More needs to be done to support women with Endometriosis
The APPG (all-party parliamentary group) on endometriosis was launched in 2018 and to raise awareness and investigate how those who suffer from the condition can receive the support they need.
They conducted an inquiry which surveyed over 10,000 people with endometriosis It was found that, despite over 58% visiting their GP 10 or more times with symptoms, 53% visiting A&E with symptoms, and 21% seeing doctors in hospital 10 or more times with symptoms. 95% said that the symptoms of endometriosis had impacted their wellbeing negatively or very negatively, 90% would have liked access to psychological support but were not offered this and 89% felt isolated due to their endometriosis. The report made recommendations for how care and support need to be improved, including:
- A commitment to drive down diagnosis time.
The APPG is seeking a commitment to reduce average diagnosis times with targets of 4 years or less by 2025, and a year or less by 2030.
- Ensure access to the appropriate care
The NICE Guideline on Endometriosis Treatment and Management was issued in 2017 and has been adopted across the UK, but not implemented. As a first step, a gap analysis of endometriosis services should be undertaken. Recognition from UK Governments that more needs to be done to ensure inclusivity and equality of access to endometriosis services.
- Raising awareness
The APPG would like to see Menstrual Wellbeing included as compulsory in the school curriculums across the UK. It is also essential for healthcare practitioners to recognise the symptoms of endometriosis, to be able to support diagnosis and ongoing treatment and care. The APPG are calling for a review to ensure practitioners gain the knowledge, training and experience they need to recognise the symptoms of endometriosis.
- Investment in research
There’s been so little investment in research into endometriosis that we don’t even know what causes it, and without knowing the cause, a cure cannot be found. In addition to this there are data gaps in research for assessing health outcomes for those from black, Asian and minority ethnic backgrounds. The APPG is committed to investigating and ending the ethnicity gaps in research.
To read the full list of recommendations, see page 68-71 of the inquiry report.
How can I support someone with endometriosis?
Be understanding
Although it may seem a small gesture, showing some empathy and understanding towards your loved one will reassure them and let them know that you are taking their pain seriously. It is frustrating to want to participate in an activity, such as a day out with friends or family, but being physically unable to do so. You can display your support by simply not getting angry or making your loved one feel guilty for missing something you had planned – believe me, they would definitely rather be out doing something nice with you than be curled up at home with a hot water bottle.
Listen
Let your loved one know that you are there to listen. Endometriosis is often thought of as an uncomfortable topic, but there is definitely therapeutic benefit in being able to vent about feelings and frustrations – even if only briefly.
Be accommodating
Pain is unpredictable, so when making plans with someone with endometriosis, try to take their pain into consideration. Why not arrange a movie night, or an activity which is more accessible to someone if their pain suddenly flares up?
Learn
Showing an interest in learning about endometriosis is helpful in awareness and understanding of the condition. Why not ask your friend or family member if there are any resources they would recommend, so you can find out more? They would probably be touched that you cared enough to put the time and effort in. Also, asking for resources means that you would likely be directed to reliable material rather than misinformation. Although it might be difficult to put yourself in the shoes of someone who experiences chronic pain if you have never felt it yourself, educating yourself can help to give you some perspective of the condition and be more empathic.
If you or someone you know needs support, Endometriosis UK run a confidential endometriosis support line on 0808 808 2227.
Words kindly written by Abie, our Manchester Practitioner
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