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

[sarahalice in reply to Aprilbaby24]

You too, thank you x

[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

[kellerfly in reply to Normie-Orms]

I was diagnosed by a vein doctor, specifically. Once I was diagnosed, I was found that my iliac veins were congested on the left side almost completely. On the right side they were congested 50% so I did have stents placed in both. The stents did not help my pain. And I am on blood thinners now — which gives me a whole slew of other issues.

[Aprilbaby24 in reply to kellerfly]

Hi, it is so confusing with all these different complications surrounding the pelvic area!!! I’m literally sitting here in pain after a small amount of housework.I’m trying not to take codine as it led to constipation like I’ve never felt in my life!!!! Hopefully the epidural will bring some relief but I’m not banking on it. Good luck xx

[kellerfly in reply to Aprilbaby24]

Hope so. I am surprised that is how they are telling you they are treating it. From my experience, I have been given a caudal epidural but it was for my pelvic pain, not for the congestion — the congestion had to be treated with the stents specifically. The veins are blocked (congested) and have to be physically opened like that. The epidural will help the pain, but it is temporary relief, will not treat the congestion.

[Aprilbaby24 in reply to kellerfly]

Thank you for the insight, I’m trying to hold on to a thin thread of hope. How long was temp? I’m faced with the decision of working again sooner or later xx

[kellerfly in reply to Aprilbaby24]

Relief lasted 6 weeks for me with the caudal epidural.

[Aprilbaby24 in reply to kellerfly]

That’s crap!!! Did they offer another one?

[Aprilbaby24 in reply to Aprilbaby24]

Where in Newcastle are you?

[kellerfly in reply to Aprilbaby24]

I am not in Newcastle. I am in the US, Michigan. And yes, I was given a follow up — but only every 3 months. Subsequent epidurals were about the same. Maybe 6 weeks of about 50% function. And then they stopped working altogether last year. I am seeing a specialist in a few weeks.

[redthedog85]

Hi! Sorry to jump in this convo out of nowhere after days of it being posted but I just had a Laparoscopy to investigate my pelvic pain and it mentions on my discharge letter that my pelvic vessels are conjested. Nothing about this was mentioned to me afterwards, I only got my discharge letter because I had to go to my gp nearly two weeks later as I was still bleeding. They seem to not be bothered about giving me a proper diagnosis and treatment for this and I wondered why so I came on here to see if anyone else had this issue and found this thread! The gynaecologist said I would have to speak to the surgeon's secretary to push for him to write a letter about the veins!! I thought she was kidding!!

[Aprilbaby24 in reply to redthedog85]

hi there, nobody has mentioned about congested veins to me either before I got the letter from the pain clinic. It’s a mine field 😳😬🙄

[redthedog85 in reply to Aprilbaby24]

Can't believe I found your post, it's like I wrote it! 🤣 it's exactly what's happening to me. How did you manage to get seen at the pain clinic? Which one did you go to? I live in Newcastle too

[Aprilbaby24 in reply to redthedog85]

Hi, it was talking therapy who mentioned a pain clinic, so I asked my gp and they referred me. The appointment came and they asked a few basic questions and said I was to have an epidural !!!! This was based at Blaydon, just waiting for my appointment for the epidural at the team valley. Just keep pushing!! Good luck xx

[Aprilbaby24 in reply to redthedog85]

Where in Newcastle are you?

[redthedog85 in reply to Aprilbaby24]

I live in Hebburn. What about you? I usually go to the QE for treatment. They're who did my laparoscopy that found the conjested veins but I'm still waiting to hear if the endometrial biopsy they took has any answers too.

[Aprilbaby24 in reply to redthedog85]

I live in Swalwell, I’ve never had a laparoscopy so how they know!!! Unless they went by symptoms only.🤷‍♀️

[redthedog85 in reply to Aprilbaby24]

What are your symptoms? They were looking for endometriosis with me and found none.

[redthedog85]

Thanks so much for the info! You have been more help than any gp I have met yet 😅 do you have an appointment for your epidural yet?

[Aprilbaby24 in reply to redthedog85]

Hi, no I’m still waiting, but I’ll keep you posted x

[MillieEllie]

hi. I’ve also been told I have pelvic varices after months of pain and bloating etc. I have had an mri and ct scan and both showed large pelvic veins. Did you get any treatment ? I’m seeing my doctor on Monday to ask for her help in a referral but not sure who to ? Gynaecology not terribly interested in my pain. Many Thanks

Jennifer

[Aprilbaby24 in reply to MillieEllie]

Hi, I’ve got an appointment for the 22nd aug for an epidural, god ! I hope it helps, so sick!!! Good luck with your gp xx

[MillieEllie in reply to Aprilbaby24]

Doubt I’ll have luck with gp. I’ve contacted the Whiteley clinic for ultrasound diagnosis and consultation if no joy with gp private and expensive but I’ve had enough hope it works out for you . Do let me know good luck x

[Aprilbaby24 in reply to MillieEllie]

I contacted them aswell, £980 for initial consultant, I’ve paid national ins for so many years, why should I pay so much private?😡

[MillieEllie in reply to Aprilbaby24]

Yeh. I was quoted exactly the same price. And you’re right that we shouldn’t have to but sadly that’s the only way for answers sometimes. I’ve had to pay for both MRI and CT so far. Hope your not in to much pain. I definitely am. Just made worse by slow walk with my dogs. Oh well. Let’s hope we get fixed soon. Keep me updated x