Genetic Medicine Referral

[Details]

Hello All.

I recently had an appointment at a gynaecologist who told me it is not common for women who have never had children to have a prolapse. He proceeded to pull at my skin and twist my arms before saying I had EDS. I didn't know what EDS was. He told me to 'look it up'.

The first thing I noticed when googling were pictures of people who all looked like me with dark circles under their eyes. I have always had these. I have a prolapse, hiatus hernia, chronic constipation, chronic migraines, severe fatigue and pain. I have chnic sinus problems, curved spine varicos veins since childhood flat feet and can't walk straihgt. I can't get shoes to fit me and my ankles are very weak and foot turns in. I bruise extremly easily and have smooth skin. I get dizzy when I stand up.

I haven't got any 'party tricks' apart from wiggling left ear and despite lots of falls when walking I'm not hypermobile.

Anyway I told the GP what the gynaecologist said and he dismissed me saying 'why would a gynaecologist say that' and 'that's a rare disease why would YOU have that? I had to wait until he received clinic letter. I pushed and pushed. Eventually he referred me to a rhemotologist who rejected the referral. I have now been sent to Manchester Royal Infirmary Dept of Genetic Medicine.

I rang an EDS helpline for advice and they were very dismissive and said I couldn't have EDS if not hypermobile which I'm not.

I am very unwell and my life has been ruined by my health problems and constant hospital appointments which is killing me as I'm there all week almost every day sometimes twice a day. All are a waste of time and I am treated like a hyperchondriac. I also got diagnosed with autism a couple of years ago and have mental health problems. I get no help with any of these and have no family/friends either.

[whippykisses]

Hi, please please ask to be referred to Dr Pauline Ho at Manchester Royal. Dr Ho works in Rheumatology and I an eds specialist. If you have to, then pay for a 1st consultation its worth it. Dr Ho diagnosed me. I thoight I wasn't hypermobile, it turns out im massively hypermobile. We, as patients dont realise this,as we are born this way . Good Luck .

[Details in reply to whippykisses]

Thanks. I will look into this. That's helpful.

[Details in reply to Details]

Can you self refer or does GP have to do it?

[Saassii]

I'm so sorry sweetheart. Not everyone is so unfeeling. Much love to you. Look up Mast Cell Activation Syndrome and see if any symptoms fit. Also look up Postural Othostatic Tachycardia Syndrome and Dysautonomia, they may also shed some light on what your condition possibly is. I'm so sorry you have not easily found compassion. This IS a good place to be for that, many of the members have been a rich blessing to me and most have encountered similar hardness from others as have you, which is likely why we're all here supporting each other. I've prayed to Jesus to help you. Add me as a friend here if you like. You definitely have a friend here xxxx

[Details in reply to Saassii]

Thanks. That's a lovely thing to say.

[cyberbarn]

There are several different subgroups of EDS, some have a greater degree of hypermobility than others, and of course as we get older we become less hyper mobile as well. And additionally there are other connective tissue disorders too. I think it is a good thing that you have been referred to genetics, as hopefully they will get to the bottom of this. So hang in there, you are on the right track.

[Details]

Thanks. That's kind of you. I was put off because the EDS helpline said the genetics referral was 'wrong thing to do'.