frontiers in Pediatrics: Endometriosis as a Comorbid Condition in Chronic Fatigue Syndrome by Boneva, Unger et al 2019

Only the abstract is available for time being.

Endometriosis as a Comorbid Condition in Chronic Fatigue Syndrome (CFS):
Secondary Analysis of Data from a CFS Case-Control Study

Conclusions. We found that more than a third of women with CFS reported endometriosis as a comorbid condition. The endometriosis comorbidity was associated with chronic pelvic pain, earlier menopause, hysterectomy, and more CFS-related symptoms. However, endometriosis in women with CFS did not appear to further impact functioning, fatigue, inflammatory markers or other laboratory parameters. Further investigations including younger women are warranted.

 

Case-control study... I guess this was overlooked as part of their previous population based studies.

 

Is this a warning shot across the bows of women with endometriosis that their condition is going to be "disappeared" (even further than it already is) under the umbrella of "CFS"? And that women with severe period pains are going to be told they have faulty illness beliefs and they just need CBT to fix it?

Unless things have changed that I'm not aware of, in the UK the "treatment" (for what its worth) of endometriosis is to laser it during an endoscopy. Unfortunately, lasering endometriosis is like taking the top off an iceberg. It needs to be cut out for anything to be gained. Some surgeons do this in the US but I don't know how widespread it is. In the UK I've never heard of it being done - they still insist on using laser "treatment" which leaves women no better off, but being ignored because they've been "treated" haven't they?

 

Perhaps not overlooked so much as attempting to milk this cfs data (a Fukuda etc cohort) for anything they can get.
(They are continuing to analyze this data which they gathered over 16 years ago. )

 

It is peculiar that this has been published in a paediatric neurology journal!

I find it hard to believe that if 30% of women with ME have endometriosis this has not been documented before.

 

Are they just trying to get on our nerves?

Keep in mind they don't have ME (these studies use Fukuda)-- they have CFS or something CFS-like.

 

The case definition used appears to be the Fukuda definition. Over 30% of women with "cfs" had endometriosis vs. 16.7% of healthy controls.

2011 study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3017420/

"Results
CFS cases and controls had the same mean age (51 years) and age at menarche (12 years). Overall, a greater proportion of women with CFS than controls reported pelvic pain unrelated to menstruation (22.2% vs. 1.7%, p = 0.004), endometriosis (36.1% vs. 16.7, %, p = 0.046), and periods of amenorrhea (53.9 % vs. 46.2%, p = 0.06). Compared to controls, women in the CFS group had a higher mean number of pregnancies (2.8 vs 2.0, p = 0.05) and gynecological surgeries (1.8 vs. 1.1, p = 0.05). Similar proportions of the CFS (69.4%) and control (72.9%) groups were menopausal. Although menopausal women in the CFS and control groups had similar mean age (55.5 and 55.8, respectively), menopause occurred about 4.4 years earlier in the CFS group (41.7 years vs. 46.1 years, respectively, p = 0.11). Among menopausal women, 76% of the CFS group reported hysterectomy vs. 54.6% of controls (p = 0.09), and 56% of women with CFS reported oophorectomy vs. 34.3% of controls (p = 0.11). (emphasis added)

Conclusions
The higher prevalence of gynecological conditions and gynecological surgeries in women with CFS highlights the importance of evaluating gynecological health in these patients and the need for more research to clarify the chronologic and the pathophysiological relationships between these conditions and CFS."


It would be interesting to see a study using the CCC or the ME-ICC in consideration of gynecological problems.

ETA: an additional study - this one done in 2015, with similar conclusion:
https://www.ncbi.nlm.nih.gov/pubmed/25647777

 

Thank you @Hutan

Yes, the numbers are thought provoking to say the least. Thank you for your analysis. I agree, we need bigger studies. The usual mantra, isn't it - more, and larger studies, please!

 

Hysterectomies are very big business,at least in the US.

According to this link : https://www.hersfoundation.org/facts/

When they refer to castration in the above quote they are referring to the removal of ovaries, not the removal of testicles.

I should also point out that the website I just linked doesn't appear to be updated very often these days, so I suspect the $17billion dollars is rather out of date.

 

Are you perhaps suggesting that patients with pure endometriosis (whose symptom include chronic fatigue) might have been misdiagnosed as having ME/CFS?

 

I think this stuff may simply indicate that self-reported evidence of conditions is very unreliable. The prevalence of endometriosis according to epidemiological data is about 1.5%, not 16%. Another question is how these people were recruited. US cohorts very often seem to be based on clinic attenders - who may be highly unrepresentative.

 

@JonathanEdwards It's my understanding that Endometriosis is thought to affect roughly 1 in 10 women. This figure is the widely cited by various Endo orgs, medical literature, etc.

 

Yes, it seems to be another condition where diagnosis is a huge issue.
I have a friend who took years to be diagnosed, and only through her own persistence.

ETA subsequent reports of pain were then dismissed as related to endometriosis for over a year. When she managed to get investigation, she had a large tumour - luckily found to be benign.

There are obviously still huge problems in presenting as a female in pain.

Apologies - i don' t have similar tales for men, though prostate may well be/ have been similar.

 

There seems to be considerable uncertainty about this. All the quotes of up to 10% I can find seem to make a diagnosis by inference from symptoms that could be other things. The only paper I found with prevalence of confirmed endometriosis suggested about 1.5%.

 

'No further impact on functioning' is a strange finding. I'm from an extended family where most of the women had/have endometriosis, and most couldn't even get up from our beds on Day 1 without passing out. My ME has never caused pain on that scale, or bladder and bowel problems [from scar tissue], or uterine contractions accompanied by drenching sweats every few minutes. For four or five days every month, endometriosis made the symptoms of moderate ME feel like a minor inconvenience.

 

If I can remember I will write respected Endo specialist (now retired) & researcher Dr. David Redwine and ask his opinion on the matter. See what his 2 cents are

 

With MRI, the diagnosis is 11%, in this population-based sample:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3143230/

1-2% is from only checking via surgical methods, which will more rarely occur.

 

Sorry you have all this trouble.

I do have pains as bad as my gyna pains, but it was that pain that taught me to manage pain. I have EDS as well as ME. I also get kidney stones. So yeah.