Endo-mysterious

Published: 26 Mar 2024

Categories: Blog

👉 Did you know that March is Endometriosis Awareness Month?

Endometriosis UK says:

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, he thinks the disease should be called “Endo-mysterious”.

Endometriosis is very challenging to diagnose, with patients usually:

  • Having a clinical examination
  • Having Ultrasound/MRI scans
  • But mostly, in a large majority of cases, having a laparoscopy.

The average time for diagnosis is between 7 – 9 years.

Andrew says:

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, but not limited to:

  • Medication
  • Surgery (but this doesn’t come without potential risk)
  • Or complementary treatment 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 stand still with their ongoing symptoms.

When asked how can a patient 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 AvMA complaint guide or call our helpline.

In 2024 we were contacted by two clients on the helpline, whose diagnosis took just over a decade!