EDS and Endometriosis

Hello there!

I am making a plea to anyone who has both EDS and endometriosis if they can shed any light on what treatment options there may be...

I have EDS hypermobility type diagnosed 2 years ago, it was picked up on by my gynaecologist who couldn't attribute all my symptoms to my endometriosis and sent me of to see the rheumatologist who confirmed hypermobility.

At first I tried cerazette which is a progesterone based pill and my body seemed to go into shut down and did not enjoy it at all! I have been told by rheumatology to avoid progesterone pills and the mirena coil. I also had a laparoscopy last year which removed some endometriosis and seemed to help.

However last week I was taken into hospital with gynae problems and it now seems my endo has spread to bowel and stomach :( I am at a loss to know what to do!

Any help or just to know of someone else who has been diagnosed with both would be very comforting.

Ta

Fay :)

16 Replies

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  • 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.

  • Thanks for your reply :) I know it's really tough but it's comforting to know I'm not the only one going through this.

    My doctor keeps suggesting the coil but I am very set against it as I've heard countless bad experiences from people - both on here and my friends.

    I am seeing the gynaecologist again tomorrow and having scans next week so we shall see what comes from these! I will keep you all posted!

    Fay x

  • I hope your appointment went well with the gynaecologist. When I went in for my laparoscopy there was a lady who was on her 5th operation for endometriosis and was also dead set against the coil also. I think the coil is like marmite, for some it is a miracle and for others it is a complete nightmare. You can only try it to see if it is for you as everyone reacts differently, and you can demand for it to be taken out at any time. It is worth noting that in booklets about hypermobility, the mirena is noted to make symptoms worse. It is entirely up to you, but never feel forced into having the mirena. You know your own body more than a doctor will.

  • Thanks for your reply :) my appointment was terrible - I ended up in tears and had to put a complaint in. She was generally really unsympathetic and then gave me an internal which was horrific - literally in so much pain. I'm used to having them and smears etc and it's always painful but I power through but she was awful. she told me it shouldn't be painful because endometriosis doesn't cause pain like that... Pretty sure it does!

    Anyway I'm going to get a second opinion and got to see what my ultra sounds come back with in a few weeks. I'd like an MRI/CT scan but they seem reluctant to do those (probably as they cost more!)

    I hope you're having a pain free week :) x

  • I'm sorry to hear this, you do absolutely right to put in a complaint. It's absurd how many health professionals have no clue about endometriosis. Only a laparoscopy will show endometriosis. Please have a look at this list of accredited centres for Endometriosis, and ask to be referred to one of these.

    bsge.org.uk/ec-BSGE-accredi...

    I ended up first at my local hospital, who threatened me with endometrial ablation and telling me if I have it done I will be unable to have children. I was 18 at the time. It upset me for a long time. They had no reason to offer that operation. I changed to a different consultant at the same hospital, I had mirena and hysteroscopy. She refused to do a laparoscopy, then told me to go to an STI clinic after I had the mirena out.

    Please keep trying and don't give up. I fought for years to get a heart condition diagnosed (I have inappropriate sinus tachycardia). I ended up paying private for the initial consultation, but it was money well spent! There will always be someone out there that will take you seriously.

  • 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!

  • Oh my gosh I have Classical type EDS, Endo, Moderate Adenomyosis and IBS!!!!!!

    I only just discovered the link between having progesterone as an Endo treatment and the severe impact it has on our EDS!

    I currently still have the implanon for control of the Endo (which has helped immensely) but in turn has made my tissue too unstable which gave me three severe tears in both my left and right hip labrum needing 3 operations, along with all the other ongoing EDS symptoms being debilitating most days..

    So I'm just at a loss because I know that taking out the implanon and going hormone free will improve things but I can't even imagine suffering with that Endo pain again 😭

  • That's the biggest question why me. I feel exactly the same. I've lost friends, partners due to this condition people just don't understand why you can't do things. The if you can't see it, it's not t real attitude.

  • 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

  • Shelley, you sound so much like me! EDS Classic, every system involved from gyn (Adenomyosis, early menopause & hysterectomy at 38) & pelvic dysfunction, cystocele, rectocele, cardiac valves, dysautonomia, GI immobility GERD IBS, mcas, & osteoarthritis/instability/dislocations in pretty much every joint from cranio-cervical to SI to failed fused MTPs. Now I need 2 new shoulders, hips & knees and just ran out of allotted Physical therapy for the year. Oh the joys of EDS!

    You are Not Alone!

    Says the 55yr old in a 95yr olds body, soaking in a tub to make the muscle spasms relaxed enough to get some sleep.

    No one to blame or yell at. It just is what it is so we take it a day at a time and keep reminding myself that some else has it worse off today.

    Sending Gentle 🤗 Hugs

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