While you may be reading this thinking, ‘I don’t know anyone who is Intersex,’ or ‘I’ve never treated a patient who is Intersex’ you might be surprised to find that 1.7% to 4% of people are Intersex, according to Zeeman and Aranda (2020) in their 2020 article A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance.

According to Haghighat, et. al (2023) in their article Intersex people's perspectives on affirming healthcare practices: A qualitative study, “Intersex people have variations in their sex characteristics that do not exclusively fall within binary definitions of male and female.” These variations can be chromosomal, hormonal, gonadal, or anatomical (Cochetti, Monro, Vecchietti, & Yeadon-Lee [2020] and Haghighat, et. al [2023]).

Intersex folx are often seen by multiple healthcare providers throughout their lifetime, including pelvic rehab practitioners. However, one thing that most don’t know, is that historically; Intersex folx have been very mistreated and pathologized by healthcare workers. Many Intersex folx have been given non-medically necessary and non-consensual surgical procedures and hormone treatments over the years; and unfortunately, some of these practices are still occurring around the world even today. Intersex folx have also been treated by providers with inaccurate education and inadequate training needed to provide care to Intersex populations, leaving many patients who are Intersex being the ones who educate their own medical providers about their variations and healthcare needs. Tiffany Jones (2018) also mentions in her article Intersex Studies: A Systematic Review of International Health Literature that even language in the medical literature is inaccurate and inadequate when describing Intersex populations (Jones, 2018).

This maltreatment and poor education on the healthcare providers' part, as well as dissemination of inaccurate and pathologizing medical information; can lead to copious trauma for patients and a lack of trust in healthcare workers and healthcare systems. In Haghighat, et. al.’s article, they state that “depathologization of intersex variations and comprehensive teachings of intersex history and medical care must be incorporated into medical curricula to mitigate experiences of medical trauma and to relieve the burden placed on patients to be their own medical experts and advocates. Systemic change is needed for the normalization and demedicalization of intersex variations and for the medical empowerment of the intersex community.”

In my course Intersex Patients: Rehab and Inclusive Care, next scheduled for November 16, 2024, healthcare providers will learn about the healthcare needs that are unique to Intersex folx and about how to provide trauma-informed, evidence-based evaluations, treatments, and plans of care for patients who are Intersex. Students will also learn how to provide Intersex-Affirming Healthcare and how to be better allies in healthcare and in life to Intersex folx so that we can help put a stop to these non-medically necessary and non-consensual medical procedures, empower patients who are Intersex to have a say in their healthcare practices, to help stop the pathologization and further marginalization of Intersex people, and to educate other people (not just healthcare providers) about how to be allies to Intersex folx everywhere.

Resources:

• Intersex Studies: A Systematic Review of International Health Literature. Jones, T. (2018). Intersex Studies: A Systematic Review of International Health Literature. Sage Open, 8(2).https://doi.org/10.1177/2158244017745577
• Intersex people's perspectives on affirming healthcare practices: A qualitative study. Darius Haghighat, Tala Berro, Lillian Torrey Sosa, Kayla Horowitz, Bria Brown-King, Kimberly Zayhowski. Intersex people's perspectives on affirming healthcare practices: A qualitative study. Social Science & Medicine, Vol 329, 2023 116047, ISSN 0277-9536, https://doi.org/10.1016/j.socscimed.2023.116047.
• A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance. Zeeman L, Aranda K. A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance. Int J Environ Res Public Health. 2020 Sep 8;17(18):6533. doi: 10.3390/ijerph17186533. PMID: 32911732; PMCID: PMC7559554.
• https://www.tandfonline.com/doi/full/10.1080/13691058.2020.1825815#abstract/. Cochetti, D., Munro, S., Vecchietti, V., & Yeadon-Lee, T. (2020, November 25). 500-515. doi: 10.1080/13691058.

1. Gain foundational knowledge. Not everyone with a healthcare degree arrived there by way of being a biology major. Accordingly, many people in the health field are simply unaware of how many wonderful people in this world exist outside the XY and XX binary. Did you know there are also people with just one X chromosome per cell? Some people are even XXYY or XXY! Also, some people may have chromosomes that fit binary expectations; however, they have generic variations that result in different bodily responses to sex hormones. This might, for example, lead to someone with XY chromosomes presenting with testes in the abdomen while also having breasts and a vulva. By taking this course, you will be able to appreciate the wide range of what it means to be a human. One of my all-time favorite podcast series, Gonads by RadioLab, is a great starting point for engaging with these concepts prior to the course: https://radiolab.org/series/radiolab-presents-gonads/
2. Connect with your clients better. After taking this class, I learned new ways to bring up the topic of what it means to be intersex and how that relates to pelvic rehabilitation. I went from not being aware of any of my current clients being intersex, to finding out two were intersex within a few days of completing this course! This class will help you to build better rapport with all of your clients, whether they are intersex or not.
3. Get practical tips on making your practice more inclusive. One of the big takeaways for me from this course was how to update my intake forms. I had already accounted for gender differences on my documents, but not sex differences. Through this course, I got great suggestions, such as including an organ inventory, rather than simply the three choices of male/female/intersex. The organ inventory is a great example of making a form more inclusive because I would want to know if a non-intersex (also called endosex) cisgender man didn't have, for instance, testicles just as much as I'd want to be prepared to support an intersex client with variations in anatomical structures. Here is a link to ideas for making your forms more intersex-friendly: https://www.queeringmedicine.com/resources/intake-form-guidance-for-providers.

