ENDOMETRIOSIS Information Leaflet

Your Health. Our Priority.

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 2 of 11

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.

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.

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 3 of 11

What are the symptoms of Endometriosis? The symptoms of the condition vary from person to person, and may begin in teenagers. In some girls their periods are so bad they need time off school. The symptoms can vary in site, type and severity. Up to three quarters of sufferers may require time off work. However, not all women with the disease have symptoms. Some women show no symptoms at all despite having severe disease. Others experience severe symptoms despite only having mild disease. 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)  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 commonest reasons why GPs refer women to gynaecologists. Other symptoms are often ignored or result in referral to other health care professionals, resulting in delayed diagnosis.

How is endometriosis diagnosed? Diagnosis of the disease may take time, often several years (on average 8 years). It cannot be confirmed by symptoms alone, because the symptoms can be confused with those of other medical conditions. At present endometriosis cannot be reliably diagnosed by blood tests or ultrasound scans. Blood tests are currently being evaluated, but at present none are reliable enough to use routinely. Ultrasound and other scans can show ovarian cysts full of endometriosis (endometrioma) but may not identify other areas that can be affected with endometriosis. Endometriosis is normally diagnosed by a gynaecologist. An internal examination may help to try and detect small swellings or areas of inflammation that may indicate that you have endometriosis; and that can be associated with pain. Unfortunately, the only way to confirm endometriosis is by an operation called a laparoscopy where a fine telescope is inserted through a tiny cut in the tummy button. Through the telescope the surgeon can examine the pelvic organs to confirm if your symptoms are from endometriosis. The procedure is usually done under general anaesthetic as a day case.

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 4 of 11

What does it look like? There are lots of different appearances of endometriosis. The typical appearance is little black spots that look like burnt matchstick heads. These are often seen in older women. In younger women there may be little white spots, red spots and signs that new blood vessels are growing to support the endometriosis. There can be lumps of white scar tissue that are felt rather than seen. There can be cysts in the ovary and adhesions (scar tissue) that tie organs together causing further problems. Sadly, these other appearances of endometriosis can be missed, even at operation, particularly if your surgeon is not experienced at looking for the different types of disease.

Classification of the disease As mentioned above endometriosis has many different appearances, it also can vary in amount from a few spots to a disease that invades through the bowel or bladder. The amount of endometriosis that you have does not always predict the amount of pain that you may suffer with. Some women with severe endometriosis only have small amounts of pain, and some women with small amounts of endometriosis have huge amounts of pain. Doctors like to try and classify the amount of endometriosis, but no good classification system exists at the current time. The commonest used one is called the rAFS (revised American Fertility Society) scoring system. This is good for predicting the chances of pregnancy with the amount of endometriosis about, but is not so good for scoring pain. Other doctors like to classify the disease as mild, moderate or severe depending on how it looks.

What treatment is available? Although there is currently no cure for endometriosis, a number of different treatments exist. Treatment is generally focussed on easing your symptoms to allow you to lead a normal life and will depend on several factors such as your age and your desire for having children.

Do nothing If endometriosis is left untreated, it becomes worse in about 4-5 in 10 cases. It gets better without treatment in about 2-3 in 10 cases. For the rest it stays about the same. Endometriosis is not a cancerous condition, nor does it reduce life expectancy. However, it does affect the quality of peoples’ lives.

Medical treatment If your condition is mild then your doctor may recommend that you just have regular check-ups to keep an eye on things to see if the problem gets worse. The symptoms from endometriosis can get better by themselves. If you are experiencing pain then this can be controlled by the use of simple anti-inflammatory drugs like aspirin and brufen and/or pain killing drugs like paracetamol and codeine. It has long been thought (although it is not proved) that endometriosis is cured by reaching the menopause or becoming pregnant, and some doctors advise pregnancy as a treatment. This can be quite difficult especially if sex hurts and infertility is a symptom. It is true that many

