In December 2022, Stacey Matthews was on a dream holiday in Lapland with her daughter and partner when she realised something wasn’t right.
The then 37-year-old’s period pain, which had until then been manageable, had escalated into days of unignorable agony. Instead of arriving every 28 days and lasting five or six days, her cycles were coming every three weeks and lasting eight days, then ten days. Soon, she was barely having a week without bleeding per month.
‘The pain wasn’t just in my pelvis,’ she says. ‘It was going down my legs, up my back. It felt like it was everywhere.’
By spring 2023, the bleeding had become so severe Stacey estimates she was only not bleeding for four or five days each month. She began passing large clots and, increasingly, losing consciousness from the intensity of the pain.
‘I couldn’t live normally,’ she says. ‘I loved running, but could no longer run. I could only wear black. I was flooding through tampons and pads constantly. It took over everything.’
At first, like many women who suffer with menstrual issues, she tried to rationalise it. Perhaps it was stress, or hormones, or a run of ‘bad periods’ that would resolve itself.
But a few months later, when she found herself passing out nearly every day on a family holiday in Lanzarote – collapsing in the mornings, doubling over with waves of pain and trying to hide it from her daughter – she knew something was seriously wrong.
‘It wasn’t like a normal period,’ she explains. ‘There would be nothing for hours, then I’d get this crippling pain, bend over, and it felt like a cup of blood would pour out of me. It wasn’t trickling like a normal period, but streaming blood. It felt like a wound.’
Stacey was on holiday in Lapland when her symptoms first appeared
When Stacey first went to her GP, despite telling the doctor she was worried something was ‘really wrong’, she was prescribed the contraceptive pill and told to take it back-to-back to suppress her cycle.
‘I thought I’d be sent for an urgent scan,’ she remembers. ‘I didn’t feel hopeful at all.’
As the weeks passed, nothing improved. The bleeding intensified. Stacey was fainting daily – a nightmare for anyone, let alone a self-employed woman caring for a child with additional educational needs. Eventually, she phoned her GP in tears and begged for further investigation.
Thankfully, as Stacey had private health insurance, she was sent for a private internal scan and later sat in her GP’s office while the results came through. The screen showed a diagnosis of pelvic congestion syndrome (PCS) – a term she, and her GP, had never encountered before.
‘I was panicking and asked what it meant,’ she says, ‘and the doctor had to Google it.’
The gynaecologist told me ’PCS doesn’t exist’
After the scan’s findings, Stacey was referred to a gynaecologist at a ‘well-known hospital’, and remained hopeful this would mark an end to her health nightmare. Unfortunately, that wasn’t the case.
The male gynaecologist told Matthews ‘pelvic congestion wasn’t really a thing’, and assured her ‘some women just bleed very heavily for no reason’. She was offered three options: a hormonal coil, endometrial ablation (a procedure where the uterine lining is destroyed with heat or cold to stop heavy periods), or a hysterectomy.
Stacey was told a hysterectomy was the only guaranteed way to stop the bleeding, and, desperate after months of agony, she agreed.
In July 2023, she underwent surgery to have her womb removed, aged 38. ‘I thought that was it,’ she recalls. ‘I thought I was going to be fixed.’
Stacey was told by a gynaecologist that PCS didn’t exist
PCS is a condition which causes chronic pelvic pain
In the weeks following the operation, Stacey assumed lingering discomfort was simply post-surgical recovery. But by autumn, the familiar waves of pain had returned.
The bleeding had stopped, but the deep, radiating pain down her legs and into her back remained unchanged. ‘I burst into tears and said to my husband, “The pain’s still there”,’ she says.
’If you have PCS, why have you had a hysterectomy?’
By January 2024 – five months after her hysterectomy – Stacey was back at her GP, once again begging for help. Her pain had returned, accompanied by a prominent vein in her thigh that became hot, painful and visible beneath the skin.
After another appointment during which she pleaded to be seen by a specialist, she was referred to a vascular expert through her private health insurance. She recounted her medical journey so far, and his response was immediate: ‘If you’ve got pelvic congestion, why have you had a hysterectomy?’
