March 2024
What is your current role?
Claudia: I'm a gynaecology advanced nurse practitioner and endometriosis nurse specialist.
Hope: I'm a gynaecology and endometriosis clinical nurse specialist.
What do you love about your roles?
Claudia: I love being able to help people with endometriosis access the care they need, feel supported, and make sure their priorities are understood and respected. The statistics for people with endometriosis getting the right diagnosis and care are awful.
On average, people live with symptoms for 8 years before getting a diagnosis, often interacting with multiple healthcare professionals who don’t understand endometriosis before they get the right care. Patients have usually had such a challenging journey with years of debilitating symptoms by the time they reach our service. So, it is extremely rewarding to be in the position to really help improve their lives.
Hope: I love that the role allows me to provide a space where patients can feel heard, guided and supported through some of their most challenging times as they navigate their endometriosis. In many cases patients have had a long and difficult journey to getting a diagnosis, so it is extremely rewarding to be able to provide empathetic and individualised care that can make a difference.
What is your proudest moment?
Claudia: I'm particularly proud of my involvement in work to improve the teaching and training of endometriosis nurses nationally. As part of this work I helped to set standards and expectations for the role, introduce a national mentorship scheme, and personally mentored several endometriosis nurses.
Increasing the profile of the specialist nurse role, and providing strong support and training for all endometriosis nurses, improves access to high quality support and specialist care for endometriosis patients. We're so fortunate to be able to make a positive difference in our patients' lives, I'm proud to be able to both deliver that care and see directly what an impact it has, and to help and support other nurses to do the same.
Hope: I'm very proud of the endometriosis awareness work I've been involved in both through local and national teaching and by working with the fantastic charity Endometriosis UK.
I'm also proud to have been involved in national research that will hopefully make a positive change for the provision of endometriosis care. Day to day, it is the small improvements in patients' quality of life I see at follow-up appointments that make me really proud of the work we do.
How do you support people with endometriosis?
We work with the multidisciplinary team in the complex endometriosis service to help manage patients' care. We can assess, start and adjust medical treatments, arrange any necessary investigations, and refer to the multidisciplinary team and wider supportive therapies.
We're a point of contact for patients and can help them navigate the system, process information they're given on their journey, and make informed decisions about their care.
We also do a lot of teaching and education on endometriosis locally and nationally to try and raise awareness and improve access to the right care as early as possible.
We also work closely with the charity Endometriosis UK to support the excellent work they do.
Why is important to recognise Endometriosis Awareness Month?
Endometriosis is the second most common gynaecological condition in the UK. It affects 1.5 million women and people assigned female at birth, a similar number to those affected by diabetes.
Despite the known prevalence, time to diagnosis remains at 8 years and this has not reduced in a decade. In fact, this time has increased as a result of the COVID-19 pandemic.
Diagnosing endometriosis is extremely challenging as there are no blood tests that can detect it, and it doesn’t always show on ultrasound scans. Symptoms and extent of endometriosis can vary significantly from minimal or even no symptoms, to debilitating symptoms that impact every aspect of daily life. Improving awareness is essential.
If you're experiencing pain that is impacting your quality of life then you should seek advice, investigation, treatment, and support.
Find out more about endometriosis on the NHS website, and visit the Endometriosis UK website for information and support.
Thank you to the children and young people who have so brilliantly illustrated our blog pages.