Pelvic conjestion syndrome

[Abarc]

Hello, for over a year now I've been having chronic pelvic pain, I went to the GP 4 months ago and got a ultrasound referral. They suspect it could be pelvic conjestion syndrome PCS (basically varicose veins around my ovaries) I'm struggling to find any UK based information on the condition. I have been put on the wait list to see a gynaecology specialist for pain management or surgery options, but this could be up to 75 weeks!

I was hopefully someone on here maybe knows about this condition and could offer me any advice.

Thanks,

Amy

[RockRoche]

Hi I am part of a pcs support group on Facebook which is really helpful. I am also waiting for a gyne appointment. For pcs we need to see an interventional radiologist who specializes in pcs. In some areas it seems the NHS do not refer, but you can get referred to one out of your area if you're prepared to drive. The Whitley Clinic are private specialists in vein conditions. If you read their website there's some very help info. I'm sorry you've been in pain. It's awful I know. I'm in the same position. I hope this helps.

[Abarc in reply to RockRoche]

Hi, thanks for the great info! I'll have a look on Facebook 😊

[EffieT in reply to RockRoche]

I am in Canada, and looking for someone to diagnose whether Pelvic congestion is the cause of my pelvic pain. My MRI shows considerable varicosity. I will check out the FB group. Good Luck with your search for treatment.

[Harriseena]

Hello

I’ve just been diagnosed with this also from having a laparoscopy for endometriosis.

You need to see an Interventional Radiologist they are the vein specialist a gynaecologist can’t do anything but suggest that.

I’ve researched Dr Google and came up with the Whitely clinic in Guildford and London. Private and expensive but the only place I’ve found so far.

Good luck

[Abarc in reply to Harriseena]

Thank you for the info!

[claireforresterosteo]

I was diagnosed with this more than 10 years ago, I was having terrible pain and sciatica at the time. I changed my diet cutting out alcohol, sugar and dairy and gluten for a few months as well as having some appointments with an osteopath in London Renzo Molinari that worked internally vaginally to release tension and improve blood flow/drainage along with yoga. These things made a HUGE difference for me and 6 months later no sign of it on the ultrasound and no pain. Hope this helps, good luck.

[ShatteredHummingbird]

hi. I hope the wait passes and the options help you.

I was told I have PCS several years after an endometriosis diagnosis and it’s very unclear for how long I’ve had it or which is causing which symptoms. Gynaecologist today seemed to change her mind on referring me to a radiologist when she saw my other issues. (Long story).

She mentioned that one can lead to the other but I was wondering what the symptoms are. Do you mind sharing what you’re experiencing?

[kellerfly]

I was diagnosed with this 18 mos ago. I had to be seen by a vein specialist to receive this diagnosis. I was 75% blocked on my left side, so they decided to proceed with stents in my iliac veins to try to help my pelvic congestion. It was an incredibly painful recovery. And. It did not help with my pain at all. I am now on blood thinners. And I have not been able to receive effective treatment for my fibro and pelvic pain because of it.