Patient information on endometriosis

Endometriosis is pronounced End - oh - me - tree - oh - sis.

Endometriosis is not a cancer and is not dangerous. It can cause pain and difficulty in getting pregnant, but can also be found in women who have had children and in women without symptoms.

The new NHS Choices video on endometriosis features Caroline as the endometriosis expert. The video outlines the symptoms and treatment options, who is affected by it and how to cope with the pain. NHS Choices endometrosis video.

NICE talks: Are my periods normal?

Podcast on Soundcloud

Endometriosis is a condition that affects around one in ten women. However, the average time for a women to get a diagnosis is 7.5 years. In this podcast, the issues that may lead to these delays is explored. Lakshmi, Amy and Helen talk about their experiences with Dr Caroline Overton, consultant gynaecologist at University Hospitals Bristol NHS Foundation Trust.

What exactly is endometriosis?

Endometriosis is where cells, similar to those in the lining of the womb (called endometrium) have seeded themselves inside the tummy and pelvis.

See mild endometriosis

These cells (called implants or deposits) look like pepper sprinkles inside the tummy. These implants swell in the days before a period and bleed inside the tummy. This causes the typical symptoms of pain before a period and often excruciatingly painful periods.

Endometriosis can be found on the skin lining of the pelvis (called the peritoneum), the ovaries, outside of the womb (uterus), bladder and bowel. The symptoms vary and depend on where the endometriosis is growing. Typical symptoms are pain going to the toilet and internal pain having sex.

Endometriosis causes irritation and inflammation. This can result in one structure sticking to another (called adhesions). Adhesions can be fine like cobwebs or can be like ‘superglue’. In the most severe endometriosis, the adhesions can bind the womb, tubes, ovaries and bowels together.

See ovarian adhesions

Who gets endometriosis?

Endometriosis is common. In the UK about two million women in have endometriosis. It is most commonly found between the ages of 15 and 45.

You are more likely to have endometriosis if your mother or sister(s) have endometriosis, but it doesn’t always run in families.

What if I don't treat the endometriosis?

Research suggests that endometriosis can get better as well as get worse over time. You might decide not to have treatment, if your symptoms are minor and you have finished having your family. As a general rule, endometriosis gets better on the contraceptive pill, during pregnancy, breast feeding and after the menopause.

What can I do to control the symptoms?

Pain control is better if you stay ‘ahead of the pain’ by taking your pain relief medicine regularly. Anti-inflammatory drugs (such as ibuprofen) provide good pain control and can be taken as well as paracetamol.

Exercise is a good remedy for pain especially period pain, so if you can face getting your trainers on and getting out of the front door, this will positively help.

Endometriosis commonly co-exists with irritable bowel syndrome which can be managed by following a healthy diet with plenty of fruit and vegetables. Peppermint water or an antispasmodic bought over the chemist counter may help.

Complementary treatments haven’t been scientifically proven, but many women find that complementary therapies such as acupuncture or relaxation therapies help them in managing the symptoms of endometriosis.

Get in touch with your local support group – just knowing that you are not alone can be a real help.

What are the treatments for endometriosis?

There are hormone treatments and surgery.

Hormone treatments are usually for six months, but the birth control pill or the Mirena system can be used long-term to keep the endometriosis under control.

All the hormone treatments are very effective for treating pain. Hormone treatments are not recommended if you are trying to get pregnant unless they are to treat pain or are a preparation to further surgery. They are contraceptive and do not make it easier to get pregnant after the treatment.

Laparoscopy/laparoscopic surgery

Laparoscopy is an operation to look inside the tummy and pelvis. Through further small cuts on the tummy it is possible to operate. Implants can be cut out (excised) or treated by laser or diathermy. Adhesions can be cut to release the pelvic organs.

An endometriosis cyst can be ‘peeled out’ from inside the ovary. These cysts are inside the ovary, like a orange inside the orange peel and not, as is commonly thought, sticking out from the outside. The ovary is stretched around the cyst, but will still be able to work to produce eggs and ovulate.

Depending on the severity, it may be possible to completely treat the endometriosis or you may need a second more extensive operation having seen where the endometriosis is.

Will I be able to have children if I have endometriosis?

Most women with endometriosis will conceive without any problem.

If there is a delay in getting pregnant, laparoscopic treatment can improve your chance of getting pregnant. It is thought that the endometriosis produces chemicals that reduce the chance of the sperm fertilizing the egg. Release of adhesions helps to improve the chance of the egg getting to the Fallopian tube.

Will the endometriosis come back after treatment?

Whatever type of treatment you have had for the endometriosis, research suggests that endometriosis slowly comes back over time, hopefully giving you several years before needing more treatment.

Useful addresses

Endometriosis UK. A Charity supporting women with endometriosis in the UK

Information on endometriosis from the Royal College of Obstetricians & Gynaecologists UK

Information on Endometriosis from the American College of Obstetricians & Gynaecologists USA