Posted: 09/03/2021
March is Endometriosis Awareness Month and endometriosis is certainly a condition that requires increased awareness, further research and additional support.
Often debilitating and causing chronic pain, endometriosis can double the risk of infertility in those under 35 and affects 10% of women from puberty to menopause (over 1.5 million people in the UK).
The All-Party Parliamentary Group (APPG) on Endometriosis published a report in October 2020 which found that in England it takes on average eight years to receive a diagnosis. Further, despite the advances in medicine, the diagnosis timeframe has not improved in over a decade.
This has been recognised as a growing issue in the APPG report, which recommends that the Government makes a commitment to reducing diagnosis time with targets of four years or less by 2025 and a year or less by 2030.
Endometriosis is a long-term condition where cells similar to those in the lining of the womb start to grow in other places. This can be within the reproductive system, such as in the ovaries and fallopian tubes, or elsewhere in the body, such as on the bowel and bladder.
These cells react to the menstrual cycle each month and also bleed, but due to the location of the cells there is no way for the blood to leave the body. This can therefore cause inflammation, pain and the formation of scar tissue.
As symptoms of endometriosis can also be indicative of other conditions, it is commonly misdiagnosed and tests (including blood tests and ultrasound scans) are often used to rule out alternative causes.
The only way to definitively diagnose endometriosis is via a laparoscopy. This is a minimally invasive operation performed under general anaesthetic. Small incisions are made in the abdomen through which surgical tools, including a laparoscope (a tube that has a light source and a camera), are inserted.
A laparoscopy is considered quite low risk, with serious complications only estimated to occur in one out of every 1000 laparoscopies and most people can go home the same day of the surgery.
For straightforward laparoscopies, recovery is usually between a day to a week or two. If an individual has surgical treatment at the same time as their laparoscopy, this will mean it may take slightly longer to recover.
There is no cure for endometriosis, but there are a number of treatments that can help ease the symptoms. Painkillers, contraceptives and hormone medicines can all be used to try and manage endometriosis.
Surgical intervention may also be an appropriate treatment option and can include surgery to cut away patches of endometriosis tissue (which can be done during a laparoscopy) or removal of part of the organ(s) affected, such as a hysterectomy.
The NICE guidelines (which were issued in 2017 and adopted across the UK but crucially have not yet been implemented) state that endometriosis should be suspected in women presenting with one or more of the following symptoms or signs:
Endometriosis can also cause fatigue and mental health issues and, in approximately half of those with endometriosis, there are also associated difficulties in becoming pregnant.
If an individual thinks they might have endometriosis, it is recommended that they try keeping a diary to identify any patterns as this can help give GPs a better indication of symptoms. Endometriosis UK has a template pain and symptom diary and provides some specific questions to consider that may assist in giving a GP the relevant information.
The APPG survey (which received more than 10,000 responses) found that 58% of respondents visited their GP over 10 times and 53% went to A&E, with 27% attending A&E three or more times, prior to receiving a diagnosis of endometriosis. Aside from reducing the personal impact that a delayed diagnosis can have on sufferers, streamlining the diagnostic process could save the NHS time and money with reductions in GP and A&E visits.
81% of those surveyed said that endometriosis and the accompanying symptoms had impacted their mental health negatively or very negatively, further straining the NHS mental health resources.
According to Endometriosis UK, endometriosis costs the UK economy £8.2 billion a year in treatment, loss of work and healthcare costs.
Unfortunately, even when endometriosis is diagnosed, that is not the end of the problem. 72% of respondents were not given any written information about endometriosis when they were diagnosed, leaving them without the knowledge and advice they needed to make informed choices about their healthcare. Despite the growing focus on endometriosis within the UK, there is still a long way to go yet.
The clinical negligence team at Penningtons Manches Cooper specialises in women’s health issues and has experience of investigating claims on behalf of clients who have spent years with endometriosis symptoms but who have instead been misdiagnosed with other conditions such as IBS. If you have any concerns about endometriosis care that you have received, you can contact the team for an initial, no obligation discussion about your treatment.
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