EDS and Endometriosis

Hello fay...am v much feeling for you...you've been & are going through a lot!

I wish I could be properly helpful, but all I can really do is say: yes! I've been diagnosed with both too:

Yes, I'm globally hypermobility of the ED type. Perhaps you know this assoc already, but if not...here is a helpful link with good archives of info & a forum:

Hypermobility Syndromes Association

hypermobility.org/

The HMSA website provides help and advice across the spectrum of problems ... The Hypermobility Syndromes Association (HMSA)is a UK charity but we are ...

I also have endometriosis, and infant onset systemic lupus, plus a chronic immunodeficiency which predisposes me to infection and is currently being investigated by immunology at the leading UK university hospital where I attend the lupus & Vasculitis clinic.

I'm 61 now, and have mainly coped with my version of endo through prescription mefenamic acid & full on lifestyle management...but a lifetime of persistent recurring UT+Kidney infections has led to complications, so am now about to undergo NHS cystoscopy & dilation with biopsy under general anaesthetic...I suspect my urinary tract & lower GI may well have been affected by endo all these years too. But I've coped and mainly avoided clinical treatment, aside from gastroscopies, colonoscopies & proton pump inhibitors etc

Anyway, I'm glad you posted & I'll be following your replies with interest

Am wishing you all the very best

XO

PS the HealhUnlocked Endometriosis forum here has been v helpful to me

Hi my 19 year old daughter has had trouble with gastric problems cysts on her overies ,she also has IBS and chronic fatigue muscle and joint pain ,all this is supposed to be EDS type 3 .i think most GP dont understand EDS or its symptoms and it took 17 years before my daughter was diagnosed .

Yes, me too. Anything progesterone based makes my ligaments mega-stretchy and causes me lots of problems, I think this is generally the case with HMS/EDS.

I've managed my endo symptoms in the past by avoiding wheat. I did it for a year or so, but then I gradually went back to eating it again. It has been getting worse, and I'm now certainly getting pains in new areas, so this probably more than a coincidence.

It is hard to do, but maybe it's something you could consider, once you're researched it for yourself.

Thank you all for your replies, sorry for the delay in responding - it has been another tough week!

I have found the HMSA and endometriosis Uk fantastic places for support and advice and have an excellent GP who also understands fully.

I have been making lifestyle changes, I've cut out gluten and do Pilates when possible and these things have helped. I am in my 20s and determined not to let these things take over my life!

Hope everyone has had a good weekend xx

Hi Fay

I'm 19, and both Joint Hypermobility and Endometriosis stage III. I have to have a second operation as they couldn't treat the endometriosis in the first operation. I have it on my fallopian tubes, ovaries, and the right ureter.

I have tried the Mirena coil, which came out after 12 days as the pain was unbearable and I suffered deep depression. They put it in at the same time as a hysteroscopy. The hospital refused to do the laparoscopy so I had to be referred to the hospital near my university. Their excuse was that I was too young to have endometriosis and they didn't want to give me scars at such a young age (a load of rubbish as the scars are barely there!).

I have been lucky enough to have been referred to a specialist centre for Endometriosis, thanks to a great GP who listened to me. She didn't recommend any hormonal treatment, but she said I could try cerazette if I wished. She also offered tramadol, but I would like to be able to function! I was given meloxicam but it gave me chest pains and didn't work very well. Instead I switch between codeine and naproxen for the pain, alongside using paracetamol.

I would ask if they are doing excision surgery for endometriosis, diathermy is just taking the top off the endometriosis. Excision rips it from the root and it should hopefully have less chance of returning.

Sorry for this late reply however yes I have EDS classical type, Endometriosis, possible adenomyosis and also IBS.

Sometimes I just want to curl up and cry I am in so much pain. I do also wonder why is it always me!

Good to know others out there feel as rotten as me!

I also have EDS hypermobility type and endometriosis.

I've had a couple of laparoscopies to remove adhesions and this helped for a long time, but the pain is back again now. The last doctor I saw said that it's not good to keep having laparoscopies, as it's not good for my body. I don't want to go on medication as I always suffer from side effects, which are often worse than the original problem!

In the past giving up wheat has really helped with the endo pain, (I'm not sure it actually stops it growing but the pain decreased a great deal). So I might try going gluten-free again.

Hiya, this might sound weird but I was recently made aware about changing your diet. Looking at going for gluten/diary/sugar free diets can be very beneficial to help with the problems linked to both conditions. It's more the gluten free and dairy free that can help. Someone I know got diagnosed with PCOS and was advised to change her diet, since changing it her body has reacted so positively its amazing to the point I can't get over the change. Talking to her in general the other day she mentioned that it's been found to be very beneficial for endometriosis as well, and any of the hormone based problems linked to eds. It is specifically a low amylose diet that she has. It might be worth trying!

Xx

Hi like you all I also have had the same problems, eds hypo mobility endrometriosis ibs osteoarthritis etc. I've had 4 disc replacements several laser removal for endometriosis had a full hysterectomy 2 years ago that stopped all of my gynaecology problems. I've now got burisis in both shoulders and need surgery, my disc replacement in my neck has collapsed and the discs above and below need removing. At some point I'm gonna be bionic.

I'm really struggling day to day to manage pain, my knees, ankles are very painful making walking very hard. I'm in the process of fight the Benifit system as they say I'm fit to work go figure. I'm 44 years old an some days can't get out of bed, or up of sofa. I think more people need to know about Eds as its new t well known. When I had my medical for ESA the person who assessed me had never herd of the condition how can someone asses you that hasn't got a clue.

Feel very alone it's good to read about other people who have this condition

I have both, I am still learning about it.

I have both EDS and endometriosis. I have a great doctor to treat the Endo. But I so depressed to because I feel like nobody takes EDS seriously. I’m fairly young, but have a severe herniation at L4-5 and the neck had s 3 affected discs as well. I have the hyper mobility EDS and possibly vascular. Nobody will help me with the EDS. It’s life changing. I just want to be able sit normally again or stand for longer than 10 minutes without my legs going numb. I have seen at least 4 doctors and nobody will do anything besides epidural injections ( I have had them, they don’t work). Just at a loss right now. My Endo is back after only 7 months from my surgery.