Hypermobile EDS & Endometrosis

[piperpiper1]

Has anyone with hEDS been diagnosed with Endometriosis and if so, what treatment did you have and how did it affect you?

[Tryx]

I was diagnosed with joint hypermobility over ten years ago and endometriosis last year after a laparoscopy and excision. Unfortunately it didn't help so I'm having another in July. I have had a mirena coil fitted, various painkillers and pill and three months of Zoladex which was awful.

[piperpiper1 in reply to Tryx]

Thanks Tryx - is Zoladex the stuff that brings on a false menopause? I had IVF a couple of times and took Buserelin which did that and I felt good - actually properly good, so calm and felt lighter and pain-free (gynaecologist said it was a good sign) but that was only for 6 weeks and I worry about the long-term use and affect of all that. Did it get worse for you as it went on or did it feel bad straight away? Sorry you've been having a difficult time though... My cousin has hEDS and endo too and I was wondering if it's maybe an auto-immune thing/there's a link with the two disorders...? I had the mirena as a contraceptive years ago and I felt mad as anything. Jittery and strung-out emotionally. May I ask where you have endo? Mine is in the uterine muscles (adenomyosis) in my ovary (I only have one left) and right side wall probably attached to my colon. It explains a lot of the pain and issues I get...

[Patricia2015]

I know since last week I have deep infiltrating endometriosis. Since my youth I have hypermobility syndrome. As since recently I also have skin, muscle and tissue atrophy and organ involvement prolapse) I feel it is more EDS HMS. I also have an undifferentaited connective tissue disease with Lupus symptoms.

[piperpiper1 in reply to Patricia2015]

That definitely sounds like EDS! Poor you, so complicated. May I ask how old you are? I'm 44 and all my symptoms for EDS and Endo/Adenomyosis have got much worse over the last 10 years although I've had the latter probably since I was 19 and EDS for life obvs.

[Patricia2015]

Thank you.

I am 42.

Since about three/four years I get progressively worse too

My skin is thinner, I am translucent at some places. My hands look aged. My foot soles are wrinkled and my heels have Piezogenic Papules without pressing. I had straie on my thighs and shins since puberty and I now also have them on my lower back. I get bruises all the time mostly small ones. My skin is very sensitive and it doesn't heal quickly.

I have trouble walking for about three years now. My upper leg muscles and foot lifters muscles have atrophied. My ankles are very hypermobile just like my feet. I have developed flexible pes equines and pes valgus. I have a wheelchair for if I need to walk more than 15-20 minutes. I have custom made orthopedic shoes and have ankle braces. I also have problems in my upper body, my hypermobile wrists and scapulas (shoulders).

I have uterus prolapse, adenomyosis and deep infiltrating endometriosis in different sites in my belly.

I am and always was slender, never had kids (feel my cats are my kids) due to medical reasons.

What are your symptoms?

[Flexi]

Hi there Piper, I've only just joined so I'm late to the party.

I'm 41 years old and have a 19 year old son.

I was diagnosed with Endo at age 33 before i got my EDS diagnosis. Chronic ovarian pain radiating from my abdomen into my back, hip and down my leg, bad menstrual cramps, flooding etc. I couldn't sit flat on my bum as it felt like i was sitting on a broomstick (hope that's not tmi). Had open surgery in 2009, everything was in a mess, lots of cysts, adhesions. Didn't recover well (i think that's when the EDS started tap dancing). Cysts came straight back, had keyhole surgery the following year. Less than 12 months later they were back, i had been in constant pain with endo and undiagnosed EDS, so decided to have a total hysterectomy at age 35.

I use Estraderm HRT patches which help the menopausal symptoms. I was finally diagnosed with EDS, Pots and fibromyalgia in 2012. Not once have i regretted my decision to have the hysterectomy, at least that is one set of pains and surgery i no longer have to deal with. For me it was the right choice. It took a while to find the right dosage of hrt and for it to start working. And i get crazy hot flushes still but they're mostly caused by the Pots.

Good luck, i hope you find some relief x

[piperpiper1 in reply to Flexi]

Wow. Your story sounds so like mine (though I have a daughter who's 16...) Did you struggle with grief at all? I mean in realising you wouldn't be able to have any more children? And did you have pain mainly during and around your period or all the time? I have it mainly during my period but it can make me feel pretty low the rest of the time - or it's the EDS/POTS/Fibromyalgia...? But when I have my period I'm desperate not to feel like this and then the rest of the time I think I can manage because it doesn't seem so bad... I'd be so interested to know how you feel/felt.

And BTW not tmi - I get exactly the same feeling. I have it right now and hate having to drive or sit in public at these times because you can't slink back into a comfortable position!

[Flexi in reply to piperpiper1]

I always thought i didn't want more children. Initially after the hysterectomy i was just relieved that it was done and was hopefully an end to that pain. And because i wasn't really recovering after the surgery (fatigue, muscle and joint pain, insomnia, bladder and bowel issues etc) i was preoccupied with all of that. I'd also lost my Mum and my job during that time so i didn't really grieve for my fertility.

But as the years have gone by i suppose there is a part of me that's sad i didn't have more children when i could, and now i can't have any more. Maybe it's that whole "you want what you can't have" thing. Although, in all honesty, I'm not sure how I'd be coping now if I had young children. I try not to dwell on the things I have no control over or can't change because otherwise I feel like banging my head on a pebble-dashed wall!

But I do feel grief, though, for the loss of my freedom and independence and the restrictions that my health has imposed on me. So I try to make sure I have nice things planned throughout the year to look forward to. Gotta balance out the sad times with fun and laughter when you can. Feel free to msg me if you'd like to chat some more x