From ‘Her’ to ‘Their’ — Including LGBTQ+ Experiences in Pelvic Health

It has taken a long time for ‘Women’s Health’ to be considered a worthwhile space for innovation. Our goal is to share this newfound spotlight with marginalized groups, bringing attention to the experiences and unheard voices of LGBTQ+ people in sexual and reproductive healthcare.

Published in

frog Voices

14 min readJun 17, 2020

In 2017, our team of four — designers, engineers, and researchers — challenged the status quo of the pelvic exam. Our original goal was simply to start a conversation: What if the exam experience could be better? Through research with patients and providers, we created (and open-sourced) seven concepts that improve key moments in the pelvic exam experience. We also began redesigning the speculum itself, which has largely been unchanged for almost 200 years. (Read more about the original Yona work).

Throughout this work, we challenged ourselves to expand the definition of ‘Women’s Health’ to include all people with vaginas, not just people who self-identify as female. We took extreme care in selecting our inclusive language, brand name, and brand character, but quickly realized that our early research did not include all of the demographics we claimed to be designing for. Although our intentions were in the right place, claiming to be an ally was not enough.

To apply action to intent, we have since expanded our research to include gender-informed providers and LGBTQ+ patients with various personal backgrounds and medical histories from all corners of the U.S. Through these conversations, we heard stories and experiences that moved us to laughter and tears, and helped shape our understanding of perspectives outside of our own.

Although ‘Women’s Health’ has finally garnered attention, the term itself needs to be modernized to include and normalize care for LGBTQ+ people. Pelvic exams can be stressful, uncomfortable or even unbearable for anyone, but patients who fall outside of the assumed ‘norm’ (cisgender¹, straight women) face additional difficulties.

It’s not just about gender and sexuality — there are other factors that impact a patient’s experience during a pelvic exam. These include race and racism, socioeconomic status, access to healthcare, history of trauma and sexual assault, abilities or decisions around childbearing and a myriad of others. These factors may intersect with each other and also affect people outside of the LGBTQ+ community. While this research focuses on the experiences of LGBTQ+ people, we believe each of these lenses deserves its own thorough analysis.

We know that inclusivity doesn’t happen overnight. This week alone has seen both regressions and progress in LGBTQ+ rights and protections. Our learnings are not news for the people who regularly have these experiences, but need to be heard by everyone. It’s our hope that by sharing them, we’re contributing to the available knowledge and inspiring new ideas and actions to build a more inclusive healthcare system.

Current LGBTQ+ Exam Experiences

1. The norms surrounding pelvic health are biased towards straight, cisgendered women, making certain practices and questions irrelevant or insufficient for anyone outside of that demographic.

For starters, the exam is labeled the “Well Woman Exam.” In our research, even clinics that specialize in LGBTQ+ care continue to use this language. ‘Women’s Health’ has become a catchall for sexual and reproductive healthcare for all people with vaginas. This terminology is limiting, and immediately alienates people from an essential part of their preventative healthcare.

From the name of the exam to the assumption of preferred pronouns to how providers identify a patient’s anatomy, language plays a considerable role in establishing an inclusive environment. For AFAB² transgender patients, the emphasis on ‘Women’s Health’ can be especially triggering. AFAB patients might avoid the term ‘vagina’ and instead use their own alternatives such as ‘front hole,’ ‘frontal genitals,’ ‘they’ or even ‘queen.’ Many experience body dysphoria, making it distressing for them to acknowledge their given body parts, let alone take care of them.

Additionally, patients expressed that questions asked during the exam are out of date and biased toward the experience of straight, cisgendered women. For example, some providers automatically assume that if a patient is sexually active, they are at risk of becoming pregnant. Such assumptions about the patient and their partner(s) can cause patients to feel as if their providers don’t understand them or their risks.

“Well, what the hell’s my risk factor anyway? How much am I at risk compared to a straight woman?’ And they just kind of shrug their shoulders at me.” — Nonbinary Patient

2. Many LGBTQ+ patients avoid seeking sexual and reproductive care out of fear of being marginalized, discriminated against, or mistreated.