AUTHOR BIO:
Molly O’Brien-Horn, PT DPT, CLT

Molly O’Brien-Horn graduated from Rutgers School of Biomedical & Health Sciences (formerly the University of Medicine & Dentistry of New Jersey) with her Doctor of Physical Therapy degree. She is a Pelvic Health Physical Therapist, a Certified Lymphedema Therapist, and an LSVT BIG Parkinson’s Disease Certified Therapist. She is also a sex counselor, a trained childbirth doula, and a trained postpartum doula. Molly is a member of the American Physical Therapy Association Academy of Pelvic Health Physical Therapy and is also a Teaching Assistant with the Herman & Wallace Pelvic Rehabilitation Institute.

Molly is passionate about providing accessible healthcare to pelvic health patients of all age ranges, all gender-identities, all sexualities, all body variations, and all ability levels. She also has experience in a variety of physical therapy settings over the years including pediatric and adult oncology, school-based pediatrics, inpatient and intensive care unit hospital-based settings, skilled nursing facilities, outpatient and sports-based orthopedics, and wound care.

The number of individuals who identify as transgender is growing each year. The Williams Institute estimated in 2016 that 0.6% of the U.S. population or roughly 1.4 million people identified as transgender (Flores, 2016). This was a 50% increase from a 2011 survey which estimated only 0.3% or 700,000 people identified as transgender (Gates, 2011). Though these numbers are growing each year, due to increased visibility and social acceptance, it is presumed that these numbers are underreported due to inadequate survey methods, stigma/fear associated with “coming out” and deficient definitions of the multitude of options for gender identity (Flores, 2016).

With the rise of individuals who identify as transgender, gender non-binary and intersex, healthcare professionals have equally seen an influx of patients who require care throughout their discovery and transition. Though medical intervention for these individuals is not new, the first documented surgery was in 1922 to Dora Richter, it has often been segmented and lacking in evidence-based treatment strategies (“Dora Richter,”2019). In 1979 The World Professional Association for Transgender Health (WPATH) was founded and published their first version of the Standards of Care (SOC) for the Health of Transsexual, Transgender, and Gender Nonconforming People (“WPATH,” 2019). Currently, WPATH is on their seventh version of the SOC which is opening doors for the treatment of this population.

Though organizations such as WPATH have attempted to standardized care, the patient experience and reception of quality care are significantly lacking. In 2015 the National Center for Transgender Equality performed a groundbreaking survey of 27,215 respondents with the aim to “understand the lives and experiences of transgender people in the United States and the disparities that many transgender people face” (“About,”n.d., para. 1). This survey revealed that 33% of individuals who saw a health care provider had at least one negative experience related to being transgender (National Center for Transgender Equality, 2015). Negative experiences included; being refused treatment, verbal harassment, physically or sexually assault, and teaching the provider about transgender people in order to get appropriate care (National Center for Transgender Equality, 2015). Alternatively, 23% of respondents did not see a doctor when they needed to because of fear of being mistreated as a transgender person (National Center for Transgender Equality, 2015). Though these statistics are staggering and affronting there is hope for a better future.

Research for the care of these patients, specifically related to pelvic floor physical therapy, is on the rise. In the Annals of Plastic Surgery, an article was published with the purpose to capture incidence and severity of pelvic floor dysfunction pre-surgery, monitor any progression of symptoms with standardized outcome measures and highlight the role of physical therapy in the treatment of patients undergoing vaginoplasty (Manrique, et al., 2019). While in the Journal of Obstetrics & Gynecology a retrospective case series similarly focused on physical therapy pre and post-operatively highlighting dilator selection and success, pelvic floor dysfunction including bowel and bladder as well as reported abuse history (Jiang, Gallagher, Burchill, Berli, & Dugi, 2019). Through articles such as these clinicians can expect an uptick in calls questioning if they treat these patients. This begs the question of, "How can you best prepare?"

The answer is simple, attend continuing education. It is where you can not only learn evidence-based evaluation and treatment but also connect with other providers and mentors that care for these patients. In 2020 Herman & Wallace will be offering a continuing education course that serves this exact purpose. Keep your eyes on next years offerings, as spaces will surely fill quickly.

About. (n.d.). Retrieved May 15, 2019, from http://www.ustranssurvey.org/about
Dora Richter. (2019, May 09). Retrieved May 15, 2019, from https://en.wikipedia.org/wiki/Dora_Richter
Jiang, D. D., Gallagher, S., Burchill, L., Berli, J., & Dugi, D. (2019). Implementation of a Pelvic Floor Physical Therapy Program for Transgender Women Undergoing Gender-Affirming Vaginoplasty. Obstetrics & Gynecology,133(5), 1003-1011. doi:10.1097/aog.0000000000003236
Manrique, O. J., Adabi, K., Huang, T. C., Jorge-Martinez, J., Meihofer, L. E., Brassard, P., & Galan, R. (2019). Assessment of Pelvic Floor Anatomy for Male-to-Female Vaginoplasty and the Role of Physical Therapy on Functional and Patient-Reported Outcomes. Annals of Plastic Surgery,82(6), 661-666. doi:10.1097/sap.0000000000001680
National Center for Transgender Equality. (2015). Annual report of the U.S. Transgender Survey. Retrieved May 15, 2019, from https://transequality.org/sites/default/files/docs/usts/USTS-Executive-Summary-Dec17.pdf
Wpath. (n.d.). Standards of Care version 7. Retrieved May 15, 2019, from https://www.wpath.org/publications/soc