Seeking Diagnosis

Hi, I am 29 and currently in discussion with my GP about possible diagnosis of EDS HT.

I have hypermobile joints which in and of itself has just been one of those things but I also have uterine prolapse, which for someone my age who hasn't had children is very unusual according to my doctor.

I get quite a bit of seemingly unexplained pain in different joints, bruising that seems to have no explanation.

My GP thinks EDS is definitely worth considering as it puts quite a few puzzle pieces together,especially when family history of various issues is taken into consideration.

Any advice or information on how the process of getting a diagnosis has gone for you?

5 Replies

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  • The Ehlers Danlos support UK website gives lists of clinics...here is a link:

    ehlers-danlos.org/patient-s...

    The Hypermobility Association website also includes info on clinics:

    hypermobility.org/help-advi...

    If there are no EDH clinics near you and you want to attend a more local hospital: a'good' rheumatologist should be able to assess you.  But there are some that have more expertise re hypermobility than others...I'd imagine rheumatologist's who specialise in patients with vascular issues (Vasculitis, lupus etc) might have more expertise.  There are consultants in other disciplines specialising in hypermobility: eg dermatologists.  

    Am glad your GP is interested and supportive: this is a big plus

    Hope you'll let us know how you get on

    🍀🍀 coco

  • Thanks for the advice, I will definitely check out those links.  I have a gyne appointment coming up in a couple of weeks and my GP has said to mention the EDS then so hopefully this and a next appointment with her after can get the ball rolling.

  • Good thinking.  EDH is definitely relevant to all nether-region clinics (gyn, gastro, urology).  Your GP is a 🌟

  • She really really is.  She has been amazing in the last year.  I have had a long struggle getting help for anxiety and depression and when I started seeing her that struggle ended, because she made sure I got all the help and support I needed, from meds, to CBT and time off work.  It seems stupid but she was the first doctor to actually look through my notes, see all the times I had come in about anxiety and say I needed help, no other doctor had looked back at the history! She always knows everything you spoke about last time when you see her again.  I can't praise her enough, we really need more GPs like her.

  • clearly you've been reaching out to your surgery and hit the jackpot....luck is with you big time in this relationship: am sure you're treasuring it....there aren't many gps this interested & attentive...it's vvvv encouraging to have good news like yours.  i have a really good gp too, but our surgery has gone through big strains this year...which just makes me more aware how lucky i've been

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