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Home » Women's healthcare » One in ten people born female at birth are affected by endometriosis

Dr Susanne Johnson FRCOG

Associate Specialist in Gynaecology, Gynaechoice, Southampton

Endometriosis is a debilitating condition which is easily missed on a scan, potentially adding years to diagnosis. Better training of clinicians is vital to improve patient care.

The exact cause of endometriosis is unknown, admits Dr Susanne Johnson FRCOG, an Associate Specialist in Gynaecology at Gynaechoice, Southampton.

What is certain is that endometriosis can affect girls and women from puberty to menopause and creates misery for millions worldwide. It is thought to impact 1 in 10 people born female. The struggle of living with this long-term, debilitating condition is detailed in Eleanor Thom’s book ‘Private Parts’ and a documentary called ‘Below the Belt’ by Shannon Cohn.

Challenges and complications of endometriosis

With endometriosis, tissue similar to the lining of the womb grows in the wrong place, such as the abdominal cavity, the ovaries, the ligaments and tissues behind the womb — and the bowel and bladder.

“This tissue can bleed during a woman’s period,” explains Dr Johnson. “Unlike menstrual blood, it can’t escape and sets off an inflammatory response, severe period pain and scarring. If left untreated, endometriosis can lead to a condition called frozen pelvis where pelvic organs become ‘glued’ together.

Sexual intercourse can be painful, interfering with relationships — it may also cause sub-fertility and infertility issues.

Why deep endometriosis is often missed on an ultrasound

There are many symptoms of endometriosis, but the most common is chronic pain. “This can be cyclical and occur just before or during a period,” says Dr Johnson. “But it can be present all the time. On the other hand, the condition can be completely asymptomatic.”

This unpredictability makes diagnosis difficult, even when a patient is given an ultrasound. Currently, the average time to diagnosis is eight years.

To complicate the picture further, there are three subtypes of endometriosis: superficial, ovarian and deep. Superficial endometriosis affects the lining of the abdomen and cannot be diagnosed with an ultrasound. Conversely, ovarian endometriosis is relatively easy to identify using ultrasound.

To complicate the picture further, there
are three subtypes of endometriosis:
superficial, ovarian and deep.

Deep endometriosis is often missed on an ultrasound — and for one main reason. “Many sonographers who perform the scan are not trained to identify deep endometriosis,” explains Dr Johnson. “They may not know what it looks like or where to look for it — which is the pelvic floor.”

A scan may therefore be misidentified as ‘normal’ when it is anything but. That’s a huge problem because while there is currently no cure for endometriosis, the condition needs to be recognised early so that patients can access treatment or management.

Professional training can reduce the diagnostic interval

“Eventually, if the pain continues, the patient might be referred to a gynaecologist,” says Dr Johnson. “Unfortunately, the same misdiagnosis may happen again, as a vaginal examination may not diagnose the condition, and as performing an advanced ultrasound is not a compulsory part of gynaecology training in the UK. “

However, with appropriate training, the right equipment and enough time, healthcare professionals CAN deliver a quick and accurate diagnosis via ultrasound. “The ultrasound needs to be carried out transvaginally, stresses Dr Johnson.

“That is, a probe is gently inserted into the vagina and transmits an image to a screen that can be read by a specialist — if they have been trained on what to look for.”

Quicker intervention for quality of life

Ultrasound can be a fantastic tool to diagnose endometriosis, says Dr Johnson. Training schemes should be introduced so that the scans are of higher quality.

“The message is that, if used properly, ultrasound could reduce the diagnostic interval for endometriosis, which — at eight years — is far too long,” she notes. “Once identified, patients can be quickly referred to a specialist endometriosis centre to improve their quality of life.”

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