Endometriosis: just because you can’t see it doesn’t mean it doesn’t exist

Endometriosis is more common than most people think, but the awareness to recognise and treat it is still poor.

Saira Khan

Presenter

It’s Endometriosis Awareness Week, time when we need to:

  • Promote a greater awareness and understanding of endometriosis as a real, debilitating and disabling disease
  • Highlight the consequences of living with endometriosis for the sufferer, carer and all those affected by the disease
  • Create a greater awareness and understanding of endometriosis amongst the medical profession, education sector, employers, politicians and society in general
  • Seek a best practice and consistent care and treatment for everyone wherever they may live
  • Provide an opportunity for those whose lives have been affected by endometriosis to play an active part in helping making a difference.

What is endometriosis?

Endometriosis is an extremely painful condition in women (including young women aged 17 and under) presenting with one or more of the following symptoms or signs:

  • Chronic pelvic pain
  • Period-related pain (dysmenorrhoea) affecting daily activities and quality of life
  • Deep pain during or after sexual intercourse
  • Period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements
  • Period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine
  • Infertility in association with one or more of the above
  • Symptoms and severity can vary, with some not experiencing such pain.

Incredibly, recent research has shown that women with endometriosis are losing £41,000 in earnings while waiting an average seven-and-a-half years for a diagnosis.

About one in ten women have endometriosis. For them cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month, these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.

Around 1.5 million women in the UK are currently living with the condition. Endometriosis may lead to infertility, fatigue and bowel and bladder problems. Endometriosis can also have a huge impact on women’s quality of life, work and relationships.

How is it diagnosed?

On average it takes 7.5 years from onset of symptoms to get a diagnosis. It’s important to share your symptoms with your GP. You will probably be given a laparoscopy, an operation in which a camera (a laparoscope) is inserted into the pelvis via a small cut near the navel. The surgeon uses the camera to see the pelvic organs and look for any signs of endometriosis. If endometriosis is diagnosed, the endometriosis may be treated or removed for further examination during the laparoscopy.

How can it be treated?

If you have been diagnosed with endometriosis, your doctor or specialist should discuss possible endometriosis treatment options with you.
Currently, there is no cure for endometriosis. The different treatments available for endometriosis aim to reduce the severity of symptoms and improve the quality of life for a woman living with the condition.

What causes endometriosis?

Several theories have been suggested, including:

  • Genetics: the condition tends to run in families, and affects people of certain ethnic groups more than others
  • Retrograde menstruation: when some of the womb lining flows up through the fallopian tubes and embeds itself on the organs of the pelvis, rather than leaving the body as a period
  • A problem with the immune system (the body's natural defence against illness and infection)
  • Endometrium cells spreading through the body in the bloodstream or lymphatic system
  • There is some thought that environmental toxins may cause endometriosis
  • Metaplasia, where one type of cell changes or morphs into a different kind of cell.

However, none of these theories fully explain why endometriosis occurs. It's likely the condition is caused by a combination of different factors.