Endo with Ehlers Danlos

[Endoendo]

Does anyone here have endometriosis along with Ehlers Danlos Syndrome? What treatments have you had and have they been beneficial?

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Hello, I've heard of Ehlers Danlos Syndrome but not very familiar with it so unfortunately I'm unable to advise on that but endo I suffered for years. Are you aware of zoladex, its an implant you get every 28 days or in some cases 3monthly which will put you in to a medical menopause which you should have hrt along side it I tried that before I had a hysterectomy 2 weeks ago I'm only 29 and suffered terribly for over 10 years. Also have you tried mefenamic acid this is specific pain killer for pelvic pain. All this has to be prescribe by a gp though xx

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Saying that Ehlers Danlos Syndrome is that a connective tissue disorder or is it to do with bone density. Iv had severe vit d deficiency in the past so I had to take the hrt regardless as some dont as zoladex can lead to osteoporosis if not. Xx

[ber_dock]

Hi,I was diagnosed with benign hyper mobility orginally a couple of years after my Endo and then Adeno diagnosis-I then got diagnosed with Fibromyalgia then M.E..I started to do a lot of research and came across EDS due to all joints subluxating & dislocating,swelling and of course huge amounts of pain and mobility problems,breathing,Ron

cage pain,needing crutches and wheelchair etc

So far I’ve had multiple issues getting a proper diagnosis by the right person.And was told it’s incredibly hard to get one because there’s not enough GPs or other specialists that know about it and that there’s no treatment even when you get a diagnosis.I honestly don’t know if that’s true

My physiotherapist and her manager both said my case looks like hEDS.A neurologist also said hEDS regarding my neck,TMJ and horrific migraines alongside hormonal imbalances.

I finally got a referral to a rheumatologist and she had to google it and then said no.

I found out she was looking at the vascular EDS not hEDS.Highly frustrationing.

It’s been a nightmare tbh,for a long time I concentrated trying to get help for my Endometriosis etc so I admittedly put my joint problems to the back of the list until it got more and more severe after hormone treatments.

Every joint grinds into each other,locking buckling,hips coming out of the socket-and I even reluctantly ended up in A&E at the beginning of covid with what was thought to be a clot was in fact a huge tennis ball sized popliteal cyst behind my knee.They said it’s caused by a dysfunction within the joint structure so I’ve got to wait to see another specialist as my GP said it could be either osteoarthritis or arthritis.Both knees are crapped,I can’t even get upstairs due to the pain and joints grinding

Ive now seen ppl with EDS get these cysts that they get throughout the year.

Sorry for my long rant lol

Sorry that I can’t help with effective treatment advice because I’m still searching.I do very low impact stretches or movements and massage the muscles with oils..Use comfrey oil on my knees which really helps with the swelling.Have silver finger splints and alsorts of braces from neck to shoulders and knees.I use them when needed as you’re not supposed to wear them all the time.Oh and kinesiology tape is the best! Hopefully you do have a diagnosis of EDS,but along my journey I noticed a hell of a lot of women have Endo,Fibro,M.E and EDS/Hyper mobile joints together.Some kind of link?

Hope someone has more info that I to help you

X

[Littlenestofvipers]

Hi! Yes I have Ehlers Danlos, Endometriosis and PoTs. Painkillers wise I haven’t found anything works yet... the tens machine provides ok temporary relief for Endo but for long term I have not found anything yet. I notice this post is a few months old and wondered if you have found anything that works for you yet?