Qualitative Study Proposal: Experiences of Menstrual Pain and Physician Dismissal Among Undiagnosed Young Adult Menstruators

Background and Literature Review

Menstrual pain, also known as dysmenorrhea, is a common yet inadequately addressed health concern. Estimates of the prevalence of menstrual pain among the reproductive-aged population vary widely, but most studies estimate that between 50-90% of menstruators experience some level of pain with their menses (McKenna & Fogleman, 2021). Dysmenorrhea exists on a spectrum of severity; for some, it can be a slight annoyance, yet for others, the pain is debilitating and affects their ability to fully participate in daily activities such as school, work, and social engagements (McKenna & Fogleman, 2021; Sima et al., 2022). Unfortunately, menstrual disorders remain undiagnosed and inadequately managed due to the lack of recognition of the significance of dysmenorrhea by doctors, who often dismiss women’s symptoms (Holst et al., 2022). These all-too-common instances of physicians invalidating a patient’s reproductive concerns without proper medical workup are known as medical gaslighting (Ng et al., 2024). Medical gaslighting of patients experiencing severe menstrual pain is sometimes recognized as a public health problem as it poses a significant burden and disproportionately affects certain groups (McKenna & Fogleman, 2021)

While the vast majority of doctors do not intend to deceive their patients and provide suboptimal care, medical gaslighting nonetheless occurs due to “physician ignorance, implicit bias, or medical paternalism” (Ng et al., 2024). Medical gaslighting can occur in various clinical contexts, leading not only to delays in definitive care of the patient’s presenting problem but also profound psychological impacts on the patient (Ng et al., 2024). A recent systematic review by Khan et al. (2024) synthesized existing research to demonstrate common themes among women who have been medically gaslit by any physician. They found that medical gaslighting can make women feel frustrated, anxious, distressed, isolated, and alone, and some even feel that their experiences were a “denial of humanity” that exacerbates their trauma (Khan et al., 2024). Some women report that their experiences cause them to lose trust in the healthcare system and forgo seeking further treatment (Khan et al., 2024).

A growing body of research demonstrates the consequences of being medically gaslit, specifically among women diagnosed with endometriosis, a condition that often results in severe menstrual pain. One meta-analysis by Petterson & Betero (2020) found that women are highly attuned to the negative experience of being medically gaslit regarding their endometriosis-related pain. They report feelings including anxiety and distress during and after these interactions but often do not realize how this dismissal impacts their daily lives (Pettersson & Berterö, 2020). Another study found that young women’s experiences with medical gaslighting in the context of their endometriosis make them feel like a burden, which can foster feelings of isolation and distrust of physicians (Wren & Mercer, 2022). Other research demonstrates that menstrual gaslighting leads women to feel blamed for their experiences and as if they are “crazy” (Ellis et al., 2023).

Fewer studies have examined menstrual gaslighting among young women with menstrual pain not yet diagnosed with any disorder of menstruation. Mohammed et al. (2023) found that this group experienced similar feelings of anger and isolation when dismissed by doctors. Another study found that the dismissal of menstrual pain had a profound emotional impact on women then who felt that they were on their own to find a solution to their pain (Munro et al., 2024). No study has examined how being dismissed by a physician regarding menstrual pain impacts undiagnosed women’s daily lives or the likelihood that they will seek future healthcare.

The aforementioned studies demonstrate that menstrual pain is prevalent, distressing, and has a significant impact on quality of life and that medical gaslighting leaves patient concerns inadequately managed. These issues exacerbate the distress experienced by millions of women. Much of the literature exploring the phenomenon of the medical dismissal of menstrual pain focuses on the experience of those who have received a diagnosis. From this evidence, we know that medical dismissal of menstrual pain can lead to psychological distress and profound distrust in the medical system. However, less is known about the experiences of those who were never able to get a diagnosis for their menstrual pain. The experience of patients who resigned themselves to finding care in a medical system not designed for them may differ significantly from those who can get a diagnosis. The experiences of those who are able to get a diagnosis, even a delayed one, may differ from those who are not yet diagnosed or may never be able to get a diagnosis. Therefore, the purpose of this proposed qualitative study is to explore how undiagnosed young adults’ quality of life is affected by the experience of a doctor dismissing their menstrual pain. This study’s research questions include:

RQ1: In what ways does being medically gaslit when seeking care for menstrual pain affect undiagnosed menstruators’ quality of life?

RQ2: How does the dismissal of menstrual pain affect menstruators’ likelihood of them seeking future menstrual treatment?

RQ3: How does the dismissal of menstruators’ pain affect their outlook on healthcare and the likelihood of them seeking medical care for issues other than menstruation?

Method and Sampling

The primary data collection method for this study will be interviews. I am seeking an in-depth exploration of how being medically gaslit by doctors about menstrual pain affects young women. I want to gain a rich understanding of how these experiences impact their daily lives and influence their future interactions with the medical system. This objective necessitates a qualitative research approach. I chose interviews because they yield rich data and allow the exploration of topics in the most depth (Mahoney, 1997). Interviews are the most common qualitative research method in healthcare because they provide the opportunity to explore patient experiences in their own words (Pyo et al., 2023). Interviews will afford me the opportunity to explore participants’ perspectives on my topic while also providing them with the opportunity to talk about their experiences.