During our interviews, several patients described personal horror stories that they, their family or their friends had experienced while seeking sexual and reproductive care. These experiences informed their decisions to stop seeking care altogether — sometimes until it was critical and detrimental to their health.

“I took a friend of mine [to my appointment]. She had never been to the gynecologist because she was so afraid. When I came out [after my exam], I was in tears and she just said ‘I’m never going’ and walked out.” — Bisexual Female Patient

Specifically for transgender patients, the process of getting sexual and reproductive health services can feel insurmountable. According to a survey completed by the National Center for Transgender Equality, 48 percent of transgender men reported postponing or avoiding preventative care out of fear of discrimination³.

“Many transgender men just avoid gynecologists completely, because you go in, you’re misgendered, they call you ‘miss’ because they assume, and then they come out and they’re [surprised], ‘oh, you’re the dude with the beard’.” — Transgender Male Patient

Although there are providers who emphasize and specialize in gender-informed and culturally responsive care, these practitioners can be few and far between. Seeking them out is often an overwhelming task in itself.

3. Without formal and accessible sources of information, patients are turning to unofficial channels such as online forums, social networks, and word-of-mouth to educate themselves.

The need for inclusive care has existed for a long time, but the information and education systems that form its foundation are still developing. For patients, many online resources are tailored to cisgender, straight women and don’t provide guidelines around exam frequency or risk factors outside of that ‘norm,’ leaving LGBTQ+ patients without answers. Lesbian, bisexual, or asexual patients may wonder if they are at risk for HPV or cervical cancer if they have not been with a male partner. Transgender patients may not know when to start or stop getting cervical exams, and may also face challenges around finding pregnancy or abortion care. Patients in these situations end up turning to their personal networks or to online communities to find answers. Although this information is freely accessed, patients must judge for themselves whether a source is trustworthy or not.

4. LGBTQ+ patients are forced to take on an even bigger responsibility of self-advocacy than straight, cisgendered women.

Patients who do seek care are faced with either standing their ground and advocating for correct gender identification and terminology, or ignoring it to reduce the friction of the appointment. Patients described the process as ‘outing themselves’ to their providers, or sometimes as adopting a different identity to make it easier for others to understand.

“I felt less uncomfortable pretending to be a woman than I would having to justify my identity. So I just went with ‘sure I’m a woman’ and buckled down and dealt with it.” — Agender and Asexual Patient

Additionally, when it comes to specific needs such as hormone therapy or pelvic care during gender reassignment, transgender patients often need to become experts on their own treatment because their provider might not have the knowledge needed to give the best care. Transgender care goes beyond pronouns, requiring specific medical knowledge around hormone therapy and the effects that hormones and surgeries have on the reproductive organs.

“One of my primary care doctors didn’t have any transgender experience at all; she was just outdated. My hormones weren’t getting adjusted like they needed to be. I had to bring in the research and she wasn’t willing to learn. I had to be more of my own advocate and eventually that’s why I left.” — Transgender Female Patient

5. Inclusive care education is elective, and not yet considered a core component of sexual and reproductive health training.

Inclusive and culturally-responsive care is not required during the formative years of a provider’s training, when curriculum and mentorship most influence their approach. We heard from providers that habits are formed early, and are then continued throughout their career.

Healthcare providers fall on a spectrum of awareness toward inclusive care. Some take it upon themselves to become informed, others don’t prioritize building an inclusive practice at all, and some desire to change but fall short due to a lack of training. Well intentioned providers can still make patients feel awkward, triggered, or marginalized. In some cases, the provider sought to learn from the patient, inverting the responsibility of providing information. This places the patient in an incredibly uncomfortable position, forced to be the expert and a representative of all ‘other’ patients, and also forced to reveal personal details about intimate elements of their lives.

For providers actively practicing, there are lectures, conferences and certifications that exist, but they are piecemeal, living across a multitude of platforms and organizations. That means the onus falls on individual providers to discover these resources and pursue educational opportunities, often in addition to their existing workload.

