• Reference Number: HEY921/2024
• Departments: Gynaecology
• Last Updated: 31 August 2024

Introduction

This leaflet has been produced to give you general information about your treatment. Most of your questions should be answered by this leaflet/booklet.  It is not intended to replace the discussion between you and your doctor but may act as a starting point for discussion. If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team caring for you.

What is endometriosis?

Endometriosis is a very common condition affecting about 1 in 10 women of childbearing age. It may affect as many as 2 million women in the UK, and does not discriminate between age, race or colour. It occurs when cells similar to those normally lining the womb (endometrium) begin to grow in the wrong place, outside the womb, in other parts of the body. It mainly develops within the pelvis. It is thought there may be a genetic link and it appears you are more likely to develop endometriosis if you have a family member who has got endometriosis.

It can affect all the pelvic organs including the ovaries, fallopian tubes, supports of the womb (ligaments), bowel, bladder and the lining of the pelvis and abdomen (peritoneum). If it involves the ovary, then it often causes cysts (endometrioma or “chocolate cysts”). Rarely is it found in other areas such as the nose or lungs. It can also occur in the muscle layer of the womb, deep to the womb lining – a condition called adenomyosis.

During the normal menstrual cycle special chemicals called hormones circulate throughout the body. They cause the release of an egg from the ovary and make the endometrium thick, ready to accept the fertilised egg. If pregnancy does not occur, then the endometrium is shed as a ‘period’. With endometriosis, the endometrial like cells outside of the womb may also respond to the hormones of the menstrual cycle, similar to the cells lining the womb. They can then produce chemicals which may cause pain, other symptoms and may interfere with fertility.

What are the symptoms of Endometriosis?

The most common symptoms include:

• pelvic pain
• pain during sexual intercourse
• pain with or before periods
• infertility.

In addition, some women with endometriosis suffer from:

• heavy periods
• discomfort when urinating;
• painful bowel movement (with possible bleeding from the anus)
• bloating
• symptoms similar to irritable bowel – nausea, vomiting and constipation
• pain with ovulation
• pain down the inside of the thigh
• fatigue and depression;
• rarely – rectal bleeding, coughing up blood, shoulder pains, nose bleeds, cyclical blood in the urine (haematuria).

Pain with intercourse, periods and infertility are the most common reasons why doctors refer women to gynaecologists. Other symptoms are often ignored or result in referral to other healthcare professionals, resulting in delayed diagnosis.

There are 3 different types of endometriosis:

• Mild – moderate – these patients are managed in the hospital by the gynaecology team
• Severe – these patients are managed through the hospitals Endometriosis centre.

Treatment options

Endometriosis can be treated with medicine(s) or surgery. Please see additional patient information leaflet for more information on medical treatments. (HEY1480-2024 Endometriosis)

This leaflet is for patients undergoing surgical treatment for severe disease under the Endometriosis centre.

Can there be any complications or risks?

There are risks associated with any surgery and general anaesthetic. For more information about anaesthesia and the side effects and complications, please ask your anaesthetist.  The risks listed below will be discussed in detail by the members of the surgical team when you are asked to sign the consent form for your operation.

Serious Risks

The overall risk of serious complications from laparoscopy is approximately 2 women in every 1000 (uncommon)

• Damage to bowel (6 in 1000), bladder (4 in 1000), ureters (5 in 1000) , major blood vessels (2 in 1000)
• Leak from urinary tract (2 in 1000)
• Temporary or permanent ureteric stents
• Ileostomy (3 in 1000)
• Colostomy (2 in 1000)
• Bowel Fistula (3 in 1000)
• Bowel Leak (4 in 1000)
• Damage to nerves
• Conversion to open surgery (9 in 1000)
• Sexual dysfunction and altered vaginal sensation
• Chronic constipation or diarrhoea
• Development of VTE (DVT or PE)
• Recurrence of symptoms 5 to 20%
• Failure to achieve safe removal of all areas of disease – requiring further procedures in the future
• Residual ovarian tissue after oophorectomy
• Bleeding > 1L (greater than 1 litre) (9 in 1000)
• Pelvic Haematoma (8 in 1000)
• Non resolution of symptoms or worsening of symptoms

