Pelvic Pain and the Practitioners Rebuilding a Broken System
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Time to read 12 min
These are just a few of the wildly dismissive, and inaccurate, things doctors, nurses, and other clinicians say to people with genitopelvic pain. I know because I lived with pelvic pain for thirteen years before getting diagnosed with endometriosis, and I heard almost all of these things from physicians. I’ll admit, I’ve never had a doctor tell me to drink a glass of wine before sex, but my frequent conversations with other people who’ve lived with pelvic pain have revealed that this is a piece of so-called advice that’s apparently given with alarming frequency.
In the aftermath of getting diagnosed with endometriosis at 27, I spent a lot of time mad at the physicians who’d essentially told me that nothing was wrong with me.
After getting excision surgery for the first time and discovering I had stage three endometriosis, I imagined taking my surgery photos to every doctor I’d ever seen about my pelvic pain and abnormal periods and yelling, “SEE! I TOLD YOU SOMETHING WAS WRONG!”
I wondered how they could be so clueless about a condition that I learned impacts more than 1 in 10 people with a uterus. It turns out, there’s actually a very good reason for this. Most physicians, even those who specialize in gynecology, receive almost no training on genitopelvic pain during med school.
You’re probably thinking, “That’s absurd! How can that be true?” and you’re right! It is absurd. Unfortunately, it is also completely true.
Table of Contents
Med School + Residency Programs Actually Aren’t Preparing Physicians to Treat Pelvic Pain This Lack of Training Has a Major Impact on Patient Care But Access to Additional Training Isn’t Easy Healthcare Specialties Make it Hard to Get Holistic Care Fighting for Change Institutions and Clinicians That Are Doing it Differently Related Reading
Med School + Residency Programs Actually Aren’t Preparing Physicians to Treat Pelvic Pain
An analysis of the current residency curriculums approved by the Accreditation Council for Graduate Medical Education (ACGME) and the American Association of Gynecologic Laparoscopists (AAGL) revealed that these curricula didn’t adequately cover the evaluation and management of chronic pelvic pain. In fact, the curriculum guidelines set by the ACGME don’t even specifically include information about chronic pelvic pain! The curriculum guidelines set by the AAGL do include some information about chronic pelvic pain, but not nearly enough to adequately prepare physicians to evaluate and properly diagnose patients with chronic pelvic pain.
This lack of time dedicated to genitopelvic pain in med school curricula translates to wildly inadequate training for physicians, as we touched on in our I'm Not Ovary-Acting series.
Aditi Mahajan, now a resident in Physical Medicine and Rehabilitation (PM&R) at Georgetown, told me that during med school, “we talked about genitopelvic pain I think one time, nestled into a lecture about all sexual health disorders, both male and female.”
Andrea Martin, a nurse practitioner who now specializes in Sexual Medicine, described a similar lack of training in her nursing program. “The only thing I remember is being taught there is this rare thing called ‘vaginismus’ but don’t worry about it because you just send them to a specialist... Based on their description, I remember having this vision in my head that if you stuck your finger into the vagina of someone with vaginismus, it would clamp down hard and fast like a Venus flytrap.”
Martin admitted that early on in her career, she definitely didn’t give patients complaining of pelvic pain the care they needed, and she’s sure she missed signs that would have led to an earlier diagnosis for those patients. Martin is far from alone in this experience.
A 2014 survey of 41 OBGYN residents in Colorado found that the vast majority of those residents said they didn’t receive adequate training to address chronic pelvic pain. They also reported that they felt “overwhelmed” by patients who complained of pelvic pain. In a 2021 survey of 802 OBGYN residents more than half of the residents were unfamiliar with conditions and medications that can cause sexual dysfunction.
More alarmingly, a 2021 survey of physicians who studied gynecological surgery during their fellowships found that though the fellows had an extensive understanding of endometriosis, 55% said they had "no" or "little" expertise about pelvic floor dysfunction. Between 51 and 68% reported that they also had "no" or "little" expertise in other conditions that often contribute to chronic pelvic pain. And that’s from the physicians who specialize in gynecological surgery!
This Lack of Training Has a Major Impact on Patient Care
Noa Fleischacker, the co-founder of Tight Lipped, an organization dedicated to education and advocacy around genitopelvic pain, told me, “This lack of education has major consequences for both patients and providers, and it's not good for providers either to not receive education on conditions that impact one in four people with vulvas.”
Like me, Noa has personal experience with the impacts this lack of training has on patient care.
“I went to my regular OBGYN… and her primary concern was how much pain I was in from the pap smear. Instead of [doing] what a specialist would do… a Q-tip exam… she referred me to general anesthesia. I went under full, under general anesthesia in order to get a pap smear. That's my origin story.”
