FINALLY

Hi All,

I have posted on here for a while, and wanted to refresh / update everyone :)

I can not express how HAPPY and EXCITED I am, that it has been confirmed that I have Pelvic Congestion Syndrome, a rare case because I haven't had any children.! I have been scheduled in for Surgery the first week of September to embolize the blood vessels on my left and right side.

Some of you may know that it has been a journey and a half to get here. I originally went to the doctors with symptoms in October 2013, I then was referred after months of harassing my GP to a Gyno in June 2014, saw the Gyno in July 2014 - my Gyno being 99% sure it was endometriosis and possible PCOS from my symptoms etc. So it was arranged a Laparoscopy would take place to treat the possible endo. However in October 2014, I had the Laparoscopy and it turns out it wasn't and I've got swollen and congested blood vessel around the pelvic area which is causing hormones, bloatedness, tiredness and pain (similar to endo). Apparently it's rare so had to go onto hormone treatment and see how I responded. I then ended up after 2 days of having the laparoscopy with gastroenteritis.

It took its toll on me, once the infection took hold. After 4 weeks of originally having the infection, I felt exhausted. I reported I felt physically and mentally drained. All I currently do is sleep for Europe. I would go out for an hour to get fresh air and sleep for 6 ! My eating habits hadn't been the same, I didn't eat half as much as I usually did, and despite making sure I was eat something everyday, it is a struggle. I felt like a zombie trapped in someone else's body . I know what they mean, when they say "lights are on, but no one is home". :( PTSD kicked in. I felt that I was left by the hospital as they didn't know how too really treat for PCS.

However, I was getting a lot more pains and they were severe towards May time. At this point I had moved house, which meant I was under a different NHS trust. After some research and a few emails, I found a consultant who could embolize the blood vessels ! Well, after 10 months from having my laparoscopy I have finally seen a consultant who knows what they are talking about, and for the first time makes me feel human, and is excited to deal with my rare condition. - I will of course update everyone, once I have had the embolization (next month)

I just want to say too all you lovely ladies, do not be scared to push your GP, ask to see a different consultant if you want too. I had Gynaecology diagnose the problem, however it is an interventional radiologist who will be doing the embolization.

Keep pushing ladies :)

4 Replies

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  • Great news (!!), although I'm sorry to hear you've been so ill with the gastroenteritis and its aftermath. Wishing you well with your embolization!

  • That is truely brilliant that you finally have a proper diagnosis :)) what a relief it must be! I will push my gp for a second opinion as I haven't had children too so maybe that is why they would not consider me to have it too, lots of luck for yr treatment X

  • I have just looked up this condition as I had never heard of it before and i'm just wondering ... do you get any marks on your skin? Around my period, the tops of my legs and around my hips look bruised but in 'vein shapes' like thin stringy looking bruises around my thighs. The back/abdomen/leg pain when I've been standing or walking is terrible too; I have been diagnosed with minimal endometriosis but have been wondering lately what these strange bruise looking things are! x

  • Hi, i wanted to msg you privately but im not sure how to go about this im prob being very dumb menapause and no sleep for weeks doesnt help! I wanted to ask you what area you are in and the name of the consultant you saw who knows about pcs, is he nhs or private? i know gp will not be as helpful as i need. X

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