“It’s either slightly inappropriate questions or they don’t have health data for gay folks. This [one] doctor brought up my sex life and she got into some real graphic questions about how lesbian sex worked. That was really stressful for me.” — Nonbinary Patient

6. Inclusive care extends beyond patient and provider.

In our initial research, we found that anxiety can start long before the exam begins and is amplified in all of the steps leading up to the speculum insertion. With this same holistic lens, we found that while providers themselves play a huge role in establishing inclusive practices, the interactions patients have with all personnel (nurses, medical assistants, front desk administrators, billing, etc) affect their perception. Even passive touchpoints such as signage and paperwork impact patients’ feeling of welcomeness and acceptance. When done right, patients notice and appreciate the details.

“[At my appointment], I didn’t hear references to women’s healthcare or women’s issues. They didn’t use the phrase ‘feminine’ to describe pads and tampons. It didn’t feel like I was a ‘side’ population. It felt like they were there to treat my body, not treat me as a woman.” — Agender and Asexual Patient

Additionally, digital administrative systems are often disconnected, outdated, or inflexible. From inconveniences such as needing to reiterate pronouns at every visit, to insurance barriers for procedures and exams that ‘don’t match’ a patient’s recorded gender, these obstacles pile up into a systemic invalidation. Even when some patients established a good understanding of their medical history and identification preferences with their medical team, medical records and tools were unable to be adjusted to reflect that understanding.

“My doctor recognized me as female for 16 months. The second [my record] switched over, I have been getting alerts that I’m 20 years behind my gynecological exams, and it’s funny, they can’t get rid of [the alerts]. I don’t have that plumbing yet, I’m working on it.” — Transgender Female Patient

Change Can Start Now

There are systemic changes that need to happen in order to achieve parity of care. We recognize change of this magnitude will require time and commitment from systems, institutions, and organizations, but there are immediate and achievable steps that can meaningfully improve the patient experience and create momentum for ongoing progress.

While we recognize that much of this care has been currently disrupted because of COVID-19, we believe it’s still vitally important to keep in mind the following insights as we move forward in defining the new normal.

For Providers and Care Teams

Human-first approach (obviously). We hope respectful and human-centered care is already in place. This is the baseline for all patients, but there is work to be done in levelling the playing field.

Don’t assume. People are unique. Avoid making assumptions based on appearance, gender or names. Asking questions about pronouns, lifestyles and partners can clarify and eliminate awkwardness at a later step, and build trust and confidence with your patient.

Communicate. Clear communication, especially around decision making, puts the patient at ease and helps them own their health experience. This can range from affirming a patient’s pronouns to helping them interpret the medical knowledge they need.

Balance preference and clarity. When a patient expresses a preference in terminology, the act of using their preferred words goes a long way in building trust. However, there are still situations in which the scientific terminology is the common denominator that everyone understands. In these situations, acknowledge to the patient that certain words are the most medically specific. It’s all about balance.

Ask permission. Borrowing from trauma-informed care⁴, the step of asking the patient for permission throughout the process can give them agency in the exam. When a patient is more relaxed, the exam is more efficient. It’s a win-win.

It’s okay to not know. Recognizing a lack of specific knowledge is a first step, and referring patients to specialists ensures they get the care they need. The next step is to take action to fill that knowledge gap.

Grow knowledge. Look for opportunities to pursue trainings from peers and experts. Training should extend to front desk staff, medical assistants, and anyone in contact with patients. Check out this awesome paper in Obstetrics and Gynecology that outlines specific steps to take⁵.

For Patients

Communicate. Communication is a two-way street; even the best providers can’t read minds. Every patient is different and should make their preferences known:

— “I prefer to go by the name… “
— “I prefer to use the pronouns…”
— “It would make me more comfortable if you referred to those parts of my anatomy as…”

Self-advocate. Health services are deeply personal, yet patients often feel unable to make healthcare choices for themselves. It’s challenging to take a position of self-advocacy because being a patient can feel disempowering. Although difficult, patients can become active participants by:

— Being informed and researching ahead of time (we’ve linked a few references below⁶)
— Asking questions and challenging things that feel wrong
— Exploring other options when a provider isn’t the right fit

Spread the word. We recognize it isn’t the patient’s responsibility to educate everyone along the way, but conversations with providers and other patients can help people and organizations grow and change. Not everyone is outspoken about their experiences, but those who can speak up may help advocate for their communities and serve as an ally to others⁶.

