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

Andy

Andy

Retired committee member
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 !
 
Abstract said:
Of a total of 6000 members, there were 398 respondents; 232 (59%) had not yet been treated for PCS.
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This survey tells us nothing. With a response rate of 7%, the self-selection bias will be through the roof.

Add to that two other problems with the sample: the high likelihood of mis-diagnosis of the PCS condition, either by doctors or by self-diagnosis, and of the various co-morbidities too, and there's very little that's solid.
 
Dolphin said:
For what it is worth, the lead author has posted around 10 tweet replies like this in reply to ME/CFS messages today:
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My daughter, who has ME but rarely tweets about it, and is not involved in any ME group or advocacy, has received two links to this paper on twitter - one in a tweet linked to her and one as a reply to one of her tweets nothing to do with ME. What's the guy playing at?
 
Andy said:
"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.
Click to expand...
The full list of authors probably sheds some light on that:
Steven J Smith1, Michael Sichlau1, Luke E Sewall1, B Holly Smith2, Brenda Chen3, Neal Khurana4, Peter C Rowe5

Peter Rowe, seems to be the one we know - he's keen on the hypermobility - ME/CFS link and neck surgery too I think.

The first three authors are all from
"Vascular and Interventional Professionals, LLC, Hinsdale, IL, USA"
That's a private company of interventional radiologists
An interventional radiologist looks inside you with imaging (CT, ultrasound, x-rays, or MRI), then uses imaging to painlessly pass tiny tubes or needles into the site of disease and fixes it without an incision or stitches.
Click to expand...
Hmm, I await developments. Perhaps it is progress to move on from psychological blockages to physical ones.
 
I really should go and do something useful. But, I thought you might enjoy this 2 minute promotional video
https://www.virchicago.com/the-interventional-initiative-featuring-our-own-dr-smith-on-pelvic-pain/

I'm agnostic on the interventional radiology treatment of pelvic congestion - it looks like a debilitating problem and it would be great if the solution is easy. But, I found the video hilarious- there's this black silhouette of the doctor (you know it's a doctor because he has a green surgical mask and a stethoscope) that pops up like a ninja super hero and we are informed he has a 'stealth approach'. Also look out for the leg surgery that involves a silhouette of a leg and a big knife, with the cut bit of the leg floating off as though the surgery was done in a no-gravity environment.

I assume the 'Dr Smith' of the video is the principal author of this paper.
 
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