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 5 of 11

women feel better when they are not having periods, so most drug treatments aim to mimic pregnancy or the menopause. The drugs commonly used to mimic pregnancy are the oral contraceptive pills (the pill) taken continuously and progestogenic contraceptives (Mirena coil, Implanon, Depo-Provera, Cerazette and the mini-pill). Drugs to mimic the menopause are called GnRH analogues. They act by switching off the hormones that control the ovaries. The ovaries then do not grow any eggs but more importantly, release the hormones that are thought to stimulate the endometriosis. Because these drugs cause menopausal side effects they are usually given in combination with HRT. All the drugs are equally effective, no one drug works better than another. If you are trying to get pregnant none of these hormonal drugs are of any benefit and they should be avoided. If you have large ovarian cysts or adhesions then drug treatments are unlikely to work. The drugs may reduce or eradicate the symptoms of endometriosis in many women (80-90%) whilst they are taking them, in others drugs make little difference to their symptoms. Drugs are often recommended for 6 months and after stopping them many women will experience a rapid return of their symptoms. They all have side effects and the one that is best for you is the one with the least number of side effects. You can always ask for more details of the possible sideeffects of your recommended treatment. If you are taking a drug and it is not helping with your symptoms, or you are getting awful side-effects stop taking it. Several of the drugs mentioned above have been studied scientifically and have been shown to reduce symptoms and the amount of endometriosis present whilst they are being taken. Several other drugs have been tried, but have not been exhaustively tested. This perhaps illustrates that the perfect drug treatment is not available at the present time. These include Pycnogenol (pine bark) which in a small study reduced symptoms from endometriosis from severe to moderate and allowed women still to get pregnant.

Aromatase Inhibitors New drugs are being developed that are aimed at stopping the endometriosis from growing or preventing it from releasing its harmful chemicals.

Surgical treatment Surgery can be used to remove or destroy the endometrial growths and relieve the symptoms they cause. The type of surgery carried out will depend on where and how extensive the growths are, and the capabilities of your surgical team. It is in the area of surgical treatment that advances are occurring. Where fertility is concerned surgery seems to increase the chances of getting pregnant.

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 6 of 11

Conservative surgery The aim of surgery is to remove or destroy the endometriosis, whilst leaving the womb behind. Most operations can be performed with keyhole surgery during a laparoscopy and involve cutting the growths away or destroying them with either laser treatment or cauterisation (heat treatment). Laser and cautery treatment may not always go deep enough to destroy the endometriosis, often resulting in further surgery. Reports suggest that 60-70% of women treated with laser will get some improvement in their symptoms. Cutting the endometriosis away (excision) seems to be the best way forward at present, especially if ovarian cysts are present (see later section). Sometimes it is necessary to perform a more extensive operation where your abdomen is opened with a larger incision (laparotomy). This is often done if you require bowel surgery to remove the endometriosis. With this type of operation a much longer recovery period will be needed. Hormone therapy may be used in conjunction with conservative surgery. Radical surgery If you have no success with other treatments or if there is a possibility of adenomyosis then a hysterectomy may be suggested. This may involve the removal of your womb and is done with or without the removal of your ovaries. If your ovaries are removed you will need to discuss Hormone Replacement Therapy (HRT) with your doctor. A hysterectomy is generally considered as a last resort when all other treatment options have been explored. It does not cure endometriosis by itself. Preferably the hysterectomy should be done with keyhole surgery and any endometriosis should be removed or destroyed at the same time. This type of procedure is often called ‘radical surgery’ as the impact on your body can be significant. It used to be a major surgical procedure and requires a hospital stay of about a week and take as long as 3 months to recover fully from the operation. At Stepping Hill in 9 out of 10 patients when a hysterectomy is needed for endometriosis it will be carried out through key hole, significantly reducing your hospital stay and recovery time.

