Share your Fibroids Story
Earlier this month, I wrote about my colonoscopy experience in pretty great detail — in part to help people with medical anxiety get a textured understanding of what to expect, but also as a sort of service journalism to encourage people to schedule their own colonoscopies if they have family history or are over the age of 45, because a lot of people. Talk about the thing, and people think about the thing. I want to publish a follow-up featuring people's experiences with fibroids, which are chronically underdiagnosed, ignored, or generally dismissed — and are significantly more common amongst Black people with uteruses, who often have to deal with compounding medical racism in order to get them diagnosed and adequately treated. Sharing your story here (with as much anonymity as you'd like) will hopefully help others identify symptoms and be better advocates for themselves within a very broken medical system.

[Here's the colonoscopy piece, for reference: https://annehelen.substack.com/p/welcome-to-colonoscopy-land]

I ask for email addresses so that I can ask clarifying questions if needed, but will not disclose your identity in any way. Responses will be lightly edited and condensed for length; for an example of what this looks like in practice, here's a recent piece on family estrangement: https://annehelen.substack.com/p/what-you-dont-know-about-family-estrangement?utm_source=url


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Email *
Please share your first name — and a pseudonym, if you'd like to use one
Please share your identity information,: age, race, gender identity, and anything else you feel pertinent to share
Do you have any family history of fibroids (that you know of)?
Describe the beginning of your path to diagnosis. When did you feel like something was off, or wrong? (Did you feel like anything was off or wrong?) If you can be detailed in your description, that's helpful. Who helped you realize that what was happening was different than, say, a "normal" period?
Describe what it took to get diagnosed. Did you encounter any form of race or size based discrimination? Did you have to change doctors? What sort of language and approach actually convinced your doctor there was a problem — and what happened next?
People often really want to know specifics of how a diagnosis and treatment is or is not covered by insurance. What's your experience with coverage? You can broad or very detailed here when it comes to $$$.
If a friend came to you describing symptoms of fibroids, what would you tell them to do first?
How could the medical system be changed to better serve people with fibroids? Can be a small detail or something systemic — what's your ideal?
If there's any other advice or information you'd like to share that hasn't been covered in the previous questions, here's your space.
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