The reality: Endometriosis is not ‘bad period pain’. At its worst can cause debilitating pelvic pain, affect multiple pelvic and sometimes extra-pelvic organs, leaving the sufferer unable to work, unable to have intercourse, unable to conceive, and in constant pain.
What is endometriosis?
One in 10 women have endometriosis. That’s approximately 1.5 million women in the UK.1,2
Endometriosis is the presence of cells similar to the lining of the womb found outside the uterine cavity, most commonly in the pelvis. Some 10% of sufferers will have extra-pelvic endometriosis.
Stimulated alongside the menstrual cycle, endometriosis causes inflammation and haemorrhage in and around pelvic organs, often leading to extreme pain, bladder, and bowel symptoms. It can infiltrate organs that become buried and displaced with adhesions, adding complications. For example, the bladder might not relax and expand, ureters can become obstructed, causing a kidney to fail, peristalsis of the bowel is affected, intercourse can be impossible. Some 50% of women on fertility treatment have endometriosis.4 In rare cases, thoracic and diaphragmatic endometriosis can cause cyclical difficulty breathing, haemoptysis and pneumothorax requiring surgery.
The disease is categorised as stages 1-4.5 Symptoms do not always correlate with the extent of the disease. Some women experience no symptoms at all.6
It’s difficult to diagnose
A diagnosis of endometriosis takes on average eight years from onset of symptoms.1 The all-party parliamentary group (APPG) on endometriosis 2020 report on 10,000 sufferers of endometriosis found that, before diagnosis:
- 58% visited their GP more than 10 times.
- 21% visited hospital 10 times or more.
- 53% went to A&E, and 27% attended three or more times.
- 95% said endometriosis adversely affected their wellbeing.7
The disease is not always visible on imaging,6 so diagnosis is frequently missed in normal investigations. A 50% hereditary link8 can lead to normalisation of symptoms within families. Teenagers can wrongly be assumed ‘too young’ to have endometriosis. Sufferers can be diagnosed with depression and their physical symptoms attributed to that diagnosis alone, and so the endometriosis is missed.7 GPs might start hormonal suppression to manage dysmenorrhoea, the recommended first line of treatment,6 but this is often prescribed without explanation, leading patients to feel their symptoms are being trivialised.7 It is also important to remember that not everyone with endometriosis will identify as female.
Endometriosis can be surgically excised but is a recurrent progressive disease, so will probably return. While surgery will divide adhesions, the surgery itself can cause adhesions, so each procedure can become more difficult. In severe disease involving the bowel or bladder, a temporary colostomy or ileostomy can be necessary.9
Management should aim to prevent recurrence, through hormonal suppression of menses. Any hormonal treatment that induces amenorrhoea and is tolerated is ideal. A lucky few will have minimal symptoms requiring no treatment. Others will have complex pain with bowel and bladder problems, pain pathway disruption, psychosexual issues, dyspareunia, pelvic floor and musculoskeletal issues. The impact can cause depression, isolation, difficulty working or studying, putting pressure on all types of relationships.7
Once cycles are suppressed, consider additional input.10 Physiotherapy can help reduce tension developed as the sufferer tries to protect against expected pain. A nutritionist can help identify foods that trigger bowel symptoms and advise on how to reduce erratic bowel issues that can result in pain.
Psychosexual counselling can help to process the impact of long-standing dyspareunia and pelvic pain. It is important to suggest this sensitively, so the woman does not feel her experience is being dismissed as ‘all in her head’. Pelvic pain clinics will examine every aspect of the woman’s pain, and provide analgesic regimens, nerve blocks, TENS machines and psychological tools.
Women who are trying to conceive and have endometriosis should be referred for fertility investigations early, to reduce the number of unnecessary periods.
Sufferers should be directed to the charity Endometriosis UK1,which offers a wealth of support, including helplines.
Above all, believe your patient. If someone reports cyclical pain that is impacting on their life, consider endometriosis. Each sufferer’s experience is different; with endometriosis there is no standard.