-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Endometriosis and ME/CFS
- Thread starter Hutan
- Start date
-
- Tags
- endometriosis
There was a UK MEA survey, I'm not sure how many people/women answered. It was reported that 15.5% of the respondents said that they had endometriosis. I don't know if that percentage was of women answering or of all people answering. The prevailing rate of endometriosis in women after puberty and before menopause in the UK is reported as around 10%. It's not uncommon.
That does suggest a higher incidence, although a lot of women don't have endometriosis. Issues with self-reporting; and possibly women with ME/CFS might have a high rate of investigation for endometriosis, when trying to find answers. There's also the possibility that women with endometriosis might get incorrectly labelled as having CFS due to some overlap in symptoms.
That does suggest a higher incidence, although a lot of women don't have endometriosis. Issues with self-reporting; and possibly women with ME/CFS might have a high rate of investigation for endometriosis, when trying to find answers. There's also the possibility that women with endometriosis might get incorrectly labelled as having CFS due to some overlap in symptoms.
Endometriosis: A Retrospective Analysis of Clinical Data from a Cohort of 4,083 Patients, With Focus on Symptoms, 2022, Signorile et al
There is this study of women with endometriosis. It concluded oddly that:
Members of the forum weren't very impressed. The authors seemed to be confused about chronic fatigue and chronic fatigue syndrome, and there were questions about who was being diagnosed with endometriosis. I'm not sure we can conclude much more from this study other than fatigue is a symptom of endometriosis. Therefore, it's possible that there is misdiagnosis (or the conditions really are related in some way).
There is this study of women with endometriosis. It concluded oddly that:
Members of the forum weren't very impressed. The authors seemed to be confused about chronic fatigue and chronic fatigue syndrome, and there were questions about who was being diagnosed with endometriosis. I'm not sure we can conclude much more from this study other than fatigue is a symptom of endometriosis. Therefore, it's possible that there is misdiagnosis (or the conditions really are related in some way).
Early menopause and other gynecologic risk indicators for CFS in women, 2015, Boneva, Lin, Unger
A study of 157 women in Georgia, US, based on a self-administered questionnaire. It found
The wider study of which this was a subset used a very loose CFS criteria, finding a prevalence of CFS of over 2.5%. So, it's highly likely that the sample included a lot of women who would not qualify for an ME/CFS diagnosis with a stricter criteria. Also, the reliance on self-reporting is not ideal.
A study of 157 women in Georgia, US, based on a self-administered questionnaire. It found
The wider study of which this was a subset used a very loose CFS criteria, finding a prevalence of CFS of over 2.5%. So, it's highly likely that the sample included a lot of women who would not qualify for an ME/CFS diagnosis with a stricter criteria. Also, the reliance on self-reporting is not ideal.
Last edited:
This is an earlier study related to the one above:
Gynecological history in chronic fatigue syndrome: a population-based case-control study, 2010, Boneva, Reeves et al
Kansas, US sample - 36 women with CFS (Reeves criteria - loose), and 48 'non-fatigued controls'.
It's not hard to poke holes in this study - it's too small, and the ME/CFS diagnostic criteria is too loose. Also, if fatigue is a common symptom of endometriosis, which it is, then the rate of endometriosis in the 'non-fatigued controls' probably understates the population-wide prevalence.
It's interesting to see the rate of endometriosis in those 48 non-fatigued controls - it's surprisingly high at nearly 17%.
Gynecological history in chronic fatigue syndrome: a population-based case-control study, 2010, Boneva, Reeves et al
Kansas, US sample - 36 women with CFS (Reeves criteria - loose), and 48 'non-fatigued controls'.
It's not hard to poke holes in this study - it's too small, and the ME/CFS diagnostic criteria is too loose. Also, if fatigue is a common symptom of endometriosis, which it is, then the rate of endometriosis in the 'non-fatigued controls' probably understates the population-wide prevalence.
