Endometriosis

What is endometriosis?

Endometriosis (end-oh-mee-tree-oh-sis) is a gynaecological condition which affects approximately 2 million women in the UK. It can last for a long time (which means it is often called a 'chronic' disease). Women who are affected can find it difficult or impossible to do their normal daily activities.

It can develop at any age - from early teenage years to the menopause. No one knows exactly what causes it but cells like the ones in the lining of the womb are found elsewhere in the body - mainly in the lower abdomen, in the area surrounding the womb. These cells continue to respond to the monthly cycle, but unlike a period, the blood has no way of escaping from the body. Endometriosis may lead to painful inflammation, scar tissue and cysts or infertility. (The medical name for scar tissue is 'adhesions'.)

What are the symptoms?

The symptoms of endometriosis can vary from patient to patient. Some patients experience severe pain while others have no pain but difficulty in becoming pregnant. Some women have both pain and fertility problems.

Pain can occur during periods, at ovulation, during or after intercourse and even with a bowel movement.

Because the symptoms of endometriosis can appear in a variety of ways, diagnosis can be difficult and is sometimes delayed. You may be aware of this if you have recently been diagnosed with this condition at laparoscopy. Presently the average time to diagnosis is 7 years.

How can it affect your life?

Endometriosis can impact on a woman's life in a number of ways such as:

- persistent pain

- tiredness/lack of energy

- depression/isolation

- problems with sex life/relationships

- inability to become pregnant

- difficulty in meeting work commitments.

However with the right help many of these issues can be addressed.

How is endometriosis diagnosed?

Endometriosis can only be diagnosed with 100% accuracy by having a laparoscopy. This is usually performed as day surgery but not always.

Can it be treated?

At the moment there is no cure. Following diagnosis you may be offered one of three types of treatment.

These are:

- Drug therapy

- Surgery

- Assisted reproductive techniques

Treatments

The best choice of treatment depends on the needs of each individual patient and you should discuss this with your doctor and/or gynaecologist. Your doctor may not offer all these options as they may not be appropriate for you.

There are several drug therapy options and these are taken for a number of months. Most treatments work by altering the hormone levels in the body. They all work in slightly different ways but aim to prevent growth of endometriosis tissue.

Possible drug therapies

- The combined oral contraceptive pill

- Special coils

- Progestogens

- Gonadotropin releasing hormone (GnRH) analogues. These are also known as Luteinising hormone releasing hormone (LHRH) analogues.

- Testosterone derivatives

Each medical treatment may have side effects. These will differ between treatments. Discussions with your Doctor will enable a suitable treatment to be selected.

Surgery

Surgery aims to remove the endometriosis tissue and relieve symptoms. Surgery may also be useful to improve fertility. The type of surgery that is done depends on the reason it is being done and the amount and location of the endometriosis tissue.

Many surgeons offer keyhole surgery, such as a laparoscopy which you may have already had. However, open surgery may be necessary. Usually the surgeon will try to avoid removing any organs such as the womb and ovaries or fallopian tubes, especially when a patient wants to retain her fertility. Occasionally the surgeon will recommend a hysterectomy and removal of both ovaries.

Before surgery is offered, the doctor and surgeon will consider each patient's age and individual needs (both emotional and practical).

Assisted reproductive techniques

Where fertility is an issue assisted conception techniques, such as IVF (In-vitro fertilisation) may be offered. Occasionally surgery to deal with cysts may be required as well as infertility treatment. The reproductive ability of your partner will also need to be assessed before the best treatment option is advised.

Complementary therapies

Many women have found their symptoms have improved with complementary therapies such as acupuncture, homeopathy, reflexology, naturopathy, Reiki, osteopathy, aromatherapy and Chinese herbs. It is wise to seek help from a qualified practitioner rather than attempt to treat yourself.

How can you find the right solution?

Finding out as much as possible about your illness and the different treatments available for your specific problems will help you make the right choice. This means full and open discussions with both your GP and gynaecologist so you can establish the range of options.

Remember: it is your body. Always ask about the intended benefits of treatment - either medical or surgical - and the side effects or risks of treatment. Doctors are happier to answer your questions beforehand than to explain their actions to an unhappy patient afterwards.

Further information can be obtained from Endometriosis UK: www.endometriosis-uk.org

About Endometriosis UK

Formed in 1981, Endometriosis UK offers information and support for women living with endometriosis.

- A free confidential national helpline on 0808 808 2227

- Local groups around the UK

- A range of publications and factsheets

- An environment for increased awareness and understanding

- Government lobbying

A free information pack on endometriosis can be obtained by contacting Endometriosis UK on info@endometriosis-uk.org or 020 7222 2781.

You may also like to consider becoming a member of Endometriosis UK.

Among members' benefits are:

- Quarterly newsletters

- Ongoing support and information

- Updates on key issues such are research, treatment and campaigns

- Shared experiences with others affected by endometriosis

- Information on events in your area

- Opportunities to be involved with campaigns

- Updates on Endometriosis UK's services

By joining you will help Endometriosis UK to:

- Have a more powerful voice when campaigning for change

- Do more to help and support women and their families

- Give your point of view to health professionals, politicians and employers

- Plan for the future and expand their work.