EP.403/ How Hypermobility Could Be Contributing to Your Endo Belly, IBS and SIBO
Today I want to talk about Ehlers-Danlos syndrome and the hypermobility spectrum disorders, and how they may be contributing to your endo belly, IBS and/or SIBO
But first, let’s start with a little 101 on endometriosis and hypermobility, because I’ve been talking about these topics for years, but the research has been evolving so it’s good to do a little recap. If you do want to explore some of my older episodes on the topic, I’ve linked to them in the show notes.
HSD are a group of connective tissue disorders which affect soft tissue including joint cartilage, skin, blood vessels, etc. The connective tissue, which can be thought of as the ‘glue’ holding together the body, is weak, overly stretchy and fragile.(1)
Hypermobility that causes no symptoms is at the lower end of the spectrum, and they increase in symptoms severity, until we reach hEDS.(2)
hEDS is one of, and the most common, type of Ehlers-Danlos, but there are 13 types in total, which can all impact soft tissue.
Symptoms include (but are not limited to):
Bendy joints (but not always - as hypermobile patients get older, they get stiffer as muscles overcompensate for joints to try and hold them steady)
Joint pain
Disclocations
‘Clumsiness’ - poor joint stability
Body/muscular pain
Coat hanger pain - neck and shoulders
Headaches and migraines
Fatigue
Digestive disorders
Urinary issues
Stretchy skin
Fragile skin - bruises or breaks easily
Excessive scarring/adhesion formation(3)
So now let’s look at the connection between these conditions and endometriosis.
People with endo have a:
5x higher odds of having a connective tissue disorder(4)
7x higher odds of having Ehlers-Danlos syndrome(4)
45% may have hypermobility (the more severe the endo, the higher the % of hypermobility)(5)
Awareness is lacking and often we need to advocate for ourselves for investigations to be pursued. These conditions are also often misdiagnosed as fibromyalgia or a mental health issue i.e. anxiety.(6) I have provided links to clinics that aid with diagnosis.
So, now let’s look at the connection between hypermobility and gut problems, and how hypermobility may be contributing to your endo belly.
There is a high rate of IBS and SIBO in hypermobility and hEDS.(7)
Studies suggest methane may be more common than hydrogen type SIBO, likely because methane thrives in a stagnant environment, which hypermobility often causes (because motility becomes slowed by floppy intestines).(8)
HSD increase the risk of SIBO and gastrointestinal conditions because:
Dysmotility - gut muscles don’t work the same, can cause gastroparesis (delayed stomach emptying) or even accelerated stomach emptying, sluggish MMC or large intestine dysmotility.(9) I’ve linked to my episode on delayed stomach emptying in the show notes. SIBO EPISODES
Visceroptosis - when organs like the intestines or stomach drop down from the normal position. In one study, 53% of hypermobile patients with visceroptosis also had SIBO.(10)
Compression syndromes - whilst those without hEDS can have compression syndromes they are common within the hypermobile community,(11) as well as endometriosis. These conditions can cause significant dysfunction of the gastrointestinal system and can often be misdiagnosed and overlooked.(12) I have provided some further listening/reading on this topic in the shownotes.
Abdominophrenic dyssynergia - this is a condition where the stomach muscles relax and expand after eating, causing distension.(13) Whilst we don’t have definitive research, clinically we see it is common within the hypermobile community because the lax tissue and poor coordination of the muscles, but it can be treated and improved with modalities such as physiotherapy.
So when it comes to SIBO, it is often harder for people with hypermobility to get into remission or to stay in remission.
I tend to see patterns like SIBO coming down only to bounce back up, likely due to pockets of hidden bacteria that have evaded treatment and/or bacteria building up during treatment due to ‘floppy’ intestines.
If this is you, you may need more SIBO management/maintenance support, a gentler approach to treatment that focuses more on motility, improving symptoms and quality of life vs. aggressive SIBO treatment.
