EP.404/ The Aftermath of Covid on Endometriosis Patients
Recently, there’s been some awful articles going around about the rise of the chronic illness community and how we’re lying about how ill we are, and that we’re encouraging others to believe they are also ill.
So, today, if you’re questioning how you’re feeling, worried it’s all in your head, or fearful you won’t be believed, I wanted to give you some research on why you your health may have been declining in recent years, or why you now have three or four extra chronic conditions added on top of your endo. It’s not all in your head, and you’re not making it up.
I started my coaching practice just months before covid began. When I first started, I would have clients come to me looking for help with symptoms such as pelvic pain, pain with sex, period pain, PMS, fatigue and bloating. Across the board, these would be the most common issues.
I had a handful of clients who would come to me with a broader range of more complex issues, such as vomiting in the mornings, skin rashes, shortness of breath after eating, dizziness, chest pain, etc. - but as I said, this was limited to a small number.
The clients who were coming to me looking for help with the typical endo symptoms like pain, would often start to see dramatic improvement in 1-3 months.
And then covid happened, and a slow change began, which then snowballed. Bit by bit, I started getting more and more clients with these “extra” symptoms, and other symptoms too. And as covid went on, and then went away, it got tot the point where 90% of my clients had these issues, and they were problems like:
Hives or rashes
New food reactions
Extreme brain fog and debilitating fatigue
Exercise intolerance - many of them not even being able to walk for more than a few minutes at a time
Dizziness
Feeling faint
Blood sugar struggles
Migraines and headaches
Breathlessness and air hunger
Palpitations and a racing heart
Nausea, retching or vomiting
Feeling like they had the flu all the time
Mood changes especially worsening PMDD
And many more…
I had already trained in postural orthostatic tachycardia syndrome as well as MCAS, as I had covered it in my SIBO training, and I had done further reason because I had suspected these conditions in my more complex clients in my early days of coaching (and who were diagnosed as such).
So I was able to see the patterns, and support these new clients to seek the right doctors and get the right diagnoses.
In everyone who sought diagnoses, they were diagnosed with either POTS or some form of dysautonomia, and MCAS (if in a country where they test for it) or suspected MCAS.
So I then started looking at all of these cases - these clients had a decline in health after being exposed to covid.
At this time, we were still mid-pandemic so we didn’t have the research, but I felt like I was looking at whole new endometriosis. It felt like my clients were dealing with endo on steroids. Inflammation was harder to get down, pain took longer to subside, blood sugar was harder to regulate and so on. We got there, but it was harder won.
And in recent years, we finally have the data to prove that for those of us with endo who caught covid, our health post covid may very well look different now.
A 2025 systematic review and meta-analysis showed a significant increase in long covid in those with endometriosis vs. those without.(1)
In general, women, especially those with immune related conditions, are more at risk of long covid.(2)
And I can’t help but wonder, how many of us aren’t even being diagnosed with long covid because we’re too afraid of not being believed by doctors?
So, some of us may have diagnosed or suspected long covid, and unfortunately, that’s not where the complexities end.
Long-covid is a now established cause of POTS, which can occur after exposure to a virus or infection (amongst other causes) and is significantly more likely to affect women: 91% of long COVID POTS patients are female, between the ages of 18-50, with a mean age of 40. Interestingly, research is suggesting not all patients develop typical POTS, but some form of dysautonomia, with 31% meeting the diagnostic criteria and 27% showing dysautonomia but not fully meeting the POTS criteria.(3) So this may very well be why some of us get diagnosed with POTS and others are told they are on the dysautonomia spectrum.