It's interesting to see the rate of endometriosis in those 48 non-fatigued controls - it's surprisingly high at nearly 17%.
Last edited:
Co‐occurrence of immune‐mediated conditions and endometriosis among adolescents and adult women, Shafrir et al, 2021
The sample of (mostly young) women with endometriosis was well characterised:
It reported odds of women with various conditions having co-occurring endometriosis e.g.
chronic fatigue syndrome and/or fibromyalgia (OR:5.81; CI:1.89‐17.9)
The problem here is that the information about the illnesses was from a self-report questionnaire, and the study seems to use 'chronic pain/fatigue' as a synonym for CFS and fibromyalgia. There's a paywall, so it's hard to be sure, but it might just be that fatigue is common in endometriosis.
The sample of (mostly young) women with endometriosis was well characterised:
It reported odds of women with various conditions having co-occurring endometriosis e.g.
chronic fatigue syndrome and/or fibromyalgia (OR:5.81; CI:1.89‐17.9)
The problem here is that the information about the illnesses was from a self-report questionnaire, and the study seems to use 'chronic pain/fatigue' as a synonym for CFS and fibromyalgia. There's a paywall, so it's hard to be sure, but it might just be that fatigue is common in endometriosis.
Last edited:
frontiers in Pediatrics: Endometriosis as a Comorbid Condition in Chronic Fatigue Syndrome by Boneva, Unger et al 2019
2019 study -
The abstract suggests that there were 36 women with CFS and 48 controls. It looks as if this 2019 paper is a re-hash of the 2010 study above. It's just as under-powered in 2019 as it was in 2010.
Among the comments on this paper in the linked thread was a discussion of reported population-wide rates of endometriosis.
2019 study -
The abstract suggests that there were 36 women with CFS and 48 controls. It looks as if this 2019 paper is a re-hash of the 2010 study above. It's just as under-powered in 2019 as it was in 2010.
Fukuda criteria. Difference only just squeaks in as statistically valid.
Among the comments on this paper in the linked thread was a discussion of reported population-wide rates of endometriosis.
Yes, but I think the Unger etc papers noted above have played a larger part in spreading that idea than the sample size and strictness of criteria of the studies warrant.
In Norway it takes ~five years on average to get an endometriosis diagnosis. I don't doubt many are misdiagnosed with something else along the way. And chronic fatigue gets conflated with chronic fatigue syndrome.
I think the answer to that is 'no'. Some studies are ridiculously small and probably have biased selection criteria. All poorly characterise ME/CFS, either mixing it up with self-reported chronic fatigue or applying loose criteria. In some studies, endometriosis is poorly characterised.
It's possible that endometriosis is more common in women with ME/CFS than in the general female population. But I think it's still also possible that it isn't.
If anyone knows of any good relevant studies, please do post a note here.
Jonathan Edwards
Senior Member (Voting Rights)
I don't think any of these studies is going to give a useful answer because of ascertainment biases. To be of any use you really need a population-based cohort that has been assessed by as objective criteria as possible in a context in which, at the time, nobody knew that the question was whether ME and endometriosis were linked. Even then there will be ascertainment biases.
It might be interesting to know how many of the CureME cohort are documented as having endometriosis - if that was not specifically asked for but known comorbidities were recorded.
It might be interesting to know how many of the CureME cohort are documented as having endometriosis - if that was not specifically asked for but known comorbidities were recorded.
Kitty
Senior Member (Voting Rights)
It might be difficult to unpick even if the right questions had been asked in population studies, especially with cohorts that included older women. They were even less likely to get an endometriosis diagnosis than women are now, and it's quite hard enough.
All of the older women in my family who sought help with it were dismissed by their GPs at the time. It was only confirmed during unrelated procedures long after menopause—mostly colonoscopies that revealed the adhesions and scar tissue.
Leila
Senior Member (Voting Rights)
I have endometriosis as well. I'm in a pretty big self help group in my town and several women think they have "CFS". They have fatigue and lower energy levels and of course a lot of other co morbidities that are common in endo as well (hashimoto, IBS etc.).
