Embrace & Advocate

Dani Podolin

When I was 16 years old, I was diagnosed with MRKH Syndrome. Thankfully, with a wonderful support system and access to amazing resources such as Beautiful You, I was able to embrace my diagnosis as a part of who I am and focus my energy into being a part of this community. As a senior in college at Kennesaw State University in Georgia, I was given the option to conduct my very own research study as my senior thesis project. I jumped at this opportunity, as I knew wholeheartedly that I wanted to dedicate my study to advocating for women with MRKH. Though there are many elements of this diagnosis that can be traumatizing for the women diagnosed, I wanted to focus on the impact of negative experiences within the healthcare system on our emotional states. I see so often, and have experienced myself, the awful treatment some of us face as a result of the disclosure of our diagnosis. Being asked the question, “When was your last menstrual cycle” at nearly every medical appointment makes it unavoidable to disclose our condition. Upon disclosure, we are often met with confusion, not understanding what our condition is and what it means, or even insensitive reactions such as “You are so lucky!” or “I don’t know how to put that into my system.” It was important to me to call attention to these experiences in hopes of improving trauma-informed care for women with MRKH. I recruited participants for two weeks and had a total of 210 amazingly strong women from all over the world fill out my survey. When I began analyzing my data, I developed three hypotheses that I hopedmy results would prove: (1) people with MRKH experience a degree of retraumatization at their medical appointments, (2) this experience is universal, not just limited to the US healthcare system, and (3) people with MRKH will experience higher levels of doctor avoidance than the general population, which is estimated to be about 31%. My results supported all three hypotheses.

One part of my survey invited participants to respond to questions regarding their experiences at medical appointments. I asked a series of seven questions such as, “Have you ever had to explain what MRKH is to a provider,” and “Have you ever received an insensitive and/or offensive reaction to the disclosure of your diagnosis,” to which participants would answer yes or no. Figure 1 shows that the majority of participants indicated experiencing at least four of the given scenarios, which provides a basis for how prevalent these experiences really are. In Figure 2, you will see the comparison between average negative and positive emotion severity scores, in response to the given scenarios, for participants receiving healthcare in the United States and Internationally. This graph shows the negative emotion severity scores greatly outweighing the positive emotion scores, and that is true for both US and International participants. Those results address my first two hypotheses. Regarding healthcare avoidance, I discovered that 92% of my sample reported avoiding the doctor some percentage of the time, even when they think they should go. Further, 89% of those people indicated that some percentage of their avoidance is due to reasons related to MRKH. Those statistics support my third hypothesis. All in all, this research provides a strong foundation for the need for improved trauma-informed care for women with reproductive conditions, such as MRKH. My goal with this research is primarily to spread awareness about MRKH in hopes of gradually increasing sensitivity towards women with this condition.

I have spent the last three weeks presenting this research at regional and national research conferences. One question I often got asked is how I got into this subject matter, which is when I disclose that I was diagnosed at age 16. For the most part, I’ve only received respectful reactions to that, which I am very thankful for. Some people

I want to extend a huge thank you to all of the women who participated in this study. So many of you shared very vulnerable stories with me, and I am so appreciative of your willingness to do so. I hope this research makes you feel seen and heard. I also want to thank the wonderful team at Beautiful You for promoting my study while I was recruiting participants and for giving me a platform to share my results and connect with my community. Now that I have finished presenting my research, my next step is getting published! I am so excited to keep you all informed with my progress. Thank you, thank you, thank you!

Figure 1. Reported number of healthcare experiences related to MRKH (out of 7). 

Figure 2. Positive and negative emotional severity scores by location.

Figure 1. Reported number of healthcare experiences related to MRKH (out of 7). 

Figure 2. Positive and negative emotional severity scores by location

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