Endometriosis Presented by Sarah C Parker, Clinical Nurse Specialist, Endometriosis Centre, UCLH

What is endometriosis? Endometriosis is defined as the presence of endometrial-like tissue outside the uterus, which induces a chronic, inflammatory reaction (NHS, 2013). While some women with endometriosis experience painful symptoms and/or infertility, others have no symptoms at all. The exact prevalence of endometriosis is unknown but estimates range from between two and 10 per cent within the general female population but up to 50 per cent in infertile women (NHS, 2013).

Causes of endometriosis The cause of endometriosis is still unknown. Possible factors: Retrograde menstruation Genetic disposition Immunologic factors Metaplasia Dissemination during surgery

Where is endometriosis found? Endometriosis lesions can be found anywhere in the pelvic cavity: on the ovaries the fallopian tubes on the pelvic side-wall (peritoneum) the uterosacral ligaments the Pouch of Douglas the rectal-vaginal septum

Common locations for endometriosis implants

Common locations for endometriosis implants

It can also be found in Caesarean section scars laparoscopy/laparotomy scars on the bladder on the bowel on the intestines, colon, appendix, and rectum

What does it look like? Superficial spots Endometriomas ‘Chocolate cysts’ Deeper scarring/fibrosis Nodules Adherence of organs/tissue to each other

Normal pelvis

Pigmented lesions and scarring

Vesicles

Non-pigmented superficial lesions

Adhesion formation

Who it affects Endometriosis affects an estimated 176 million women worldwide regardless of their ethnic and social background. 2 million women in the UK are thought to suffer from endometriosis. An estimated 10% of all women during their reproductive years (from the onset of menstruation to menopause) are affected by endometriosis.

Symptoms Dysmenorrhoea - painful periods Dyspareunia - painful sexual intercourse Dyschezia - pain with bowel motions Constant pelvic pain Infertility Fatigue Monthly rectal bleeding Monthly haematuria Painful and tender nodules which become more troublesome during periods

Life effects Common, poorly understood and extremely debilitating A chronic disease affecting women's: Health and quality of life – education, work, relationships, fertility, economic sequelae Emotional well-being

How is it diagnosed ? Symptoms, history Examination Ultrasound Overlap of symptoms Examination Normal in early disease Ultrasound Cysts, nodules, adherent ovaries/bowel Laparoscopy Possible surgical treatment

Problems of diagnosis Symptoms vary widely Therefore, endometriosis can easily be mistaken for other conditions This can lead to referral to wrong speciality Research shows that diagnosis takes on average 7.5 years This may be due to reluctance of GPs to refer on

Treatment Expectant: no treatment Medical: hormonal treatments such as contraceptive pill, Mirena IUS, progestogens, or Gonadotrophin-releasing hormone analogues (GnRH analogues) Surgical: laparoscopy Combined Complementary therapies/diet

Factors to consider Symptoms Age Fertility plans Extent of disease Location of disease

Where should it be treated? Suspected endometriosis: consult GP Minor and moderate endometriosis: managed in general gynaecology departments Severe endometriosis: managed in dedicated specialist centres Severe endometriosis defined as either deeply infiltrating endometriosis or recto-vaginal endometriosis.

Requirements to become an Accredited BSGE Endometriosis Centre A dedicated consultant lead endometriosis service run within a specialist outpatient clinic Supporting surgeon Endometriosis Specialist Nurse Caseload Other supporting clinicians Data collection

The UCLH Endometriosis Centre Diagnostic Unit Nurse Specialists Pain Management Patient Gynaecologists Urologists Colorectal surgeons

Treatment of confirmed disease NSAIDs COC Progestins Gonadotrophin releasing hormone analogues (GnRHa)

NSAIDs Diclofenac, ibuprofen, naproxen, mefenamic acid, etc Start shortly before and at the beginning of periods Reduce blood loss Side effects: Nausea, vomiting, GI irritation, headache

COCs Contain oestrogen and progestins Cyclical or continuous Supress ovulation Reduce blood loss Side effects Nausea, weight gain, fluid retention, headache, breakthrough bleeding, breast tenderness

Progestins Medroxyprogesterone acetate (Provera) Cause cessation of periods 6-9 months due to side effects Side effects Nausea, weight gain, fluid retention, headache, breakthrough bleeding, breast tenderness, depression

Mirena IUS Levonorgestrel IUS Contraceptive Reduces blood loss by 80-90% Cessation of periods in 15% Side effects Weight gain, bloating, breast tenderness, bleeding in between periods

GnRHa Switch off ovaries (temporary menopause) Cessation of periods Duration 3-6 months HRT add-back for longer use Side effects Hot flushes, night sweats, vaginal dryness, reduced libido, irritability, loss of bone mineral density

What next? Diagnostic delay Effective treatment Prevention and treatment of recurrence Addressing unanswered clinical questions

Useful contacts Endometriosis UK www.endometriosis-uk.org Freephone helpline: 0808 808 2227 BSGE (British Society of Gynaecological Endoscopy) http://bsge.org.uk/index.php ISSUE (National Fertility Association) www.infertilitynetworkuk.com The British Pain Society www.britishpainsociety.org RCN (Royal College of Nursing) https://www.rcn.org.uk/

Questions

Endometriosis Presented by Sarah C Parker, Clinical Nurse Specialist, Endometriosis Centre, UCLH

Clinical questions