At a loss on what to do
21y Male. Sort of a long post here.
Hi there.
I was diagnosed with hypermobility spectrum disorder in December. Ever since I was around 15 I’ve had a varicose vein on my left medial calf that travels up to my lower inner thigh on my left leg.
For years I was confused on what could cause this as both my parents don’t have varicose veins on their legs. Then I found out about May Thurner Syndrome and thought I fit the symptoms and my hypermobility is a big risk factor from the research I’ve done. These r my symptoms I have if anyone can relate or give clarity it would be vastly appreciated.
- Left leg medial calf/lower medial thigh varicose vein
- leg heaviness (like I’m dragging a weight around sometimes)
- leg pain
- Penile tingling when doing i exercises where I seem to engage my pelvic muscles I think (tricep pull downs in the gym) (oddly specific I know)
- occasional bouts of pelvic area pain but nothing consistent or debilitating.
- now 6/7 years later I’ve developed a dilated mildly varicose vein on my right calf in the same area as my left.
The right leg calf vein developing now is what’s making me think I’ve maybe got it wrong as I was convinced it was illiac compression causing my symptoms.
I seen a EDS specialist geneticist in December (the one who said I have hsd) and she sent a letter to my gp saying it would be suitable for me to be referred regarding may thurner syndrome.
So my General practice referred me to the vascular department and my referral was denied which was gutting.
My mum came up with the idea last week to just go to the ER explain your symptoms and maybe they’ll give me a scan and if not at least it’s on my record that I went to hospital for this. They ended up not giving me a scan and the doctor told me “if I had MTS it would cause a DVT” which I know isn’t true and because my leg wasn’t red or swollen or anything they weren’t gonna scan me or investigate. This was annoying but expected tbh.
I’ve got a signed consent form from the geneticist for private genetic blood testing to check if I have any other more serious connective tissue disorders (she doesn’t think I do but I’ve been anxious about more serious ones like vEDS mainly due to the early onset varicose vein not having a known cause and being hypermobile)
However this is very expensive (£1200) so I’m going to do it in a few months time, but to be honest the stress and anxiety this vein problem is causing me because I don’t know what to do about it is very difficult.
I do feel like I do line up with May thurner syndrome with the left leg vein pain and heaviness but I’m genuinely not sure what to do anymore. I live in Scotland but to be honest I’m willing to go private anywhere in UK or at a very push Western Europe to get this matter investigated and treated properly.
Any advice would be greatly appreciated as I’m at a loss now and my anxiety and stuff over this is just getting worse.