Endometriosis: The diagnosis challenge

I dedicate this to someone I love, who is very special to me.

Endometriosis is a condition that affects 176 million women worldwide, yet little is know about what causes it or how to effectively treat it.

It is a debilitating illness that affects 1 in 10 women. Endometriosis is primarily characterised by a long-term disorder that causes tissue, similar to that found in the lining of the womb, to shed and travel to other parts of the body such as the ovaries and the fallopian tubes. In turn, this can lead to severe pain and the potential for cysts and infertility. Unfortunately, doctors are still unclear as to how this condition starts or whether it’s hereditary. Some believe it is a problem with the immune system. However, the biggest challenge to date is overcoming the devastating diagnoses times. On average, women are waiting up to 10 years!

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Investigation and Diagnosis

As will all disorders, tests must be done in order to receive a diagnosis. However, with endometriosis things aren’t so straightforward. Too often, women must fight to be heard and get a GP referral. This is usually after years of fruitless doctors’ appointments.

Typically, the first step towards diagnosis is having a hysteroscopy. This involves a telescopic camera being inserted into the womb. The device gives doctors the opportunity to examine pictures from the camera and spot any abnormalities. Following this, patients may be asked to see a specialist consultant. From here, the next step would be undergoing a procedure called a laparoscopy. This is an invasive procedure and currently the only way to properly diagnose endometriosis. Following surgery, consultants can provide an answer. There is currently no cure for those with endometriosis, but a treatment plan to manage pain and ease symptoms is offered. Treatment will vary depending on your individual circumstances, but can include; painkillers, hormone therapy or an operation to remove pain-causing cysts.

But why should women go through keyhole surgery?

There is still a great deal that medical researchers don’t know about endometriosis. And unfortunately, the disorder is still unfamiliar to some GPs. According to the NHS, endometriosis can be difficult to diagnose because symptoms can vary and mirror other gynaecological conditions. Therefore, a laparoscopy is the only way to be certain whether what you’re experiencing is indeed endometriosis.

Complications

Endometriosis can affect girls as young as 11. But on average, women who are diagnosed are aged between 25-35, this being the prime age for pregnancy. It is regrettable therefore, that often one of the main complications caused by the disorder is infertility. Surgery to remove any endometriosis tissue will improve the chances of becoming pregnant. In some circumstances endometriosis can cause further problems, such as infections and even organ damage.

Living with endometriosis

Endometriosis can be difficult to deal with, both physically and emotionally. But it does not have to control your life. Learning about the condition is key, as well as seeking the best support for your individual needs. Nutritional wellbeing and the introduction of a wheat-free diet are useful things to try. There are also numerous organisations that you may find helpful, such as Endometriosis UK. These provide information and advice, as well as a helpline and a directory of local support groups.

The APPG Inquiry

In 2018, the All-Party Parliamentary Group (APPG) was launched. Their mission is to raise awareness of endometriosis in Parliament. The creation of this group has been a ground-breaking move for women, bringing together parliamentarians from all political parties. They debate key issues affecting women with endometriosis and investigate how patients can better receive the much-needed support.

This year, APPG published their findings following a 10-year inquiry. They reported a lack of improvement on diagnosis times.

The inquiry surveyed 10,000 people, including patients and healthcare professionals. Some of their findings can be found below:

• On average it still takes 8 years to get a diagnosis
• Prior to getting a diagnosis and with symptoms:

58 per cent visited their GP more than 10 times

43 per cent visited doctors in hospital over 5 times

53 per cent visited A&E

• Only 19 per cent said they were seen by a specialist at an endometriosis centre
• 90 per cent said they would have liked access to psychological support.

The APPG has called on the UK Government to commit to a series of support measures. Emma Cox, CEO of Endometriosis UK commented on the report, saying:

‘This report should be the final warning to Governments and the NHS that action must be taken on endometriosis. Implementing the recommendations in the report will reduce diagnosis time and ensure access to a minimum level of treatment and support for all those with endometriosis — saving on GP, hospital and A&E visits, as well as enabling those with the disease to live the productive lives they want. The NICE Guideline produced in 2017 gives the baseline for care, but despite being adopted across the UK, it has not been implemented; it needs to be’.

Cox also stated that action needs to be taken now:

‘To ensure the next generation with endometriosis are not robbed of the future they deserve’.

Where do we go from here?

The most important thing women can do, is to continue fighting. For those affected, determination is key. Living with crippling pain is horrendous; it can feel like you’re losing an endless battle. Having to curl yourself into a ball just to endure the pain can take away all your strength. It’s important that women know they are not alone in this fight. There is hope. When a doctor insists that, ‘some women just have a heavy flow’ or you’ve been misdiagnosed as having dysmenorrhoea (painful periods) or a UTI, stay strong and insist on being seen by a specialist. You will get your diagnosis and peace of mind.

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