Pelvic Congestion Syndrome – What is it?

I recently realised I’ve focussed a lot on the ME/CFS and Chronic Pain aspects of my illness and have been completely ignoring the one diagnosis that most of you probably haven’t even heard of; Pelvic Congestion Syndrome (PCS).

So I thought I should do a post on what PCS actually is and how it affects me.

PCS is a medical condition that usually affects women who have not yet reached menapause and have had multiple children. My situation, where I haven’t yet had any children, is according to my gynaecologist, rare.

What happens when you have PCS is that the veins within the pelvic area (usually around the ovaries and uterus) become enlarged causing varicose veins. These veins fill with blood over the course of a day causing an increase in pelvic pain as the day goes on.

Here are a few sites that I feel explain this well:

What is Pelvic Congestion Syndrome (

Pelvic Pain (Pelvic Congestion Syndrome) (

Pelvic Congestion Syndrome (

How PCS affects me

In my case, the varicose veins are all around my uterus. They cause a constant dull ache in my stomach with pain increasing during the day to become sharp stabbing pains by late afternoon.

As with my other chronic pain, the pain caused by PCS, increases 10 fold during my period. For this reason, my gynaecologist has me trialling hormonal birth control to control the pain. We began with trying several different pills which all caused constant nausea and breast pain and didn’t seem to reduce the pelvic pain by much at all, so they were stopped.

Right now we are trialling Depo Provera. Again this seems to be causing almost constant nausea but I have less breast pain and, because it has stopped my period completely, it appears to have lessened the likelihood of an increase in pain at certain times of the month. I still have times when the pain does increase but I don’t know if that is a hormonal thing or not. I have also been having hot flushes quite regularly since getting the injection which I really don’t like. Unfortunately, because it is an injection, I have to wait the 3 months for it to wear off before the side affects should stop. I will be returning to my gynaecologist in February when I’m due for the next shot, but before getting it I think I will go through all these side affects and see what he has to say.

The problem for me is that because I haven’t already had children, it’s been recommended that I don’t attempt embolisation or any other surgical treatments for this pain at this time as they could impact on my fertility. As I’ve previously mentioned, having children is an important part of my future that I do not want to give up so in my mind these treatments are not an option at this stage. As it is I’m concerned of the long term affects of the Depo Provera on my fertility.

If the Depo Provera is a no go at my next appointment, I really don’t know what the next step will be as my gynaecologist has said this was the last treatment he could think of trying. I may just have to deal with the pain naturally for a while until we have children.