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

2. 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).

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

4. 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

5. Common locations for endometriosis implants

6. Common locations for endometriosis implants

7. 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

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

9. Normal pelvis

10. Pigmented lesions and scarring

11. Vesicles

12. Non-pigmented superficial lesions

13. Adhesion formation

14. 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.

15. 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

16. 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

17. 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

18. 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

19. 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

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

21. 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.

22. 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

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

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

25. 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

26. 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

27. 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

28. 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

29. 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

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

31. Useful contacts Endometriosis UK
Freephone helpline:
BSGE (British Society of Gynaecological Endoscopy)
ISSUE (National Fertility Association)
The British Pain Society
RCN (Royal College of Nursing)

32. Questions

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

35. Clinical questions