Does anyone here suffer from both conditions and if so, any advice on managing?
Both conditions are chronic pain conditions, and I'm finding them interacting with one another to an increasing level. Because both are fuelled by hormones, the week before and during my period is an absolute mess. My joints become entirely hypermobile, achey and sore, because of the increased levels of hormones in my body, and then my endometriosis causes a great deal of pain because that's when endometriosis flares. I'm finding myself two weeks out of four in such a level of debilitating pain, and I'm not sure what else to do.
I already follow a diet designed to limit the levels of hormones I'm putting into my body or encouraging my body to create, I weight train twice a week and I keep active with walking my dogs. I don't take the pill and I use cocademol for intense flare ups, but may be having to look for something more.
I'd just be really interested to hear how others deal with having both conditions, or even just two conditions which interact with each other so heavily.
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jennt0506
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Hi sorry to hear things are so difficult. I definitely agree about hormones. My understanding is that oestrogen helps collagen, and progesterone makes it worse, so it might be worth looking at the balance of these. Have a look at this link if you haven't already seen it.
It's a nightmare to be honest! It also makes little sense to me though, why when my endo flares my EDS does - you'd think more oestrogen would be better, but I can only assume I also produce more progesterone during flares and periods.
am v much feeling for you. And am v much admiring your attitude. And am v much relating to your situation. Because i’ve been living with hEDS + infant onset lupus + endometriosis for 64 years (well, my endo wasn’t diagnosed until my early 20s, but the signs & symptoms started earlier). Living with this stuff is a rollercoaster.
I think you’re already doing the right things: eg my feeling is that we cope best via understanding the situation and figuring out a lifestyle/self help regime that works & helps as much as these things can. For me, this has been about learning to pace myself/rationalise activities...which has always involved some hard choices between social/family/work relationships and self care.
Staying as physically active as poss is key. If any alternative therapies has helped me most with chronic pain, these are the Alexander Technique & meditation. But i also work with a seniot physiotherapist who has the skill to design rehab regimes for complex patients like us: he helps me lots! Prescription meds have also been key (mefenamic acid for period & migraine pain especially...but eventually mycophenolate & prednisolone & amitriptyline for joint, muscle & neuropathic pain (due to my lupus, i have access to immunosuppression meds and i am certain these help with the chronic pain involved in my hEDS & endo). Even after my early menopause, i feel certain endo is actively painful somehow, eg have been undergoing 2 1/2 years of multidiscipline investigations into abdo/visce ral hypersensitivity in which my gyn organs are playing a part.
Despite all this, i have had a great life: achieved 2 univ degrees, had a fulfilling professional career, married my soulmate and landed wonderful ongoing care at a top NHS university hospital. I feel very lucky, but it hasn’t been easy...and i have been fortunate to work with a very good therapist who has helped me a lot emotionally & psychologically
Aplogies for the long reply, but this subject is close to my heart
Thank you so much for your lovely words, and for sharing your experience. It's inspiring. It's suspected I may have lupus as well, as I'm about to start that battle for potential diagnosis - so I imagine we are very similar in ways not a lot of people are.
Thank you for choosing to share, it really is relieving and inspiring that you've lived such a full and good life. Sometimes I worry about the future, and I think positivity is absolutely key for sure. x
If you do have an immune dysfunction/cinnective tissue illness like lupus or the other lupus-like conditions (MCTD, UCTD, sjogrens, scleroderma etc) i cannot help but think the prescrip treatment plans will help you the way they have me...even just the standard first line med (hyodroxychloroquine) helped me A LOT.
Have you visited HU’s Lupus Uk forum? It’s brilliant...i’ve been there for 7 years now and benefitted hugely 😘🍀😘🍀
I haven't yet, as at the moment it's all up in the air - both sarcoidosis and lupus are options. My mother had Discoid Lupus and my brother has cardiac sarcoidosis, so we shall see. When I'm further down the line I will likely join one of them for sure though x
Hi! Yes, I have both endo really does worsen the joint and muscle pain aswell. The worst is the fatigue that comes. I haven’t found a cure, I do hope someone does!