Hindsight and over five years of advocacy have taught Noa that the OBGYN she saw that day probably never learned how to assess genitopelvic pain. With her colleagues at Tight Lipped, she began to dig into the reasons why so few doctors have even a working knowledge of genitopelvic pain. They discovered that the educational standards set by the organizations responsible for medical licensing only require OBGYNs to learn about four conditions that fall under the “pelvic pain” umbrella – “Endometriosis, Adenomyosis, Dysmenorrhea, and Nongynecologic conditions, which ACOG states includes:
“Hypertension and cardiovascular disease including hyperlipidemia
Pulmonary function and disease (eg, asthma, upper respiratory infection, bronchitis)
Endocrine disorders
Galactorrhea/hyperprolactinemia
Thyroid disease
Androgen excess
Diabetes mellitus
Gastrointestinal disease
Genitourinary disease
Musculoskeletal disease (eg, low back pain, sprains, osteoarthritis)
Osteopenia/osteoporosis
Weight disorders (eg, obesity, underweight, anorexia, bariatric medicine)
Headaches
Mental health disorders (eg, depression, anxiety, other mood disorders, premenstrual syndrome)
“Vulvodynia is not named there,” Noa pointed out. “Pelvic floor dysfunction, vestibulodynia, none of these. And then all these dermatological conditions like lichen sclerosus… There is such a range of reasons why someone might show up and be in pain. And none of those conditions, with the exception of endometriosis, are listed there, which means that you are not required to learn that information and you're not going to be tested on it.”
Because of this, only the OBGYNs who take a special interest in genitopelvic pain get the training required to properly examine and diagnose patients who report these issues.
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But Access to Additional Training Isn’t Easy
Physicians who do want to learn more about genitopelvic pain quickly discover how hard it is to access the education they crave. Experts in the field are few and far between, and most of them are in private practice. This means they’re not working at the hospitals where new med students, interns, and residents are learning. Because of this, it’s difficult for budding physicians to get the mentorship required to develop a working knowledge of genitopelvic pain.
However, physicians who develop a passion for pelvic and sexual health get creative, seeking knowledge in unconventional ways and places.
“I would max out all of my Gyn appointments, talking to the doctors and the NPs and asking them their thoughts on different pain disorders,” Aditi told me. “And I would leave each appointment laden with pamphlets that I would come home and read… I reached out to doctors that were active about advocating for pelvic health on Instagram and through that I met some physicians who connected me to other doctors and students and I am slowly building my own network of people who share this passion.”
Andrea took a more traditional approach to learning about genitopelvic pain, but it cost her. Literally.
“I took a course with the Institute for Pelvic Health, joined the International Society for the Study of Women’s Sexual Health, attended conferences, watched any webinars I could find, shadowed other clinicians including physicians, nurse practitioners and pelvic floor physical therapists, and even practiced on some of my nurse practitioner colleagues that wanted to help me learn,” she said. “It was all on me to figure out. And I usually had to use my own money and time off to seek those resources.”
Healthcare Specialties Make it Hard to Get Holistic Care
Another major barrier to learning about genitopelvic pain is the siloed nature of the healthcare system itself. Even though genitopelvic pain often involves multiple systems of the body and has a major impact on overall health and wellness, it’s usually labeled a “gynecologic problem” or a “urological problem.” Medical practitioners working in different specialties, like Aditi, quickly find that even when experts are available for mentorship, their focus is limited to their specialty.
“At Georgetown there are a few changemakers who specialize in genitopelvic pain,” she explained. “However, in the field that I am pursuing, PM&R, there are no mentors here at Georgetown.”
So, even though Aditi has some of the best experts in the field in the same building complex, she still can’t get the education she needs because these experts approach the problem from the perspective of a different medical specialty.
Andrea encountered a completely different problem when trying to access the training she wanted – the outdated, and ridiculous, belief that only physicians are capable of handling certain conditions.
“At first I believed them and felt embarrassed for even thinking I could want for more,” she admitted. “But then I interact with my patients, see how much they NEED someone to help them, and I always find a way to overcome and do the thing I was told was impossible. ALL clinicians need to be empowered to help those with genitopelvic pain.”
Fighting for Change
Driven by the same passion, Noa and the folks at Tight Lipped have taken the fight for change to the systemic level.
“The overall goal is that we want training on vulvovaginal and pelvic pain to be mandated across the country,” Noa explained. “We want to see those [governing] bodies require that all OBGYNs learn how to diagnose, treat, and refer for these conditions.”
It’s a monumental goal, but Tight Lipped has an equally monumental plan. The organization’s medical advisory board has developed a comprehensive curriculum on genitopelvic pain, and Tight Lipped is currently working with teaching hospitals across the country to implement it.
Since one of the major objections to including training on genitopelvic pain is that there just isn’t enough time because physicians have so much to learn in med school, Tight Lipped’s curriculum is designed to deliver as much knowledge as possible in short bursts. Teaching hospitals who adopt the curriculum commit to hosting two to three lectures a year, a workshop with a hands-on training component, and a panel where actual patients – sourced from the Tight Lipped community – detail their experiences with genitopelvic pain and what it was like to seek treatment.
