Does anybody else have Ehlers Danlos?

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I have just been diagnosed with Ehlers Danlos which explains bowel and bladder prolapse from a young age (plus forceps birth trauma).

i had an a&p repair last November and bladder has now failed and is now stage 1.

does anybody else have prolapse and Ehlers danlos? I'm not really sure what it means for success of any future repairs, which its looking very likely I will need. Urogynae said will most likely need bio mesh and laparospic repair next time 

any other suggestions, experiences most appreciated!

Thanks!

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4 Replies

  • Posted

    Were you told you have lose ligaments?

    I have spinal problems and physio said I had very lose ligaments.

    I also had a forceps delivery,which I Put down to the development of a Rectocele which I have just had surgery for.

    I never associated it with the lack of muscle strength,when struggling to have a bowel movement.

    Makes you think.....

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    • Posted

      Hi Suzy, yes I have loose ligaments and various hypermobile joints, shoulder, knee, elbows, toes etc. 

      It was my urogynae who suggested I had a connective tissue disorder but left it at that. I did some research, read about ehlers danlos and realised I had numerous symptoms, Hypermobility, prolapses, loose skin, digestive problems including a very slow bowel etc, so I paid privately to see a specialist who confirmed the diagnosis. 

      It might be worth you investigating further. There is no cure but at least it helps you piece things together and can start to plan for any future surgeries. Good luck.

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  • Posted

    There was a woman named Chris who was very active on the forums last fall and I thought she had a connective tissue disorder, though I may have it wrong.  Her repair failed but she is using a pessary and seemed very happy with it.  

    I dont have ehlers danlos but I have some symptoms and was tested for it and read up a lot on it when trying to figure out some other issues.  Best of luck to you and feel free to pm me if you want to chat or need some help finding the old posts.  CHris is really nice and she might be a going through something similar.

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