Find a specialist
Treatment for endometriosis is best carried out by a gynaecologist with a specialist interest in endometriosis. This is because not all gynaecologists are familiar with endometriosis. Furthermore, not all surgeons are trained specifically in diagnosing and treating the condition.
Finding expert help early on is an important step to ensuring that you get the care and support you need, preventing delayed or misdiagnosis, poor treatment, and inadequate care.
What is an endometriosis specialist?
An endometriosis specialist is someone whose primary focus is of managing endometriosis, someone who understands the condition and the ways in which to treat it. A specialist is prepared to work with you to understand your needs and decide together on a treatment plan which may work best for you.
A good specialist would not hesitate to refer you to another professional who may be more advanced in treating endometriosis to ensure you get the greatest level of care.
Why it's important to seek specialist help
Endometriosis can be seen from clear lesions to pink, red and sometimes dark brown and black patches. These lesions may not always be seen on the surface where instead they can be buried deep beneath various tissues or organs (this is known as deep infiltrating endometriosis).
Therefore, this type of operation requires a high level of skills and expertise as it can be difficult to diagnose by a non-specialist.
If you have severe endometriosis, then you should be referred to tertiary care where you will be treated in an endometriosis centre under the care of a multidisciplinary team.
Aamilah opens up about her difficulties getting diagnosed and how despite undergoing laparoscopic surgery, twice her endometriosis was missed, leading to her diagnosis of severe endometriosis
When deciding on which specialist is right for you, there are several factors to consider.
To ensure you’re making the right decision, you can:
Keep a record of your symptoms using a symptom diary. You can download our symptom diary here.
Take time to research a specialist or centre of interest to you.
Check to see whether your health insurance will cover the cost of the care you require or if your chosen centre accepts NHS patients.
Reach out to community support groups for feedback and personal experiences.
Understand that endometriosis specialists are limited and therefore they may not always be local. This should not prevent you from accessing this care.
Dedicated nurse specialist's
If you become unwell between appointments, most endometriosis centres provide an advice line they can call for help. Advice lines are usually run by endometriosis nurse specialists who are available to provide support in time of need.
Get in touch with your chosen centre and find out the name and contact details of your specialist teams dedicated nurses.
Questions to ask your specialist
See below a handful of questions you may find helpful to ask your specialist. If you feel these questions might be useful, be sure to print this page and take it along with you to your appointment.
See below useful resources:
Across the UK, there are several accredited endometriosis centres provided by The British Society for Gynaecological Endoscopy (BSGE). These centres offer complex surgery for those with severe (later stages) endometriosis; defined as deep infiltrating endometriosis or recto-vaginal endometriosis.
You can access the BSGE website here and find your nearest centre.
The National Institute for Health and Care Excellence (NICE) provides guidelines covering the diagnosis and management of endometriosis. These guidelines aim to raise awareness of the symptoms of endometriosis and provide clear advice for medical professionals on what action to take when people with symptoms first present in healthcare settings. The NICE guidelines also provides advice on the range of treatments available.
You can access the NICE guidelines on endometriosis here.
Currently, there are no designated specialist centres or clinics in the UK available to treat thoracic endometriosis and there is no national guidance on the investigation and management of people presenting with thoracic endometriosis symptoms.
We are hopeful for this to change in the very near future.