- Reference Number: HEY-921/2019
- Departments: Gynaecology
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This leaflet has been produced to give you general information about your condition and possible treatment. Most of your questions should be answered by this leaflet. 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.
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 can affect all of the pelvic organs including the ovaries, fallopian tubes, supports of the womb (ligaments), bowel, bladder and the lining of the pelvic cavity (peritoneum). If it involves the ovary then it often causes cysts (endometrioma). Rarely is it found in other areas such as the nose or lungs, and it has even been found in men. 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
The most common symptoms include:
- Pelvic pain
- Pain during sexual intercourse
- Pain with or before periods
In addition, some women with endometriosis suffer from:
- Heavy periods
- Discomfort when urinating
- Painful bowel movement (with possible bleeding from the anus)
- 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
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.
What causes Endometriosis?
No one knows what causes endometriosis, but there does appear to be a genetic link. Dr. Sampson in the early 1920’s suggested that endometriosis resulted from “retrograde menstruation”. In up to 90% of women during a period, blood flows backwards down the fallopian tubes and into the pelvic area. This blood contains cells from the lining of the womb, which may then stick to surfaces outside the womb to cause endometriosis. This does not explain many things about endometriosis – like how it can be found in lungs or other parts of the body. Other people believe that as the womb develops, cells can be put down in the wrong place to later develop into endometriosis. It could spread through the blood stream or lymphatic system from the womb, or could be a reaction by the cells in the tummy lining (peritoneum) to some form of injury. It could also be because the body does not adequately clear cells from the peritoneum or attacks itself – an “autoimmune” process. It is likely that it is a combination of these things.
Why do I need surgery for endometriosis?
Medicine is often the first line of treatment for endometriosis, but it does not work for everyone. Some people need surgery to remove endometriosis for long-term improvement in pain and bowel-related symptoms.
Surgery is often needed when:
- There are cysts in the ovary
- Medicines used for the treatment of endometriosis cause side effects.
In most patients, this surgery is performed laparoscopically (keyhole surgery). However, some patients need open surgery through a cut along the bikini line, or an up and down cut below the belly button.
The surgery may be carried out by two surgeons, your gynaecologist and a bowel or bladder specialist, if this is needed. Your surgery will be carried out under general anaesthetic.
What does surgery for severe endometriosis involve?
The surgery for severe endometriosis can involve:
- cutting away the tissue affected by endometriosis
- releasing the ovaries and removing cysts when they are present
- identifying the ureters (tubes that carry urine from the kidneys to the bladder) and freeing them so that endometriosis tissue around the ureters can be removed
- removing the tissue affected by endometriosis around the back and the side of the womb, and around the bladder, ureter and the space between the back passage and the vagina.
If severe endometriosis affects your bladder or is found close to your bladder, the gynaecologist will perform the surgery with a bladder surgeon (urologist).
Firstly, they may inspect your bladder with a telescope (cystoscopy). They will then:
- insert stents (fine tubes) into your ureters to allow for easy identification during surgery
- open your bladder to remove the endometriosis
- pass a catheter (fine tube to drain urine) into your bladder, which may need to be left in place for up to 10 to 14 days (although it is usually needed for a much shorter time). The consultants will advise you how long you need the catheter for after the operation.
If endometriosis affects your bowel, the gynaecologist will perform the surgery with a bowel surgeon. The surgery involves cutting your bowel free and assessing if the endometriosis is growing on your bowel, or how deeply it has grown into your bowel. Sometimes, nothing more needs be done. However, depending on how the endometriosis has developed, the surgeon may decide that it needs to be cut away. If this is the case, the surgery team may need to:
- remove the outer surface layer of your bowel
- take out a small disc of bowel and sew up the resulting hole.
If the development of endometriosis is more extensive, the team may have to remove a small section of the bowel and re-join it with metal staples. To do this, the surgeon will have to make an additional small cut in the pubic hairline so they can remove the bowel section.
Occasionally, if the bowel join is very low (near the anus) or the operation has been technically difficult, you will need a temporary colostomy. Colostomy is where the end of the healthy bowel is brought out through a small cut on the tummy and a bag is used to collect the faeces. This is called a stoma, and it protects the stapled ends of the bowel and helps with the healing process.
The colostomy is usually closed after about three months. You will need to undergo a smaller second operation for this and often stay in hospital for a few days until things start to work normally.
If endometriosis only affects your ovaries, the surgery is carried out by a gynaecologist. If it affects your bowel too, a bowel surgeon will be involved. The ovaries are often affected by endometriosis and the endometriosis can either be on or inside the ovary. Endometriosis within the ovary forms cysts. Usually the gynaecologist will remove the cysts safely without removing the ovary. But your ovary may have to be removed if:
- the cyst is large and has damaged the ovary
- there is bleeding from the ovary that cannot be stopped after the cyst is removed.
As your fallopian tube may also be damaged in these cases, it may need to be removed at the same time as the ovary. If you do not wish to have your ovaries removed, even if they are affected by endometriosis, please tell the doctor. If you do not want the ovaries and fallopian tubes removed under any circumstances, the surgeon may decide not to operate on you. If an ovary affected by endometriosis is left in your pelvis, there may not be any improvement in your symptoms. You may also need further operations in the future for persistent pain, which carry greater risks of complications.
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.
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
- 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.
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 1-2 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 – 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 2-4 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 Gynaecology Clinical Nurse Specialists are happy to speak to you at any time. You may find it helpful to write down the questions, so that you do not forget them.
- Gynaecology Clinical Nurse Specialist (01482) 624033. If they are not there, an answer phone is available.
- Contact or visit your doctor
- Call the Gynaecology Ward for advice on (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
Information about the Gynaecology Services can be found at https://www.hey.nhs.uk//gynaecology
Endometriosis UK Tel: 0800 808 2227 https://www.endometriosis-uk.org
General Advice and Consent
Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.
Consent to treatment
Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.
The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:
- you must be able to give your consent
- you must be given enough information to enable you to make a decision
- you must be acting under your own free will and not under the strong influence of another person
Information about you
We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.
We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.
Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.
If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.