Frequent Risks

• Bruising
• Shoulder-tip pain
• Wound gaping
• Wound infection

Damage to the bladder and ureters:

If your bladder is injured during the operation, your surgery team will repair it through keyhole or open surgery. A catheter to drain urine will be left inside your bladder and the bladder will be rested for about 10 to 14 days.

If your ureters are involved, the surgeon will insert a stent (tube) into the ureters via a telescope (if the ureter is cut, it is possible that the surgeon may need to make a larger skin cut through which they can re-join it). The stent is removed six weeks later as a day procedure (you will not need to stay in hospital overnight).

Extensive surgery in your pelvis may mean that your bladder does not work properly for a longer period of time. Occasionally, in the short-term, you may need to self-catheterise (insert a small tube into the bladder to help it empty) until your bladder works normally again. It is very rare that this is necessary in the long-term.

Damage to the bowel:

As the bowel is often firmly stuck to the back of the womb, it can get damaged when it is detached. This can lead to a hole in your bowel, which can be stitched using keyhole surgery. However, in some cases the surgeon needs to make a larger cut in the skin, through which they can repair the injury. If the injury is large and particularly if it affects the lower end of your bowel (close to the anus), you will need a stoma (as described on page 3).

When bowel ends are joined together with staples, sometimes there can be a leak from the join, which leads to an abscess. This may need to be drained with a small tube. Occasionally, the surgeon may need to make a larger cut in the skin, through which they can correct the problem.

In addition, if a piece of your bowel has had to be removed, there may be changes to the way your bowel works in the future. It usually takes a period of weeks to months for your bowel to work normally again.

Other risks during surgery include:

• bleeding from a damaged blood vessel;
• damage to your nerves;
• infection;
• blood clots in your legs (deep vein thrombosis also known as DVT);
• loss of a fallopian tube and/or ovary due to bleeding.

Delayed risks arising a few days or weeks after surgery include:

• Haematoma (collection of blood in the abdomen) that can occur up to two weeks after the procedure
• A fistula (abnormal connection between the bowel or other organ and the vagina) that can develop in one to two out of every 100 patients
• Internal scar tissue.

Rarely, if there are any complications, you may require a second operation, either on the day of surgery or a few days later.

How can I prepare for surgery?

You will need to attend a pre-assessment appointment at the Pre-assessment Centre at Castle Hill Hospital.  Before you come in for your operation, there are some things you can do to reduce the risk of complications. We recommend that you:

• cut down or give up smoking;
• maintain a healthy diet;
• maintain some form of exercise if you can;
• try to lose weight if you know that you are overweight.

You will be sent information about how to prepare for your hospital stay with your admission letter.  You will also see the endometriosis nurse specialist who will ask you about your symptoms and how they affect your life.  They will also answer any questions or discuss any concerns you may have before the surgery.

What will happen?

Prior to your procedure

You will be asked to attend a pre-assessment clinic about 1 to 2 weeks before you are due to have your operation.  At this clinic you will be seen by a nurse who will take some general information from you such as next of kin, medical history etc.  You will have your height and weight recorded. Blood pressure, pulse and oxygen saturation checked, and have urine test, MRSA swabs and blood tests taken.

Please bring a list of all your medication to the pre-assessment clinic

Depending on your age and your medical history you may also need an electrocardiogram (ECG) – this is a tracing of your heart patterns. Your admission date will be confirmed at pre-assessment. 

Admission to hospital

You will need to bring your nightwear, dressing gown, slippers, toiletries, tissues and a packet of panty liners into hospital with you, plus any medications that you are currently taking. You may also choose to bring in some recreational activity e.g. books, puzzles, e-reader etc.

