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Margot's Post

Margot

Updated 10mo ago

Prolapses with hEDS diagnosis

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”.

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UnluckyUnicorn

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?

YumYumRoll

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

Margot

@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.

300gecs

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

@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.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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