I will conduct face-to-face, semi-structured interviews. I am prioritizing face-to-face interviews because they facilitate rapport building between the interviewer and interviewee, which will be essential as I will be asking about personal and potentially sensitive topics (Pyo et al., 2023). I chose a semi-structured format because it will allow me to facilitate the conversation so I can gather data for my study, but at the same time, this approach will allow for greater flexibility compared to a structured interview questionnaire (Mahoney, 1997). I plan to deviate from my interview guide as the conversation requires, asking probing questions to elicit reflective responses from the participants. I want to give the participant control to steer the conversation so it is not only informative for my research but also provides them with an outlet for discussing their negative menstrual healthcare experiences.

I recognize that individual interviews have the disadvantage of being time-consuming to conduct and analyze as they produce a large amount of information (Mahoney, 1997). However, I chose this method because it will be the best fit for my study’s purpose. I picked interviews as opposed to focus groups, which would allow me to talk to more participants at once for a few reasons. First, my goal is to learn about individuals’ experiences of being medically gaslit rather than how participants interact with each other over this shared experience. Additionally, many participants may not feel comfortable talking about their menstrual health and negative medical experiences in a room full of strangers. With individual interviews, I can attempt to make participants more comfortable being open about their experiences and feelings.

I will use a combination of several purposive sampling techniques for my study. I am selecting Stony Brook Undergraduate students as the population from which I will sample participants. This population will be convenient and efficient for me as the University is in an accessible location and contains a population of diverse young women who menstruate. My primary sampling technique will be criterion sampling, which requires all cases to meet specific predetermined criteria (Kuzel, 1992). Criterion sampling is a useful technique for understanding information-rich cases (Cohen & Crabtree, 2008). The main criterion that I will be sampling based on is the experience of being dismissed by a doctor regarding severe menstrual pain. This will enable me to understand the phenomenon of how being medically gaslit affects young menstruators. I will administer an electronic questionnaire to identify eligible participants for my study and recruit them for the interview process. They will be eligible if they have severe menstrual pain (rated pain at least five on a 10-degree scale during most periods), have been to at least one doctor to address their menstrual pain, and have felt dismissed by that doctor. This will help me identify participants who may potentially be a good fit to answer my research questions. The full inclusion and exclusion criteria for this study are as follows:

Inclusion criteria: any identifying gender with an intact uterus, aged 18-25, experience severe menstrual pain during most periods (5/10 subjective interpretation), have discussed this issue with at least one medical provider, and have felt dismissed by this medical provider.

Exclusion criteria: have been diagnosed with endometriosis, uterine fibroids, adenomyosis, polycystic ovarian syndrome, or pelvic inflammatory disease; have a history of pelvic surgery including but not limited to endometriosis or fibroid excision and hysterectomy; have received any pharmacological treatment for menstrual pain not including ibuprofen, acetaminophen, oral contraceptive pills, the hormonal IUD, Depo-Provera shot, or Nexplanon implant; are pregnant.

I will also employ the snowball sampling method to recruit additional participants if I cannot find an adequate sample using the questionnaire and criterion sampling method. Snowball sampling, also known as chain sampling, involves using selected cases as informants who can help identify further cases that would be a good fit for a study (Cohen & Crabtree, 2008). I will use snowball sampling by encouraging participants to recommend others with similar menstrual gaslighting experiences who would be willing to participate in the study (Kuzel, 1992). Participants may be aware of friends, family, or colleagues who have had similar experiences being dismissed by a doctor for menstrual symptoms. I will aim for saturation to ensure an adequate sample size. Kuzel (1992) suggests that 5-8 cases are sufficient for a homogenous sample, but I will aim for at least ten interview participants.

Reflection and Positionality

As a future reproductive healthcare provider, I am very passionate about gynecological health. I recognize how underreached and underfunded benign gynecological conditions are, including menstrual disorders, and I am frustrated with the blatant misogyny that prioritizes women’s reproductive capacity over their well-being. I am fortunate enough not to experience severe menstrual pain myself, though I have been dismissed by doctors during encounters for health issues outside of my gynecological care. Additionally, I have relationships with several people who experience severe dysmenorrhea and have been dismissed by doctors when trying to obtain treatment. I want to conduct this study to learn how medical gaslighting affects young women seeking treatment for menstrual pain because I am preparing myself to be a better advocate both in and out of the office for my future patients experiencing menstrual pain.

