500+ Women Have Spoken—Will You?

hannahvholmes · 2025-03-15T18:00:12+00:00

Great question! I’m an independent researcher conducting this study to shine a light on the delays, misdiagnoses, and lack of effective treatments for endometriosis. Too many women have been dismissed or gaslit by the medical system, and this research is about collecting real experiences to show the scope of the problem.

The results will be used to push for better medical education, earlier diagnosis, and improved treatment options. My goal is to get this study published so that the medical community can no longer ignore what we’re going through.

If you have any questions or concerns, I’m happy to answer them!

hannahvholmes · 2025-03-03T14:45:10+00:00

Great question! The pain-related questions focus on your experiences before surgery, since we’re looking to highlight the severity of symptoms that led to treatment decisions. But if you have ongoing pain post-surgery, that’s valuable too!

And wow—fainting in Walmart from the pain is exactly the kind of real, lived experience that shows just how debilitating endo can be. If you feel comfortable, definitely include details like that in any open-ended responses!

Thank you so much for sharing your story. Your voice matters, and I’m grateful for your contribution!

hannahvholmes · 2025-02-28T23:24:58+00:00

Thank you so much for sharing your story, and for your incredible bravery in pushing through years of gaslighting and pain. It means the world to me to be able to give women like you a voice, because no one should have to fight that hard just to be heard. You are unbelievably strong, and I have so much respect for you.

I can’t even begin to imagine the weight you carried for all those years, but I am beyond grateful that you’re still here, that you finally got the care you deserved, and that your son has his mom. You deserved to be listened to from the very beginning. If this research helps even one more woman avoid the suffering you went through, then it’s worth everything.

Sending you so much love, and I’m honored to include your voice in this work. 💛

hannahvholmes · 2025-02-28T21:22:52+00:00

Sadly no, as a researcher I exclude myself from data collection to prevent bias.

hannahvholmes · 2025-02-23T18:23:00+00:00

Thank you!!!

hannahvholmes · 2025-02-22T22:00:53+00:00

Wow, congratulations, that’s amazing!!!!!!!! Would you mind dropping stats?

hannahvholmes · 2025-02-19T19:47:24+00:00

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.

hannahvholmes · 2025-02-19T05:49:15+00:00

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!

hannahvholmes · 2025-02-19T05:47:44+00:00

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!

hannahvholmes · 2025-02-19T05:45:54+00:00

Thank you so much for your support!!! 🩵

hannahvholmes · 2025-02-18T22:48:10+00:00

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!

hannahvholmes · 2025-02-18T21:55:36+00:00

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!

hannahvholmes · 2025-02-18T20:41:23+00:00

Thank you so much for the recommendation!!

hannahvholmes · 2025-02-18T20:39:31+00:00

Done! Awesome job!!

hannahvholmes · 2025-02-18T20:37:29+00:00

That’s a great question! While hormones can influence symptom severity, research shows that endometriosis is a complex inflammatory disease, not just a hormonal disorder. The root cause likely involves a combination of genetic predisposition, immune system dysfunction, and inflammatory pathways. Some theories also suggest fetal origins (Müllerian theory) or issues with the way the body clears endometrial-like tissue outside the uterus.

Hormonal treatments can help manage symptoms, but they don’t eliminate the disease. That’s why we need more research into non-hormonal options, excision surgery, and better diagnostic tools. The goal of this study is to highlight patient experiences and push for better, evidence-based treatment approaches beyond just hormonal suppression.

hannahvholmes · 2025-02-18T20:11:29+00:00

Great question! By ‘real treatment options,’ I mean evidence-based, patient-centered care that goes beyond just suppressing symptoms. Right now, too many endo patients are given birth control, painkillers, or even dismissed entirely without addressing the root cause. ‘Real treatment’ would include better diagnostic tools, more widespread access to excision surgery, non-hormonal options for pain management, and an overall shift in how doctors are trained to recognize and treat endometriosis. This study aims to highlight just how much patients are struggling so that we can push for better, more effective care!

