Home Health The little-known condition that leaves 1.5 million women in the UK with debilitating pelvic pain and the need to rush to the bathroom. It is overlooked by many doctors, but it CAN be treated.

The little-known condition that leaves 1.5 million women in the UK with debilitating pelvic pain and the need to rush to the bathroom. It is overlooked by many doctors, but it CAN be treated.

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Corrine Jones had the typical symptoms of pelvic congestion syndrome (PCS), which affects 1.5 million women, caused by varicose veins around her ovaries.

Corrine Jones was putting her two young children to bed one Sunday night when she suddenly felt excruciating shooting pains in her lower abdomen.

The intense, dull pain that had tormented her on and off for over six months had now turned into severe stabbing sensations that left her doubled over and vomiting.

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

“I had always managed the dull pain before 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 was wonderful, I can’t blame them,” says Corrine, 36, who was rushed to hospital by her mother, while Ben stayed at home to look after their children, Albee, now six, and Ozzie. , of three.

Corrine Jones had the typical symptoms of pelvic congestion syndrome (PCS), which affects 1.5 million women, caused by varicose veins around her ovaries.

“They admitted me overnight and examined me for an ovarian cyst and anything else that might be going on in that area.”

But the blood tests and internal and external ultrasounds were clear.

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

She was sent home the next day and told to take normal painkillers and rest.

“They also put me on a waiting list to see the gynecology team.”

By then, the intense, sharp pain had subsided.

However, Corrine still suffered from the dragging sensation in her pelvic region. “It was really disturbing because I knew something was wrong, but the cause had not been found.

‘I forced myself to carry on with my life normally, but I was very lethargic. The pain was particularly debilitating after long days on my feet running after the children.

“The only thing I could do was lie down and rest.”

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

Also known as ovarian vein reflux, it occurs as a result of faulty valves in the veins, so blood that should be pumped out of the pelvis and back to the heart builds up in the pelvic and ovarian veins, stretching and dilating them.

Over time, the enlarged and drooping veins are pushed into the bladder, intestines, vagina, and pelvic floor, causing extreme discomfort. Some women complain of pain after sexual intercourse, needing to go to the bathroom more urgently (due to pressure on the bladder and bowel), hip and back pain.

Common signs include pelvic pain that worsens as the day progresses, especially after prolonged periods of standing and during menstruation.

Varicose veins on the upper part of the inner thigh are another clue.

Up to 1.5 million adult women in the UK are thought to be affected by 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.

Typically, if diagnosed, it is in women under 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 affecting so many people, the condition is not well understood, experts say.

Corrine had never heard of it until she came across an Instagram post in April 2023, three months after she was admitted to the hospital – it was a lightbulb moment.

Like her mother and grandmother, Corrine first developed varicose veins in her legs when she was in her twenties. ‘I had taken many long-haul flights, but my legs were still swollen and felt like they were full of cement.

“I went to the doctor several times because of my family history of varicose veins, but they told me they weren’t serious enough to examine because they weren’t ulcerated.”

During her first pregnancy in 2018, Corrine’s bulging leg veins worsened, and after giving birth to her second child in 2021, her pelvic discomfort really increased.

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

Treatment options for PCS include anti-inflammatory medications, the pill (which relieves pain by reducing bleeding), and eye surgery to close the veins.

Common signs include pelvic pain that worsens as the day progresses, especially after prolonged periods of standing and during menstruation.

Common signs include pelvic pain that worsens as the day progresses, especially after prolonged periods of standing and during menstruation.

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

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

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

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

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 because they had already told me my veins weren’t bad enough.”

Professor Mark Whiteley warns that one in three women presenting to gynecology outpatients with chronic pelvic pain (CPP) have hidden varicose veins

Professor Mark Whiteley warns that one in three women presenting to gynecology outpatients with chronic pelvic pain (CPP) have hidden varicose veins

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

These veins are the problem “in 97 per cent of PCS cases, but most doctors only treat the ovarian veins because they are easier to treat,” says Professor Mark Whiteley, a consultant venous surgeon who set up the Whiteley Clinic. .

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

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

He returned to Newquay the same day.

It took a month for the internal swelling to go away, but Corrine began doing her daily activities, including going to the gym, without discomfort.

‘It was amazing. Unfortunately, I think many women probably live with hidden varicose veins and are simply trying to manage the discomfort because they go undetected and unspoken about.

“Looking back, it’s surprising, given how common it is, that no one mentioned it or suggested it when I was tested at the hospital.”

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

‘Unfortunately, most gynecologists, let alone other healthcare professionals, do not recognize these conditions, and these patients are often told they have endometriosis or that there is ‘nothing wrong with them.’

“Many gynecologists see enlarged veins on scans, but they are not trained to know what is causing the problems, so they ignore them.”

Professor Whiteley warns that it is only an effective treatment if the correct veins are located using a transvaginal duplex ultrasound, which is carried out with the patient half sitting and half lying with the back at a 45 degree angle to detect defective blood flow.

“Although many doctors like to use MRI, CT scan, or venography (an x-ray that uses contrast dye), they have been shown to be less accurate because they do not provide information about blood flow in the veins,” he says. .

‘Unfortunately, we see patients (who have had PVE elsewhere) but they don’t get better because the wrong veins were identified or the coils were left too high in the vein. This may be because inexperienced doctors perform the embolization or because an approach is used in the groin instead of the neck, which means the catheter does not reach the bottom of the affected vein.

Earlier this month, the House of Commons Women and Equalities Committee warned that women with conditions including heavy periods, endometriosis and adenomyosis were being missed and suggested medical research, treatment options and specialists were lacking.

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

Professor Morgan, who is currently president of the British Society of Interventional Radiology, suggests that awareness of the condition is improving: he has seen an increase in referrals for PCS procedures, as a result of increased media information, awareness of patients and greater 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.”

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