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Endometriosis fact sheet

What is endometriosis?

  • Endometriosis is defined as the presence of endometrial-like tissue outside the uterus, which induces a chronic, inflammatory reaction
  • While some women with endometriosis experience painful symptoms and/or infertility, others have no symptoms at all

Who may be affected?

  • 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
  • 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
    • chronic fatigue
    • depression
    • 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
  • Referrals should take place in all severe cases of pain or if women are presenting with fertility issues
  • Treatments that can be tried in primary care include:
    • analgesics—either simple or non-steroidal anti-inflammatory drugs (NSAIDs); 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 estrogen then the progesterone-only pill could be used but it is important to remember that not all women will experience amenorrhea so pain may persist; other alternatives include a course of medroxyprogesterone acetate (MPA) or norethisterone
    • intra-uterine hormones—an intra-uterine system (IUS) can 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
    • for women with treatment failures in primary care

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, MRI, and the gold standard for diagnosis—laparoscopy. Laparoscopy can be diagnostic but more often this is combined with operative surgical procedures to remove the endometriosis
  • Cases of severe endometriosis should be sent to a specialist BSGE (British Society for Gynaecology Endoscopy) accredited endometriosis centre where women can access specialist gynaecologists and a clinical nurse specialist (CNS) who work in conjunction with general surgeons and urologists. These specialist centres also liaise with pain management teams and also have links with a local fertility team
  • A full list of accredited specialist endometriosis centres in the UK can be found online at the BSGE website at www.bsge.org.uk

full guidelines available from…

Royal College of Nursing. Endometriosis fact sheet
First included: February 2017.