Symptoms suggesting EDS

[CC0507]

Hi I’m 24 years old and have a number of symptoms suggesting I have EDS but was brushed off by the GP that saw me because I have a history of health anxiety.

Some of the symptoms I’m experiencing are:

- bladder prolapse (I’ve never had any pregnancies)... I’ve had bladder leakage for a few months and I’ve been referred for an ultrasound but I now have a bulge coming through that wasn’t there before

- small papules on my heels (can’t remember the name of them!)

- clicking joints

- aching in my joints such as hips, particularly after walking a while

- grinding in my right jaw joint

- greyish patch on my sclera in my right eye

Does this sound like EDS?

I’m so worried as everywhere I read it’s talking about EDS leading to disability and I’m so scared this could be the case if diagnosed I lead a generally happy healthy life just now and I’m terrified of that changing!

[1footinthegrave]

hi, I read your list, first you anxiety is a symptom as well and all the other things you list ever bladder pocket in wall to connected to hypermobile EDS, your need to ask for a referral from your GP, try this site for info, The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines and on YouTube just but in EDS and lot of people with EDS and conferences by medical professionals, hope this help good luck.

[CC0507 in reply to 1footinthegrave]

Thanks for taking the time to reply to my query! I am already waiting on an ultrasound for my bladder so I’m sure that will pick up the prolapse and they’ll have to take the right steps. I will be calling this week to try get a GP appointment - im showing a number of symptoms and something just doesn’t seem right.

Thanks again!

[wishywashy]

Hi, sorry you are feeling so scared. Undiagnosed EDS was what led to disability for me! However my daughter who was diagnosed relatively young at age 22 knows her limitations, swapped career to focus on a more office based role with not too much repetitive tasks and will probably be ok unlike her poor old mother!

Take care

[Hidden]

I have lived with it since early childhood , Almost 72 years . Although i only very recently found out what was causing so many diverse problems . Despite eds i have had a full and active life .6 children in ten years . Yes i have struggled at times but you haveto learn to go with the flow . Do what you can when you can and if you can't...read a book , watch tv or just see the grass grow . Good luck