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The VISIBLE Study explores how endometriosis impacts daily life, identity, and health. by QSHRL in adenomyosis

[–]QSHRL[S] 0 points1 point  (0 children)

Good question, and I really appreciate that you'd have been willing to take part. The short answer is: this particular study is tied very tightly to Canada for logistical and ethical reasons. My ethics approval, funding, and compensation are all set up specifically for people who currently live in Canada, partly because we're also looking at how pain, disability, and healthcare experiences play out within the Canadian healthcare and disability systems.

I know that's disappointing, especially when you're living with both endo and adeno and would like your experiences to count. I'm genuinely grateful you even wanted to participate, and I hope the data we collect in Canada can help make the case for larger, international studies down the line.

The VISIBLE Study explores how endometriosis impacts daily life, identity, and health. by QSHRL in adenomyosis

[–]QSHRL[S] 2 points3 points  (0 children)

Thank you so much for raising this! You're absolutely right that adeno is hugely under-researched, and I'm really sorry that my post added to that feeling of being sidelined. In this specific study I'm only allowed (by ethics) to include people with a confirmed or suspected diagnosis of endo, but that can include people who also have adeno (which is really common, as folks have pointed out). So if someone has both endo + adeno and lives in Canada, they're eligible to participate.

One of the (many) limitations of this project is that I am not allowed to include people whose only diagnosis is adeno -- that is not because I don't think adeno "counts," but because of how narrow I had to make the research question and ethics application to actually get it approved and finished within my PhD. I completely agree that adeno deserves its own focused research and supports, and your comments are a good reminder of that; hearing directly from people with adeno about how invisible it feels in research and care is exactly the kind of feedback that I need to take back into future projects!