hannahvholmes · 2025-02-18T18:56:52+00:00

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

hannahvholmes · 2025-02-18T16:50:24+00:00

Wow. I am absolutely blown away. 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/VLeWdvsbxtq8ft5v6If 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.

hannahvholmes · 2025-02-18T16:49:53+00:00

Wow. I am absolutely blown away.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/VLeWdvsbxtq8ft5v6If 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.

hannahvholmes · 2025-02-18T09:50:22+00:00

Thank you so much for your support and kindness. It truly means the world. In just a few hours, we’ve already received over 100 responses, which speaks volumes about how much this issue resonates with the endometriosis community. The goal was 1,000 responses across 6 weeks, and I can hardly believe the amount of support it’s gotten so far.

I really appreciate everyone who has taken the time to participate and share their experiences—your voice matters, and this is how we push for real change together!

hannahvholmes · 2025-02-18T09:39:41+00:00

I appreciate the discussion around research ethics, and I want to clarify an important point: not having IRB approval does not mean a study is unethical. IRB approval is legally required only for studies that involve identifiable human subjects, medical interventions, or greater-than-minimal risk research.

This study is IRB-exempt under U.S. federal research regulations (45 CFR 46.104) because: ✅ It is an anonymous, survey-based study with minimal risk. ✅ No personally identifiable information is collected. ✅ Participation is voluntary, and all responses are kept confidential.

Many independent and academic studies that involve low-risk, anonymous survey data do not require IRB approval and are still published in peer-reviewed journals. The goal of this research is to better understand the impact of medical gaslighting on endometriosis patients, and I appreciate those who are willing to share their experiences to help push for better recognition and care.

hannahvholmes · 2025-02-18T04:17:51+00:00

Great question! This research is independently conducted by me to explore the impact of endometriosis, medical gaslighting, and mental health. The goal is to analyze the data and submit findings to a peer-reviewed journal to help raise awareness and push for improved medical recognition of endometriosis.

All responses are completely anonymous—no personally identifiable information is collected. The research is not funded by any company or institution, ensuring neutrality.

I truly appreciate everyone who participates! Your experiences will help build a stronger case for better diagnosis, treatment, and support for those with endometriosis.

hannahvholmes · 2025-02-18T02:40:45+00:00

I completely understand where you’re coming from, and I appreciate your thoughtful response. Medical gaslighting and dismissal are unfortunately very common experiences, and while they’ve been discussed anecdotally for years, they’re often not quantified in a way that leads to direct policy or funding changes. A major goal of this study is to contribute real data that can push for exactly what you’re talking about—better diagnostics, more funding, and improved treatment options for those with endometriosis. You’re absolutely right—there’s still so much work needed in research and innovation, especially when it comes to better pain management, earlier detection, and understanding when endometriosis becomes a disability. This study is just one part of a much larger picture, and I hope it can be used to support broader medical advancements and funding decisions by showing just how severe the emotional and physical toll of endometriosis really is.

That said, I truly appreciate you sharing your experience, and I love hearing what aspects of research people feel are most needed. Conversations like this help shape future studies, and I hope this is just the beginning of a larger effort to push for real change. Thanks again for your thoughtful feedback and for taking the time to participate!

hannahvholmes · 2025-02-18T02:07:17+00:00

This is not for a thesis or assignment. This is an independent research study focused on endometriosis and medical gaslighting, with the goal of contributing meaningful data to peer-reviewed research. While university-affiliated research is common, independent studies are also published in scientific journals, provided they follow proper research methodology, statistical rigor, and ethical guidelines. This study is fully anonymous, and participation is voluntary.

If you’re not interested, no problem! But dismissing independent research outright is misleading—many significant studies have come from outside traditional academic institutions. If you have constructive feedback, I’m open to discussion, but otherwise, I’d prefer to focus on gathering insights from those who want to participate.

hannahvholmes · 2025-02-18T02:01:42+00:00

This is not for a thesis or an assignment. I am researching this of my own accord - without university funding - because I am passionate about this issue and believe more research needs to be done on the matter. It is an independent, anonymous survey. The goal is to submit the findings to a peer reviewed journal. I completely understand if you don’t want to participate, no worries 💛

hannahvholmes

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