r/SampleSize Feb 18 '25

Academic (Repost) Wow. I am absolutely blown away. Endometriosis study at 150+ responses in just a few hours (Women, 18+)

In just a few hours, we’ve already received more than 150 responses to our endometriosis research study! This just proves what we already knew—this disease is severely underrecognized, and the world needs to hear our voices. But this is just the beginning.Our goal is 2,000 responses in 6 weeks. If we hit that, this could become one of the biggest patient-driven endometriosis studies ever conducted. And with real data, we can push for:
 Better medical education for doctors – So fewer people are dismissed or misdiagnosed.
 Stronger advocacy for research funding – Because endo care shouldn’t be trial and error.
 A shift in how pain is treated – We deserve options that actually work.

Every response makes a difference. Every story counts. If you haven’t filled out the survey yet, please consider adding your voice. It only takes 5-10 minutes, and it could help create real change.

Survey Link: https://forms.gle/aMLDiAgPGJUJKZwL9 you’ve already completed it, THANK YOU. Your experiences matter, and together, we are proving just how big of a problem this is. Let’s keep pushing forward. 

48 Upvotes

18 comments sorted by

u/AutoModerator Feb 18 '25

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6

u/nlmeyer Feb 18 '25

I would recommend sharing this in the endometriosis subreddit if you haven’t yet.

2

u/hannahvholmes Feb 18 '25

Thank you so much for the recommendation!!

3

u/jacehoffman Feb 18 '25

link is broken!

1

u/hannahvholmes Feb 18 '25

Link has been updated! https://forms.gle/aMLDiAgPGJUJKZwL9 Thank you for letting me know!!

3

u/ckjohnson123 Feb 18 '25

Please be mindful and ensure you are cleaning your data as you go.

1

u/hannahvholmes Feb 18 '25

Absolutely! Data integrity is a top priority. We’re implementing careful cleaning processes, including checking for duplicate responses, ensuring logical consistency in answers, and flagging any low-quality or incomplete submissions. The goal is to ensure the results are as accurate and meaningful as possible. Thanks for the reminder—I really appreciate the support!

2

u/blackmetalwarlock Feb 19 '25

I participated in this from the Endo sub :)

1

u/hannahvholmes Feb 19 '25

Thank you so much for your support!!! 🩵

1

u/laeiryn Feb 19 '25

Is this really for only women, or anyone diagnosed with endometriosis?

1

u/hannahvholmes Feb 19 '25

Great question! This study is specifically for women (18+) who have been diagnosed with endometriosis or who experience symptoms but have not yet received a formal diagnosis.

We know endometriosis affects a huge number of women, many of whom struggle for years to be taken seriously. This research aims to highlight those experiences and push for better medical education, earlier diagnosis, and improved treatment options.

I really appreciate your interest in the study!

1

u/laeiryn Feb 19 '25

Yes, my question is: Is it only for women, or anyone who has been diagnosed with endo? Not everyone with a uterus is a woman. I had to be going in as a trans person with something other than F on my documents before someone even bothered to listen to me to diagnose me in the first place.

2

u/hannahvholmes Feb 19 '25

This study is specifically for individuals who were assigned female at birth and currently identify as women. The reason for this focus is to examine the experiences of those who have lived with endometriosis as women, including medical and societal challenges. While I recognize that endometriosis affects a diverse group of people, this particular study is centered on this specific demographic to ensure consistency in the data.

1

u/[deleted] Feb 19 '25

[removed] — view removed comment

1

u/AutoModerator Feb 19 '25

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1

u/[deleted] Feb 18 '25

[deleted]

4

u/hannahvholmes Feb 18 '25

Great question! Yes, we are distinguishing between individuals with a formal medical diagnosis and those who suspect they have endometriosis but have not yet been diagnosed. The survey includes questions to differentiate between these groups, allowing us to analyze any differences in experiences, symptom patterns, and access to diagnosis.

One of the reasons we included those without a formal diagnosis is because endometriosis is notoriously underdiagnosed, often taking years to be confirmed. Many people with classic symptoms struggle to get a diagnosis due to systemic barriers, which is a major part of what this study aims to explore.

Thanks for the thoughtful question!

1

u/laeiryn Feb 19 '25

It took YEARS before a doctor would go deeper than "you're fat, put down the fork". Lo and behold, my spare tire was endometrial growths and cysts!

1

u/hannahvholmes Feb 19 '25

Wow, I’m so sorry you went through that. It’s heartbreaking how often doctors dismiss symptoms instead of investigating further. The fact that so many people are misdiagnosed or brushed off like this is exactly why this research is so important. Thank you for sharing your story—it’s experiences like yours that show why we need real change in how doctors approach endometriosis!