BSGE



Endometriosis

Information pack

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Index Page

Introduction 3

What is endometriosis

Symptoms

Facts & Figures

Primary care treatments/management 5

When to see a specialist 6

Secondary Care management 6

Surgery 8

Bladder & Bowel disease

Risks of surgery

Examples of Consent forms 13

Drainage/Stripping of endometriomas

Excision of minor disease

Excision of severe disease

Other resources 19

Introduction to Endometriosis

What is Endometriosis?

Endometriosis (pronounced en-doh-mee-tree-oh-sis) is defined as the presence of endometrial-like tissue (cells similar to those that line the womb) found outside of the uterus, which includes a chronic, inflammatory reaction.

What are the symptoms?

Symptoms vary from person to person and can be independent to the severity of the disease.

Typical symptoms include:

Painful periods – (Dysmenorrhoea)

Deep pain during sex – (Dyspaerenia)

Chronic pelvic pain

Painful bowel movements – (Dyschezia)

Pain on passing urine –(Dysuria)

Cyclical or premenstrual symptoms with or without abnormal bleeding and pain

Chronic fatigue

Infertility

Pain in caesarean/surgical scars or a cyclical lump

Black, leg or chest pain

Family history

If you have one or more of the above symptoms a diagnosis of endometriosis should be considered.

The latest facts and figures about endometriosis.

 

• 1 in 10 women of reproductive age in the UK suffer from endometriosis.1

• 10% of women worldwide have endometriosis - that’s 176 million worldwide.1

• The prevalence of endometriosis in women with infertility be as high as to 30–50%.2

• Endometriosis is the second most common gynaecological condition in the UK.3

• Endometriosis affects 1.5 million women, a similar number of women affected by diabetes.4

• On average it takes 7.5 years from onset of symptoms to get a diagnosis.5

• Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.6

The cause of endometriosis is unknown and there is no definite cure.

Primary care management

(Treatment you or your GP can start)

If Endometriosis is suspected what treatments and investigations can be started before I see a specialist?

Simple analgesics

Paracetamol & NSAIDs – Non-steroidal anti-inflammatories (ie ibuprofen) can be used in combination especially around the time of the period

Hormonal Treatments

Combined oral contraceptive pill (COCP) recommended to be taken continuously for three months, without a break between packs (tricycling).

Progesterone only pill (POP)

Depoprovera (The Depo)

Implanon

Mirena Intra uterine symptom (IUS)

The aim of hormonal treatment would be to stop or significantly reduce the level of bleeding and pain. However, not all women will experience amenorrhoea (no bleeding) so pain may persist.

Investigations

An ultrasound scan should be arranged before you have further referral. This will look at the womb and ovaries to look for anything that might be contributing to your symptoms.

When should you see a specialist?

If your symptoms are controlled with simple medical therapy, then referral to a specialist may not be required.

Referral may be indicated if:

There is uncertainty of a diagnosis

A woman wishes a referral

If there are fertility problems

If further medical or surgical management is required

If more complex/severe endometriosis is suspected eg ultrasound identifying an endometrioma (you might have heard it referred to as a ‘Chocolate cyst’ on the ovary)

Treatment with GP not successful in managing symptoms

Secondary care management

(If you are referred for care in a hospital/specialist centre)

If you are referred to secondary care – You may see a general Gynaecologist or if you are referred to an Endometriosis Centre a Gynaecologist with a special interest in Endometriosis and/or an endometriosis clinical nurse specialist (CNS).

What to expect;

When you see the clinician (Doctor or CNS),

- The consultation is likely to last approx 30 mins for a new patient

- They will take a history – ask you your symptoms, the reason you have come to the clinic

- They may wish to examine you – this will likely include an intimate examination, including a speculum / internal examination

- You may be asked to complete a quality of life questionnaire

- You may have an ultrasound scan or one ordered if not already done

- You may be offered medication to help treat your symptoms

- You may be offered an operation – a Laparoscopy

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This will also be an opportunity for you to ask questions, we would recommend writing them down before you attend so you can ensure all your concerns are addressed.

Additional medical treatment options

Gonadotrophin releasing Hormone analogue (GNRHa)

This is a medication that is usually given as an Intra muscular injection, but there are other administration routes depending on the preparation.

It is designed to ‘turn off’ your ovaries temporarily usually between 1 – 3 months. Treatment should not exceed 6 months without discussion with your lead clinician.

The aim is to suppress the endometriosis for this time period and usually used

Surgery -

If you are offered surgery

You should be offered a Laparoscopy

This is a technique in which a thin telescope is inserted into the abdomen to inspect the pelvic organs. An incision (up to 1cm) is made within or under the umbilicus and the abdomen is filled with gas. This distension allows the surgeon to inspect the pelvic organs to confirm the diagnosis of endometriosis. Another small incision is made either to the left side of the abdomen or close to the pubic hairline.

If any endometriosis is seen then up to three further incisions may be made to allow treatment to the affected areas. The surgeon would then remove the affected areas or occasionally cauterise (burn) the affected areas.

