‘I was alive but not living’: The chance discovery that saved Lilli chronic pelvic pain

“What did you do to me?” is not a phrase doctors want to hear from a patient after surgery. But for vascular surgeon Laurencia Villalba, it became a welcome pattern among her female patients with varicose veins.

“I’d answer, ‘I fixed your leg’, and they would say, ‘but the pelvic pain is gone too’,” said associate professor Villalba, an honorary fellow at the University of Wollongong’s faculty of Science, Medicine and Health.

Lilli Staff at her home about a year and a half after undergoing stenting to treat her chronic pelvic pain.Credit: Louise kennerley

Persistent pelvic pain affects between 15 and 25 per cent of Australian women. But research into the poorly understood, complex and multifactorial causes is underfunded, leaving an estimated 50 per cent of cases undiagnosed.

“So, I started looking more closely and asking more questions, and I soon realised that a lot of my patients had chronic pelvic pain that had not been diagnosed, or treated or even investigated,” Villalba said.

Pelvic congestion syndrome (PCS) is among the chronically under-researched contributors to chronic pelvic pain. It’s characterised by damage to the major veins that run through the pelvis, restricting blood flow and causing pressure to build up. Some studies suggest this may contribute to 30 to 40 per cent of chronic pelvic pain cases where no other cause (such as endometriosis) can be identified.

One promising treatment is stenting, which involves inserting a small mesh tube to open a narrowing or blocked vein. The technique is more commonly associated with repairing the arteries of cardiovascular patients.

A recent study, led by Villalba, followed 113 women (aged 17 to 88) with a blockage in an iliac vein – major veins running from each leg through the pelvis – who underwent stenting after suffering severe pelvic pain, some for up to 25 years.

Before stenting, the women’s median pain score was seven out of 10 (10 being the most severe).

After the procedure, almost every patient (all but two) reported her pain had lessened significantly six to 12 months later; most (73 per cent) reported the pain had disappeared completely, as reported by Villalba and her co-author, associate professor Theresa Larkin, in the journal Venous and Lymphatic Disorders.

“Women who once struggled to sit, work, exercise and have intercourse, [and who] experienced immense pain, have been given back their lives and their freedom,” Villalba said.

The study also found:

• The women’s pelvic pain had not returned at a median follow-up of five years.
• Of the 31 women who still experienced pelvic pain after stenting, their median pain score had dropped to below three out of 10.
• Twelve patients became pregnant and gave birth after receiving their stents (some had multiple pregnancies).
• There were no stent-related pregnancy complications, and no recurrence or pain or worsening of pain during or after their pregnancies. 

In 2020, a succession of gynaecologists told 17-year-old Lilli Staff that her debilitating pelvic pain was normal.

Two years later, and more than 80 kilometres from her home near Wollongong, a Sydney gynaecologist diagnosed her with stage 4 endometriosis (the most severe form of the condition) and polycystic ovary syndrome.

“I had lesions everywhere,” said Staff, now 22.

Surgery to remove her endometriosis lesions offered some relief, but her pain soon escalated.

“I had an excruciating pain in my pelvis, through my back and left leg. I would lose feeling in my leg and have to drag it around like a dead weight,” she said.

Lilli Staff’s iliac vein had narrowed from almost 15 millimetres to 3 millimetres, obstructing bloodflow through her pelvis. Credit: Louise Kennerley

Staff was diagnosed via ultrasound with May-Thurner syndrome: her left iliac vein had been compressed by an artery in the pelvis.

Staff was referred to a vascular surgeon in Melbourne, who said she needed a stent, but he would not perform the procedure.

“He said I was too young, and I may want to be pregnant in the future, but I was welcome to find another vascular surgeon who would do it,” Staff said.

The evidence base for stenting to treat chronic pelvic pain is still emerging. The practice relies on small studies, such as Villalba and Larkin’s, without large randomised controlled trial data. The lack of large-scale trials and research investment is a familiar scenario for pelvic pain treatment overall.

Stenting was approved only in the 1990s for patients with coronary heart disease, who are typically decades older than these women.

“We don’t have 50 years of data on stenting, and we are giving them a permanent implant that they have to look after for the rest of their lives, so we need to do this carefully and follow up with patients forever,” Villalba said.

For Staff, the first surgeon’s refusal was heartbreaking.

“I was 20 years old and couldn’t go to university. I was at home in bed every day. I was alive but not living.”

Then her mother found Villalba.

“[Villalba] said I would be on blood thinners for the rest of my life, but I couldn’t keep living like this,” Staff said.

A normal-sized vein is 14 to 16 millimetres wide. Staff’s iliac veins had narrowed to 3.5 millimetres, with extensive scar tissue. Villalba inserted a stent 15 centimetres long and 16 millimetres wide.

“I pretty much felt better immediately,” Staff said. Roughly 18 months later, she has graduated, and her quality of life has improved immeasurably.

Villalba said it was “unbelievably disturbing that a lot of these patients have had many, many years of pain and have been completely dismissed”.

Associate Professor Laurencia Villalba, vascular surgeon and honorary fellow at the University of Wollongong.Credit: Michael Gray

She recalled a patient whose husband left her because he didn’t believe that she experienced severe pain for hours after intercourse.

“It is not uncommon for me to hear women who have been told, ‘It is all in your head’, or ‘You need to learn to live with the pain’, when doctors can’t find a reason for the pain,” she said.

Ideally, chronic pelvic pain patients would be managed by a multidisciplinary team that may include pain, gynaecology, colorectal, gastroenterology and urology specialists, physiotherapists and psychologists.

This is not available for many, said Dr Jason Chow, a gynaecologist, pain specialist and clinical lead at the Royal Hospital for Women’s pain service.

“We’re all in these siloed specialities, and pain is often multifactorial,” Chow said. “We really need to take a holistic approach to a patient’s pain.”

Identifying the patients who may benefit from stenting was key, said Villalba, who first refers patients to explore potential gynaecological causes of the pain.

Not everyone with blocked pelvic veins experiences pain, and stenting is not always appropriate for those who do, Villalba said.

Patients were asked to keep a pain diary for six weeks and are encouraged to trigger their pain by performing certain activities such as walking up several flights of stairs, repetitive exercise for more than 30 minutes or having intercourse.

“[Pelvic pain linked to vein obstruction] is not random,” Villalba said. “It is influenced by gravity and exercise.”

Associate Professor Sarah Aitken, deputy chair of the Royal Australasian College of Surgeons’ vascular board, said the stenting study was an important step in highlighting a treatment that may relieve some symptoms, “but this is still a big area of unprioritised research”.

Aitken said patients assessed for vascular causes of pelvic pain had often endured a protracted and traumatic search for a diagnosis, in which myriad other potential causes had been ruled out.

“Or someone sees a vein and goes, ‘that must be the cause’, without considering other factors,” she said. “Villalba’s work has gone a long way in trying to provide a framework for understanding whether [a patient’s pain] could be venous or something else, but we are still very early in this process.”

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