Yes have/had both went through lots of pain growing up and into adult life it was not until I was in my 40's when I had the endrometriosis removed whilst having a laparoscopy, I had not been diagnosed with EDS until much later in 2016, I do think things improved after this surgery but not with the joint pain. I also have Behcet's disease which involves my joints and muscles as well as oral and genital ulcers too, only diagnosed last April... I think many of us have to self manage our conditions and do for years and years before someone diagnoses you correctly. You are doing really well managing to keep up with your exercises this will help. If you have not removed all the gluten from your diet I would suggest you try doing this for a month or so and see how you feel and gradually reintroduce to see if this makes any difference, if you are prone to having a gluten sensitivity it can affect both your hormones progesterone and estrogen.
Sorry to hear it took you so long to get a diagnosis. You're right, we do end up self managing - to be honest even after a diagnosis we often still continue to self manage.
I was / have been following the endometriosis diet, but my flares have been so frequent and close together it has become much harder to do so. My main battle is when I'm flaring so much of my energy is spent trying to get over it quickly or continuing to work from home, but from bed, that I'm left with no energy to really cook and end up making unhealthier choices for the ease. It's a vicious circle, because I'm sure it fuels the next flare, but hard to get over when you're in the midst of things. I need a live in cook (husband?!! hehe) x
I did not find it hard as I cook everything from basic ingredients and started first by removing all those carbohydrates such as flour, rice, pasta, potatoes, bread, biscuits and cakes etc out of the house, not even feautred on my shopping list now and then continued with everything else cereals, crackers (other than oats), sweets and anything else I felt I did not need anymore... thankfully my husband joined me in our new way of eating which was a bonus, we occasionally have a blip but this is mostly if we are eating out, I introduced loads more things like seeds and nuts, yogurt, kefir, as well as lots more fresh vegetables and fruit, I know a lot of people remove many fruits from there diets but for me I need these for my body to function correctly and they are a treat or dessert, I also introduced ground flax seed which I buy direct from the grower and recently introduced flax seed oil (cold pressed) both have a short shelf life but I get around this a little by freezing in smaller batches this has helped with my skin and nails. I recently had battered haddock and was terrible afterwards and I get the same whenever I now try bread, pasta and anything made with flour, I have tried coconut flour and gluten free which are both OK but I do not need to have these things in my life on a permanent basis. One thing I try to do is prepare more things in advance and freeze them that way I have a choice readily available which stops me going out eating the wrong things
Thanks so much, that's really useful. I was eating entirely organic, dairy and gluten free for 6 months or so and did feel a difference for sure, but this recent barrage of flares has just knocked me sideways - hence the vicious circle. I have been introducing kefir recently though and felt that helped me, I'll take a look at flax seed oil as well x
The Kefir is good I include other ingredients with it as I cannot eat it as it is include porridge, ground flax seed, fruit and yogurt (make my own) we have this mainly as a dessert or for breakfast. x
Hi, I know this post is from forever ago but I thought I’d ask if you had discovered anything new to help in the last few years. I’m at the beginning of this journey and currently in the week prior to my period. It truly sucks! What a combination HSD and endo/PCOS make! Any help would be received gratefully.
I have both. I have nothing to offer however in terms of what works - I am sitting here having taken tramadol (for heds) and ibuprofen and tranexamic acid (for ridiculously heavy bleeding) but cannot get any assistance from NHS - they did a scan earlier this year and it didn't show anything bad.
I'm in pain and have no energy, but I have stuff I've got to do. I am considering nappies for the blood flow as two heavy duty pads just don't hold back the flow enough.
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endo really does worsen the joint and muscle pain aswell. The worst is the fatigue that comes. I haven’t found a cure, I do hope someone does!
include porridge, ground flax seed, fruit and yogurt (make my own) we have this mainly as a dessert or for breakfast. x 
Joint Hypermobility Confusion
Hypermobility syndrome, fybromyalgia
Diagnosed with Joint Hypermobility Syndrome but I’m not sure.
Is there a difference between hypermobility syndrome and ehler danlos syndrome?
More than just benign hypermobility syndrome?? 