Pelvic Congestion Syndrome

[Kalliope]

Last summer BBC had an article on Pelvic Congestion Syndrome.

I had never heard of that before, and neither had my doctor, but then dr. Peter Rowe mentioned it briefly in his recent lecture for FNIH titled: Observations on long Covid through an ME/CFS lens (at approximately 13. minutes) by the name "Pelvic vein incompetence".

Seems this might be connected to other vascular problems and my impression is that dr. Peter Rowe thinks this is quite common in ME patients. I gathered this concerned female ME-patients only, but just googled it, and it seems that this can occur in males as well.

I was wondering if other ME experts have seen the same in their patients, and whether there might be some literature on this?

Any thoughts, information or input you have, I'd be grateful if you shared

 

[Jonathan Edwards]

Seems this might be connected to other vascular problems and my impression is that dr. Peter Rowe thinks this is quite common in ME patients.

On a quick look at the literature I see that this' pelvic vein incompetence' is suggested by some to occur in a third of women. At that rate being 'common in ME' does not seem to mean much.

I had never heard of it as a recognised condition.

 

[Arnie Pye]

"Pelvic congestion syndrome" is not a term I've come across very often but when it is used it seems to be used in much the same way that FND or primary dysmenorrhea is i.e. as a term used in gaslighting women who have severe gynaecological pain from conditions like endometriosis that the doctor doesn't want to look for.

 

[Leila]

I was diagnosed with pelvic congestion as well as May Thurner and Nut Cracker and Dunbar Syndrome/MALS.

I also have severe endometriosis and wanted to make sure I'm not missing anything/blame all my lower abdominal and leg pain on that when there might be something else going on.

Turned out it mostly was the endometriosis bc it got so much better with the right hormonal treatment.

There seems to be some controversy about the legitimacy of these syndromes. I think they can be a real problem in some women but need good differential diagnosis since some of them are pretty common.

May Thurner was the only thing that my doctors took more seriously (compression of the left leg vein) and suggested stenting it but I didnt want to do that.

 

[Kalliope]

pelvic vein incompetence' is suggested by some to occur in a third of women. At that rate being 'common in ME' does not seem to mean much.

Thanks. I did not know that this seems to be a common phenomenon also outside of this patient group.

"Pelvic congestion syndrome" is not a term I've come across very often but when it is used it seems to be used in much the same way that FND or primary dysmenorrhea is i.e. as a term used in gaslighting women who have severe gynaecological pain from conditions like endometriosis that the doctor doesn't want to look for.

I'm afraid you're probably right in that assumption

I was diagnosed with pelvic congestion as well as May Thurner and Nut Cracker and Dunbar Syndrome/MALS.

I also have severe endometriosis and wanted to make sure I'm not missing anything/blame all my lower abdominal and leg pain on that when there might be something else going on.

Turned out it mostly was the endometriosis bc it got so much better with the right hormonal treatment.

There seems to be some controversy about the legitimacy of these syndromes. I think they can be a real problem in some women but need good differential diagnosis since some of them are pretty common.

Oh my, that' a lot. So glad to hear endometriosis treatment has helped, and hope you didn't have to go very long with a lot of pain before right treatment was provided.
I had never even heard of the other diagnoses..

 

[Leila]

Took over 4 yrs to get the right diagnosis and then another 2 for the right treatment. Unfortunately that's common though in gyneological illnesses.

I think the more tests you do on sb the more abnormalities you might find and then it's tricky to differentiate what diagnosis is causing your symptoms and what finding might be benign.

This is a good summary of some common compressions.

Coming back to the initial post in this thread I dont see though how they are more common in pwME.

I was wondering, when I was diagnosed, if weak connective tissue might play a role. I was diagnosed with benign hypermobility and asked the doctor (geneticist) if that might make veins and arteries more prone to get compressed by surrounding structures.

She mentioned vascular EDS and said that here aneurysms can occur, so the weak tissue makes the vessel bulge outwards rather than being squeezed/compressed from the outside.

 

[Arnie Pye]

weak tissue makes the vessel bulge outwards rather than being squeezed/compressed from the outside.

I could have got the wrong end of the stick here about your condition. But if you have endometriosis you could well have adhesions or scarring as a result. They are more likely to squeeze blood vessels and possibly pull or distort nerves and blood vessels.

 

[DokaGirl]

@Arnie Pye

I'm with you on the gaslighting theory.