PELVIC CONGESTION SYNDROME - My story - Pelvic Pain Suppo...

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PELVIC CONGESTION SYNDROME - My story

Mjangel profile image
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Mjangel
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cupcakekitty07 profile image
cupcakekitty07

Was embolizing painful at all, and have you had any issues after? I was diagnosed PCS last year, and my doc was surprised because she said its more common with older women and/or women who've been pregnant, usually more than once, and I've got nothing there. But she also said mine isn't the worst she's seen that she wouldn't consider embolizing, not at least in the near future... but told me to be more conscious of how long/often I'm on my feet, elevate them etc to try to help?

Which made me kinda wonder about how safe it is, or perhaps I'm just too young like they tend to say in healthcare? Like I totally get shrinking up smaller more surface veins etc, but with the large ones to my ovaries that are the bad ones, I do kinda wonder how blocking them wouldn't have some kind of adverse effect eventually? It's kind of weird to read about, but I can't help but wonder. Have you had any issues since having it done?

Sky34 profile image
Sky34 in reply to cupcakekitty07

Hi cupcakekitty07, I think you're spot on in your thinking about "blocking" the veins potentially having an adverse effect, long term. I'm currently trying to seek alternative methods of managing my vein health, that doesn't seem too drastic or counter-intuitive.

cupcakekitty07 profile image
cupcakekitty07 in reply to Sky34

Yeah! I'm glad I'm not the only one who had wondered....I mean, I feel like superficial veins wouldn't be a big deal, but larger important ones......yeah. I'm also going with alternative management, esp as I was told mine isn't awful awful yet, but I'm just glad to know about it now!

Mjangel profile image
Mjangel in reply to cupcakekitty07

Hi cupcakekitty07.

In comparison to the daily pain that I was going through everyday, the surgery wasn't painful. Before I even thought of the embolization I'd gone through a course of medications that at first helped me a lot but in longer term failed. As I already have children and don't want anymore my decision was easier too.

What I would like to say is that I was told that my pelvic veins got worse after my last child was born. It's been 8years now.

I think pcs is a long term condition that I personally had been stuck with for 8years .

Only last two years were a nightmare for me. And before that I had changed my diet and my lifestyle completely, and more intuitionally rather than purposely. That worked for me for a while.

At the moment I am three weeks from the surgery and I'm getting much better. I've had no pain since day one of the embolization. I still cannot believe that this has been happening.

The way I used to act is still in my head. I am breaking through this "sick" routine and slowly getting used to being healthy, normal person again. 😊 I do walk a lot nowadays. 😊

Next step for me will be to walk up the stairs and up the hill.

I've made myself a little plan of what I want to achieve in the last three months. The last on my list is lifting all my work equipment in one go. (around 22lbs)

Three months is also the time of my follow up consultation given by radiologist.

Mjangel profile image
Mjangel in reply to Mjangel

Hi ladies!

Some of you asked me whether the surgery was painful.

I'll try and give you a description of how it felt and how it was performed in my case and based on myself only.

First of all, to have my surgery done I've had to have a full paperwork of my health, that included MRI scan cd with diagnose, smear test results, blood tests results , thyroids tests results, hormones, urine and other important results that was useful.

All these had gone for consultation to a ginecologist and radiologist who were specialising in performing the pelvic vein embolization surgery.

I also had a talk to those doctors, explaining what the surgery is about, what will happen, what will the recovery period be like after the surgery. They asked me why I want to undergo the procedure, how long have I had the pain for, what type of pain, how it affected my lifestyle, and did I try other treatments and what treatments before.

After all this, I was considered for the surgery.

On the Day of my surgery I was on empty tomach.

I was taken to the radiologist operation department, and was placed on the surgery bed.

Once I was ready for the operation, not even knowing when, a injection of anesthetic was done.

After just a few moments the surgeon checked with me whether I felt anything in my hip area. I was unable to feel anything.

Then, they did a cut in my groin area.(around 1-2cm)

The tube was placed inside the left pelvic vein. (At this point I felt this tube inside. And this was the exact place where the pain was. I was thrilled! 😊)

I felt no pain at this point at all.

They searched the entire vein for abnormality and after they were sure the platinum spiral was placed in the exact place of the abnormality. (While checking the vein, they asked me to breath, hold my breath, push, release the breath, all in certain patterns-this was really tiring)

After spiral was in place, they started to inject through the tube a sort of adhesive agent, that would glue the vein together and keep the spiral in place.

At this point I think I had a reaction (which I was advised of prior the surgery)

I felt sharp pain and passed out.

After few moments I was back. 😊

The right vein was approached the exact same way. Only, in this case, my right vein was worse and needed a 3spirals and a lot of "glue". I had no reaction this time. 😊

After the surgery was done I had to lie flat for 6hours.

The next day I went home.

I still felt the spirals and placement but without a pain.

I cannot stress more how happy I am to live pain free now. 😊

cupcakekitty07 profile image
cupcakekitty07 in reply to Mjangel

Ah congratulations, I'm so glad how great it's worked out for you and that you can get your life back! :) and thank you for sharing your experience in detail! It's good to actually hear from someone who's had it done--though as I'm just 26, no kids, I don't think I'd consider it yet! Speedy healing for you, and again, congratulations!!!! <3

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