Endometriosis affects around one in 10 women in the UK, yet despite its high prevalence many cases remain undiagnosed. Victoria Goldman explains…

In October 2020, the All-Party Parliamentary Group on Endometriosis released a report which revealed that women with the condition are waiting an average of eight years for a diagnosis, despite over 58 per cent having visited their GP 10 or more times with symptoms.1 Delays in the diagnosis and management of endometriosis can affect women’s quality of life and result in disease progression.

The APPG inquiry also found that 73 per cent of women weren’t given any written information when they were diagnosed, leaving them without the knowledge and advice they need to make informed choices about their healthcare. Many feel isolated, and their symptoms can have a huge impact on their mental health.

The NICE guideline on Endometriosis Treatment and Management was published in 2017.2 The APPG inquiry found that many of its recommendations were still not being implemented, and proposed that healthcare professionals should raise awareness of a ‘normal period’, the symptoms of endometriosis and when to seek help.

A survey by Endometriosis UK in March 20213 revealed that 62 per cent of women aged 16 to 54 years would put off going to a doctor with symptoms of endometriosis because they don’t think it’s serious enough to bother a doctor with, they’d be embarrassed, don’t think they’d be taken seriously, or think symptoms including painful periods are normal. This statistic rises to 80 per cent for 16 to 24-year-olds.

“Healthcare professionals may assume painful periods are normal if they are unclear on its severity and whether pain relief is required,” says Dr Shree Datta, consultant obstetrician and gynaecologist and expert for Intimina UK. “What’s more, it can be especially difficult examining young teenagers for endometriosis as the findings are not specific and the disease presents differently from person to person.

“As such, it may take longer to refer people to the correct specialist for further investigation and treatment. From a patient perspective, it can also be uncomfortable taking that first step and speaking to a doctor about issues such as pain during sex – or challenging to describe the symptoms they have.”

What is endometriosis?
Endometriosis is a common chronic condition in which tissue similar to that lining the uterus (the endometrium) grows elsewhere in the body. It can affect women from puberty until the menopause. The cause remains unknown.

Each month, the extra endometrial tissue reacts to hormonal changes in the menstrual cycle in the same way as the tissue that lines the uterus, by building up and then breaking down and bleeding. Unlike blood in the uterus that leaves the body as a period, this blood has no way to escape. It can lead to inflammation, cyclical pain and the formation of scar tissue. Scar tissues may stick together, causing adhesions.

Endometriosis usually occurs in the pelvic cavity, but in up to one in 10 cases it can also affect other parts of the body, such as the diaphragm or chest cavity. The condition varies in severity, and not all women experience symptoms. Keeping a period, pain and symptoms diary may help the diagnosis.

The main symptoms include:
·       pain in the lower tummy and back (pelvic pain), which is usually worse before or during a menstrual period
·       period pain that stops people doing their usual activities
·       pain during or after sex
·       pain on urinating or opening the bowel during a period
·       heavy periods
·       fatigue or lack of energy
·       feeling sick, constipation, diarrhoea or blood in the urine during a period
·       difficulty getting pregnant.

Endometriosis may be associated with fertility problems, possibly caused by damage to the fallopian tubes or ovaries. The often-debilitating symptoms may affect relationships and school, college, work and social lives.

Diagnosis
Anyone with possible endometriosis symptoms should speak to their GP. According to NICE guidelines, endometriosis should be suspected in women if they have one or more of:
·       chronic pelvic pain
·       period-related pain affecting their daily life
·       deep pain during or after sex
·       period-related or cyclical digestive symptoms (especially painful bowel movements)
·       period-related or cyclical urinary symptoms (especially blood in the urine or pain passing urine)
·       infertility with one or more of the above.

The only way to diagnose endometriosis is with a laparoscopy – normal scans, blood tests and internal examination can’t be used to rule out the condition. Women can ask their GP to refer them to a gynaecologist.

Specialist endometriosis services are in place for women with deep endometriosis (affecting the bowel, bladder or ureter) or endometriosis outside the pelvic cavity, so they have access to specialist knowledge, surgery and support.

Treatment options
Endometriosis treatments work for different people and may be effective at different times in a woman’s life. The choice of treatment depends on patient preferences and priorities in terms of pain management and/or fertility. It’s important that women understand the different treatments and any long-term effects of hormonal therapy or surgery.

Hormonal treatments that suppress ovulation, such as the combined oral contraceptive pill, Mirena coil or a progestogen, stop the endometriosis from growing, which then reduces the cyclical pain. Women should be made aware that these won’t permanently affect fertility.

Surgical treatment aims to remove, ‘unstick’ or destroy endometrial tissues, which may stop further endometriosis forming. Even after a hysterectomy to remove the uterus, some women find their endometriosis symptoms return, especially if their ovaries are left in place.

According to NICE guidance, analgesics may help with endometriosis-related pain. A GP’s first-line approach is usually a short trial (of around three months) of paracetamol or non-steroidal anti-inflammatory drug (NSAID) alone or in combination. If this doesn’t work, then other analgesics (or referral to a pain management service) may be prescribed. Non-medicinal pain relief includes heat (such as a hot water bottle), gentle exercise (including physiotherapy) and TENS machines. Antispasmodics may help with bowel symptoms.

Signposting
According to NICE guidance and the APPG inquiry, women should be given details of local support groups, online forums and national charities, and how to access them. Endometriosis UK (www.endometriosis-uk.org, 0808 808 2227) can offer support and advice.
 

References

1. Endometriosis in the UK: time for change. APPG on Endometriosis Enquiry Report 2020. Via Endometriosis UK. https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf
2. Endometriosis: diagnosis and management. NIGE guideline NG73. National Institute for Health and Care Excellence (NICE), published September 2017. https://www.nice.org.uk/guidance/ng73
3. It’s time to end the stigma: 62% of women would put off going to the doctor with symptoms of endometriosis. Endometriosis UK, published March 2021/. https://www.endometriosis-uk.org/news/it’s-time-end-stigma-62-women-would-put-going-doctor-symptoms-endometriosis-37694