You may be required to have drugs prior to surgery or if the tissue is very vascular your surgery may entail partial treatment (treatment of endometriomas) and then drugs (GNRHa) and a second planned procedure. In other words, your surgery may be undertaken in two stages to optimise complete removal of disease.

If at the time of your surgery you need minor treatment this might involve:

- Inspection and removal of the endometriosis tissue o

• Adhesions (scar tissue) might be divided or removed

• Endometrioma or chocolate cyst (cyst filled with endometriotic fluid) will be opened drained and stripped or ablated. The cyst will then be treated. Care will be taken to preserve as much normal ovarian tissue as possible and reconstruct the ovary where required. Usually these are diagnosed on USS prior to your surgery and will be discussed pre-operatively

• You might have a catheter (tube in the bladder) should you need to stay overnight

• You may have a PCA (patient controlled analgesia) overnight where you have control over the pain relief medication which you may administer yourself by pressing a button.

• Usually you would be discharged the same or the following day.

• The duration of stay depends on the extent of endometriosis.

If at the time of your initial surgery ‘major disease’ or severe Endometriosis is identified it is likely that this will not be treated at your first operation, unless preoperatively discussed and you have been prepared for this surgery

Extensive surgery is achieved through the telescope, though a slightly longer duration of stay may be needed. Occasionally an open incision is required to complete the surgery.

This would involve:

• Cutting away the endometriosis affected tissue

• Releasing ovaries

• Releasing adhesions and removing the tissue affected by endometriosis around the back and the side of the uterus, around the bladder and ureter and the space between the rectum and the vagina.

• Dissecting the ureters (tubes that carry urine from the kidneys to the bladder) to be able to remove endometriosis tissue.

Bladder Disease

If severe endometriosis affects the bladder (anterior disease) or if found close to the bladder, then:

• A cystoscopy (inspecting the bladder with a scope) may be done

• The bladder may need to be opened to remove the endometriosis

• A catheter may be retained inside the bladder and the bladder will be rested for about 14 days

• You will be advised by the consultants how long the catheter is required.

Bowel Disease

The bowel may sometimes be involved with endometriosis. The surgical treatment involves dissecting the bowel free and assessing the degree of involvement. At times nothing more need be done, however, at other times the endometriosis may need to be cut away. This may require taking of the surface layer of the bowel or taking out a small disc of bowel and sewing up the resulting hole. Sometimes, if the involvement is extensive, a small section of the bowel needs to be removed and the bowel re-joined.

These procedures are done together with the laparoscopic bowel surgeons depending on the extent of bowel surgery required.

The surgery may require an additional 3cm cut in the pubic hair line. Occasionally if the bowel join is very low (near the anus) or the operation has been technically difficult, then a stoma bag is required (ileostomy). This effectively diverts the faeces into a bag on the abdomen or stomach thus protecting the join downstream and allowing it to heal. The stoma bag is usually left for three months and then requires a smaller operation to return the bowel into the abdomen. This usually requires a hospital stay of two to three days.

Surgical Risks

The risk of major complication from a laparoscopy only is about 1-2 per 1000. The risk from the most major type of laparoscopic surgery for endometriosis is up to 1 in 10. All the risks listed below will be discussed in detail by the members of the surgical team when you sign the consent form for the operation. As with all surgery the associated risks may include:

• Damage to bladder and uterus

• If the ureters are involved, then a stent (tube) is passed via a telescope. This is removed as a day case usually 6 weeks later.

• If the ureter is cut, then it is possible that a cut will be required in the abdomen to re-join it.

• Extensive surgery in the pelvis may result in delay in return of bladder function. Occasionally you may need to self-catheterise in the short term and very rarely in the long-term.

• Damage to the bowel. This can be in the form of a leak from the join leading to an abscess. This may require draining with a small tube; occasionally it will require a larger cut in the abdomen to correct the problem.

• Damage to nerves and blood vessels

• Infection

• Risk of delayed complications including bowel leak, infection and haematoma (collection of bleed in the abdomen) that can occur up to 2 weeks after the procedure. In addition, if a piece of bowel has had to be removed then there may be changes to the way the bowels work in the future. These changes usually resolve over a period of weeks to months.

• Risk of a fistula. This is an abnormal connection between the bowel (or other organ including bladder and ureter) and the vagina.

• Loss of a tube or ovary due to bleeding.

• Risk of adhesion formation.

• Loss of ovarian function due to endometriosis and treatment to the ovary.

If any of these complications occur, a laparotomy (open surgery through a larger cut) may need to be undertaken to correct the damage or to stop bleeding.

If you experience sudden or increasing pain at home, or are vomiting or feel unwell please seek medical advice immediately.

If you are unable to pass urine, please attend A&E urgently as you maybe in urinary retention.

Where surgery is carried out for pain it is important to appreciate that although we expect the operation to result in improvement, in some situations pain will remain and further investigations and treatment may be required. This can be the case even in patients having a hysterectomy for pain.

Examples of consent forms for surgery

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(File copy) Procedure Specific Patient Agreement

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Other resources

endometriosis-

.uk

BSGE centres .uk/centres

.uk



RCOG Recovering Well series:

Laparoscopy – .uk/en/patients/patient-leaflets/laparoscopy

eshre.eu

.uk



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