Ten top tips - endometriosis
Dr Ertan Saridogan, consultant in reproductive medicine, provides his tips on diagnosing and managing endometriosis
1. Remember the possibility of endometriosis – it’s more common than you might think
Endometriosis affects 10% of women of all ages in reproductive years, including teenagers. It is rarely found before menarche and tends to regress after menopause. Its prevalence is related to age, reaching a peak at ages 40-44 years. Nulliparity, short cycles and heavy menstrual bleeding are well known risk factors - these are probably related to the increased likelihood of retrograde menstruation due to increased number of days with bleeding.
2. The two most common symptoms of pelvic endometriosis are pelvic pain and infertility
The pain of endometriosis is usually in the form of dysmenorrhoea. Deep dyspareunia and non-menstrual or constant pelvic pain may also be reported. Some women may have cyclical intestinal symptoms such as painful defecation (dyschezia), diarrhoea or constipation during menstruation. The symptoms of endometriosis are not specific and there is considerable overlap with other pelvic and abdominal conditions such as primary dysmenorrhoea, pelvic inflammatory disease, adenomyosis and irritable bowel syndrome.
3. Endometriosis should be suspected in teenagers who do not respond to combined oral contraceptives (COC) and non-steroidal anti-inflammatory drugs (NSAID) for dysmenorrhoea
Dysmenorrhoea is common in teenagers, affecting up to 40-50% within the first 1-2 years after the menarche. The majority of young girls with dysmenorrhoea have no associated pelvic pathology and can often be successfully treated with the COC or NSAIDs. It is claimed that 50-70% of teenagers who do not respond to this treatment may have endometriosis.
4. Extragenital endometriosis may present with unusual cyclical symptoms
Extragenital endometriosis may be found in any localisation in the body - the common extragenital locations include the gastrointestinal and urinary tracts, lungs and pleura, scars of caesarean section, laparotomy and episiotomy. Endometriosis in these locations may cause cyclical rectal bleeding, cyclical haematuria, cyclical haemoptysis, cyclically enlarging painful and tender masses in the umbilicus, episiotomy, caesarean section and other laparotomy scars.
5. Whilst clinical examination may be normal in minimal/mild endometriosis, women with advanced endometriosis tend to have abnormalities on pelvic examination
Abnormal findings such as a retroverted uterus with reduced mobility, painful rectovaginal or uterosacral nodules, or presence of adnexal masses are common with more advanced endometriosis. Umbilical, abdominal or episiotomy scar nodules may easily be detected, particularly at the time of menstruation. Pelvic examination may be inappropriate in teenagers.
6. Pelvic ultrasound examination is the first-line investigation for the diagnosis of endometriosis
Persistent ovarian cysts with ground glass echogenicity on ultrasound examination are highly accurate for the diagnosis of pelvic endometriosis. Experienced ultrasound operators may also be able to detect adherent ovaries with reduced mobility and deep endometriotic nodules. A normal ultrasound examination does not rule out endometriosis. There are no reliable biochemical markers for endometriosis as yet - CA125 may be elevated in women with endometriosis but is very non-specific.
7. It is reasonable to treat women who have mild to moderate pain symptoms suggestive of endometriosis with hormonal contraceptives or NSAIDs empirically
Empirical treatment of pain presumed to be due to endometriosis is frequently employed. Women with significant period pains often use over-the-counter analgesics. The COCs are empirically used for the treatment of dysmenorrhoea which may be secondary to endometriosis, particularly when there is a need for contraception as well. It is good practice to explain to the woman and document possible diagnoses such as endometriosis, adenomyosis and primary dysmenorrhoea. Empirical treatment may be particularly helpful in teenagers who suffer from dysmenorrhoea.
8. Referral to a clinician or centre with an interest in the management of pelvic pain and endometriosis should be made in the presence of severe symptoms or significant examination/ultrasound findings, or if the initial empirical treatment fails
Delayed diagnosis, sometimes over 10 years from the beginning of symptoms, is a common problem which can result in prolonged suffering as well as isolation and depression. The delay may be due to significant overlap of symptoms with other conditions, requirement of an invasive procedure (laparoscopy) for diagnosis, lack of awareness of the condition and suboptimal use of non-invasive diagnostic aids such as pelvic examination and ultrasound examination. The confirmation of suspected disease is usually made by laparoscopy, which is considered the gold standard. Ideally, severe endometriosis should be treated in a centre that offers a multi-disciplinary team including gynaecologists, colorectal surgeons, urologists, pain management specialists and clinical nurse specialists.
9. Management options for confirmed endometriosis include surgery, hormonal treatment, pain management and assisted reproduction
Surgical treatment aims to eliminate endometriosis by either excision or ablation and these are usually carried out laparoscopically. More radical approaches such as hysterectomy and removal of ovaries, together with removal of endometriosis, may be appropriate for women who have completed their family and have severe symptoms. Commonly used hormonal treatments include progestins (levonorgestrel IUS and oral medroxyprogesterone acetate or norethisterone), gonadotrophin releasing hormone analogues and the COC pill. Medical treatment does not improve fertility, while surgery and assisted reproduction may be required for infertility.
10. Endometriosis is a potentially chronic condition and may require long term treatment
Recurrence rates are 75-80% after medical treatment and 30-40% after surgery. For this reason, long-term hormonal maintenance treatment should be recommended to women who are not trying to get pregnant. Due to the potential impact of disease on a woman’s quality of life in a number of areas - such as fertility, work, and relationships - some women benefit from attending support groups, counselling or specialist nurse support to help them to cope with the distress that prolonged symptoms can cause.
Dr Ertan Saridogan is a consultant in reproductive medicine and minimal access surgery at University College London Hospitals. He is chair of the medical advisory panel of GPs, specialist nurses and consultant gynaecologists, which work in conjunction with Endometriosis UK.
Endometriosis UK is the leading national charity dedicated to providing support and information for women who have this condition. It works to increase understanding of endometriosis and provides a range of support including a helpline, information leaflets and local support groups for women with endometriosis. Visit the website for full information or call the Endometriosis UK helpline - 0808 808 2227.
Giudice LC. Clinical practice. Endometriosis. N Engl J Med. 2010, 24;362(25):2389-98.