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Pelvic Congestion Syndrome - Anyone have any knowledge or experience of it?

(8 Posts)
tutu100 Sat 22-Mar-14 00:44:40

I have suffered from pelvic pain for over 15 years now. I have had various tests done which have showed a combination of minor problems, but they do not explain the pain I get. Today I have been in agony and have spent most of the day lying down. Some googling of my symptoms bought up pelvic congestion syndrome, which I have never heard of, but I can tick every symptom and the description of it is exactly what I have been suffering from all these years.

I have an appointment with my GP in a few weeks so I will ask about it and demand a referral back to gynae, but I wondered if anyone else had experience of it, and can suggest any questions which might be good for me to ask. I am fed up of being in so much pain and discomfort and just being fobbed off.

1966gettingold Sat 22-Mar-14 20:50:02

I have been diagnosed with Puendal Neuralga, I am under the pain clinic at UCHL who specialise in pelvic pain! I am starting specialised physio in a couple of weeks. There is a very good book called chronic pelvic pain dysfunction. Explains everything and the physio whom co wrote it, I will be staring physio with her in two weeks. I paid to see a private consultant for the initial diagnosis, I will be seeing one of the top uro/gynaes who's specialist area is pelvic pain in two weeks also. You need to find the experts in this field, as my local gynae did not fill me with confidence.

tutu100 Mon 24-Mar-14 12:53:37

Thank you for your help. I will try and track down that book and look into the possibility of having a private consultation then. Do you mind me asking how much yours cost?

1966gettingold Mon 24-Mar-14 13:31:10

Will pm you.

Fleurey Sat 29-Mar-14 20:57:36

Good website which explains symptoms, and treatment of PCS is http://www.collegeofphlebology.com/pelvic-congestion-syndrome/what-is-it. Very, very important to be referred to a specialist for diagnosis by trans-vaginal ultrasound (best way to diagnose) - it's a very simple procedure.
Treatment is by pelvic vein embolisation, a day case procedure. Many gynecologists are not aware of this condition. This is a vascular condition (essentially varicose veins in pelvis) and embolisation needs to be done by an experienced Interventional Radiologist. I went for ultrasound to the Whiteley Clinic in Guildford, private but worth it for diagnosis!!

Hedgehog80 Sat 29-Mar-14 23:03:11

I have this, it was diagnosed (at my local rubbish hospital) then they discharged me telling me to stock up on painkillers for bad days.

Fleurey Sat 05-Apr-14 11:24:26

Hi Hedgehog, let me know if u want some advice on how to go further with treatment options. Embolisation is available on the NHS for pelvic congestion.

Markmyplace13 Sun 06-Jul-14 13:39:57

Sorry to bring up an old thread but was doing a search and found this. Just wondering if you have been given a diagnosis tutu100 and also how the physio is going 1966? I've been suffering really badly the last few months in the weeks leading up to my period and have been in agony this weekend, can barely stand up (period due any day). As an active person I am hating this and my symptoms all add up to pelvic congestion syndrome although my doctor didn't mention it during my appointment and just referred for a scan which I have next week.
Any pointers or things to ask them to look out for would be really appreciated.

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