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Late diagnosis of endometriosis

Fiona Huddleston and Chaima Sliti ask how much do you know about endometriosis and what can be done if your diagnosis comes too late?

Posted on 31 March 2021

Endometriosis is the second most common gynaecological condition affecting one in 10 women in the UK yet it remains underdiagnosed and undertreated. In Endometriosis Awareness Month, we are shedding light on this often misunderstood illness.

One of the main issues around endometriosis is the delay in its diagnosis. The All-Party Parliamentary Group (APPG) on Endometriosis published a report in October 2020 which found that in England it takes, on average, a staggering eight years to diagnose endometriosis. Delayed diagnosis hasn’t improved over the last decade and that is likely to remain the case given the additional challenges brought by the covid pandemic.

Undiagnosed endometriosis can be a real disruption to a woman’s life including to her education, her professional and personal life. Some women have reported having to miss work or school for three to four days per month every month due to their symptoms. The condition can also worsen if left untreated and can have a significant impact on mental health. The earlier it is diagnosed the sooner you can receive effective treatment to manage the symptoms and ultimately improve your quality of life.

Too often, symptoms of endometriosis are equated to painful periods and are usually dismissed as such. Excruciating pain during period, heavy menstrual bleeding, abdominal pain, extreme fatigue and nausea are not normal pre-menstrual syndrome. If you are unable to go to work or school because of period pain and struggle to carry out your day-to-day activities, you might be suffering from endometriosis.

In a time where GP Practices have mostly switched to telephone consultations and hospital referrals are limited, it is crucial for women to become their own advocate. The first step towards that is to have a better understanding of the condition and to listen to your body.

What is endometriosis?
Endometriosis is a condition where the cells that line inside of the womb, the endometrium, are found on the outside of the womb instead - most commonly in the pelvis. These cells respond to the same hormones as the ones inside the womb which means that every month during the menstrual cycle, they are released and then break down when pregnancy does not occur. Because these cells are unable to leave the body via the period, this can lead to inflammation, pain and the formation of scar tissue.

What to do if you think you have endometriosis?
Obviously, the first step should be to raise your concern with your GP. Unfortunately, this is often not enough to trigger an investigation and/or referral. Here are some steps you should consider:

  • Prepare a menstrual diary and try to record your symptoms every month. A menstrual app is an easy and simple way to record your symptoms
  • Write down your concerns before your GP appointment to facilitate the conversation and make sure you relate all your symptoms
  • Ask for a referral. Your GP is unlikely to be a specialist in endometriosis, so it may be beneficial for you to get referred to a gynaecologist
  • Consider changing doctors if you do not feel heard by your GP

Once diagnosed, what’s next?
Although there is no cure yet for endometriosis, a range of treatment is available to help minimise the symptoms and improve your quality of life. These include:

  • Pain relief medication
  • Hormone treatment – there are contraceptives and non-contraceptive options which reduce or stop ovulation and therefore the growth of endometriosis
  • Surgery – it is used to diagnose and treat endometriosis. Surgery can be conservative (removing the endometriosis tissue deposits), complex (if organs such as the bladder or bowel are affected) or radical (where the womb or ovaries are removed).

I think I was diagnosed too late – what can be done to help?
Leigh Day’s healthcare team provides help to women who have suffered complications and life-changing consequences from delayed diagnoses of endometriosis. A delayed diagnosis may cause the condition to worsen over time and have a significant impact on your life – both physically and psychologically – because you were not receiving the right treatment.

At Leigh Day, we also assist women when something went wrong with the treatment they received. We are currently representing a client who was diagnosed with stage II endometriosis and was unable to conceive naturally. Endometriosis can lead to fertility issues and in most advanced cases can be the cause of infertility. Our client underwent explorative surgery to enhance her fertility but complications during surgery have left her with worse prospects of conceiving. The complications of the surgery have also taken a toll on her mental health and wellbeing which has been factored into the calculation of her claim.

Fiona Huddleston (1)
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