Urgent improvement in care for endometriosis sufferers across the UK is needed and diagnosis times need to be cut in half, a new report by MPs has said.
An inquiry by the All-Party Parliamentary Group (APPG) on the condition has found that a diagnosis takes eight years on average - and this figure has not improved in more than a decade.
One in 10 women affected
Endometriosis affects one in 10 women in the UK between puberty and the menopause, and causes debilitating pain, heavy periods and infertility.
More than 10,000 people were surveyed as part of the APPG inquiry, along with healthcare professionals, with findings showing that 58 per cent visited their GP more than 10 times before being diagnosed.
Additionally, 43 per cent visited doctors in hospitals more than five times and 53 per cent went to A&E with symptoms before diagnosis.
A total of 90 per cent of people said they would have liked access to psychological support, but were never offered it, with 81 per cent saying the condition had impacted their mental health negatively, or very negatively.
The report also found that 35 per cent said that they had a reduced income due to endometriosis.
A call for support
In an effort to support the 1.5 million women with the chronic condition in the UK, the APPG has called on governments in the UK’s four nationas to commit to a series of support measures for sufferers.
Such support includes a commitment to reduce average diagnosis times with a target of four years or less by 2025.
By 2030, diagnosis times should have reduced further to a year or less.
The APPG has also called for governments to pledge to invest in more research on the condition to find what causes it, as well better treatment, management and diagnosis options. It also hoped that a cure for endometriosis will eventually be found.
The inquiry has also called on all four nations to include compulsory menstrual wellbeing in the school curriculum to help young people recognise the warning signs of menstrual health conditions, and when they should seek medical help.
What is endometriosis?
Endometriosis is a long term condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.
It affects one in 10 women in the UK and can affect women of any age, but it is most common in those in their 30s and 40s, according to the NHS.
Symptoms of the condition can vary, but the main signs to look out for are:
pain in your lower tummy or back (pelvic pain) - this is usually worse during your periodperiod pain that prevents you from carrying out your normal activitiespain during or after sexpain when going to the toilet during your periodfeeling sick, constipation, diarrhoea, or blood in your urine during your perioddifficulty getting pregnant
Some women may also suffer heavy periods and symptoms can sometimes lead to feelings of depression
Treating the condition
There is currently no cure for endometriosis, but treatments are available to help ease the symptoms, including:
painkillers - such as ibuprofen and paracetamolhormone medicines and contraceptives - including the combined pill, the contraceptive patch, an intrauterine system (IUS), and medicines called gonadotrophin-releasing hormone (GnRH) analoguessurgery to cut away patches of endometriosis tissuean operation to remove part or all of the organs affected by endometriosis - such as a hysterectomy
If you experience the symptoms of endometriosis and they are having an impact on your life, it is advised you speak to your GP.
The NHS recommends writing down your symptoms before visiting your doctor and completing a pain and symptoms diary created by Endometriosis UK.
Hope for a cure
While there is currently no cure for endometriosis, a team of scientists claim to have identified the “prime cause” of the condition.
Researchers, from both Warwick and Edinburgh universities, attributed the cause to a type of white blood cell called macrophages that has mutated or undergone some form of change.
The study, published in a Federation of American Societies for Experimental Biology Journal paper, aimed to determine the role of macrophages in producing pain associated with endometriosis.
Scientists ran various tests on mice for the study and found that targeting the altered white blood cells could be a novel form of treatment as it doesn't require the use of hormones.
Dr Erin Greaves, senior author of the study, explained that current conventional treatments that use hormones are "not ideal", as they target ovarian function and can trigger side effects, such as suppressing fertility.
The team found that "disease-modified" macrophages stimulate nerve cell growth and activity by releasing the growth hormone insulin-like growth factor-1 (IGF-1).
Levels of IGF-1 in pelvic cavity tissue from women with endometriosis were found to be higher than in women without the condition, with further tests revealing that blocking the cell receptor for the hormone "reverses the pain behaviour observed in mice with endometriosis".
Previous studies have already shown that macrophages have a central role in the development of endometriosis, with the most recent research finding they help nerves to grow in the lesions.