Ovarian Endometriosis Endometriosis found in the ovary is commonly referred to as endometriomas. We do not know how they form, but think that it may be due to growth of endometriosis into the ovary from the side of the pelvis. This may be why most ovaries that contain endometriosis are stuck to the wall of the pelvis. This is the area where the tube from the kidney to the bladder runs (ureter) and where a nerve that supplies the thigh is found. This is the reason why many women with endometriotic cysts get pain down the inside of their leg. It also means that when surgery is performed to remove the cyst and the endometriosis beneath, the ureter can be damaged. We know that if there is an endometrioma present then drug treatments will not work. We also know that 1 in 3 women who have endometriomas will also have more severe endometriosis. At the current time we think that the best way of treating the cyst is to remove it (a cystectomy). This is associated with a lower rate of recurrence and a higher pregnancy rate than draining it and destroying the cells that line it. If you have an endometrioma and are considering IVF then it is recommended by NICE (National Institute of Clinical Excellence) that they are removed first, because this is associated with a higher pregnancy rate, even if you are not experiencing any

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 7 of 11

pain from it. Some IVF doctors are concerned that this could damage the ovary and it may reduce the number of eggs in the ovary.

Stockport Endometriosis Centre Stockport Endometriosis Centre is one of three specialised centres in Greater Manchester with expertise in the management of severe endometriosis. A team of two Gynaecologists specialised in advanced key hole surgery, Colorectal, urological surgeons, specialist radiologists, pain management specialists and a specialist nurse form the core of this service at Stepping Hill hospital. A specialist clinic dedicated to endometriosis patients is held once a month on a Tuesday and a monthly multidisciplinary meeting is held to plan treatment for those requiring complex surgery. The specialist nurse will help you in your journey and provide information about appointments and treatments. If severe endometriosis is suspected you will be recommended more scans (MRIs), endoscopy (examination of your bowel or bladder) and be asked to fill a pelvic pain questionnaire. If your consultant recommends surgery please read the information leaflet titled ‘Your surgery for severe endometriosis’.

What are the risks Every operation carries an element of risk. Most surgical treatments for endometriosis (including diagnostic laparoscopies) are carried out under general anaesthetic which itself carries a small risk. Making an incision into the abdomen, no matter how small, may lead to infection, bleeding and other problems but your surgical team will try to ensure that the chances of complications are minimised. During the procedures, surgical instruments are moved around inside your abdomen and despite special care by the surgeon there is a small chance that the instruments may damage some of the surrounding tissue or organs. If the instruments puncture or tear tissue the surgeon is usually able to repair the damage either via keyhole or an open operation. Rarely there can be damage to major blood vessels that causes significant bleeding and a blood transfusion is required. Also if your bowels need surgery on them there is a chance that the bowels can be damaged and a hole could form making you seriously ill afterwards. Taking cysts out of the ovary can rarely cause bleeding that can only be stopped by removing the entire ovary. Thankfully it is rare that major complications occur. In some cases the damage is very minor (much like an abrasion) and your body will heal itself over the course of 4-5 days following your operation. However, during this healing process there is a chance that adhesions may form. Adhesions are band-like growths that can form between tissues and organs at and around the site of surgery. The vast majority of adhesions do not cause problems but in some patients they have been seen to bind, block and otherwise impair tissue and organs leading to complications in later life.

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 8 of 11

Adhesions are associated with fertility related problems, pain, bowel obstruction and may complicate future surgery. The surgeon may use adhesion prevention barriers to try and reduce the formation of adhesions. Sometime the ovaries are lifted temporarily by stitches through your tummy.

Other treatments Acupuncture, homeopathy, nutritional therapy etc. Alternative medical treatments often have a role to play and can help women tremendously with many of their symptoms. Details of these types of treatment are beyond the scope of this leaflet.

