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Margot

832d

Does anyone diagnosed with hEDS have any prolapses? I have an enterocoele, rectocele and cystocele and I’m 31, no kids, and no prior surgeries so it has been frustrating to hear “I’ve never seen this” and “I don’t know why this happened”.

Top reply
    • Margot

      830d

      @300gecs from what I understand, they can’t do a genetic test for the hEDS type, only the in clinic hypermobile testing. I’m sorry you’re struggling with these too.

    • Margot

      830d

      @300gecs from what I understand, they can’t do a genetic test for the hEDS type, only the in clinic hypermobile testing. I’m sorry you’re struggling with these too.

    • 300gecs

      830d

      I'm not entirely sure if I have hEDS or another type, I'm currently only clinically diagnosed and still waiting for the tests to come back, but I'm 18 and have had visceroptosis and a cystocele since I was 16. It's frustrating, I understand

    • Margot

      832d

      @UnluckyUnicorn that’s helpful thank you. I was wondering if it was me having something very strange, or just the doctors/surgeons not being education on hEDS.

    • YumYumRoll

      832d

      No I’m fact I have hypertonic pelvic floor dysfunction !

    • UnluckyUnicorn

      832d

      I personally haven’t but I heard that’s common for hEDS to cause prolapses. I’ve known others who were in similar situations as you with hEDS so maybe the doctors are just not educated on the condition?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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