What is endometriosis? And the signs you shouldn’t ignore

Endometriosis is a chronic (long-term) condition that affects one in 10 women of reproductive age in the UK. It usually affects the pelvic area, causing pain and other symptoms.

Endometriosis explained

Endometriosis is a condition where tissue, such as the cells that line the inside of your womb (uterus), grow in other areas of the body such as your ovaries, fallopian tubes and the lining of your pelvis (peritoneum). With moderate to severe endometriosis, there may also be cysts on one or more ovaries and fibrous bands that loosely connect organs known as adhesions. In some cases, these cells can grow in areas beyond the pelvis, such as the lungs, vocal cords and kidneys. During your menstrual cycle, these patches of cells are also affected, thickening and then breaking down and bleeding.

As this tissue has nowhere to go, over time it can cause scarring, irritation, pain and fatigue. In more serious cases, it can cause bowel and bladder problems, as well as fertility issues, making it harder to get pregnant. The reason for fertility problems isn’t entirely clear, but it's thought to be caused by scarring of the fallopian tubes that blocks eggs reaching the womb.

Causes of endometriosis

The cause of endometriosis is currently unknown but there are established risk factors. You have a higher risk of developing it if a close female relative such as your mother, aunt or sister has endometriosis.

Common symptoms of endometriosis

Endometriosis symptoms vary from person to person depending on where the extra cells have grown and how much they’ve grown. Common symptoms include:

1. Painful, heavy and/or irregular periods

Endometriosis can cause heavy periods with bleeding lasting longer than a week.  Periods may also be very painful or irregular. You may notice bleeding in between your periods and pain when you ovulate. 

2. Pain in the lower tummy

Regular or constant pain in the lower tummy or back, around the pelvis, is another common symptom of endometriosis. The pain can range from mild to intense and even debilitating.

3. Pain or blood during bowel movements

Endometriosis can cause painful bowel movements and you may notice blood in your stools during your period. 

4. Painful sex

Some women with endometriosis find that sex is painful or experience pain for several hours after having sex.

5. Pain or blood when urinating

Endometriosis can affect your bladder, causing pain just before, during or after you urinate. You may also notice blood in your urine. 

Endometriosis can sometimes be mistaken for irritable bowel syndrome (IBS) as the symptoms can be similar eg diarrhoea, constipation and bloating, which are all common during IBS and uncomfortable periods. 

Diagnosing endometriosis

Endometriosis can be difficult to diagnose because many of the symptoms are linked to other conditions. If you suspect you have endometriosis, keep a diary of your symptoms and show it to your GP. They may want to do an abdominal and pelvic examination, where they feel your lower tummy, looking for any lumps or bumps, which could be ovarian cysts. They will also check whether your pelvic organs (bladder, bowels, uterus etc) are moving freely or fixed due to adhesions.

You may be sent for an ultrasound scan to check for swollen fallopian tubes or cysts. If you have a lot of pain when you urinate, an ultrasound scan may be needed to check your kidneys and bladder. If your symptoms affect your bowels, then an MRI scan may also be needed. 

The most definitive way to diagnose endometriosis is with a laparoscopy. This is where a tiny camera is inserted into your pelvis through small cuts. The pelvic organs can be seen and investigated; any signs of endometriosis can also be mapped out. With your prior consent and if appropriate, treatment can be carried out at the same time. 

Treatment for endometriosis

Once endometriosis has been diagnosed there are a number of ways it can be treated. In most cases, non-invasive treatments will be tried first, aimed at whichever symptoms are most in need of attention. 

Pain relief

In the first instance, painkillers may be suggested. This includes analgesics, such as paracetamol or aspirin, or non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen. 

NSAIDs stop the body from producing prostaglandins, which cause the womb to contract during a period — these contractions can be painful. NSAIDs can prevent these painful contractions if you take them before your pain is severe. 

Hormonal treatment

Treatment that targets the hormones that promote the growth of the cells elsewhere, such as those that line the womb, can also help reduce your symptoms. 

The contraceptive pill, a progesterone-only pill (the mini-pill) or a coil are common hormone treatments for endometriosis. 

Stronger medication can also be prescribed to induce temporary menopause but this has significant side effects and can only be taken for up to six months. It is therefore usually only taken in the months before surgery to treat severe endometriosis. 

When taking any hormonal treatment, you’ll need to keep taking it to prevent your symptoms from returning.

Laparoscopy

This procedure is used to remove excess endometrium cells and scar tissue and separate any organs stuck together by adhesions. This can reduce your symptoms but it doesn’t guarantee that your endometriosis won’t ever return. However, hormone therapy after surgery can reduce the risk of your endometriosis recurring.

Hysterectomy

In women who do not plan to have any children, a hysterectomy to remove the womb and sometimes the ovaries may be a solution. This is a major surgery and should be discussed fully with your doctor before making any decisions.