An online survey of pelvic congestion support group members regarding comorbid symptoms and syndromes, 2022, Smith et al

Abstract

Objectives
Patients with pelvic congestion syndrome (PCS) often report overlapping somatic symptoms and syndromes. The objective of this study was to explore the prevalence of co-existing symptoms and self-reported syndrome diagnoses among women with PCS and to inform future research hypotheses.

Methods
A brief online survey was offered to members of a PCS support group website. Responses were assessed for self-reported co-existing symptoms and formal diagnoses, including: chronic fatigue syndrome, fibromyalgia, postural tachycardia syndrome, irritable bowel syndrome, migraines, interstitial cystitis, and temporomandibular joint dysfunction.

Results
Of a total of 6000 members, there were 398 respondents; 232 (59%) had not yet been treated for PCS. Among these, the most prevalent co-existing symptoms were as follows: severe fatigue (72%), dizziness (63%), IBS symptoms (61%), brain fog (33%), migraines (49%), polyuria or dysuria (41%), excessive sweating (31%), TMJ pain (31%), and loose skin or lax joints (18%). These are much higher than reported for the general female population.

The most commonly self-reported comorbid syndrome diagnoses for the overall group of 398 were: irritable bowel syndrome (29%), fibromyalgia (13%), spinal nerve problems (18%), interstitial cystitis (10%), postural tachycardia syndrome (9%), hypertension (11%), chronic fatigue syndrome (10%), and Ehlers-Danlos syndrome (6%). Other than with hypertension, these rates are variably higher than in the general population.

Conclusion
Several self-reported co-existing symptoms and syndromes are more prevalent in members of a PCS support group relative to the reported prevalence in the general population. More formal investigation is warranted to evaluate this finding and to investigate potential etiologic links. Ehlers-Danlos Syndrome appears to be common in self identifying PCS women.

Paywall, https://journals.sagepub.com/doi/10.1177/02683555221112567

 

"Ehlers-Danlos Syndrome appears to be common in self identifying PCS women."

I assume this shows the author's interest or bias given that other conditions are reported more commonly within this cohort.

"The most commonly self-reported comorbid syndrome diagnoses for the overall group of 398 were: irritable bowel syndrome (29%), fibromyalgia (13%), spinal nerve problems (18%), interstitial cystitis (10%), postural tachycardia syndrome (9%), hypertension (11%), chronic fatigue syndrome (10%), and Ehlers-Danlos syndrome (6%). Other than with hypertension, these rates are variably higher than in the general population."

 

Pelvic Congestion Syndrome :

"Differential Diagnosis
The list of the differential diagnoses for pelvic congestion syndrome is vast. It includes diseases of the urinary tract, gastrointestinal tract, musculoskeletal disorders, disorders of neurological origin, gynecological problems, and mental health disorders. Painful bladder syndrome, pelvic inflammatory disease, interstitial cystitis, endometriosis, pelvic neuralgia, irritable bowel syndrome, myofascial pain, and pelvic floor myalgia are the common causes of chronic pelvic pain. Formulating the accurate diagnosis of the underlying cause of chronic pelvic pain is difficult even with the use of laparoscopic and diagnostic radiological tests."

my underlines !

 

I wonder how many of the women with PCS (diagnosed by doctor or themselves) have had CBT as the only treatment offered.

 

For what it is worth, the lead author has posted around 10 tweet replies like this in reply to ME/CFS messages today:

He also wrote this: