Exclusive:
Corrine Jones, 37, was diagnosed with the little-known chronic condition called pelvic congestion syndrome (PCS) after experiencing crippling cramps in her abdomen
Even when pelvic pain is so severe it becomes debilitating, it’s not always clear what’s causing it. Sometimes the culprit is period cramps – or the pain might be the result of endometriosis, a condition where tissue similar to the lining of the uterus grows outside of the uterus.
For some, the discomfort could be down to a lesser-known condition called pelvic congestion syndrome (PCS), which affects around 1.5 million women in the UK, though many don’t know they have it or even what it is.
Corrine Jones, who has the condition, tells us: “Before I got diagnosed with PCS,I had a heaviness and discomfort around the abdominal area. At times it would be debilitating.
“After a long day being on myfeet, I’d be wiped out. At the start I thought it was something to do with my ovulation, but the more I thought about it, the more I realised it was happening randomly.“I went to the doctor about the varicose veins in my legs because they were causing me discomfort.
“I never went to the doctor about the pains in my pelvis, but I ended up in hospital because I was in so much pain. They suspected it was my appendix, a cyst or endometriosis but they didn’t find any issues.“
She adds: “I felt really frustrated. I was in so much pain that all I could do was lie in bed, and I was missing out on playing with my children because I was so uncomfortable. After a couple of years of discomfort, I saw something on Instagram about pelvic congestion and it was a lightbulb moment.
“I had my first appointment about it in August 2023, and they quickly discovered I had level two pelvic congestion syndrome. In October 2023, I had pelvic vein embolisation, and I began to feel better very quickly after the procedure.
“It’s changed my life. I’m no longer in debilitating pain – I don’t have any discomfort at all. I genuinely have forgotten what life was like before the treatment because I have more energy. I’m able to have a really busy day with the children and work and not be in pain. I feel great.”
“The simplest summary is, it’s pelvic varicose veins,” says Professor Mark Whiteley from The Whiteley Clinic (thewhiteleyclinic.co.uk). “The difficulty is that most doctors who learn about varicose veins, for some reason, only think about veins between the ankle or the toes and the groin, and they forget you’ve also got all these veins that go on from the groin to the heart.”
Given how many women – and sometimes men – are affected, it’s surprising the condition isn’t widely known within the gynaecological world. Because of this, many people experiencing PCS undergo a string of medical tests without ever finding out what is causing their pain and instead go on living their lives while putting up with their symptoms.
“We’re trying to get gynaecologists to engage,” Professor Whiteley says. “At the moment, the people who come to see us are those patients who have gone to a gynaecologist and have either been told they’ve got endometriosis but have realised it’s the wrong diagnosis, or they’ve been told there’s nothing wrong with them and they’ve kept looking for answers themselves. By the time they come to see us, they’ve had all the investigations.”
Here we take a closer look at this little-known condition…
Where it might hurt
Symptoms of pelvic congestion can present themselves both inside and outside the pelvis. Professor Whiteley reveals that internal symptoms can include an irritable bowel or irritable bladder.
“You might have an aching in the pelvis when you’re standing or sitting that tends to get better when you’re lying down,” he says. “Then you’ve got deep dyspareunia, which is deep pain during sexual intercourse or after sexual intercourse.”
He adds, “Outside the pelvis, you can get lower back pain and hip pain.”
Visible signs
Some people may see physical signs, although many don’t. “The signs are when veins bulge out of the pelvis – it’s veins around the vulva or the vagina,” Professor Whiteley explains. “One in six women who have leg varicose veins and one in 30 men who have leg varicose veins are actually getting the varicose veins from the pelvis.”
He adds, “You can also get a different sort of pelvic congestion where you get varicose veins across the top of the pubic bone or at the front of the abdomen. That’s a more worrying condition. It’s related but much rarer.”
Investigating the issue
A transvaginal duplex ultrasound scan can help investigate the issue, but Professor Whiteley claims many women don’t immediately undergo the relevant tests. “Diagnosing the condition is quite simple really,” he insists. “At the moment one in three women with any pelvic pain have pelvic congestion. It’s very common, but gynaecologists aren’t trained in it, so they might tell people they have endometriosis or that their symptoms are in their head and there’s nothing wrong with them. You can request one of these scans from your GP if you feel concerned and one isn’t offered.”
Family connections
As with varicose veins, there is a genetic component to pelvic congestion syndrome.
“It runs in families,” Professor Whiteley says. “If you’ve got varicose veins in your family, you’re more likely to get pelvic congestion syndrome. If you don’t, you’re less likely to suffer from PCS, but there’s still a chance. It can’t be purely genetic, though, so there is something else going on that we don’t understand – yet.”
Treatment
“The best treatment for varicose veins of the legs is thermal ablation, which is closing the veins with heat,” Professor Whiteley explains. “But you can’t use that inside the body because the heat would destroy anything close by such as your ureter or your bowel.”
In the pelvis, you use a cold technology, he says. “At the moment,t we use pelvic vein embolisation, which is where platinum coils are embedded into the vein wall. These coils go into the vein and completely block it off and the vein goes away.”
