EP.164/ Endometriosis and Ehlers-Danlos Syndrome - Is There a Connection?
Okay today I want to now talk about something a little more unusual, and that’s Ehlers-Danlos syndrome and its possible connection to endometriosis.
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Ehlers-Danlos Syndrome is a group of 13 conditions which all affect connective tissue (collagen) in the body. Most are rare, but one type called hypermobility EDS is common.
Because the intestines are made from soft tissue, EDS affects digestion and often causes IBS symptoms. It is a major risk factor for developing SIBO, because it slows down motility. If you have EDS and SIBO, you will be chronic - but you can still live well! And we’ll get to that in the bonus lesson with Dr Allison Siebecker.
And just to hammer this point home about the connection between EDS and IBS, one study of 228 IBS patients found 48% also had EDS.
Now the reason why I want to bring EDS to your attention is because I am seeing it more and more in my clients with both endometriosis and SIBO.
Despite these statistics, to my knowledge, most experts do not consider EDS and endometriosis to be significantly connected. At present, it is thought that most of the period pain and menstrual problems of those with EDS is not caused by endometriosis, but EDS itself.
However, I have spoken to multiple health care practitioners who do see a connection and see the two conditions together in patients, and because EDS can cause gut problems and SIBO, I think it’s worth raising here.
So, here’s an overview of what we know so far…
Current estimation is 6-23% of patients with EDS also have endometriosis. More research is being done into the connection at present.
32-77% of those with EDS have vulvodynia and or pain with sex.
33-75% have heavy menstrual bleeding.
73-93% have painful periods.
And here are some of the main symptoms of EDS, though there are many and they are often far reaching. You do` not have to have them all to have EDS:
·Joint pain/full body pain
Hypermobility (can be very subtle)
Stretchy skin
Soft, velvety skin
Bruise easily
Dislocations of joints
Chronic fatigue
Dental crowding
And I wanted to include some signs or clues of EDS as well…
Unusual symptoms that seem random, so people with EDS often feel like they have lots of symptoms and never really feel well.
Family has hypermobility - again, this can be very subtle. They might have no idea.
Tight muscles and stiffness - because your joints are unstable, the muscles overcompensate and are often stiff and tight to try and create some stability in the body.
Allergies - and this is because MCAS is now being identified as a co-condition of EDS. MCAS is when the mast cells which release histamine are overly sensitive and easily triggered, resulting in a higher amount of histamine being released on a daily basis. Mast Cell Activation Syndrome still isn’t widely acknowledged by conventional medicine, but many functional and naturopathic doctors are leading the way with this. MCAS is now showing up in the research as being a likely co-condition of EDS, as part of a trio with another condition call PoTS, which stands for Postural Tachycardia syndrome.
Low blood pressure and/or dizziness - because EDS often comes with something called dysautonomia
Racing heart or palpitations - due to a type of dysautonomia which I mentioned earlier, called PoTs
IBS - because of how EDS affects the gut
So, following on from that, I just wanted to provide a bit more education around dysautonomia in case you have the signs. Dysautonomia is a group of conditions that affect the autonomic nervous system, which control involuntary functions of the body.
Postural Tachycardia syndrome or PoTs is one of these conditions and is part of a trio of EDS-MCAS-PoTs I mentioned earlier, and it affects blood flow and blood pressure in the body, so that too little blood is getting to the heart and the heart rate increases when going from sitting/lying down to standing.
Some of the symptoms of dysautonomia are…
Blood sugar dysregulation
Low blood pressure/fainting
Chest pain/breathing issues/palpitations/racing heart
Gut problems and bladder problems
Dizziness/balance difficulties/vertigo
Struggle to regulate temperature
I’ll take you through some ways to get tested in the next lesson.
Now I know this might sound scary, but if you do get a diagnosis, you can manage these symptoms long-term, and your quality of life will dramatically improve!
And just because I found this personally quite helpful, because there’s a lot of symptoms floating around with this, EDS specialist Dr Alena Guggenehim sees loose joints, joint pain and dysautonomia as the main signs/symptoms of hEDS.
Diagnosis for EDS is best done through a rheumatologist, but reportedly this is more frequently being performed by GPs these days. If you can’t get a referral on the NHS (if you’re based in the UK), then I think the best route would be to buy health insurance and get referred to an EDS specialist. I think that would be safest, because not all GPs are fully versed in diagnosing EDS.
For hypermobility EDS, diagnosis is based on a physical test called Beighton score, which looks at the range of mobility in your joints, as well as issues like teeth overcrowding. Family and patient history should also be taken into account, and signs of co-conditions, like allergies and dizziness. It’s worth noting here that you can still have hEDS if you don’t score highly on the Beighton score. There is a link to it in the slides, but it does have some confusing terminology and is not to be used as a tool for diagnosis without a doctor.
Genetic testing will also be carried out to rule out the rarer forms of EDS.
PoTs is tested for by testing heart rate and blood pressure when going from sitting to standing and lying down (on a tilted table) to upright. You’ll need to speak to your GP to get a referral. If you test positive for EDS and you have signs of dysautonmia, even if it’s just fatigue, it’s worth looking into this.
Other tests may be run to look for other types of dysautonomia
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My free guide ‘Managing Endometriosis Naturally’ is perfect for anyone just starting out on this journey of managing and reducing their symptoms. Download here.
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My free “Endometriosis Symptom Tracker” could help you begin to understand the subtle patterns in your endometriosis symptoms. As always, this guide doesn’t replace your medical treatment and is not intended to treat or cure endometriosis, but provides you with options that helped me to live well with endometriosis. Download here.