Making the right choice – giving consent Your doctor should discuss all of the available treatment options and how suitable they are for you. Ultimately, though, it is your decision. Your doctor will not proceed with treatment until he/she knows you are comfortable and gets your agreement. It is therefore very important that you understand the benefit of treatment and the possible risks before you consent. The following questions may help you get the information you need to make your mind up as to what is best for you:

If your doctor is recommending drug treatment  What are the benefits of the medicine you are suggesting?  What are the possible side-effects of this medicine?  How long do I need to take the medicine? If your doctor is recommending surgery  Are you a doctor with a special interest in endometriosis?  What operation are you recommending?  Why do I need the operation?  Is surgery absolutely necessary?  What are the alternatives?  What are the benefits of having the operation?  Do you work in conjunction with other surgeons?  What will happen if I do not have the operation?  What kind of anaesthesia will I need?  How do I need to prepare for the operation?  How long will it take me to recover after the operation?  Can you explain the measures you will take to minimise the complications both during and after surgery?

Excisional Surgery Excision means to cut away. The aim of this surgery is to remove the endometriosis whilst preserving the womb, tubes and ovaries. It is currently thought to be the gold standard of treatment for the disease. The surgery can be performed laparoscopically (key-hole) in experienced hands. There are advantages of key-hole surgery as you get smaller cuts, require less time in hospital, less pain killers and are back to normal activities in a shorter period of

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 9 of 11

time. With a magnified view of the pelvis, it is easier to see the endometriosis and therefore remove it. There may be less blood loss and possibly the formation of less scar tissue (adhesions). Prior to surgery you may require bowel prep. This is medicine that clears out the bowels. It makes it slightly easier to perform the surgery, but more importantly if your bowel is cut whilst removing the endometriosis it is thought to be safer to stitch it back up with an empty bowel. As well as a cut in your tummy button measuring about a centimetre you will have 2-3 small half centimetre cuts lower down. It is through these cuts that various instruments are put into your tummy. The surgery aims to remove all visible endometriosis and any scar tissue that is felt. Some may be left behind, especially if it is too small to see. The average time of surgery is about 2 hours, although with extensive endometriosis operations can last for several hours. The surgery is normally performed by a gynaecologist with the aid of surgeons and urologists if necessary. Most people are in hospital for 1-2 days afterwards. There is no guarantee that the surgery will result in future pregnancies. If you are trying to get pregnant and have endometriosis the National Institute of Clinical Excellence (NICE) recommends that you have surgery first. Studies suggest that once this type of surgery has been performed, then of those women who try to get pregnant 50% will. There is no guarantee that you will be pain free afterwards, or will not require further surgery. The surgery often provides long term relief from symptoms but there is a chance that further endometriosis could develop over time. It would appear that about 1 in 3 women will undergo further surgery at some point, but often there is no further endometriosis seen. Again, from published studies about 70% of people will have a significant reduction in their pains. One of the things the surgery may not help with is painful periods, but it is good for other pains (such as those with intercourse). For 20% of people (1 in 5) this surgery will not work. It may not work because the endometriosis is not actually causing the pain and there could be conditions within the womb for instance, like adenomyosis that are untreated by the surgery.

Contact us Endometriosis Specialist Nurse 0161 419 5519 Jasmine Ward 0161 419 5508 / 5509 General information Endometriosis UK Tel: 0800 808 2227 www.endometriosis-org.uk The Simple Holistic Endometriosis Trust (SHE) Tel: 08707 743665/4 www.shetrust.org.uk

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 10 of 11

FPA (formerly the Family Planning Association) Tel: 0845 310 1334 www.fpa.org.uk The Hysterectomy Association www.hysterectomy-association.org.uk Tel: 0871 781 1141 NHS Direct www.nhsdirect.uk Tel: 0845 4647

www.stockport.nhs.uk

Gynaecology | Stepping Hill Hospital

Page 11 of 11

If you would like this leaflet in a different format, for example, in large print, or on audiotape, or for people with learning disabilities, please contact: Patient and Customer Services, Poplar Suite, Stepping Hill Hospital. Tel: 0161 419 5678. Email: [email protected].

Our smoke free policy Smoking is not allowed anywhere on our sites. Please read our leaflet 'Policy on Smoke Free NHS Premises' to find out more.

Leaflet number Publication date Review date Department Location

www.stockport.nhs.uk

MAT137 December 2015 December 2017 Gynaecology Stepping Hill Hospital

Gynaecology | Stepping Hill Hospital