Because of the dysmotility/gastroparesis,(14) many of these patients will experience early satiety, poor appetite and nausea, so nutrition can be a challenge. In these cases, smaller, more frequent meals are the general recommendation, but should be discussed with a doctor and/or dietician (again, I have provided further reading/listening on this in the show notes).
It’s important that if you suspect hypermobility, that you get a diagnosis so you can have the correct tests and identify if and how hypermobility is behind some of your gut symptoms.
Now, I understand if you just can’t deal with more diagnoses and testing, and would rather just try some management techniques - of which there are many I cover on this podcast, like LDN, peppermint, ginger and physiotherapy, but if you want to identify if any of the listed issues are affecting you personally, they will require testing.
If you’d like help with your endo belly, I am looking for 1-2 more people who would like help with their endo belly and suspect SIBO (8 spaces are already full).
After the success of using probiotics for SIBO in endo clients these past nine months, and the recent practitioner training I ran on endo and SIBO, where I presented the latest research and my experience with endo+SIBO clients over the past several years, I would LOVE to now take this further to a larger group of endo peeps to begin gathering more data on the impact of SIBO on endo, and how addressing it affects IBS symptoms, endo symptoms and endo belly.
I am particularly keen to work with anyone interested in trying the probiotic protocols I’ve been testing, as this is where we have the least data and yet are seeing good success rates, BUT I’m also happy to work with anyone who would like to explore other avenues i.e. elemental diet, herbs, etc.
To keep this affordable and also to help manage my caseload, the programme will consist of three one to one sessions, delivered over six months (nine months if needed, some cases require longer), with email support in between (in contrast to my usual coaching, which is 12 sessions). SIBO is tough to treat, so there will of course be room for extension if required.
Prior to starting, we’ll order you a SIBO test and go over your symptom history to help me identify any SIBO co-conditions or root causes we need to address.
Then we will meet for two initial sessions to get started, covering:
Test results
Protocol options and creating a plan (including retesting)
Dietary options
Die off preparation and management
Symptom management
You’ll then be able to move forward with the protocol, with email check ins and support from me.
The third session will cover prevention of relapse and microbiome rebuilding, or chronic SIBO management if you have a root cause that causes continual relapse i.e. hEDS. It’ll be booked in based on when you’re near completion of the protocol.
In return for the discounted price (which I’ll share in just a moment), I’d love to use your experience to gather information on which protocols were most helpful, which management strategies you responded best to, SIBO success rates, impact on endo, etc. I won’t be sharing any personal information like names, etc. It’ll simply be quantitative data (maybe some qualitative if there’s any quotes that you’re happy to share).
My hope is that I can use this info to learn more about the endo + SIBO connection, develop better and more effective protocols and eventually present all of this in an accessible course or book, that’s budget friendly for everyone.
Because this is a condensed version of my usual work, we won’t be directly targeting/discussing endo, but I will take into account your endo history and symptoms, and this will all be considered in the SIBO protocols, and they will be tailored to support your endo symptoms i.e. certain prokinetics for SIBO can also treat endo pain, certain SIBO dietary changes have also been shown to help endo symptoms, etc. If you’d like one or more targeted endo sessions, they can be booked in, in addition.
Whilst I would love this to be free, I can’t work with that many people on two such tough conditions for no fee - it would simply take up so much time, I wouldn’t have enough spare time to earn a living! But the programme is significantly cheaper than my typical year long 1:1 coaching programme, at £600, with the option of 3-6 month payment plans if needed in £100 or £200 instalments.
