Could this be HEDS?

[Latchhookbabe]

I’ve recently been assessed by rheumatology and have generalised joint hypermobility (Beighton score 5/9), but was told I “don’t quite meet the criteria” for hEDS.I’ve had lifelong hypermobility, soft skin and easy bruising, and I also have fibromyalgia, chronic widespread pain, significant pelvic pain, bowel and bladder problems, joint pain/swelling, nerve-type burning pain and fatigue. I’ve also had adenomyosis, fibroids and a hysterectomy, with ongoing pelvic symptoms afterwards.
I’m wondering whether my overall history warrants a specialist hEDS/hypermobility assessment, particularly as I understand the diagnostic criteria may be changing later this year.
Has anyone been told they don’t quite meet the criteria by a general rheumatologist but later been assessed by a specialist and diagnosed with hEDS? And would you recommend seeking a specialist assessment in my situation, or waiting for the new criteria?
I’d really appreciate hearing from anyone with similar experiences, especially in the UK. ❤️

Have they given you a hsd diagnosis rather than heds? Honestly having the heds label doesn't change anything! What are you looking for from a specialist diagnosis?

Yes! It's just they are going down the possible endo route and I'd rather not have another surgery if it's not that causing it!

Treatment and support between HEDS and HSD isn't really any different. (I'm UK based, I think it's different in US) It may be that when the new diagnostic criteria are decided, they combine the two so we'll see what next year brings.
Endo and PMOS have a higher occurrence in bendy people so it may still be worth investigating though I understand why you want to avoid unnecessary surgery.

I think it’s worth being diagnosed as
someone with hEDS. It impacts things like my
dental treatment for example.

Thank you. I think the worst thing I did was have a hysterectomy. My symptoms are so much worse since 😫

Are you on Hrt?

Yes, I am. Estrogen only, gel x 2 pumps. Can I ask why, please? X

I don’t understand why it’s so difficult to get a diagnosis of hEDS, your list of symptoms is classic, and ticks all the boxes, including the ‘fibromyalgia’ which is almost certainly a misdiagnosis, because your joint, muscle and nerve pain is caused by your unstable joints.

I was told I didn’t meet the criteria for years and eventually got diagnosed when I was 47, after I saw a multidisciplinary team including genetics, dermatology, rheumatology and pain consultants.

I was just wondering as you said your symptoms had worsened since a hysterectomy. Unfortunately It's not unusual for women to not be offered HRT post op and to be plunged into a surgical menopause which can cause or contribute to some of the other symptoms you reported.

I was diagnosed in early 30s by a rheumatologist after years of gp visits for joint pain, ‘inflammation’ markers and suspected rheumatoid arthritis.
the label makes not a blind bit of difference to me tbh, apart from making my travel insurance more expensive.

That's what I am thinking. I can't understand why other professionals can't join the dots. I'm not sure who I need to see as it's a rheumatologist who diagnosed the fibromyalgia/hypermobility this year.

It’s so frustrating that a rheumatologist would diagnose you with hypermobility and Fibro at the same time. It’s no wonder so many people question Drs when they do stupid things like this. Fibro is a diagnosis of exclusion, if there is no demonstrable cause for your pain, it’s fibromyalgia. If your joints are hypermobile and unstable, it will result in joint, muscle and nerve impingement pain, your hypermobility is the cause of your pain, so it’s not fibro.

I am so frustrated. No one can pinpoint the cause of my pelvic pain. I even had a hysterectomy for Adenomyosis/Fibroids. I'm now awaiting another laparoscopy. I've had so many invasive tests and am currently unable to work due to the level of pain I am in 😢

If you have hEDS, I think you're more susseptable to Endo so could be, having hEDS myself, I have so many other symptoms to go with it.

That's true. I just want to know if it's heds or not. I will go for the laparoscopy. Hopefully I will get some answers 🙏