The little-known condition that leaves 1.5 million British women with debilitating pelvic pain and the need to rush to the toilet – many doctors miss it, but it CAN be treated

Corrine Jones was tucking her two young children into bed one Sunday evening when she was suddenly struck by excruciating stabbing pains in her lower abdomen.

The heavy, dull pain that had plagued her on and off for over six months had now turned into severe shooting sensations that caused her to bend over and vomit.

“I was so scared and had no idea what was going on,” says the former surfer and model, who runs a production company with her husband Ben, 37.

‘Previously I had always managed the dull pain with rest, paracetamol and a hot water bottle, but this was different – the sharp pain was completely unbearable,’ says the mother-of-two from Newquay, Cornwall.

A ‘very concerned’ Ben called 111.

The operator suspected appendicitis and urged Corrine to go to the emergency room.

“The NHS have been amazing, I can’t fault them,” said Corrine, 36, who was rushed to hospital by her mother while Ben stayed at home to look after their sons Albee, now six, and Ozzie, three.

‘I was admitted overnight and examined for an ovarian cyst and anything else that could be going on in that area.’

But blood tests and internal and external ultrasounds were clear.

“The nurse said that sometimes this happens when women come in with these symptoms and never really figure out why they’re in pain,” Corrine says.

She was sent home the next day and told to take regular pain medication and rest.

‘I was also on a waiting list for a visit to the gynecology team.’

The intense, sharp pain was now gone.

However, Corrine still suffered from the persistent dragging feeling in her pelvic area. ‘It was really disturbing because I knew something was wrong but no cause had been found yet.

‘I forced myself to continue with normal life, but I was so lethargic. The pain was especially debilitating after long days of running around on my feet chasing the kids.

“All I could do was go to bed and rest.”

In fact, Corrine had the typical symptoms of pelvic congestion syndrome (PCS), caused by varicose veins around her ovaries.

It is also known as ovarian vein reflux and occurs due to defective valves in the veins. Blood that needs to be pumped out of the pelvis and back to the heart collects in the veins of the pelvis and ovaries, stretching and dilating them.

Over time, the enlarged, prolapsed veins press on the bladder, intestines, vagina and pelvic floor, causing extreme discomfort. Some women complain of pain after intercourse, the need to go to the toilet more urgently (due to the pressure on the bladder and intestines), hip and back pain.

Common symptoms include pelvic pain that worsens over the course of the day, especially after standing for long periods of time and during menstruation.

Varicose veins at the top of the inner thigh are another clue.

It is believed that up to 1.5 million adult women in Britain suffer from hidden pelvic varicose veins. Although it affects both sexes, it is less common in men, with bulging veins in the scrotum being a possible sign.

When diagnosed, it is usually in women under the age of 40 who have had more than one pregnancy. Pressure from the uterus, a growing baby and increased blood flow can sometimes cause the valves to stop working properly.

But despite so many people being affected, the condition is not well known, experts say.

Corrine had never heard of it until she came across an Instagram post in April 2023, three months after her hospitalization: It was a lightbulb moment.

Like her mother and grandmother, Corrine first developed varicose veins in her legs in her mid-twenties. ‘I had done many long-haul flights, but my legs still swelled and felt like they were filled with concrete.

‘I went to the doctor several times because of my family history of varicose veins, but was told they weren’t serious enough to look at because they didn’t have ulcers.’

During her first pregnancy, in 2018, the bulging veins in Corrine’s legs worsened, and after the birth of her second child in 2021, the pelvic complaints really increased.

“I had period pain all the time,” says Corrine.

Treatment options for PCS include anti-inflammatory medications, birth control pills (which relieve pain by reducing bleeding), and keyhole surgery to close off veins.

However, Robert Morgan, professor of interventional radiology and clinical director of diagnostics at St George’s University Hospitals NHS Foundation Trust, London, says the preferred method is PVE (pelvic vein embolization), a minimally invasive procedure that stops blood flow in the clogged veins. and causes them to shrink.

First, an internal ultrasound is used to identify the troublesome veins: small catheters are then inserted into the vein (via a vein in the neck or groin), and when placed in situ, special platinum coils – which clump together to increase blood flow to stop – posted. released with a special foam that contains a chemical to destroy veins.

Once blocked, the defective veins are reabsorbed into the body by the immune system over many months, allowing the competent veins to work more efficiently.

“(PVE) is relatively safe, lasts 30 to 60 minutes, has few complications and patients are discharged from hospital the same day,” explains Professor Morgan, whose team of 13 interventional radiologists perform around 40-60 procedures each year at St George’s.

However, the procedure is only available on the NHS in some centres.

Corrine contacted The Whiteley Clinic, a private practice specializing in vascular procedures, because ‘I knew the NHS wouldn’t treat me as they had already told me my veins weren’t bad enough’.

An internal scan revealed that Corrine had pelvic congestion in the ovarian vein on her left side and on both sides in the internal iliac veins – this is a group of veins that return blood from the pelvic organs to the heart.

These veins are the problem “in 97 percent of PCS cases, but most doctors only treat the ovarian veins because these are easier to treat,” says Professor Mark Whiteley, a venous surgeon who founded The Whiteley Clinic.

“It was an eye-opener to realize that this was what I had been dealing with since I was 20,” says Corrine. ‘On the scan I saw that the blood was pooling in the pelvic veins and not flowing properly.’

Corrine traveled to London for the 90-minute procedure (PVE treatment starts from £4,400).

She returned to Newquay the same day.

It took a month for the internal inflammation to resolve, but Corrine began to perform her daily activities, including going to the gym, without any discomfort.

‘It was great. Unfortunately, I think many women are probably living with hidden varicose veins and are just trying to manage the discomfort because it isn’t picked up on or talked about.

‘Looking back, it’s surprising, given how common it is, that no one mentioned it or suggested it when I got my tests in hospital.’

According to Professor Whiteley, one in three women attending gynecology outpatients with chronic pelvic pain (CPP) have hidden varicose veins.

‘Unfortunately, these conditions are not recognized by most gynecologists, let alone other health professionals, and these patients are often told that they have endometriosis or that there is ‘nothing wrong with it.’

‘Many gynecologists see the dilated veins on scans but are not trained to know that these are the cause of the problems, so they ignore them.’

Professor Whiteley warns that for an effective treatment to be effective, the correct veins must be located using a transvaginal duplex ultrasound, which is performed with the patient half sitting and half lying with the back at a 45 degree angle to ensure a detect poor blood flow.

‘Although many doctors like to use MRI, CT or venography (an X-ray with a contrast dye), these have been found to be less accurate because they do not provide information about blood flow in the veins,’ he says.

‘Unfortunately, we do see patients (who have had PVE elsewhere) but do not get any improvement because the wrong veins have been identified or the IUDs have been left too high in the vein. This may be due to inexperienced physicians performing the embolization, or to the use of a groin approach rather than the neck, which does not allow the catheter to be guided all the way to the bottom of the affected vein.”

Earlier this month, the House of Commons Women and Equality Committee warned that women with conditions such as heavy periods, endometriosis and adenomyosis were being dismissed, suggesting there was a lack of medical research, treatment options and specialists.

Undoubtedly, more research is also needed on pelvic congestion syndrome.

Professor Morgan, who is currently President of the British Society of Interventional Radiology, suggests awareness of the condition is improving – he has seen a rise in the number of referrals for PCS procedures, as a result of increasing media coverage, patient knowledge and better education.

Corrine, who received her treatment for free in exchange for sharing her story, says she has been ‘inundated with messages (on social media) saying ‘I think I have this’.

“I want women to know that the pain of PCS is not something they have to endure forever.”