26th March 2024
Did you know that March is Endometriosis Awareness Month? Endometriosis UK explains the key elements of endometriosis as follows:
Endometriosis is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
In the UK, around 1.5 million women and those assigned female at birth are currently living with the condition, regardless of race or ethnicity. Endometriosis can affect you from puberty to menopause, although the impact may be felt for life.
To shed more light on this condition, at our 34th Annual Clinical Negligence Conference in Leeds, we were joined by Andy Pickersgill, Consultant Obstetrician & Gynaecologist at Wythenshawe Hospital, Manchester University NHS Foundation Trust, to discuss endometriosis further.
To Andrew: “Endometriosis is the toughest thing to operate on in terms of gynaecology, due to the challenging nature of the surgery.” It is so challenging, in fact, he thinks the disease should be called “Endo-mysterious.”
Endometriosis is very challenging to diagnose, with patients usually having a clinical examination or ultrasound/MRI scans, but mostly, in a large majority of cases, needing a laparoscopy. The average time for diagnosis is 7–9 years.
Andrew continues: “In a lot of cases, women who present symptoms are regularly told the pain they experience is all in their head. It shouldn’t be that way, but it is. My suggestion to doctors is to ensure they take a patient’s full history and listen to them.”
Once a patient has seen a gynaecologist, there are several multifaceted treatment options they can choose from, including medication, surgery (but this doesn’t come without potential risk), or complementary treatments such as acupuncture, physiotherapy, or aromatherapy.
As for the future of endometriosis, Andrew said a huge pitfall in practice is that there isn’t a endometriosis database set up that properly captures all the data. He hopes in the future, a national portal is set up that encourages doctors to point patients to a gynaecologist should a patient reach a point where they are coming to a standstill with their ongoing symptoms.
When asked how a patient can best advocate for themselves during a doctor’s appointment, Andrew says: “Social media and online community groups are great spaces for women to come together. By talking to your counterparts, you feel less alone.” Additionally, he said: “Ensure you go to your doctor with your full story, and make sure they listen, and question them.”
Use this helpful guide from Endometriosis UK for assistance in getting a diagnosis. Find support groups here.
It’s important to remember that if you think you are not being heard, you have the right to raise your concerns directly to your healthcare provider. For more information about how to make a complaint about NHS or private healthcare, take a look at our complaints guide or call our helpline.
In 2024, we were contacted by two clients on the helpline whose diagnosis took just over a decade!