Unlike the previous consultant, he confirmed that pelvic congestion syndrome is very real – and that removing the uterus does not address the underlying venous problem.
What is pelvic congestion syndrome?
Pelvic congestion syndrome is caused by varicose veins developing deep within the pelvis. When the tiny valves inside these veins fail, blood flows backwards – a process known as reflux – and pools rather than travelling efficiently back to the heart.
The result of that reflux is chronic pelvic pain, pressure and heaviness, often worsening after long periods of standing. Some women experience pain after sex, bladder urgency caused by pressure on surrounding organs, hip and lower back pain, or visible varicose veins at the top of the inner thigh or vulva.
Because the blood pools when upright, symptoms frequently ease when lying down. That positional element is one reason the condition can be missed. Standard pelvic scans are typically performed with patients lying flat, when gravity is no longer forcing blood downwards into weakened veins.
Research has shown that the most accurate diagnostic method is a specialist transvaginal venous duplex ultrasound performed with the patient positioned at around 45 degrees, allowing gravity to reveal abnormal blood flow.
‘MRI, CT or venography are often used,’ explains Professor Mark Whiteley, a venous surgeon and founder of the Whiteley Clinic. ‘But they don’t give dynamic information about blood flow. If you can’t see the flow, you can misdiagnose which veins are involved.’
‘The most important thing is to make a diagnosis,’ says Prof Whiteley. ‘If you don’t identify exactly which veins are refluxing, you can end up treating the wrong veins and the patient won’t improve.’
Without that precise mapping, he adds, treatment can fail – either because the wrong veins are targeted or because devices are not positioned low enough within the affected vein to stop the reflux completely.
PCS is estimated to affect up to 1.5 million women in the UK, yet awareness remains low. It is frequently misdiagnosed as endometriosis, IBS, bladder disorders or simply ‘bad periods’.
In Stacey’s case, years of seemingly unrelated symptoms – including IBS and bladder problems – were later understood to be linked.
’It was like Japanese knotweed around my organs’
Further specialist assessment revealed the scale of Stacey’s condition. Varicose veins extended from near her kidneys, through her pelvis and down both legs. They had wrapped around her bladder, bowel and reproductive organs.
In total, more than 50 veins required treatment. ‘It was like having Japanese knotweed wrapped around me from my kidneys to my ankles,’ she says. ‘When I stood up, the blood would pool. The veins would expand. That’s what was causing the pain.’
Stacey and her daughter, after her successful treatment
She underwent pelvic vein embolisation, a minimally invasive procedure in which faulty veins are sealed off. Under local anaesthetic, a fine catheter is passed through a vein in the neck and guided under X-ray control down into the affected pelvic veins. Tiny platinum coils are then inserted to block the abnormal backward flow of blood, often alongside foam sclerotherapy to close smaller varicose veins.
‘The key is blocking the vein permanently,’ Prof Whiteley says. ‘When done properly, the treated veins should not reopen. Recurrence only happens if other veins that were normal at the time later become incompetent.’
Thankfully, Stacey’s treatment was successful in finally resolving her pain. Yet she still lives with the knowledge that the hysterectomy – a major, irreversible surgery that rendered her infertile – did not treat the underlying problem, and as such, was entirely unnecessary.
Her advice to other women? Firstly, be aware of PCS.
‘I’d never heard of it,’ she says. ‘None of my GPs had heard of it. Every time I mention it, people say, “What’s that?”’
Specialists say PCS remains under-recognised in the UK, in part because it sits between disciplines – vascular and gynaecological – and is not always routinely considered.
Secondly, be persistent. ‘Don’t be fobbed off,’ she says. ‘You know your body. If something doesn’t feel normal, keep pushing.’
Looking back, she believes that if she had read about pelvic congestion syndrome years earlier, she would have recognised her symptoms immediately.
‘I’d been diagnosed with IBS. I’d been told it was just heavy periods. None of it was joined up,’ she says.
‘I want other women to know this exists. If people understand PCS, they might start to empathise with just how serious it is.’
Appointments at the Whiteley Clinic can be booked at thewhiteleyclinic.co.uk