Can hypermobility syndrome affect endomet... - Endometriosis UK

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Can hypermobility syndrome affect endometriosis, adenomyosis or pelvic scarring?

missteal profile image
7 Replies

I have hypermobility syndrome (extra flexible joints) and know I have scarring in my pelvis. I was also diagnosed with endo but then after my 2nd lap told it was "non-active". My gp now suspects adenomyosis and missed endo but I'm wondering if any of my gynea issues can be made worse by my HMS. Does anyone else have both?

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missteal profile image
missteal
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7 Replies

I have been diagnoes with 'slight hypermobility' in most of my major joints - it does run in the family - my son is far worse than me and can put his hand on the floor and walk around 360 degrees without moving his hand! Not sure if my endo was made worse by the hypermobility issue - but my back pain was very severe until I had exision last year, I also attended a pain management course in Manchester which was a brilliant experience.

missteal profile image
missteal

I suppose when you have more than one thing wrong it's difficult to know what's causing the pain. My rhumatologist told me I had the bendiest back he'd seen in the 40 years he's been practising! I do get a lot of pain in my lower back and in the joint between spine and pelvis. I'm thinking if you have endo on any of your ligaments or tendons then it's gonna hurt more than the average joe! I'll discuss it with my consultant on the 4th, see what he thinks, thanks for the reply, it seems to me that a lot of people with endo also have HMS (I asked the same question on another forum and got 6 answers!).

xxxxx

uglyduckling profile image
uglyduckling

I am so sorry you are struglying with two different illnesses.

I do not have HMS but I do have very easy to dislocate joints for example my knees and my shoulders.

I do not know if either this or Endo make each other worse.

This disease is so confusing at times I want to scream out and tell people that do not have it to either leave me alone as you have no idea what I am going through or to come and give me a hug as I feel lonely/depressed or suicidal.

If you ever need to talk give me a message on here.

Kind Regards

Emma-Jane

missteal profile image
missteal

Thanks Emma-Jane, I do get quite down as I also have acid reflux, restless leg syndrome and I suffer with migraines. Yet according to the government Im fit enough to work! Yeah right! I have 2 kids to look after, a mum with bi-polar and a partner who works away from home. We're also doing up a house whilst living in it! When i see it all written down i wonder how i cope. Websites like this help me to know im not alone. Im only 28 but some days i feel like an 80 year old lol.

Sorry for moaning, hope you're all having a good day xx

daniellewright profile image
daniellewright

Hello, I read your post and wanted to offer some support where possible. Potentially adenomyosis could affect your condition since the inflamation you experience through the adeno will affect the nerves around the pelvis, thighs, spine etc x Please feel free to contact me via the main website adenomyosisadviceassociatio... or via the Facebook or Twitter pages. Kind regards, Danielle Wright, Founder of the Adenomyosis Advice Association

missteal profile image
missteal

Hi Danielle, I've just read your bio on your site and it wouldn't surprise me if I had adenomyosis. I have nearly all the symptoms including having contractions for the final 6 weeks of my last pregnancy. I have an appointment on the 2nd with a gynea consultant and am going to suggest that as they only found "non-active endo" (whatever that means) in my last lap that maybe I should have an MRI to see if adeno is a possibility. I have had an internal ultrasound before where I was told my uterus had thick walls! I'm just sick of being told my pain isnt real or it's IBS. I've given birth twice, I think I know what pain is. Thanks for your advice ladies, I do think my HMS is complicating things as I have scarring on ligaments! x

Fletch profile image
Fletch

I've been told that I am hypermobile in the past, but I had no idea whatsoever that there could be any kind of link to my endo? I read this post really, really surprised! Is there anything that documents this link or proves it? And how does this theory work?

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