Endometriosis Fact Sheet

Overview

This updated Guidelines summary focuses on symptoms of endometriosis, care management in primary care, and when to refer to secondary care and endometriosis centres.

Reflecting on Your Learnings

Reflection is important for continuous learning and development, and a critical part of the revalidation process for UK healthcare professionals. Click here to access the Guidelines Reflection Record.

Who May Be Affected by Endometriosis?

• Women of any age can be affected by endometriosis, but it is rare for the condition to manifest before a girl has her first period
• Teenagers who suffer with painful periods, experience fainting or collapse when having a period, or who miss school because of their period problems should be considered as possibly suffering from the condition.

What Are the Symptoms?

• Symptoms may vary from woman to woman and some women may experience no symptoms at all (or may not recognise their symptoms as abnormal)
• Typical endometriosis symptoms include:
  • painful periods
  • deep pain during sex
  • chronic pelvic pain
  • painful bowel movements, painful urination, and blood in urine
  • cyclical or premenstrual symptoms with or without abnormal bleeding and pain. Heavy periods are not a symptom of endometriosis, although a lot of women with endometriosis also have heavy periods
  • chronic fatigue
  • depression (depression is not a direct symptom; however, may be a side effect of the long diagnosis or having a chronic condition and infertility)
  • a family history of endometriosis
  • infertility
  • painful caesarean section scar or cyclical lump
  • back, leg, and chest pain
• Endometriosis should be considered early in young women with pelvic pain as there is often a delay of between 7 and 12 years from the onset of symptoms to receiving a definitive diagnosis.

Care Management in Primary Care

• Suspected endometriosis can be managed in primary care but consider referral to gynaecology or a specialist endometriosis centre if there is any suspicion or uncertainty over the cause of pain or if women are presenting with fertility issues
• Women with suspected deep endometriosis involving the bowel, bladder, or ureter must be referred to a specialist endometriosis service
• All women should have as a minimum an abdominal examination and if appropriate a pelvic examination and should be informed that endometriosis is being considered
• Treatments that can be tried in primary care include:
  • analgesics—either simple or non-steroidal anti-inflammatory drugs; these can be used in combination and especially around the time of the period
  • oral hormonal treatments—combined oral contraceptive pills can be taken conventionally, continuously without a break, or in a tricycling regimen (three packs together); if women cannot have oestrogen then the progesterone-only pill could be used, but it is important to remember that not all women will experience amenorrhoea, so pain may persist. Other alternatives include a course of medroxyprogesterone acetate, norethisterone, or dienogest (Medicines and Healthcare products RegulatoryAgency to approve this drug for use in England is awaited, and it is now available to prescribe for endometriosis). If the initial course of hormonal treatment does not manage symptoms, the woman should be referred to a gynaecologist
  • intrauterine hormones—an intrauterine system may provide relief from pain and is also a long-term treatment.

When to Refer

• If you see a woman with the above symptoms, encourage her to see her GP or consider a referral to gynaecology. Be aware of local arrangements and seek advice from an endometriosis clinical nurse specialist:
  • if there is uncertainty over the diagnosis
  • if a women requests referral
  • if the woman has fertility problems
  • if surgical and medical management of endometriosis is required
  • if complex/severe endometriosis is suspected—for example, endometriomas or where endometriosis is affecting the bowel
  • if initial hormonal treatment for endometriosis is not effective, not tolerated, or contraindicated
• Please note, a 6-month timescale can be used to decide whether initial hormonal treatment is effective; however, a referral should be made before 6 months if it becomes clear that treatment is not effective.

Care in Secondary Care and Endometriosis Centres

• Women with endometriosis often need referral to secondary care for the diagnosis and treatment of the condition
• The investigations offered include ultrasound scan, although a negative scan or magnetic resonance imaging does not rule out endometriosis, therefore the 'gold standard' for diagnosis is laparoscopy with biopsy
• Laparoscopy can be diagnostic but more often this is combined with operative surgical procedures to remove the endometriosis. Investigations offered should include a specialist ultrasound scan to identify deep infiltrating endometriosis in the pelvis
• Cases of severe endometriosis (or suspected severe endometriosis) should be sent to a specialist British Society for GynaecologyEndoscopy (BSGE) accredited endometriosis centre where women can access specialist gynaecologists and a clinical nurse specialist who work in conjunction with general surgeons and urologists. These specialist centres also liaise with pain management teams and have links with a local fertility team
• A full list of accredited specialist endometriosis centres in the UK can be found on the BSGE website.