I am coming into this research process with extensive background knowledge not only on the clinical side of dysmenorrhea but also on how menstrual disorders are a neglected problem in the field of gynecology. I will be careful to probe my participants about their experiences of being dismissed by doctors but also not ask leading questions that may color their responses with my own bias. I will be careful not to “put words in their mouth” and make assumptions about how being dismissed has affected them. At the same time that I am frustrated by many doctors’ mistreatment of women and their menstrual concerns, I am also a healthcare provider in training. I will balance my frustration with many physicians and how they operate within the medical system with my appreciation for all that healthcare providers sacrifice to care for patients. I will attempt to be aware of implicit confirmation bias that may attempt to sway me into only confirming my preexisting beliefs. I must attempt to maintain a neutral stance on physicians during my interviews, neither villainizing nor defending them. I will not ask leading questions and instead ask open-ended questions about how doctors have responded to patients’ concerns.

As a provider of women’s health, I recognize that I am comfortable talking about personal and intimate topics with patients. However, I must keep in mind that not all of my participants will be at ease talking about such an intimate aspect of their health and their negative experiences with the medical system. I must recognize that some participants may become emotional or uncomfortable in the interview process. I will give them space and ensure that they understand they can discontinue the interview at any point without any consequence. I will work to establish rapport throughout the interviews, working up to more sensitive questions as my participants become more comfortable, and I will not make assumptions about their comfort level.

References

Cohen, D., & Crabtree, B. (2008). Criterion Sampling. Qualitative Research Guidelines Project: Robert Wood Johnson Foundation. http://www.qualres.org/HomeCrit-3814.html

Ellis, K., Munro, D., & Wood, R. (2023). Dismissal informs the priorities of endometriosis patients in New Zealand. Frontiers in Medicine, 10, 1185769. https://doi.org/10.3389/fmed.2023.1185769

Holst, A. S., Jacques-Aviñó, C., Berenguera, A., Pinzón-Sanabria, D., Valls-Llobet, C., Munrós-Feliu, J., Martínez-Bueno, C., López-Jiménez, T., Vicente-Hernández, M. M., & Medina-Perucha, L. (2022). Experiences of menstrual inequity and menstrual health among women and people who menstruate in the Barcelona area (Spain): a qualitative study. Reproductive Health, 19(1), 45. https://doi.org/10.1186/s12978-022-01354-5

Khan, K., Tariq, N. ul S., & Majeed, S. (2024). Psychological impact of medical gaslighting on women: A systematic review. Journal of Professional & Applied Psychology, 5(1), 110–125. https://doi.org/10.52053/jpap.v5i1.249

Kuzel, A. J. (1992). Sampling in qualitative inquiry. In B. F. Crabtree & W. L. Miller (Eds.), Doing qualitative research (pp. 31–44). Sage Publications, Inc.

Mahoney, C. (1997). Common Qualitative Methods. In L. S. Joy Frechtling (Ed.), User-Friendly Handbook for Mixed Method Evaluations. National Science Foundation.

McKenna, K. A., & Fogleman, C. D. (2021). Dysmenorrhea. American Family Physician, 104(2), 164–170. https://www.aafp.org/pubs/afp/issues/2021/0800/p164.html

Mohammed, S. S., Gagnon, M. M., & Cummings, J. A. (2024). “You’re not alone”: How adolescents share dysmenorrhea experiences through vlogs. Qualitative Health Research, 34(6), 540–551. https://doi.org/10.1177/10497323231216654

Munro, C. B., Flanagan, M., Moussaoui, D., Kite, L., & Grover, S. R. (2024). Missing and dismissing the impact of periods. Outcomes of focus groups of teens with period concerns. Women’s Health (London, England), 20, 17455057241303004. https://doi.org/10.1177/17455057241303003

Ng, I. K., Tham, S. Z., Singh, G. D., Thong, C., & Teo, D. B. (2024). Medical gaslighting: A new colloquialism. The American Journal of Medicine, 137(10), 920–922. https://doi.org/10.1016/j.amjmed.2024.06.022

Pettersson, A., & Berterö, C. M. (2020). How women with endometriosis experience health care encounters. Women’s Health Reports (New Rochelle, N.Y.), 1(1), 529–542. https://doi.org/10.1089/whr.2020.0099

Pyo, J., Lee, W., Choi, E. Y., Jang, S. G., & Ock, M. (2023). Qualitative research in healthcare: Necessity and characteristics. Yebang Uihakhoe Chi [Journal of Preventive Medicine and Public Health], 56(1), 12–20. https://doi.org/10.3961/jpmph.22.451

Sima, R.-M., Sulea, M., Radosa, J. C., Findeklee, S., Hamoud, B. H., Popescu, M., Gorecki, G. P., Bobircă, A., Bobirca, F., Cirstoveanu, C., & Ples, L. (2022). The prevalence, management, and impact of dysmenorrhea on medical students’ lives-A multicenter study. Healthcare (Basel, Switzerland), 10(1), 157. https://doi.org/10.3390/healthcare10010157

Wren, G., & Mercer, J. (2022). Dismissal, distrust, and dismay: A phenomenological exploration of young women’s diagnostic experiences with endometriosis and subsequent support. Journal of Health Psychology, 27(11), 2549–2565. https://doi.org/10.1177/13591053211059387