Endo Fact #16

From the ESHRE** Guideline for the Diagnosis and Treatment of Endometriosis:

… there is often a delay of up to 12 years between symptom onset and a definitive diagnosis.

Yep. Sounds about right.

Calendari Atles catala

**European Society for Human Reproduction and Embryology

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4 comments on “Endo Fact #16
  1. kaberett says:

    Every time I hear this statistic I take a deep breath and think THANK FUCK IT WAS ONLY SIX YEARS FOR ME.

    I’m very well-informed and surrounded by people who will come to medical appointments to advocate for me. I’m also lucky enough to have access to private healthcare as well as NHS care, else that delay would have taken longer.

    • Tori says:

      Yup, the diagnostic delay really angers me because:

      1. A lot of it is avoidable. I mean, I get that endo is tricky to diagnose, but I spent so much time hearing various incarnations of, “Try X or toughen up and deal,” from classmates, teachers, health care providers (and actually especially health care providers).
      2. One problem with endo is that it can cause permanent harm inside the body even if the endo itself is later diagnosed and removed completely. Diagnostic delay increases the time available for said irreversible harm.
  2. kuangning says:

    Yes, that’s about right, especially if symptoms show up at menarche (as mine did) and the kid then has to wait until adulthood because the parents don’t advocate for the kid. My mother was certain I was just being overly dramatic about pain so bad that it regularly caused me to pass out and throw up, the first two days of my period, every single month. “Everybody has pain with their periods; suck it up.”

    • Tori says:

      Quite true. I was in the somewhat different circumstance of having parents who did advocate for me at the onset. However, enough doctors told us the “suck it up and deal” line — and independently, she didn’t know enough about endo to respond to that — that she started telling me, “it’s normal” — but only after so many health care providers told her the same thing.

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