PELVIC CONGESTION SYNDROME

[Mjangel]

It has been over a year since my first post on Endometriosis on this forum. Since then I've gone through a long journey.

I have beed suffering for a very long time. Misdiagnosed and ignored by the NHS system. I am in extreme persistent pain. I do very little now. Most of the time I rest.

Basically, for me under the NHS the next step is Laparoscopy. After I was diagnosed in Poland for the Pelvic Congestion Syndrome, I know from the fact that the Laparoscopy operation should not be use as a primary solution to diagnose the condition, as it is invasive , with ingeration to the body and will bring unnecessary harm to the patient only. It is also a very outdated method.

My health is in hands of a foreign doctors now, as I lost the confidence in NHS completely.

I truly believe that the NHS system is created this way to postpone the treatment of the patient for as long as possibly. This means in some cases people developing even cancer.

Why would it be this way? - you're asking.

The answer is very simple... and we all know it... it is just very hard to believe...

IT'S ALL ABOUT THE MONEY, AND NOT THE PEOPLE 😔

I didn't plan that post, neither the form this post has developed.

I want to raise awareness to everyone who is in similar situation or know anyone with same issue.

I truly believe that we can do something about the way the NHS treat us!

There's been far too many young women suffering from the lack of knowledge and sympathy that they experience on a daily basis under the NHS system.

Because of the way the NHS neglects the duties of their job, I am more often thinking of creating a foundation, charity that would protect our rights as a victim of this system, and help women enter the private sector of healthcare in the UK.

How simple the treatment for Pelvic Congestion Syndrome is?

As a patient suffering from this condition, one of the most successful treatment is a 2 hour surgery under a general aneastetics, called Embolization.

How the surgery is performed?

"After using an anesthetic to numb a small area of the thigh, doctors make a small incision there. Then, they insert a thin, flexible tube (catheter) through the incision into a vein and thread it to the varicose veins. They insert tiny coils, sponges, or gluelike liquids through the catheter into the veins to block them."

(msdmanuals.com/en-gb/home/w...

To all the women out there, speak up and make a difference!

#embolization #laparoscopy #pelvis #pelivcongestionsyndrome #endometriosis

[25clai]

I’ve had 2 pelvic vein embolisms done after a similar long journey with the nhs. It took me 2 yrs to get the op funded on the nhs. The op has meant I now do not have pcs. Before the ops, I could hardly walk and either was left reeling in agony or passed out after every car journey, it was an awful time. I was offered a total pelvic clear out on the nhs, but refused and insisted on the less invasive route . Ironically, the clear out would have cost the nhs a lot more than the 2 outpatient ops I had!! Get the treatment, it worked for me, but I did need 2 to get fully right.

[Mjangel in reply to 25clai]

Hi lovely! Thank you for sharing your story with me and everyone who is following this post. I'm so happy for you that everything ended up well. I am sure there is a lot more women struggling everyday for the same reason. It's not only affects the womam,it has got impact on the whole family of the person who suffers! My relatives are still trying to understand what has been happening with me,because when there is no physical abnormality in your appearance there is hard to see the illness.

It is vital to share and come together ladies because together we are stronger! X

[Carolina88]

Hello.

I had been a experiencing sharp pelvic pain on my left side. This started months back. I got a laparoscopic and treated what was found, Endometriosis.

I have been told I have PCS but I haven’t been told to do anything about it.

What were are your symptoms if you don’t mind me asking? My pain gets worse when I have bowel movements too. This could be endometriosis but I want to make sure it’s not PCS and it goes untreated.

Thanks

[Mjangel in reply to Carolina88]

Hello Carolina88. For the last year and a half, when my symptoms have worsen I had all kind of to be honest.

When it comes to bowel movement, I've noticed my tissue was getting looser, and looser, and I had no ability to stretch it back again completely. For this problem I had from the Polish ginecologist a homeopathic tablets that has helped me within a weeks one of them was French make Cyclo 3 Fort(more details here moncoinsante.co.uk/cyclo-3-... the other one was Solgar Rutin 500mg( solgar.co.uk/all-products/r...

Other major symptom was a traumatising pain when I tried to bend down and could not possibly came back up, because of (at the time it felt like) "muscles" didn't want to loosen up.(it felt like a massive cramp in my pelvis)

I developed more regular pains like that and after a while every day or even few times a day.

In the next stages I developed a back pain, just above the right hip. The pain was very similar to the contractions that I've experienced when I was in labour with my children. At first the pain was temporary and would appear at the end of a hard day. After few months, it developed to a persistent pain that I would walk up with, and go to sleep with even worse pain level. If I would classified the level of the pain, I would say first months at level 5 the worst, following months level 5 in the morning and 10 in the afternoon (when you feel to be glad to lie down for just a little relief).

I've also noticed labia minora being swallowed at all times.

The pelvic pain would always worsen few day before the period. I have always had more trouble with the right side of my body, although from what I read over this whole period of time in various researches, articles and medical papers, the dominant vein is on the left side of the body and it seem to spread the cause onto other parts of the body.

I had also trouble with the rest of my body veins, for example if I stand for a long period of time (and at latest, the long period would classify being 2hrs) I would felt my blood slowing down, causing swalling of the whole body. I would then have freezing cold hand and feet, or I would feel like I'm going to black out.

At the latest stage with all the symptoms above, I would also have a pounding headaches with slight blurry vision. And my mood would plummet right down, causing even anger. Also this would have an impact on my speed in responding in conversations or actions.

Although I mentioned quite a lot I'm sure if I found all my notes the list would've been longer.

[Mjangel]

Hi everyone!

I'm going to reply to myself as it's easier for everyone to see the update for my post. 😊

First of all, apologies for not getting back promptly and thank you all for the follows, likes and general interest in this topic.

It means a lot to me and everyone who suffers.

I need to share something amazing with you all.

I'VE HAD MY EMBOLIZATION! 😊

There is only one thing that hangs in my mind, and this is why on earth it had to took me so long to reach this point!

It's been only an early days as I had this done on Friday, 5th July 2019 at 16:00hrs in the Independent Public Clinical Hospital No. 4 in Lublin, Poland.

How I feel, the words would not describe. This was the first time in my life when I cried with tears of happiness to have a surgery and to know the pain was gone.

After surgery I need to take care if my self, avoiding lifting and standing for a long period of time and the doctors promised me full recovery in 3months. This is also the time when I need to phone and give a full feedback to them and if needed the check up can be arranged.

But this also means, that I can fully commit and focus to the project that I have in my head to start the charity and help all the women who suffer in their journey to a normal life!

Maya xx

[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. 😊