If you’d like to learn more, email me on hello@thisendolife.com
References
1) https://www.ehlers-danlos.com/what-is-eds/
2) https://www.ehlers-danlos.com/what-is-hsd/
3)
https://pubmed.ncbi.nlm.nih.gov/28145606/, Symptom and joint mobility progression in the ...Clinical and Experimental Rheumatologyhttps://www.clinexprheumatol.org › article, Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): Clinical description and natural history - PubMed, The 2017 international classification of the Ehlers-Danlos syndromes - PubMed, https://www.ehlers-danlos.com/what-is-eds/
4) https://pubmed.ncbi.nlm.nih.gov/39990556/
5) https://jchr.org/index.php/JCHR/article/view/5363
7) Higher prevalence of joint hypermobility in constipation predominant irritable bowel syndrome - PubMed, S493 SIBO and SIFO Prevalence in Patients With Ehlers-Danlos Syndrome Based on Duodenal Aspirates/Culture, Hypermobile Ehlers–Danlos Syndrome With Prominent Gastrointestinal and Autonomic Involvement in a Latin American Patient: A Case Report - PMC, Gastrointestinal problems in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders, Overlap between irritable bowel syndrome and hypermobile Ehlers-Danlos syndrome: An unexplored clinical phenotype? - PubMed
8) S0476 High Prevalence of Methane Predominant Small Bowel Bacterial Overgrowth and Constipation in Patients With Hypermobile Ehlers-Danlos Syndrome, Low prevalence of positive hydrogen breath tests in patients with functional gastrointestinal conditions and hypermobile Ehlers–Danlos syndrome - Dervin - 2023 - Neurogastroenterology & Motility - Wiley Online Library
9) Severe Gastrointestinal Dysmotility in Patients With Ehlers-Danlos Syndrome: Case Series - 1 Center Experience, Prevalence and Predictors of Gastrointestinal Dysmotility in Patients with Hypermobile Ehlers-Danlos Syndrome: A Tertiary Care Center Experience - PMC, Gastrointestinal problems in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders, An overview of Ehlers Danlos syndrome and the link between postural orthostatic tachycardia syndrome and gastrointestinal symptoms with a focus on gastroparesis
10) S3153 Hypermobile Ehlers-Danlos Syndrome and Visceroptosis, Visceroptosis and the Ehlers-Danlos Syndrome - PMC, Visceroptosis of the bowel in the hypermobility type of Ehlers–Danlos syndrome: Presentation of a rare manifestation and review of the literature - ScienceDirect
11) https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.64182, https://www.dovepress.com/the-investigation-and-management-of-the-abdominopelvic-vascular-compre-peer-reviewed-fulltext-article-VHRM, https://www.mdpi.com/2227-9059/14/3/689
12) Pelvic Congestion Syndrome: The Gynecological Perspective - PMC, https://pubmed.ncbi.nlm.nih.gov/27177709/
13) https://pmc.ncbi.nlm.nih.gov/articles/PMC9810002/
14)https://www.theendobellycoach.com/podcast/delayed-gastric-emptying-endo-sibo-gastroparesis, https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1379646/full#ref30
Podcast episodes
https://www.theendobellycoach.com/podcast/endometriosis-and-ehlers-danlos-syndrome
https://www.theendobellycoach.com/podcast/delayed-gastric-emptying-endo-sibo-gastroparesis
https://www.theendobellycoach.com/podcast/endo-eds-adhd
https://www.theendobellycoach.com/podcast/low-fodmap-diet-endometriosis-pots-eds
https://www.theendobellycoach.com/podcast/sibo-relapse-endometriosis
https://www.theendobellycoach.com/podcast/endo-adhd-link
Clinics
The London Hypermobility Unit (UK)
Dr Ahmed (UK)
Compression Syndromes
Interview with Dr Alexis Cutchins
Need more help or want to learn how to work with me?
Ways to work with me:
One toone coaching info and application - £500 off this July.
Endo Sessions: Single and mini-package one to one endo coaching
SIBO Sessions: Single and mini-package one to one SIBO coaching
Live and Thrive with Endo 2.0 DIY online course
Masterclasses in endo nutrition, surgery prep and recovery and pain relief
This EndoLife, It Starts with Breakfast digital cookbook
Affiliate Partnerships
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