Systemic

Prioritizing inclusive care education. Systemic change is the most difficult and takes the longest time, but it can have the biggest impact. We believe that inclusive and informed care is necessary, which requires that it become non-elective in medical education. Medical institutions and organizations can reduce the burden on providers by formalizing and centralizing training, and creating the time and space for providers to learn.

Modernizing support services. Processes and tools such as insurance forms, intake forms and medical records assume a healthy, straight, cisgendered individual. Separating care from such assumptive norms creates flexibility around diagnosis codes, questions, forms and records, allowing providers and administrative support services to adapt to each patient’s unique situation.

Evolving understanding and being open to change. Just as medical knowledge changes with new research and findings, social norms are also changing. Over the course of this research, we questioned if ‘health for people with vaginas’ was still the right language. For now, we’re sticking with it because ‘vagina’ is the most neutral and commonly understood term that we have found. As we continue to learn, we are open to change. Creating a modern exam for modern people requires empathy and receptiveness just as much as new techniques and treatments.

The learnings we have shared here are not prescriptive — everyone’s experiences are unique. We learn every day from people who reach out to us and share their stories. This journey toward more inclusive care is far from finished and there are many avenues to improve pelvic healthcare. Yona is a continuous work-in-progress, and we hope that what we share here inspires people to learn more and advocate for themselves and for each other. When put into practice, inclusivity forms a strong foundation of care for all.

#spreadit
Yona

Yona
Yona started in 2017 and is an ongoing initiative to rethink the pelvic exam experience from a patient-centered perspective. Through our research and interviews with patients and providers, our original work identified seven touchpoints that improve the exam experience. Since then, we have pushed our speculum development and are looking for partners to help us trial and distribute. Guided by our board of advisors, including clinicians and leaders in healthcare innovation and design, our goal is to transform health care, one vagina at a time. Learn more about Yona here.

Fran Wang, Senior Mechanical Engineer, frog San Francisco
Fran is a Senior Mechanical Engineer at frog, creating meaningful and memorable physical products and experiences. In a progressively digital world, she believes that designing for the physical world is imperative, but that the greatest value comes from transgressing the boundaries between disciplines. Fran believes that impact happens at an organizational and systemic level, but can start at an individual level through design and engineering.

Rachel Hobart, Senior Visual Designer, frog San Francisco
As a Senior Visual Designer at frog, Rachel dives into every project aiming to design something that is as functional as it is beautiful. She is collaborative by nature and delivers best when working closely with clients and teammates to bring ideas from concept to reality. The combination of Rachel’s craft in visual communications and passions in culture push her to make meaningful work. Through design, she hopes to create positive and impactful change in the world.

Footnotes

Cisgender refers to people whose gender identity agrees with their sex assigned at birth.
Assigned female at birth.
Grant, Jamie, Lisa Mottet, and Justin Tanis. Injustice at Every Turn. National Center For Transgender Equality, 2011.
Our initial intent was to cover trauma-informed care as well, but we found that this is a category of its own that deserves more consideration.
Moseson, Heidi, et al. “The Imperative for Transgender and Gender Nonbinary Inclusion,” Obstetrics & Gynecology, vol. 135, no. 5, 2020, pp.1059–68. Crossref, doi: 10.1097/aog.0000000000003816.
Here are some resources we found in our process:

Disclaimer
The contents of this website, such as text, graphics, images and other materials are intended for informational and educational purposes only and not for the purpose of rendering medical advice. The contents of this website are not intended to substitute for professional medical advice, diagnosis or treatment. Although we take efforts to keep the medical information on our website updated, we cannot guarantee that the information on our website reflects the most up-to-date research.