Endometriosis inquiry shows little improvement in a decade

A UK All Party Parliamentary Group on Endometriosis inquiry into endometriosis shows the devastating impact endometriosis can have on all aspects of a person’s life, and urges ministers to take bold action to ensure those with endometriosis have access to the right care at the right time.

The APPG inquiry surveyed over 10,000 people with endometriosis, interviewed healthcare practitioners, as well as those with the condition about their experiences.

It found that the average diagnosis times for endometriosis has not improved in over a decade: it still takes 8 years on average to get a diagnosis in the United Kingdom.

Prior to getting a diagnosis and having presented with symptoms:

58% visited their GP more than 10 times, and 41% over 15 times
43% visited doctors in a hospital over 5 times, and 21% 10 or more times
53% went to A&E, with 27% visiting A&E three or more times.

Once diagnosed, only 19% knew whether they were seen in an endometriosis specialist centre, and 72% were provided with no information about the disease and its management options and thus were not in possession of knowledge or advice to make informed decisions about their care. Ninety percent would have liked access to psychological support, but were not offered this.

Nadine Dorries, MP

At the launch of the report [1], the minister for mental health, suicide prevention, and patient safety, Nadine Dorries MP, said:

All too often women are told their pain is imagined and something they are going to just have to put up with.

Ms Dorries went on to say that “women don’t talk enough”.

She is right. We need to share what endometriosis is every single day: unless everyone understands the impact we won’t improve status quo.

A time for action

Following the launch of the inquiry report, Endometriosis APPG chair, Sir David Amess MP, committed to not resting until we see change.

Sir David continued:

It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously – or downplayed as linked to the menstrual cycle and periods.

All UK Governments must take the recommendations in this report seriously and act to ensure that everyone with endometriosis has a prompt diagnosis, along with access to the physical and mental health support they need to manage their condition.

Targets for improving the management of endometriosis

The APPG inquiry report calls for targets to be set to drive down diagnosis time, from the current average of 8 years, to a year or less by 2030, and that all those with endometriosis are seen by healthcare practitioners with specialist skills in diagnosing and managing endometriosis.

A key step to making these happen is implementing the NICE Guideline on Endometriosis Treatment and Management [2].

Emma Cox, chief executive of Endometriosis UK, said:

Emma Cox
Chief Executive, Endometriosis UK

The average diagnosis time for endometriosis remains at 8 years – shockingly, it’s not changed in a decade. Action must be taken to drive this down and all governments in the UK need to make a commitment to ensure this happens.

The post code lottery of access to healthcare practitioners, who specialise in endometriosis, needs to end. Implementing effective processes within the NHS will help healthcare practitioners support diagnosis and get those with endometriosis symptoms to the right place, in hospitals with the right expertise, at the right time.

Action is needed now, to ensure the next generation with endometriosis are not robbed of the future they deserve.