“We want people to hear these stories and understand the range of conditions, what's going on, and also to get bought into the fact that these are conditions they will be seeing and should learn how to treat,” Noa explained.
Since Tight Lipped is, at its core, about patient advocacy, the curriculum is also centered on the patients’ perspectives. Tight Lipped’s medical advisory board worked closely with members of the Tight Lipped community to develop the curriculum, and they continue to work with them to update it as needed. In addition to the patient panels, members of the Tight Lipped community sit in on the lectures and workshops so they can provide feedback about whether the information presented aligns with their experiences.
Right now, 15 hospitals have implemented Tight Lipped’s curriculum to some extent, and the feedback from physicians has been overwhelmingly positive. While the curriculum is what Tight Lipped considers to be the bare minimum, “the standard or the baseline was at zero,” as Noa put it.
https://www.tightlipped.org/resources
“We really are advocating for them to make this a sustainable part of their curriculum,” she told me.
Institutions and Clinicians That Are Doing it Differently
There are already a few teaching hospitals that have done this, and they’ve served as inspirations for Tight Lipped and others fighting for better education on genitopelvic pain.
In George Washington University Hospital’s OBGYN residency program, evaluating and treating genitopelvic pain is part of the core curriculum. Every resident in the program, regardless of their specialty, is required to complete a seminar that focuses specifically on vulvovaginal pain and sexual pain disorders. During the seminar, residents learn from pelvic floor physical therapists, specialists in vulvovaginal dermatology, gynecologists who specialize in pain disorders, and gynecological surgeons, all of whom work at GW Hospital. This model ensures that every OBGYN resident to graduate the program knows enough to validate and evaluate every patient they encounter who reports genitopelvic pain.
Residents who want to know more about vulvovaginal pain can elect to do a two or three week rotation in vulvar pain and sexual health.
GW is also the first teaching hospital in the country with a fellowship in Sexual Medicine. Fellows can study and work at the Sexual Health and Gender Affirmation (SAGA) Center for a year and learn about vulvovaginal pain from some of the leading experts in the U.S.
The Mountain Area Health Education Center (MAHEC) residency program is another shining example of making genitopelvic pain part of the core curriculum for every OBGYN resident. Some of the physicians who run the MAHEC Pelvic and Vulvar Pain clinic are faculty members for the residency program, which means residents get to learn directly from physicians specializing in genitopelvic pain. Having access to these experts and the clinic also means that residents who want to know more about genitopelvic pain can find the guidance and direct mentorship they need.
Noa and everyone over at Tight Lipped look at these programs and dream of the day when every OBGYN resident will get the same kind of training. And while Tight Lipped takes on change at the systemic level, individual practitioners are making significant changes in their own realms of medicine.
Andrea’s fierce tenacity to overcome all obstacles and provide the care patients deserve set on a path to fundamentally change the way Nurse Practitioners are trained.
“Some of us are instructors and have changed the curricula,” she told me. “Some of us welcome students into our practices so we can train them properly. Some of us are loud on social media to reach as many people as possible. Many of us do lectures, not just for students but for professionals who already see patients so that they can change their ways.”
Aditi’s determination to track down the knowledge she wants by any means necessary has led to connections with the few specialists in her field who are treating people with genitopelvic pain. She’s leveraging these connections to change the way that people think about treating genitopelvic pain, not as just a gynecological or urological issue, but as an issue of overall health and wellness.
“I have been so lucky to find a few mentors in PM&R, I found them emailing them about articles they’ve published and at universities I’ve rotated through, and they have inspired me so much to learn more about genitopelvic pain,” Aditi told me. “One of my favorite things about sexual health is that the people who are driving change in this space are so passionate about the work they do and about making people feel better.”
These are just a few of the practitioners who are working tirelessly to change the way physicians treat people with genitopelvic pain. Dozens more throughout the country are doing the same. Together, they’re building a future where pelvic pain isn’t dismissed, the people struggling with it are believed, and everyone can get the treatment they need and deserve.
Pelvic and genital pain are widely dismissed in healthcare due to lack of medical training.
Many clinicians want to help but lack access to proper education and mentorship.
Advocacy groups are pushing for pelvic pain education to become standard in medical training.
Some hospitals and practitioners are already changing how care is delivered.
Systemic change is possible, and it’s already starting.
The Author || Robin Zabiegalski
Robin Zabiegalski (they/them) is a queer, non-binary writer and editor with several years of experience in digital media. Their specialties include: sexual health, mental health, LGBTQIA+ issues, and wellness. Robin's work has been published in Insider, Health Digest, GameRant, Heavy.com, and several other digital publications.
When they're not working, Robin can be found teaching or practicing yoga and Brazilian Jiu Jitsu, hiking, playing Fortnite with their husband, or chasing their rambunctious kiddo.
