diagnosis finally

[Aprilbaby24]

Apparently I have Pelvic Congestion Syndrome !!!!

I’ll take it, if I can get some help 🙄

Anyone else have this? Shceduled for a Caudal epidural anytime soon.

[sarahalice]

Hi April.Congratulations on getting somewhere!

I'm certain that I have PCS too.

Symptoms started over 2 years ago. I've had the usual scans apart from the keyhole investigation.

I've been told over and over again that PCS is not something they will investigate for as it's not seen as a genuine condition in the UK.

I know I need to see a specialist other than just a gyne, that it's more to do with veins that anything else. But they just don't want to send me anywhere else, other than gyne and all they want to do it fit the mirena coil. Have you tried this, has it helped?

I'm just wondering which county you live in and what route did you go through to get some answers. I'm in Worcestershire.

Thank you so much

Sarah

[Aprilbaby24 in reply to sarahalice]

hi, I live in Newcastle and pushed for the pain clinic. They are the ones who put a diagnosis down. If you read up about it, it says hysterectomy is an option. If the injection doesn’t work, I’ll push for that, I get really down with it all and can’t leave the house with out taking codine 😕

[sarahalice in reply to Aprilbaby24]

Good morning Thak you so much for replying.

I had been offered to be referred to the pain clinic, but I thought they just give you pain meds. It's great they actually investigate! So I will ask my gp to refer me.

Best of luck with the injections, fingers crossed they do the job x

[Aprilbaby24 in reply to sarahalice]

Yes, I was surprised with the appointment too….. hope fully a way forward … lots of luck xx

[Kat791 in reply to sarahalice]

Hi, I'm sorry you've been told that it's not seen as genuine condition in the UK. I don't see why that would be true. PCS is when you develop varicose veins around the ovaries, and is a legitimate condition. Also the NHS must recognize it as a condition as I found this NHS patient information leaflet online outlining a specific treatment for said condition, only they call it, "pelvic venous incompetence".

uhcw.nhs.uk/download/client...

If the NHS have a leaflet about treatment for it, then they must recognize it as a condition. Whoever you're seeing either doesn't know what it is or is lying to you for some reason. Hope this helps.

[Aprilbaby24 in reply to Kat791]

Well I was told it was chronic pelvic pain! And this was my first pain clinic appointment. Thanks for the reply x

[sarahalice in reply to Kat791]

Thank you so much for that link, its very helpful.The word that has been used by at least 3 docs, when I brought up that I thought I have PCS, is that's controversial?? That was their standard response.

I wondered how pelvic pain could be controversial 😆. However they used sort varicose veins as normal op back in the 80s. Both my mum and dad had their VV done. But that's not a service the NHS widely offer anymore, so maybe there's not so many specialists to do it?

I know if you search PCS or even OVE in the NHS website, nothing comes up. (That I can find)

It will only come up via google search of the handful of hospitals that will investigate it.

Gynes have no interest, because veins not their area. I've tried many times to get the gynaecologists to look at my massive, bulging vein in my thigh, which is the vein I believe is causing my pelvic pain, however they have never been interested.

There's so many horror stories online of women going through all the investigates, but the gynes don't even comment in the reports if they saw VV around the ovaries or not. Its believed most pelvic pain could be linked to PCS, but it feels like it's something we can just deal with.

I'm sure if it was penis congestion syndrome, it would be taken more seriously.

X

[Normie-Orms]

Hi there how did they know what it was? Was something seen on a scan or blood test? I've had everything and nothing can be seen. Thanks Norma

[Aprilbaby24 in reply to Normie-Orms]

I don’t know how they came to that diagnosis, just asked me what scale the pain was on, what I can do, how long I’ve had it etc. I’ve had scans and nothing showed up xx

[Kat791 in reply to Normie-Orms]

Hi, I found this on the internet about diagnosing PCS. Hope this helps.

How is pelvic congestion syndrome diagnosed?

Your healthcare provider or an OB/GYN doctor may diagnose the condition. They will ask about your health history and your symptoms. You will also have a physical exam. This will likely include a pelvic exam.

You may also need some tests, such as:

-Urine tests to check for problems with your urinary system

-Blood tests to check for pregnancy, sexually transmitted infections (STIs), anemia, and other conditions

-Pelvic ultrasound to look for growths in the pelvis

-Doppler ultrasound to check the blood flow in the pelvic blood vessels

-CT scan or MRI for more detailed pictures

-Diagnostic laparoscopy to rule out other causes of pelvic pain

-A procedure to take X-rays of the pelvic veins (venography)

[Kat791 in reply to Kat791]

Basically Pelvic Congestion Syndrome is where you develop varicose veins around your ovaries. So that's what they need to check out.

[Aprilbaby24 in reply to Kat791]

thank you