Pelvic congestion syndrome: symptoms, diagnosis and treatment

BSIR describes pain that is usually, but not always, on one side, that is made worse by walking and standing, and that is often relieved by lying down. It lists other symptoms as an ache during or after sex, pain during menstruation, frequent urination or urinary incontinence, and discomfort in the rectum.

The Princess Alexandra Hospital lists chronic pain around the pelvis and lower tummy, a feeling of heaviness in the pelvis, and painful sexual intercourse. Pain that varies with posture, as BSIR describes, is one of the features that can help separate it from other causes of pelvic pain.

The Pelvic Pain Support Network says the symptoms are often non-specific, so many women live with the condition for years before diagnosis. It lists pelvic pain for more than 6 months, with or without visible varicose veins in the thigh, abdomen, vulva or leg swelling; pain provoked by gravity, which worsens across the day or after prolonged standing and is relieved by lying down; and a prolonged ache after sex. It advises consulting your GP or gynaecologist if you have these symptoms and other possible causes of pelvic pain have been ruled out.

None of these symptoms is specific. Pelvic pain has many causes, including gynaecological, bladder, bowel and muscular problems, so pain alone does not mean PCS.

BSIR sets out the options: pelvic vein embolisation, medication for pain, or an operation to tie off the veins or to remove the uterus and ovaries, which it describes as a much bigger procedure than embolisation.

Pelvic congestion syndrome (PCS) is a cause of chronic pelvic pain in women. BSIR explains that blood backs up in the veins around the ovaries and the pelvis, in the lower part of the abdomen. These veins become enlarged or congested, a state called varicosities, similar to varicose veins in the legs.

The Princess Alexandra Hospital NHS Trust describes the same process: blood collects in the veins of the pelvis, which can cause pain, discomfort and other symptoms. The condition is sometimes grouped under the broader label pelvic venous disorder, and it is one of several possible explanations for long-term pelvic pain, which is why a careful assessment matters.

The Pelvic Pain Support Network says the condition can also be called pelvic venous disorder (PeVD), pelvic insufficiency or pelvic reflux, and that it consists of two types: venous reflux, where the valves in the pelvic veins are damaged, and obstructive disease, where the veins are narrowed. Both cause enlarged, varicose-type veins around the uterus and ovaries, leading to pelvic pain, and may also cause visible varicose veins around the vulva, vagina, inner thigh, sometimes the buttock and down the leg.

The Pelvic Pain Support Network says transvaginal duplex scanning and abdominal ultrasound may be useful to detect the abnormal veins and their blood flow. Once you have been referred to the vascular department, they might discuss whether further investigation with magnetic resonance imaging (MRI) or venography is necessary.

The Princess Alexandra Hospital leaflet says that a decision for embolisation follows recent tests or scans showing that symptoms are being caused by pelvic vein congestion, and a discussion with an interventional radiologist. Because pelvic pain has many possible causes, it is reasonable to ask what else has been considered and excluded before pain is attributed to the veins.

BSIR explains that an interventional radiologist carries out the procedure in a suite that looks like an operating theatre with extra X-ray machines. It usually takes up to 1 to 2 hours, normally with local anaesthetic and sometimes sedation. A plastic tube is inserted into the groin or neck under ultrasound guidance, contrast dye is injected to identify the target veins, and foam, liquid or coils are placed into the vein, where they stay permanently.

You normally fast on the day, may need to stop some medicines such as blood thinners for a couple of days beforehand, and have a small plaster on the puncture site that is kept dry for 2 to 3 days. Afterwards you are monitored for several hours. BSIR advises that you do not drive home or travel on public transport, that someone stays with you for 24 hours, and that exercise involving straining, such as weight lifting or squats, is avoided for about six weeks to prevent coils moving.

The Princess Alexandra Hospital notes that the examination is recommended within 10 days of the first day of the menstrual period because X-rays can be harmful to an unborn baby, and that you should contact the X-ray department if you may be pregnant.

The Princess Alexandra Hospital says multiple studies have shown that most women (80%) experience a reduction in symptoms after pelvic vein embolisation. Other trusts and studies report different figures, so ask your own team what improvement to expect in your case.

BSIR describes it as a relatively safe procedure where most complications are minor: bruising or infection at the neck or groin site, and discomfort afterwards that simple painkillers can manage. The contrast dye can reduce kidney function and rarely causes an allergic reaction. A rare, serious risk is non-target embolisation, where a coil moves and travels to the heart or lungs, and there is a risk of bleeding or making a hole in the vessel. The leaflet advises attending the emergency department if you develop any breathing problems after the procedure.

Pain can return after treatment. BSIR puts recurrence at 10 to 40 percent of cases and notes that some people need a repeat procedure, while the Princess Alexandra Hospital says the problem may reoccur and your gynaecologist may need to explore other options. Pain that persists after the veins have been treated usually means another cause is contributing, and a further review is reasonable.

The NHS says to see a GP if you have pelvic pain that comes and goes or does not go away, bloating that comes and goes or does not go away, weight loss you cannot explain, feeling full quickly or having no appetite, or constipation or diarrhoea that does not go away.

The NHS says to get help from NHS 111 if you have pelvic pain and difficulty peeing or pooing, blood in your pee or poo, unusual vaginal discharge, fluid or bleeding, pain when peeing, a very high temperature, vomiting and diarrhoea, or you are or may be pregnant. It says to call 999 or go to A&E if the pain is severe, getting worse or hurts when you move or touch the area, you feel faint, dizzy or lightheaded, have pain in the tip of your shoulder, difficulty breathing or heavy vaginal bleeding, or you suddenly feel confused.

On the NHS you start with a GP, who may refer you to gynaecology and, if imaging suggests pelvic vein congestion, on to a vascular department or interventional radiology. The Pelvic Pain Support Network says that once you have been referred to the vascular department they may discuss MRI or venography. The procedure is carried out by interventional radiologists, so referral may be to a hospital that has that service.

Some people choose to see a gynaecologist or interventional radiologist privately for imaging or a second opinion. Whichever route you take, ask which specialist will be responsible for follow-up, how recurrence is handled and what other causes of pain have been excluded first.