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Treatment of patients with Endometriosis

Guidance for local General Practitioners on services at RCHT


V1.0

April 2013

Introduction
This document is to inform local General Practitioners (GPs) of local services for women
with endometriosis.
Patients with severe endometriosis present with chronic lower abdomino-pelvic pain.
They may have any, or all, of the following:

Chronic severe pelvic pain

heavy painful periods

deep dyspareunia

pain on voiding +/- haematuria

pain when opening their bowels +/- rectal bleeding.

Symptoms tend to be cycle related initially, but become persistent as scarring and
teathering develops around the active endometriosis. Often patients are on multiple
analgesics and their lives are blighted by pain. They are usually young; 18-40 years,
and may have associated subfertility. Typically patients will have had many hospital
referrals and may have had multiple attempts at treatment, or cycle control. The chronic
nature of the pain and lack of solution often results in low mood and depression. Bowel
symptoms may be attributed to Irritable Bowel Syndrome and referral to a medical
gastroenterologist may further delay reaching the diagnosis.
Mild pelvic pain which is cyclical may be due to mild endometriosis and can be managed
by medical control of the ovarian cycle (COCP) without the need for further investigation.
Similarly painful periods may be due to adenomyosis and be adequately controlled by a
Mirena without need for further investigation. These interventions can be initiated and
managed in Primary care. However persistent and severe symptoms require
investigation and treatment in hospital.
Severe endometriosis, especially in young women who want to conceive, is particularly
challenging for general gynaecologists to treat and is best managed by gynaecologists
who specialise in endometriosis.
National guidance from the Royal College of Obstetricians and Gynaecologists (Green
top guideline GT24 RCOG 2006) has established that severe disease should be treated
by endometriosis specialist teams. It also advises that when endometriosis is identified,
all endometriotic lesions should be removed. This is independent of whether a
hysterectomy and/or oophorectomy is undertaken. Such excisional surgery is best
undertaken by laparoscopic surgery as it provides detailed views of areas hard to access
at open surgery. As a consequence of these requirements, a dedicated endometriosis
service was set up in 2009: the Cornwall Endometriosis Centre.

The Cornwall Endometriosis Centre


Complex laparoscopic surgery for severe endometriosis requires considerable expertise
to limit the risks of this surgery. In addition a quality service needs a multidisciplinary
team to provide all aspects of care needed and should audit the outcome of treatment.
The standards for such a service have now been established by The British Society for
Gynaecological Endoscopy ; BSGE (www.bsge.org.uk). Only a service which carries out
this work to the required standard will be registered as a BSGE centre. In November
2009 the Endometriosis service at RCH achieved these standards and was accredited
as a BSGE Endometriosis Centre (www.rcht.nhs.uk/endometriosis). We are very proud
to be able to offer local patients a nationally accredited service. The service is run by
two consultant gynaecologists, an endometriosis specialist nurse and a laparoscopic
training fellow; working in conjunction with a colorectal surgeon, two urologists, the pain
team and the fertility team.
Outpatient services
There is a consultant lead endometriosis clinic each week on a Thursday morning, as
well as nurse specialist clinics on each Tuesday morning and Tuesday afternoon.
Patient pathway
New referrals are seen by the endometriosis specialist nurse at the first appointment and
the following are carried out:
1. Patient symptom questionnaire
2. A pelvic and renal scan where appropriate
3. The patient is given a detailed information sheet about endometriosis surgery to take
away, read and sign.
If the specialist nurse believes the patient is unlikely to have endometriosis she will
discuss the case with one of the consultants and adjust the management accordingly.
At the next appointment the consultant will examine the patient and agree management.
If surgery is planned, informed consent is taken and the procedure booked.
Surgery is carried out in one, or two stages and the patient is followed up:
1. at 3 months by consultant clinic
2. at 6 months by nurse clinic and symptom questionnaire completed
3. at 1 year by telephone and symptom questionnaire completed
4. at 2 years by telephone and symptom questionnaire completed
All pre and post-operative symptom questionnaires are entered on the national BSGE
secure database along with detailed information on surgery.

Advice to referring GPs


If you think a patient may have endometriosis, or they already have a diagnosis of
endometriosis confirmed please refer to the Endometriosis Centre. They will be triaged
by Cathy Dean, the Endometriosis Specialist Nurse and their further management
arranged.
If at laparoscopy minor disease is identified, this can be excised at the same
laparoscopy, providing appropriate consent has been obtained. Some cases may also
benefit from Mirena insertion. However if the laparoscopy shows severe Endometriosis,
then staging of the disease will be undertaken plus drainage and stripping of any
endometriomas, if present. After explanation and further counselling these patients will
be offered definitive surgery.
The surgical treatment for major endometriosis is laparoscopic excision of all
endometriotic deposits. This will involve extensive pelvic dissection and sometimes
requires surgery on the rectum, bladder and/or ureters. Patients need 12 weeks down
regulation with Decapeptyl 11.25mg and bowel preparation prior to surgery. It is not
usually necessary to remove the uterus, tubes or ovaries; hysterectomy is only needed
where there is primary uterine pathology.
Management regimes differ for patients with recurrent disease.
We hope this information is helpful we would welcome guidance on how to improve it
and make it more relevant for GPs. If you would value a visit to your practice to hear
more about the service and have your questions answered please contact Cathy Dean
who will arrange for one, or two of us, to come out and meet you at a mutually
convenient time.
In addition another useful resource is the NHS choices website Map of Medicine
pathway for endometriosis (www.nhs.uk/Conditions/Endometriosis). The RCHT pathway
follows this model.

Governance Information
Document Title

Treatment of patients with Endometriosis.


Guidance for local General Practitioners on
services at RCHT

Date Issued:

April 2013

Date Valid From:

April 2013

Date Valid To:

March 2016

Directorate / Department responsible


(author/owner):

Dominic Byrne, Gynaecology.

Contact details:

01872 252730

Brief summary of contents

The documents give GPs guidance on RCHT


services available for patients with
endometriosis

Suggested Keywords:

Endometriosis
GPs

Target Audience

PCT

CFT

Date revised:

April 2013

Version Control Table


Date

Version Summary of Changes


No

April 2013 1.0

Initial Issue

Changes Made by
Dominic Byrne