EP.401/ Impact of POTS or Dysautonomia on the Endo Belly and IBS Symptoms
A while back I did an episode on Postural Orthostatic Tachycardia Syndrome and Dysautonomia and its connection to endometriosis.
If you haven’t listened to that episode, I’ve linked it in the show notes.
Today I want to do a short episode on how POTS may be connected to your endo belly and IBS symptoms.
Research shows the majority of POTS patients report gastrointestinal conditions, with one study showing 91% reporting GI symptoms, most frequently nausea, bloating, constipation, difficulty swallowing and abdominal pain.(1)
In my POTS clients, I frequently see:
Constipation or prolonged bowel movements
Vomiting in mouth
Hacking/gagging
Nausea - most noticeably in the morning
Low appetite
Bloating
Fullness
Food feels like it’s sitting around for hours or sometimes days
The causes behind these symptoms are:
Co-morbidities: POTS often presents with hEDS,(2) which causes structural and functional disturbances.(3) hEDS and hypermobility affects soft tissue, creating laxity and fragility, and this includes the intestines. The intestines are sort of “floppy” and I always explain it to clients like the food is sort of trying to move through a collapsing bouncy castle.
Motility alterations, especially in neuropathic POTS patients (which affects how the body responds to nerve signals), including delayed gastric emptying (link in show notes for my episode on this). People with POTS and hEDS often have dysmotility,(4) meaning the normal movement of food through the stomach, small intestine or large intestine is not working properly, it can be accelerated, or even slowed, and a POTS patient can have accelerated stomach emptying, but a slow colon, or vice versa. I tend to see a lot of delayed gastric emptying, causing many of the symptoms I shared above, like nausea, vomiting or gagging and early fullness, but I have had a few clients have dumping syndrome, where food empties into the small intestine too quickly, which can cause issues with digestion but also blood sugar. I’ve linked to some further reading on this in the show notes.(5)
Continual activation of the sympathetic nervous system/flight or fight (especially in hyperadrenergic POTS), turning off the rest and digest response and thus slowing down motility of the small intestine, which can increase SIBO risk. So we have the sympathetic nervous system which governs flight, fight or freeze, and the parasympathetic, which governs things like repair and digestion. When we are in flight or fight, this can interrupt things like digestion, which can cause a lot of poor dysfunction to the digestive process, resulting in gas, bloating, etc. It can even cause diarrhoea, because the stress hormones released by our body, like adrenaline, can speed up colonic transit time.
And finally, muscle coordination issues can also affect gut function. For example, one study found that people with POTS had poor muscle coordination when trying to pass stools which led to longer and more difficult bowel movements. Additionally, these patients also had a weaker lower esophageal sphincter (the valve between the oesophagus and the stomach) allowing for acid reflux, and weak, uncoordinated muscle movement, resulting in difficulty getting food down to the stomach.(6)
Now, all of these problems can increase the risk of SIBO development, either because the function of the migrating motor complex which cleans the small intestine is slowed down, or because of structural abnormalities affecting its function.(7)
However, it’s important to note that as you can see, whilst SIBO may be, and often is, playing a role in endo patients who also have POTS and IBS symptom, and/or endo belly, you can see that POTS itself can also be problematic.
When I am working with clients who have POTS, endo, SIBO and maybe also IBS, I am also looking at longer term management strategies and maintenance, because whilst POTS can be improved like endo, it is also chronic. People with POTS and IBS symptoms will likely benefit heavily from POTS management strategies to lessen ‘flares’ which can then have a positive effect on gut health, good motility support to improve digestive function and nervous system support to reduce the impact of the flight or fight response on gut health. A pelvic floor physio would also be helpful for those of you struggling with bowel movements.
And finally, because of the dysmotility, many POTS patients will experience early satiety, poor appetite and nausea with eating, so nutrition can be a challenge and if this is you, you may need to work with someone to help you find a way of eating that suits you best. The low FODMAP is often recommended for this, and I’ve linked to my episodes on it in the show notes.
If you suspect POTS, it’s important that you undergo the appropriate testing with a POTS and hEDS specialists who understand the nuances of these conditions, and can provide you with treatments that can support you with your symptoms and unique challenges. I’ve put a few links to some clinics I recommend in the show notes.
Now, if you’d like help with your endo belly, I am looking for 5-10 people who would like help with their endo belly and suspect SIBO (there are about four spaces left).
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) Gastrointestinal (GI) Disease Burden in Patients with Postural Orthostatic Tachycardia Syndrome (POTS) and Abnormalities Found on High-Resolution Motility Testing: 566, Managing gastrointestinal manifestations in patients with PoTS: a UK DGH experience - The British Journal of Cardiology, Gastrointestinal Symptoms in Postural Tachycardia Syndrome: a Systematic Review - PMC
2) https://pmc.ncbi.nlm.nih.gov/articles/PMC7282488/
3) 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
4) https://pmc.ncbi.nlm.nih.gov/articles/PMC7255528/ , https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1379646/, https://pubmed.ncbi.nlm.nih.gov/26376608/, https://assets.cureus.com/uploads/original_article/pdf/30528/1612430138-1612430130-20210204-18203-dyitxb.pdf
5) https://www.ncbi.nlm.nih.gov/books/NBK470542/ , https://www.mayoclinic.org/diseases-conditions/dumping-syndrome/symptoms-causes/syc-20371915 , https://gutscharity.org.uk/advice-and-information/conditions/dumping-syndrome/
7) https://www.autonomicneuroscience.com/article/S1566-0702(18)30015-8/fulltext
Podcasts
Low FODMAP diet and endometriosis
Clinics
Need more help or want to learn how to work with me?
Ways to work with me:
One to one 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
mBIOTA -mBIOTA Elemental is the next generation of the elemental diet and is developed with leading gastroenterologists and food scientists. It’s both clinically effective and easy to drink. And for eligible United States customers, mBIOTA Elemental can be purchased with Health Savings Accounts (HSA) and Flexible Spending Accounts (FSA) funds. You can learn more about the formula at mbiota.com and get 20% off with code ENDOLIFE (all caps). Code is valid for the two-week protocol and until June 14th.
Mira - Mira is an at-home hormone testing device for every day use. Use this link and code 2DUFFJESS20 to get 20% off the device and any future wand orders.
Tempdrop- Track fertility effortlessly with Tempdrop’s Wearable Sensor. Get 15% off with code: ENDOLIFE
Free resources:
This podcast!