cause of surgical error — She wrote about inadequate education in vulvar anatomy and female sexual function, lack of training in techniques, negligent privileging practices that allow surgeons who are not trained to do these surgeries at surgery centers, etc. She went over the literature for examples of how ignorance and lack of regard for surgical anatomy and physiologic function is demonstrated. She compared the literature to that for rhinoplasty and breast reductions. She analyzed the content of OB/GYN textbooks. She read every article in the two highest impact journals containing “sexual function” and every article containing “labia minora” over the course of 12 years, trying to explain the over-arching pattern of disregard for vulvar anatomy and female sexual function (physical — not just psychological, and orgasmic function — not just ability to be penetrated). She talked about the failure of professional organizations to uphold their promise to ensure a high standard of care for patients. She talked about how poor information quality in medical literature is a threat to patient safety. She made a lot of block diagrams.
4. Failure to disclose or report — She talked about being an invisible data point. She talked about problems with error feedback. She talked about the inadequacy of the medical liability system to provide any incentive to learn from mistakes. She made more block diagrams. There was a big issue here, she thought. She talked about how the problem is poorly designed systems, not individuals. She talked about a problematic culture. She talked about getting kicked out of an OB/GYN’s office for quoting the AMA’s code of ethics, which actually states that doctors are responsible for reporting harm incurred by their colleagues. She had suggested she at least tell harmed patients that a reporting option exists. How many patients don’t know they can report errors? The OB/GYN said it was none of her business to interfere when patients are harmed by other doctors. How does this contribute to a culture of distrust? How does this affect the patient-physician relationship?

Then she wrote a proposal. Solving problems at every error point was important. She got a bit overwhelmed. There were so many problems.

She got very stuck. She kept getting dizzy. She’d get angry at herself for getting dizzy. She was being weak, she thought.

People asked when she was ever going to do anything worthwhile. They told her she was lazy. She didn’t deserve to live in such a nice apartment, they said. She didn’t deserve to wear such nice clothes, they said. She didn’t deserve vacations. She should be ashamed of herself for not having a career like everyone else. They told her she wasn’t dealing with this well. When was she ever going to learn to deal with anything? She mostly kept to herself. When she tried to date, issues would come up. Men told her they couldn’t date her because she was emotionally unstable. One said he’d rather date a barista with a plan.

Her original doctor continued to get awards and was featured in major media publications. He becomes more and more respected.

She never finished her paper. It’s a mess. It’s outdated. Different drafts are split up into about 50 different documents. She might start sharing it, but it isn’t good enough. It doesn’t fit the image of what she wanted to say.

Today, she writes emails. She writes emails to residency program directors, textbook authors, leadership at professional organizations (ACOG, ABOG, ACGME). She writes to journalists, to doctors who might be allies, to activists. She has limited luck. She gets afraid to check her email because she gets so angry.

Last week she got good news. Her doctor had finally agreed to meet with her. He still insists he never performed a clitoral hood reduction, though she has scars proving this. She thought it would be easy now. All she had to do was show him, she thought. But she got afraid again. After 13 years of him denying what he did, could she sit in stirrups and show him herself? She went to his colleague instead, who had originally confirmed what happened, and went over the scars with her again.

He says he knows he did not make those incisions. He says she must have had a second surgery.

The evidence doesn’t matter.

She writes her story on the internet. It gets taken down. We talk about living in an era of fake news, but the truth is censored.

She writes about the absence of clitoral neurovascular anatomy from OB/GYN textbooks and journals. This is something anyone can verify for themselves. Many state medical libraries are open to the public. Many people have physician friends with access to medical literature. Many people are actually physicians. Many people are students with access. But they call this “fake news” without even looking.

The ACGME application for OB/GYN residency accreditation is online for all to see. ACOG committee opinions are public for all to see. Experts have written about how the lack of training standards is a danger to patients, online, for all to see.

If she could just get her original doctor to acknowledge what he did, he has the power to change standards and protect future patients. But he won’t recognize he even did a surgery there are scars to prove.