Scotland based EDS and bladder specialist

[tdoll]

Hi,

i think I might be asking too much, but is anyone aware of a specialist in gynae probs and an interest in EDS??

I've previously had a TVTO , and I don't want anymore surgery really, so want to find the best person this time that will take into account my EDS.

Many thanks

[mia250471]

Hello there! I'm from Scotland too . Where about r u? What's a tvto? I have eds, severe endometriosis, bowel and bladder issues and am having tests and referrals ATM . I stay in fife.

[familylove in reply to mia250471]

Hi there, I just commented on this post but didn't see your reply to original post....I also have EDS and I am also in Fife and wondered where you are? I am in Cowdenbeath.

Take care 😊

[mia250471 in reply to familylove]

Hello familylove,

Small world! I'm currently in Crossford but was in Kingseat before that. We're house building ATM and will be moving to Torryburn when it's eventually finished. I too paid private and saw dr Helen Harris who also runs a rheumatology clinic st Victoria hospital. She diagnosed me back in April after I went to her thinking I had rheumatoid arthritis. I'm not as severe as some, I'm 45 and no longer have private health insurance so have spent the last year trying get my pain under control. I've been seeing pain clinic but it's pretty rubbish tbh. What r ur main problems? X

[Kinon in reply to mia250471]

I’m Fife too, Kirkcaldy! I have fibromyalgia and hEDS, only diagnosis from docs recently though, I’m waiting to see the genetics specialist just now before I really believe in the diagnosis. My doctors great but she admittedly just doesn’t have enough information available to her. I’d love to listen to some other people’s experiences and maybe get some advice on what the heck to do!? Lol

[familylove]

Hi , I'm also in Scotland (fife) and was told there is no longer a specialist clinic in Glasgow because when the consultant who ran it retired noone wanted to take it on! I have also desperately been trying to find someone with specialist background with no avail. It really saddens me that there still is a postcode lottery because there is a clinic in London but as far as I'm aware we would need to pay private to be seen. My gp tried to refer me to rheumatologist but they wrote back saying they didn't have the capacity to see "connective tissue disorders" . Funnily enough though I am so desperate I paid private to be seen and was then sent genetics and I am now waiting on genetic testing results.

I really hope you find someone who can help you with your bladder issues. I will be interested to hear on this thread if someone else comes up with someone they know who has an interest in Scotland willing to see people with EDS.

Take care and good luck 😊

[diagnosey]

I am in Dunfermline and have been convinced for years that my kids and I have vascular eds. After years of being fobbed off and told "it is just a fancy name for hypermobility," a new doctor started in our surgery and actually suggested it to us! To say I was shocked, is an understatement but I was troubled too because nobody wants to have this, especially vascular type and it is even worse to think my kids have it. Anyhow, she is now referring me and kids (separately) to neurology... I know this is the "wrong" place but I'm hoping that it will make a slow moving ball, roll faster! If I find a specialist along the way, I will be sure to let you all know! Happy to discuss in meantime.

[mia250471 in reply to diagnosey]

Hi diagnosey,

Small world eh?! Sorry to hear uv also been having trouble with getting diagnosed too.. I initially was told it was a fancy name also. Here's hoping you get on better with ur referral. Take care Mia x

[Melava]

Hi ladies. Are any of you still following this post? I am in dalgety bay and have EDS3/Von willebrands/endometriosis/fibromyalgia/pelvic organ prolapse/raynauds/multiple malabsorption issues and reactive hypoglycaemia (along with other things 🙈😥) would be good to connect with others locally. Xx