Endometriosis and ME/CFS

[ukxmrv]

I wonder how many women with Endometriosis and ME are suffering at home and don't know that they have it. There are the obstacles of getting a doctor to listen and agree to do a referral and then being well enough to go and have some tests. It too a MRI scan to dx mine and that was after 20 years. My niece has been diagnosed with Endo now and her parents went the private route.

 

[Leila]

I wonder how many women with Endometriosis and ME are suffering at home and don't know that they have it. There are the obstacles of getting a doctor to listen and agree to do a referral and then being well enough to go and have some tests. It too a MRI scan to dx mine and that was after 20 years. My niece has been diagnosed with Endo now and her parents went the private route.

It's a shame. It's really not rocket science to think of endometriosis when you have excruciating period pain and other cyclic symptoms

I got my diagnosis after googling for 2minutes and yet it took 4 years to have it formally confirmed.

 

[DokaGirl]

It's a shame. It's really not rocket science to think of endometriosis when you have excruciating period pain and other cyclic symptoms

I got my diagnosis after googling for 2minutes and yet it took 4 years to have it formally confirmed.

I had a similar experience with diagnosis of rosacea. Although it was a person without medical training who told me it was rosacea. I had seen my doctor about something else. The spots were there plain as day, but no comment or dx was forthcoming.

 

[Hutan]

[ME/CFS] and Comorbidities: Linked by Vascular Pathomechanisms and Vasoactive Mediators? 2023, Wirth and Löhn
Paper considers endometriosis

 

[SNT Gatchaman]

Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review (2023)

Endometriosis patients may have an increased risk of developing LC (aHR = 1.19, 95% CI 1.11–1.28) based on a population-based retrospective cohort-matched study using data from electronic health records of non-hospitalized LC patients

Also referencing —
Gynecologic disorders and menstrual cycle lightheadedness in postural tachycardia syndrome (2012, PubMedCentral)
High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis (2002)

2012 reference said —

Women with POTS had a significantly higher incidence of [...] endometriosis (20% versus 5%; P=0.009) [...]. When a subset of control women and POTS patients with a history of using oral contraceptive pills (OCPs) were evaluated [...] for gynecologic abnormalities, the difference in endometriosis (21% versus 5%; P=0.007) [...] remained significant.

 

[SNT Gatchaman]

Some refs in relation to theories around endometriosis and potential mechanistic overlaps with other diseases.

Endometriosis in females without a uterus —
Clinical Features and Management of Endometriosis among Patients with MRKH and Functional Uterine Remnants (2021)
Endometriosis in a Patient with Mayer-Rokitansky-Küster-Hauser Syndrome and Complete Uterine Agenesis: Evidence to Support the Theory of Coelomic Metaplasia (2010)

(Rare endometriosis in males) —
Endometriosis in a Man as a Rare Source of Abdominal Pain: A Case Report and Review of the Literature (2018, Case Reports in Obstetrics and Gynecology)
An unusual cause of abdominal pain in a male patient: Endometriosis (2021, Avicenna Journal of Medicine)

Recent work on cell signalling genetic and epigenetic processes, including microRNAs —
The Role of Long Non-Coding RNAs in Endometriosis (2021, International Journal of Molecular Sciences)
The Pathogenesis of Endometriosis: Molecular and Cell Biology Insights (2019, International Journal of Molecular Sciences)

 

[Kiristar]

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).

I suspect the overlap is much higher than reported figures.

Typically Endometriosis only gets diagnosed fairly late, it's predominantly still seen as a middle aged woman's disease, though that attitude is slowly changing I believe.

I had the severe deep infiltrating type. I was told I'd had it since birth and it got triggered at puberty so I'd lived with the symptoms 25 years before my actual diagnosis. At first my worsening ME fatigue & malaise was blamed on it because it can cause fatigue.

I only got diagnosed with ME/CFS 14 months after contracting viral meningitis from the excision surgery which triggered disease progression to severe aided by a get like phased return to work (not the luckiest chain of events ) . So a similar diagnostic time lag assuming I actually first got ME age 20 after EBV/Glandular fever, rather than from the VM.