Quality statement 3: Referral for deep endometriosis

Quality statement

Women with suspected or confirmed deep endometriosis involving the bowel, bladder or ureter are referred to a specialist endometriosis service.

Rationale

Management of deep endometriosis involving the bowel, bladder or ureter needs the expertise of healthcare professionals working in a specialist endometriosis service. This will help to ensure that women with deep endometriosis receive the appropriate treatment and, if surgery is needed, it can be carried out by specialists in deep endometriosis. A specialist endometriosis service can also provide support from a clinical nurse specialist to help women manage the condition.

Quality measures

Structure

a) Evidence of local referral protocols for women with suspected or confirmed deep endometriosis involving the bowel, bladder or ureter.

Data source: Local data collection, for example referral pathways and protocols for women with suspected or confirmed deep endometriosis.

b) Evidence of services working toward accreditation as specialist endometriosis services.

Data source: Local data collection, for example service plans and accreditation applications.

Process

Proportion of women with suspected or confirmed deep endometriosis involving the bowel, bladder or ureter who are referred to a specialist endometriosis service.

Numerator – the number in the denominator who are referred to a specialist endometriosis service.

Denominator – the number of women with suspected or confirmed deep endometriosis involving the bowel, bladder or ureter.

Data source: Local data collection, for example GP, gynaecology service or paediatric and adolescent gynaecology service records.

Outcome

a) Diagnosis rates of deep endometriosis involving the bowel, bladder or ureter.

Data source: Local data collection, for example specialist endometriosis services records.

b) Rates of surgical treatment for deep endometriosis involving the bowel, bladder or ureter by specialist endometriosis services.

Data source: Local data collection, for example specialist endometriosis services records.

What the quality statement means for different audiences

Service providers (such as GP practices, sexual health clinics, emergency departments, gynaecology services, and paediatric and adolescent gynaecology services) ensure that systems are in place for women with confirmed, or symptoms suggestive of, deep endometriosis involving the bowel, bladder or ureter to be referred to a specialist endometriosis service.

Healthcare professionals (such as GPs, practice nurses, sexual health nurses, practitioners in emergency departments, gynaecologists and gynaecology nurses) are aware of the symptoms of deep endometriosis involving the bowel, bladder or ureter. They know how to refer women with confirmed, or symptoms suggestive of, deep endometriosis involving the bowel, bladder or ureter to a specialist endometriosis service.

Commissioners (such as NHS England, clinical commissioning groups and clinical networks) ensure that they commission services that have agreed referral pathways to specialist endometriosis services for women with suspected or confirmed deep endometriosis involving the bowel, bladder or ureter. They ensure that highly specialist adult urinary and gynaecological services are available in their local area for women with this condition.

Women who have, or might have, endometriosis that has spread to the bowel, bladder or ureter (deep endometriosis) are referred to a specialist endometriosis service. This service has healthcare professionals, including specialist nurses, who are trained and experienced in treating this type of endometriosis.

Source guidance

Endometriosis: diagnosis and management (2017) NICE Guideline NG73, recommendation 1.4.2

Definitions of terms used in this quality statement

Specialist endometriosis service (endometriosis centre)

Specialist endometriosis services (endometriosis centres) have access to:

  • gynaecologists with expertise in diagnosing and managing endometriosis, including advanced laparoscopic surgical skills

  • a colorectal surgeon with an interest in endometriosis

  • a urologist with an interest in endometriosis

  • an endometriosis specialist nurse

  • a multidisciplinary pain management service with expertise in pelvic pain

  • a healthcare professional with specialist expertise in gynaecological imaging of endometriosis

  • advanced diagnostic facilities (for example, radiology and histopathology)

  • fertility services.

[Adapted from NICE's guideline on endometriosis, recommendation 1.1.4]

Deep endometriosis

This is endometriosis in which the nodules infiltrate at least 5 mm below the peritoneum (the lining of the pelvis). Structures that can be penetrated include the bowel, bladder, ureter and the ligaments supporting the womb.

The symptoms of deep endometriosis can include:

  • deep pain during or after sexual intercourse

  • period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements

  • period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine.

[Adapted from NICE's full guideline on endometriosis, NICE's guideline on endometriosis, recommendation 1.3.1 and expert opinion.]

Equality and diversity considerations

The needs of transgender men should be considered when deep endometriosis is suspected. Some transgender men may find it distressing to attend appointments in a women's hospital or dedicated women's unit and may need to be seen in another clinic or setting. When transgender men have an inpatient stay for endometriosis, they may need to stay in a male, non-gynaecology ward, in line with their preference.

Some services, such as paediatric and adolescent gynaecology services and specialist endometriosis services, may not be available in all local areas. This should not prevent access to appropriate care.