During this Endometriosis Awareness Month 2023 we have been following the incredible work being undertaken by newly founded charity, The Endometriosis Foundation. Their mission is to help to create a future where Endometriosis is recognised and understood, resulting in earlier diagnosis and treatment.
The Endometriosis Foundation explain that they are a patient led organisation, working alongside medical professionals. Endometriosis remains understudied, underdiagnosed and poorly treated despite the fact that it causes lifelong symptoms. They are striving to gain clarity and information around endometriosis, which affects more than one in ten women, girls and those assigned female at birth.
So, what is Endometriosis?
Endometriosis is a condition that occurs when cells – similar to those in the lining of the uterus (endometrium) - are found growing in areas in other areas of the body. The Endometriosis Foundation explain that it is most commonly found affecting the lining of the pelvis, the ovaries, and the cul-de-sac (the area between the upper vagina and the rectum), the urinary bladder, and the bowel.
Every month these cells react similarly to those in the lining of the womb which break down and leave the body by bleeding as with a period. When hormones rise and fall triggering a period, it also triggers these abnormal cells to bleed, just like the cells within the uterus.
This can lead to inflammation, irritation, the formation of scar tissue, bleeding, cysts, pelvic pain and debilitating symptoms, interfering with fertility.
Astonishingly, endometriosis is as common as diabetes, and on average takes around eight years from the onset of symptoms to diagnosis.
As the newest endometriosis charity, and during both Endometriosis Awareness Month and National Be Heard Day, they officially launched The Endometriosis Foundation at the House of Lords, Palace of Westminster this month. They have enjoyed the support of their sponsors, Parla and Holland and Barrett, who have put on events to open discussions around Endometriosis, Fertility, Menopause and Gut health.
In order to raise awareness, it is of course fundamentally important that the taboo around these topics is lifted, and the conversation is open, to help those affected by the disease and to encourage an earlier diagnosis.
This charity is providing an essential support line for those affected by the disease and are doing fantastic work in their campaign to raise awareness of Endometriosis. Their board of trustees hold a wealth of experience including Consultant Gynaecologists, Reproductive specialists, a Colorectal Surgeon and the Royal College of Obstetrics and Gynaecology, are also supporting their cause.
The charity has a fantastic hub of activity, hosting events both online and in person, as well as individuals sharing their Endometriosis journeys. This includes the support provided by Lioness Captain, Leah Williamson, who opened up about her experience with endometriosis.
Undiagnosed and left untreated endometriosis can worsen over time. It can lead to many years of unnecessary suffering and this can have a significant impact upon quality of life, family and employment. It can affect fertility and it can also damage other organs of the body.
Endometriosis is the second most common gynaecological condition in the UK, with up to 50% of those affected experiencing difficulties with conceiving. The causes are unknown and there is no current cure, but there is treatment available. The sooner it is diagnosed and treated the better. The Endometriosis Foundation are helping to raise awareness, support and understanding. We wish them the very best of luck.
How we can help
If you are concerned that you may have suffered a delay in diagnosis of endometriosis or have any queries in relation to the condition, please contact our specialist medical negligence team for further support.