Pelvic Pain Support Network
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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 :)

1 Reply

hi unlucky,

I cried for you when I read your post.

I'm so glad you have your diagnosis due to your persistence.

you must have questioned your motives when the laproscopy had its repercussions.

nothings easy in life is it.

finding an interventional radiologist in itself is some achievement.

so well done and good luck.

I, on the other hand have given up my search I,m afraid.

almost 4 years of chronic pelvic pain, getting sent back and forth fron gynno to digestive .

I,ve found a painkiller that works so just now everyone of my family is having an easier life as I,m not such a pain in the a..e

I remember the report off one of my tests said 'irregular ligament'.

to me that was a bit of a breakthrough as I quessed that could mean my uterus was on the move.

after waiting 4 months for the results of 2 tests, (barium enema and ct scan) the 15 year old specialist told me my tests were fine but could not find the reference to my ligament from an earlier test.

for anyone interested I use an spasmodic when the pain is bad.

I live in spain !!


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