I'm not diminishing their suffering at all, but from what I get when talking to them they don't have PEM after working out. It actually helps them*.
It's difficult for me to not say anything when they use ME lingo without actually meeting the core criteria.
I don't want to seem like I'm "gatekeeping" G93.3 - but this conflation of "chronic fatigue" and "chronic fatigue syndrome" is really dangerous because we all go to the same doctors in our area.
I'm worried about the impression our doctors will have of women that come with "Endo + CFS"
*not all, some I think really do have ME and have been properly diagnosed. But most aren't.
I'm not diminishing their suffering at all, but from what I get when talking to them they don't have PEM after working out. It actually helps them*.
It's difficult for me to not say anything when they use ME lingo without actually meeting the core criteria.
I don't want to seem like I'm "gatekeeping" G93.3 - but this conflation of "chronic fatigue" and "chronic fatigue syndrome" is really dangerous because we all go to the same doctors in our area.
I'm worried about the impression our doctors will have of women that come with "Endo + CFS"
*not all, some I think really do have ME and have been properly diagnosed. But most aren't.
Wyva
Senior Member (Voting Rights)
It's difficult for me to not say anything when they use ME lingo without actually meeting the core criteria.
I don't want to seem like I'm "gatekeeping" G93.3 - but this conflation of "chronic fatigue" and "chronic fatigue syndrome" is really dangerous because we all go to the same doctors in our area.
I'm worried about the impression our doctors will have of women that come with "Endo + CFS"
*not all, some I think really do have ME and have been properly diagnosed. But most aren't.
I don't think you are gatekeeping and I think this is indeed a common thing even with other diseases that tend to cause fatigue. I also have a significant number of people in my ME/CFS group with known autoimmune etc diseases who seem to be there mostly because of the chronic fatigue thing. Every once in a while I have to remind them that ME/CFS and PEM are not the same as chronic fatigue when they start giving bad advice to the others. Even though it is specifically stated in the group description that this is not a chronic fatigue group and the two are not the same. But yes, this conflation of CF and CFS is very widespread and deeply ingrained in both patients and doctors here too. It is an issue.
Kalliope
Senior Member (Voting Rights)
Yes, I've seen that too, but never really further specified with descriptions and diagnoses.
Dr. Peter Rowe mentioned "pelvic vein incompetence" as common in his ME-patients, discussed in this thread. I wonder if he linked it to dysautonomia/POTS, but not sure.
Leila
Senior Member (Voting Rights)
I was diagnosed with pelvic congestion, May Thurner and other compressions as well. Seems like an unholy alliance of lower abdominal issues.
I wonder though, if in ME it's more about the immune response rather than the amount/severity of endo that makes us more likely to experience severe symptoms from it.
If sunlight can force me into bed for weeks, maybe a tiny endo lesion that in an otherwise healthy woman wouldn't do much makes my pelvic nerves and inflammation go haywire.
Again, examples of small studies with noted issues, combined with low funding, and lack of will to thoroughly investigate.
Anecdotal, very small sample size: n=3 family members; 2 with Fibro, 1 with ME; all three have gynecological issues, including endometriosis, fibroids, and ovarian cysts.
As for the unsatisfactory studies, in our household we have a saying: "If you want it done right, do it yourself." This learned after experiences with poor, but expensive workmanship. I'm not saying our community has the funding, but there are those who certainly have the know-how.
Anecdotal, very small sample size: n=3 family members; 2 with Fibro, 1 with ME; all three have gynecological issues, including endometriosis, fibroids, and ovarian cysts.
As for the unsatisfactory studies, in our household we have a saying: "If you want it done right, do it yourself." This learned after experiences with poor, but expensive workmanship. I'm not saying our community has the funding, but there are those who certainly have the know-how.
Thanks @Kalliope.
I will have a look at that thread. I find Dr. Rowe's OI/POTS research encouraging.