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Providing a new care pathway for people with thoracic endometriosis

Blog 10 January 2022

Martin Hirsch discusses the debilitating gynaecological condition thoracic endometriosis, and why the British Society for Gynaecological Endoscopy (BSGE) and RCOG have been working to develop a new care pathway for people with the condition.

Margin Hirsch

As a consultant gynaecologist and endometriosis specialist, I know how hard it has been for everyone with thoracic endometriosis (TE) to get a diagnosis. The struggle and hardship many have had to go through to fight to be heard is quite unbelievable.

Once those with the condition received a diagnosis, they then had to face the fact that there was no dedicated centre of excellence for treatment, which after suffering with pain for so long was incredibly challenging and upsetting for them.

In an open letter to BSGE, over 20 people expressed their dismay at the lack of support for people with TE and urged us to act to address the gap in care. Their message was loud and clear, they want improved, organised, and structured care.

This is something the BSGE and RCOG have listened to, which I’ll tell you more about shortly.

What is thoracic endometriosis (TE)?

Thoracic endometriosis is a rare form of endometriosis where endometrial-like tissue is found in the chest cavity more commonly on the diaphragm, but it can be found on the lungs.

The thorax or chest represents the most common site for endometriosis outside the pelvis with 85% of cases in the right hemi-thorax and around 80% of these cases associated with pelvic endometriosis.

The true prevalence of TE remains unknown and while it is thought to be rare, this could represent an underdiagnosed disease which is due to, in part, a lack of awareness of the condition among clinicians.

A lack of widespread experience of managing TE amongst endometriosis specialists was highlighted in a recent UK survey (PDF).

Symptoms can range from trouble breathing, chest pains, right shoulder pain, lung nodules, lung collapse, and coughing up blood during menstruation.

These varied symptoms can lead to uncertainties in appropriate referral and subsequent delays in diagnosis along with access to specialist care.

What help is available to people with thoracic endometriosis?

The diagnosis and management of patients with TE is challenged by a lack of research existing beyond case series.

This has prevented the development of national or international guidelines to support clinical decision making and standardised care.

The lack of national guidance was highlighted in the report by the All Party Parliamentary Group on endometriosis (PDF) where the executive statement urged The National Institute for Health and Care Excellence (NICE) to ensure that care pathways for those with endometriosis outside the pelvic cavity are developed and implemented, starting with TE.

I felt passionately that our national remit of endometriosis care at the BSGE should not stop at the pelvic brim.

Establishing a national pathway for the management of thoracic endometriosis

In the UK, NHS England commissions highly specialised services for selected centres managing rare or complex diseases to a small number of patients. There are currently 76 such services commissioned in the UK with examples including choriocarcinoma service (two national centres) and fetal spina bifida service (one national centre) allied to our speciality.

The BSGE specialist endometriosis centres lead the world with an example of nationally regulated safe management of rectovaginal endometriosis. However, the remit for these centres does not currently include the management of extra-pelvic endometriosis.

The call from people with TE is clear: they want improved, organised, and structured care.

With amazing support from the BSGE council and the RCOG we have created a motivated working party which aims to address the concerns highlighted in the open letter.

This will allow for a more centralised approach which will enable more accurate and timely diagnosis, and the potential for improved treatment outcomes.

Concentrating care in this way can also facilitate research into the safety and effectiveness of treatments and longer-term prognosis, in turn improving the lives of people suffering with TE.

This will improve the management of this poorly understood disease ensuring standardised, equitable, multidisciplinary, and cost effective care can be delivered to patients with TE

For more information on endometriosis please visit the Endometriosis UK website.