It is important that you bring in all your medicines you are on when coming into hospital.

What happens on the day of surgery?

You will be admitted to the Surgical Admissions Lounge (SAL) the day of your operation at 07:00 hours.  You will see your surgeon and sign your consent form. You will see the anaesthetist and discuss the anaesthetic and pain relief for after the surgery, and you will see a nurse to complete all the paperwork.  Any further questions you have can also be discussed at this time.

You will have been asked not to suck, eat or drink anything prior to your operation (including chewing gum or sucking sweets). Your admission letter will inform you of the time which you need to stop eating and drinking. It is important to read this and follow instructions.

All make up, nail varnish, false nails and jewellery (except wedding ring), dentures and contact lenses must be removed. You will be provided with some support stockings to help reduce the risk of blood clots during the operation. The nursing staff will advise and assist you if required.

What happens afterwards?

After your operation you will wake up in the recovery room before returning to the ward. You may still be very sleepy and be given oxygen through a clear face mask to help you breathe comfortably immediately after your operation.

During your operation a catheter (tube to drain urine away) may have be inserted into your bladder. The catheter may need to stay in post-operatively. Once it has been removed, we need to make sure that you have emptied your bladder completely. We do this by measuring how much urine you are passing or by scanning your bladder to see if it is completely empty.

How will I feel after my operation?

Please tell us if you are in pain or feel sick. We have tablets/injections we can give you so that you remain comfortable. You may also have trouble opening your bowels or have some discomfort due to wind for the first few days after the operation. This is temporary and you can take laxatives, hot peppermint water and pain relief medication if needed. Mobilising will also ease the wind.

You may expect some slight vaginal bleeding in the first couple days following surgery.  The bleeding normally turns to a red/brownish discharge before disappearing completely. If the bleeding becomes heavier than a period or smells very offensive, let your doctor know as it may indicate infection. We advise you to use panty liners whilst the bleeding persists. Please do not use tampons as these increase the risk of infection.

It is important to keep your wounds clean. A daily bath or shower is advisable. Avoid the use of highly scented soaps, bubble bath and vaginal deodorants. Your sutures will be absorbable so will not need removing. The dressings on your wounds can be removed after a couple of days.

When can I go home?

You will be in hospital approximately 24 hours but if you have surgery on your bowel or bladder this may be a little longer.

When can I start driving again?

We advise you not to drive for at least 2 to 6 weeks after your operation. However, this will depend on the extent of surgery you have had and your individual recovery. You will be able to discuss it further with your doctor before discharge. We also advise you to contact your car insurance company for advice on driving following your surgery.

When can I return to work?

Your recovery is individual to you and returning to work will depend upon the type of work you do and how you feel physically and emotionally. The type of surgery you have will also determine how quickly you can return to work. Most women need approximately 2 to 4 weeks away from work to fully recover before returning to work or to their usual routine. However, this will depend upon your recovery, and you might wish to discuss it further with your doctor.

Is there anything I need to look out for at home?

Please observe for bleeding, swelling, redness or oozing at the site of your wounds. Also observe for any signs of a fever/temperature over 37.5C. If you have any problems, please contact your doctor or see below.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Endometriosis Specialist Nurse – tel no: 01482 624264 or email hyp-tr.endometriosis.cns@nhs.net

• The  Endometriosis Clinical Nurse Specialists on tel: 01482 624033.  If they are not there, an answer phone is available or email hyp-tr.endometriosis.cns@nhs.net
• Contact or visit your doctor.
• Call the Gynaecology Ward for advice on tel: 01482 604387 or the ward you were discharged from.
• Call NHS 111 and speak to a specially trained nurse.
• Go to your nearest Emergency Department or call 999 in the event of an emergency.

Useful information  – Information about our Gynaecology Services

General Information – Endometriosis UK – tel: 0800 8082227;  www.endometriosis-uk.org