March is Endometriosis Awareness Month, but what is Endometriosis, who does it affect, how do you treat it and what impact does it have on their lives?

All women will know someone or have a friend with the condition, and this is the experience described by my friend.  When my friend told me that she was struggling with fatigue, nausea, bloating and heavy periods I did my best to support her thinking that she was unfortunate to struggle with PMT and bad periods.  Over the years she continued to struggle and regularly saw her GP to seek assistance.  After 4 years of regular GP appointments, she was referred to a Gynaecology Consultant who diagnosed Endometriosis.  I cannot describe the change having a diagnosis made to my friend: it seems like a weight had been lifted.  When she told me she had Endometriosis I had no idea what it was or how I could support her.  I set about finding out about it.

What is Endometriosis?

Endometriosis is a long-term, often debilitating, gynaecological condition where endometrium, the tissue/cells that line the womb, grow in other places in the body.  The most common places where this can occur are the ovaries, fallopian tubes, ligaments supporting the uterus, outer surface of the uterus and the lining of the pelvic cavity.

These cells respond to hormones produced each month during the menstrual cycle and, if the woman does not become pregnant, are expelled as blood by the body during a woman’s period.  However, when these cells grow outside of the womb there is no way for the body to expel the blood which leads to inflammation, swelling and scarring of the normal tissue around these rogue endometrial tissues.

Who does it affect?

Endometriosis can affect women of child bearing age.  It is still not clear what causes endometriosis but it is believed to be linked to things like genes or problems with the immune system.

In the UK, according to the Royal College of Obstetricians and Gynaecologists, it is the second most common gynaecological condition affecting between 2 and 10 women out of 100.

What are the symptoms?

Symptoms of endometriosis include

• pain in the lower abdomen and back,

  

• feeling tired all the time,
• severe period pain,
• abnormal and/or heavy menstrual flow,
• constipation,
• nausea,
• bloating,
• pain during or after sex,
• painful urination and bowel movements during your period,
• depression and isolation as well as
• difficulty getting pregnant.

If these symptoms are severe, they can lead to a woman being unable to work or have a normal life.  Some women may have no symptoms at all.

Pain levels are no indicator to the severity of the disease: some women with severe endometriosis may experience no pain, while a woman with mild endometriosis may have severe pain or no symptoms.

How is it diagnosed?

Endometriosis is difficult to diagnose as each woman experiences it differently and the symptoms are similar to many other conditions such as irritable bowel syndrome.  As a result of this it can take up to seven and a half years for a woman to get a diagnosis of endometriosis.

If your GP think you have endometriosis, they will refer you to an endometriosis specialist.  The specialist will ask questions and then decide on next steps.  This may include a laparoscopy which is the most effective way of diagnosing endometriosis.

A laparoscopy allows the specialist to insert a camera to see images of your stomach or pelvis on a television monitor.  The specialist can then use fine instruments to destroy endometriosis tissue using heat or a laser.  It also allows for a sample of the tissue to be removed for analysis if required.

How is it treated?

There is currently no cure for endometriosis.

Your gynaecologist will decide on the best treatment for you based on your age, your symptoms and treatments tried before.

Treatments can include:

• Anti-inflammatory painkillers to help reduce pain;
• Hormone treatment to limit the production of oestrogen which encourages endometriosis tissue to grow and shed. Hormone treatment can include the use of the contraceptive pill, contraceptive injection or coil;
• Laparoscopy (keyhole surgery) to remove endometriotic tissue, including cysts;
• Hysterectomy (removal of the womb) is sometimes needed if all other treatments have failed and the woman does not want any more children.

Living with Endometriosis

Living with endometriosis can be difficult emotionally as well as physically.  Some women cope by:

• Eating a well-balanced diet such as an anti-inflammatory diet which helps to reduce inflammation in body;
• Exercise including yoga, walking and pelvic floor exercises to reduce muscle tension;
• Lifestyle changes such as a lifestyle that works with your menstrual cycle;
• Hormone treatment, such as the contraceptive pill or having a coil fitted, to manage your hormones;
• Chronic pain management including taking painkillers, hot baths, using a hot water bottle and TENS machine.

Help and Resources

To find out more about endometriosis go to NHS website or Endometriosis UK.