Endometriosis: a hidden epidemic

It’s as common as diabetes, yet so few are aware of its existence, delaying diagnosis by more than nine years!

What is endometriosis?

Endometriosis is a condition where cells that behave like those in the lining of the womb (the endometrium) are found in other parts of the body.  The condition embeds around the pelvis causing inflammation, which may lead to pain and an inability to conceive.  More rarely, these cells can invade the bladder, bowel and other organs, and although it is not life threatening, it can certainly be life altering in terms of preventing pregnancy. Many women, who have been unable to conceive or have failed IVF treatment, have endometriosis.  What’s the good news?  It can be removed which will significantly improve your changes of pregnancy!

What are the symptoms?

Symptoms include lower tummy pain, back pain or cramps during a period, or even very painful periods with heavy bleeding.  Symptoms also include experiencing pain during sex and/or pain whilst passing urine or during bowel movements.  If you experience any of these symptoms, don’t ignore them, as you may have a condition called endometriosis.

How common is it?

It is estimated that around two million women in the UK have endometriosis (just as many who have diabetes), yet awareness of the condition is low, resulting in significant delays in diagnosis. Research led by consultant gynaecologist Mr Haider Jan shows that, on average, women visit their GP 11.6 times before being diagnosed with endometriosis – a delay in diagnosis of more than nine years!  83% of women were told their pain was normal and 51% felt their pain was not taken seriously.

How is endometriosis diagnosed?

Diagnosis is through a trained specialist placing a camera through the belly button and looking directly inside the tummy (this is known as laparoscopy and the same procedure can also treat the disease).  The latest research now shows that excision (cutting out with an ultrasonic knife) of endometriosis is significantly more effective than laser treatment and thus is the new standard at laparoscopy.  Mr Jan and his team are responsible for providing the only research in the UK that proves this technique and in 2014 were awarded the Carlo Romanini international prize for the research.  Excisional surgical techniques require a high degree of precision, skill and meticulous attention to detail and as such, they are not commonly practised.  On average, women experience 80% less pain one year after excisional surgery.

Is there an alternative to surgery?

Surgery is not the only option, but it is the only one that improves both pain and fertility.  Sometimes, taking medicine such as the pill can be helpful in masking the symptoms, but it does not help with reducing or slowing the disease.  The Mirena coil is useful in some cases for preventing the recurrence of pain following surgery.  In extreme cases, a medicine called Zoladex can be used, which switches off the hormones temporarily, causing shrinkage and regression of endometriosis.  Sadly, it has to be used very carefully because of the side effects, which includes a decrease in bone mineral density, which increases your risk of developing osteoporosis. Finally, there is a very effective medicine called Dienogest and whilst it is available privately in the UK and offers many women relief of their symptoms, it is not currently available on the NHS.  As a result, most UK doctors have never heard of it.  Indeed, many women have avoided major surgery by taking this medicine.

Ask your GP to refer you to be seen by a specialist

Endometriosis can cause significant pain and infertility, which severely affects your quality of life. If you think you, or someone you know, may have endometriosis, ask your GP to refer you to a specialist who is both trained and experienced in performing excisional surgery for endometriosis.