Endometriosis: An increasing awareness sees inquiry launched

Posted: 18/03/2020

March 2020 is Endometriosis Awareness Month and this year endometriosis is receiving more attention than ever.

Endometriosis affects one in ten women worldwide, making it as common as asthma or diabetes. It is also the biggest cause of infertility.

The cost of endometriosis to the UK economy is, according to research from Endometriosis UK, estimated to be £8.2 billion per year through lost work, treatment and healthcare costs. In order to combat this effect, companies are increasingly committing to new schemes which support women suffering from this chronic condition.

Inquiry

In a major step towards raising awareness of endometriosis, the Government has launched an inquiry into the condition, led by Sir David Amess MP and Anna Turley MP. The aim is to gather evidence from those with the condition in order to ascertain how to reduce the time taken for diagnosis and how symptoms can be better alleviated.

The inquiry was launched on 10 February 2020 and will be hearing from experts from March through to July. It hopes to issue its report on the subject by 14 July 2020. The inquiry has made a plea to women across the UK to come forward with their stories and has published a survey by which to do so.

If you suffer from endometriosis and wish to complete the survey, you can do so here.

Despite the condition affecting so many women, new research from Endometriosis UK has revealed that 54% of women and 74% of men do not know what endometriosis is. Further, the disease takes around seven and a half years to diagnose on average.

Why does such a common condition take so long to diagnose and why have so few people heard about it?

What is endometriosis and what are the symptoms?

Endometriosis is a chronic long-term condition where tissue, such as that found in the lining of the womb, is found elsewhere in the body, often around the reproductive organs and the bowel.

This tissue builds up gradually before eventually breaking down, with the build-up and break down of tissue coinciding with the menstrual cycle. However, unlike the tissue in the womb which leaves the body as a period during the menstrual cycle, the blood released from the other broken down tissues has no place to leave the body. Endometriosis can lead to debilitating symptoms such as extreme pain, heavy bleeding, fatigue and bowel and bladder problems. It can also cause problems with fertility.

In October 2019, more than 13,500 women took part in a research study conducted by the BBC which gave an insight into the crippling effects of endometriosis. Many women reported that they were regularly unable to conduct their day-to-day activities, such as attending work and school, because their pain was too much. A number of women revealed that they relied upon strong pain medication to cope and were concerned about their addictive nature. Most worryingly, 50% of women reported having suicidal thoughts.

Diagnosis

Endometriosis symptoms are similar to many other symptoms, making diagnosing the condition very challenging.

Lack of communication is another attributable factor as to why a diagnosis takes so long to obtain. A woman’s menstrual cycle is traditionally a taboo subject, with many women feeling uncomfortable discussing their periods publicly. The result is that some women and indeed GPs are unaware of what ‘normal’ period pain is.

Treatment

Currently, there is no cure for endometriosis. Palliative treatments involve hormonal medication, surgery and pain relief.

As endometriosis responds to levels of oestrogen in a woman’s body, hormonal treatments centre on reducing the levels of this hormone. Methods of hormone control include the combined oral contraceptive pill and Mirena Coil. When considering hormonal treatments, women should make sure to discuss the benefits and possible side effects of each treatment.

Laparoscopy, a surgical treatment, is also used to remove growths of tissue from the body. Women should always discuss the risks involved with these procedures as well as consider the recovery process.

Some women have spoken freely in the media about their decision to undergo a hysterectomy (removal of the womb which can be done with or without removing the ovaries) as a means of managing their endometriosis.

There are various forms of pain management that can assist in living with the condition, including painkillers, low dose antidepressants, transcutaneous electrical nerve stimulator (TENS) machines, physiotherapy, acupuncture, homeopathy, hypnotherapy, osteopathy, Reikie, reflexology and yoga.

The implications of a late diagnosis

A delay in diagnosis of endometriosis can have serious implications for women. Our team of lawyers specialising in women’s health issues have experience of investigating claims on behalf of clients who have spent years going back and forth to their GP and hospital professionals complaining of pain and symptoms indicative of endometriosis, only to be misdiagnosed as suffering from problems such as heavy periods and IBS.

Currently, the only definitive method of obtaining a diagnosis of endometriosis is via a laparoscopy. This is a minimally invasive procedure where a small camera is inserted through an incision into the pelvic area. Some clients have had their symptoms dismissed after having undergone scans which could not find a cause of the pain, but these scans are unlikely to lead to a diagnosis. The key action is to refer to a specialist for appropriate investigations and a laparoscopy to make a proper diagnosis.

If left untreated, women can suffer years of symptoms that could have been managed appropriately had a diagnosis been made sooner. Some women are left with serious bladder and bowels problems due to the deterioration of their endometriosis and other women have suffered devastating impacts to their fertility which arguably could have been avoided had a diagnosis and treatment taken place sooner.

If you have any concerns regarding treatment you have received, please do not hesitate to contact a member of our team to discuss further.

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