Now, both clinically and in the research we see an association between endometriosis and POTS.(4) So it’s possible that some endo patients either had POTS/dysautonomia with mild or manageable symptoms prior to covid, which then worsened with covid, or they had a genetic predisposition (which is still being researched is thought to be to do with shared inflammatory pathways) to develop POTS, and so covid exposure triggered the condition in these patients.(5)
As if that wasn’t enough, along comes MCAS. Whilst not a new disease, it was only ‘discovered’ in 2007 and is only more recently getting attention due to the increase in prevalence since covid, often affecting those who have also developed long-covid POTS. The general population rates were originally thought to be about 17% (based on the German population)(6) but experts are now estimating numbers to be much higher since covid.(7)
In fact, recent research has shown that Mast Cell Activation Syndrome symptoms are increased in those with long covid, and that the symptoms of long covid are also almost identical to what those with MCAS report, and so scientist believe that mast cells may become over active after being exposed to the virus.(8)
Now, I’d love to say this is where the complexity ends, but it’s not I am afraid.
We know that hypermobility and hEDS is more common in people with endometriosis - well, MCAS can often worsen symptoms of hypermobility because the abnormal mast cells create inflammation that further disrupts connective tissue integrity.(9)
So, some of you, on top of these other symptoms, may be having more issues with joint pain, full body pain, dislocations, and so on.
And finally, as you’ve probably learnt recently if you’ve been listening to my podcast, all of these conditions have direct and measurable effects on the gut, and so you may also have found yourself with worsening IBS or endo belly.
Additionally, long covid has been shown to activate dormant viruses, like Epstein-Barr virus, so you may also be battling another virus that you knowingly or unknowingly had when you were young, and in fact, that’s been the case for a few of my clients.(10)
And so, to wrap up, you can see how contracting covid can be a catalyst for the beginning or worsening of these conditions that are associated with endometriosis. Now, for those of you who haven’t had covid, there are also associations between POTS and the covid vaccine (and like always, the research is in the show notes). (11) And whilst research has shown that MCAS patients can tolerate the vaccine (though clinically I think we see some variation with that), POTS being triggered or worsened can have a knock on affect on MCAS.
And additionally, outside of covid entirely, all of these conditions are associated with endometriosis, and tend to worsen in stress (like covid), perimenopause, etc. so it’s possible that you may be experiencing more symptoms due to where you are hormonally.
So, please do not start to question your sanity because one or two people have written poorly researched articles. There is plenty of research out there showing how real these connections are.
References
1) https://pmc.ncbi.nlm.nih.gov/articles/PMC12079877/
2) https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2829454, https://jamanetwork.com/journals/jama/article-abstract/2828511
3) Long-COVID Postural Tachycardia Syndrome: A deep phenotyping study | medRxiv, Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID | Circulation: Arrhythmia and Electrophysiology, https://www.contagionlive.com/view/majority-of-patients-with-long-covid-meet-criteria-for-pots, https://www.jacc.org/doi/10.1016/j.jacadv.2025.101873
4) https://pmc.ncbi.nlm.nih.gov/articles/PMC3413773/
5) https://www.potsuk.org/pots-and-long-covid/
6) https://pubmed.ncbi.nlm.nih.gov/24098785/
7) https://pmc.ncbi.nlm.nih.gov/articles/PMC8459548/, https://www.sciencedirect.com/science/article/pii/S1201971220307323
8) https://pmc.ncbi.nlm.nih.gov/articles/PMC8459548/
9) https://pubmed.ncbi.nlm.nih.gov/35449490/
10) https://www.nature.com/articles/s41586-026-10740-z
11) https://jamanetwork.com/journals/jama/fullarticle/2800964, https://www.cedars-sinai.org/newsroom/new-study-is-there-a-link-between-covid-19-vaccination-and-pots/
12) https://pmc.ncbi.nlm.nih.gov/articles/PMC8804463/
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/low-fodmap-diet-endometriosis-pots-eds
https://www.theendobellycoach.com/podcast/endo-symptoms-and-hypermobility
https://www.theendobellycoach.com/podcast/impact-of-pots-on-endo-belly-ibs
https://www.theendobellycoach.com/podcast/mcas-and-endo-belly
https://www.theendobellycoach.com/podcast/what-is-pots-dysautonomia
https://www.theendobellycoach.com/podcast/what-does-mcas-have-to-do-with-endo
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