Endometriosis

What is Endometriosis?

Endometriosis is a very common condition affecting 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. 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 theories suggest it could be one or a combination of the following:
• Possibly a genetic link.
• “Retrograde menstruation”: blood flowing backwards during a period, 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.
• 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 peritoneum to some form of injury.
• It could also be “autoimmune” a process where the body attacks itself.

What are the Symptoms of Endometriosis?

The symptoms of the condition vary from person to person. Not all women with the disease have symptoms. Some women show no symptoms at all despite having severe disease but 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
• Difficulty becoming pregnant

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 and infertility are the commonest reasons why GP’s refer women to gynaecologists.

How is Endometriosis Diagnosed?

Endometriosis cannot be confirmed by symptoms alone, nor can it be reliably diagnosed by blood tests or ultrasound scans. 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.

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.

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 to have children.

Do Nothing

If endometriosis is left untreated, out of 10 cases: 4 or 5 will become worse, 2 or 3 will get better, and the rest remain 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 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. This can be quite difficult especially if sex hurts and infertility is a symptom. It is true that many 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 contraceptives containing progestogen (Mirena coil, Implanon, Depo-Provera, Cerazette and the mini-pill).

Drugs which 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 or, 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.

Another drug called Danazol used to be recommended. This has male hormonal side effects and has been linked with a slightly higher chance of developing ovarian cancer. Now, because of this it is not recommended as the first drug to try for endometriosis.

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 (internal scar tissue) then drug treatments are unlikely to work.

The drugs may reduce or stop the symptoms of endometriosis in many women (80-90%) whilst they are taking them, but for 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. If you are taking a drug and it is not helping with your symptoms, or you are getting awful side-effects stop taking it.

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. Where fertility is concerned surgery seems to increase the chances of getting pregnant.

• 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. 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.
• 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 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.

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 ureter (the tube from the kidney to the bladder) runs, 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.

Currently 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.

SUPPORT GROUPS

Endometriosis UK
Tel: 0800 808 2227

The Simple Holistic Endometriosis Trust (SHE)
Tel: 08707 743665/4

FERTILITY BASED

WellBeing
Tel: 0207 772 6400

Written and approved by:
Mr A Pickersgill, MB ChB MRCOG MD Consultant Obstetrician and Gynaecologist, Specialist in Minimal Access Surgery

For information and appointments ring SMS Health 0845 290 3244.