Lap results..no endo but pcs?!

[Charleyct]

Hi guys,

I hope you are all ok!

I had my lap on Tuesday and after having a reaction to the painkillers and feeling really awful, I am now finally starting to feel more human again! Yay!

When my surgeon came to see me after the surgery she told me they found absolutely no endo and only one large adhesion no where near the site of my pain, but I should go to see my specialist again. I was gutted and almost heartbroken to have no answers still. And quite confused as to why I need to see the specialist again if there was nothing there.

However, when I got home and read my discharge notes, the surgeon had noted that "pelvic vessels appeared very congested"

So I googled it and only found pelvic congestion syndrome, a big cause of pelvic pain basically caused by varicose veins all around the pelvic organs. Ouch!

Apparently it's very rare to find in a lap due to the blood flow being restricted while sedated.

So I have a few questions for you lovely people... Does anyone else have this?

Or have any info/ good sites/ forums on the syndrome?

Has anyone else been treated for this?

And does anyone know why the surgeon didn't mention this to me but still put it in my notes?

Any info would be very much appreciated....

Thanks xx

[Jackiew4]

Hi,

I have been back this week to see my consultant regarding my lap for Endometriosis, he said I had a really small amount and old scaring. It seemed like just in passing that he mentioned that I also have Pelvic Congestion Syndrome, but he just wanted to discuss me having a coil fitted ( which I am not keen on).

I also went home and looked up pcs and realised that this is the cause of all my problems.

I have only so far, found private operation, that could cure the problem. I couldn't even find it on the nhs website, so not sure if the nhs even treat the problem. I am waiting to see my doctor, but she is away till the end of August (and I don't rate/trust the other drs at my surgery), but I will ask her about it and push for an operation.

If not I will.have to look into going private, even though I can't afford it, but I just want to feel human again .

[Charleyct in reply to Jackiew4]

I know that feeling very well!! (I've just lost a huge reply that I spent ages on agh!)

All the info I've found seems to be American, they seem to have looked into this syndrome much better than British drs have.

My doctor didn't even tell me I have PCS but just wrote that my pelvic vessels are very congested which I believe is the same thing!!

To have a name or a reason for why my life is like this would be so great. And a treatment... Would be like I've won the lottery!!

I have read on Google that it would cos £2000 to have the embolism done privately. I don't know where I would find that money as a single parent! I can't move somedays let alone go out to work, as much as I would love to!!

Could you keep me informed with what treatments they offer you? And I will obviously do the same

Wishing you all the best and thanks for replying to me it's nice to know I'm not alone!! Xxx

[Jackiew4 in reply to Charleyct]

I'm keeping my fingers crossed that when I see my Dr, she will be a bit clued up on PCS. She was the only one in my surgery that didn't just accept that maybe I was going through the Menopause early and sent me for tests. (Which proved I wasn't).

Now I just need her to stop concentrating on my Endometriosis and concentrate on what I believe my real problem is. And that is PCS.

I do think it's a sad world we now live in, in which we have to fight to get the right and proper treatment. I refuse to be fobbed off with painkillers. But as you said, I don't know if any Nhs hospitals any do the surgery needed to cure it.

I will let you know what my Dr says , but I won't see her until the beginning of September.

I wish you all the best too and I'm glad I have found a fellow sufferer. You know what they say about a problem shared! Take care. Jackie xx

[Angelfish76]

Hi! Sorry - only just seen your post. I had a laparoscopy back in December. When I woke up the surgeon told me that he had found endometriosis, bowel adhesions and evidence of PCS. When I got my discharge paperwork and the follow-up letter there was no mention of the PCS. I decided not to go ahead with the treatment advised in the letter for the endo (Zoladex) so I have been taken off the hospital list and haven't been able to discuss this with the surgeon. I have looked into PCS a bit but have struggled to find much - I agree it all seems to be USA based. I wonder if the reason that it was left off my paperwork is because treatment is not being offered in the UK on the NHS - as jackiew4 suggested?

I'm managing my pain at the moment - but might have to go back and discuss things again if things get worse. I hope you both are doing ok - I'll let you know if I discover anything that might help. xx