Providing you with up-to-date factual information about endometriosis and possible treatments.
Welcome to the EXPPECT Endometriosis Service
The EXPPECT Endometriosis Service consists of a multidisciplinary team that aims to provide state-of-the-art, high quality, evidence based and patient-centred treatment for the management of all grades of endometriosis.
The British Society of Gynaecological Endoscopy (BSGE) has recently set up accredited centres for the laparoscopic treatment of advanced endometriosis to enable high standards of care to be delivered to women with endometriosis. Edinburgh achieved BSGE accreditation in January 2015.
This website has been designed by Christopher Graham with the support of EXPPECT Endometriosis clinic staff at NHS Lothian and the University of Edinburgh.
Coronavirus (COVID-19) and endometriosis
Endometriosis UK has produced guidance on endometriosis and COVID-19.
The situation with coronavirus (COVID-19) is escalating and changing on a daily basis. It is a worrying time and a cause of anxiety and concern. However, it is not the case that those with endometriosis are considered at increased risk. If you have endometriosis, similar to the general population, your best defence against the virus is minimising social contact and regular hand washing.
There is more information available on their website.
EXPPECT in the media
Professor Andrew Horne and colleagues from the University of Oxford contributed to an important article in The Guardian: A common treatment for endometriosis could actually be making things worse - repeat surgeries for endometriosis could be exacerbating pain symptoms.
Until recently, doctors treated all cases of endometriosis with the same approach, usually involving surgery. But evidence now shows that the best treatment depends greatly on which of the three kinds of disease [superficial peritoneal endometriosis, cystic ovarian endometriosis (or endometrioma) and deep endometriosis] a patient has, and the type of endometrial-like tissue that is found. [...] We find that patients don’t always get better with surgery, and those who do often feel better for a very short time. [...]
The ovarian strand of the disease involves clumps of errant tissue growing in the ovaries, which commonly form cysts that can burst and cause severe pain and inflammation. Patients with this strand are likely to experience significant relief from the removal of these cysts, so surgery is often necessary.
However, 80% of endometriosis sufferers have superficial peritoneal disease and, in these patients, it is less likely that the errant tissue itself is causing the majority of a patient’s pain and symptoms. Instead, the way that the diseased tissue interacts with nerves in the pelvis is usually the main culprit. In these cases, surgery could actually be making things worse by exacerbating nerve pain.
Professor Andrew Horne contributed to a piece in Cosmopolitan: Why does it take so long to get a diagnosis for endometriosis?
Women's health conditions generally haven't had the same attention as typically male conditions, in terms of both clinical investment and research. This is largely because the funding was historically led by men. And because of a lack of understanding from men of how common these conditions are, and what impact they have on a patient's quality of life. Chronic pain conditions also haven’t had investment because pain isn't visible. [...] So, the coupling of women's health and chronic pain means endometriosis hasn’t had the attention it deserves."
In September 2020, EXPPECT-led pelvic pain research, published in The Lancet, received widespread media coverage including in The Telegraph and STV News:
The Telegraph: Common drug for chronic pelvic pain no better than placebo, study finds [subscription / free trial]
We have been prescribing this drug [gabapentin] for many years with little evidence of its effectiveness. As a result of our study, we can confidently conclude that gabapentin is not effective for chronic pelvic pain in women where no cause has been identified. More research is needed to explore if other therapies can help instead.
Research Article: Gabapentin for chronic pelvic pain in women (GaPP2): a multicentre, randomised, double-blind, placebo-controlled trial. doi: 10.1016/S0140-6736(20)31693-7
Professor Horne has worked with Chantelle Pattemore and Top Santé Magazine to publish an article entitled '8 things to know about endometriosis' for Endometriosis Awareness Month (March):
In early October 2019, the BBC shared this video of endometriosis and its impact, which features EXPPECT's Professor Horne.
Bex, Sadie and Rebekah share their stories alongside Professor Horne, who calls for more research funding and awareness-raising, highlighting the 'gender pain gap':
In this The Guardian article, Professor Horne highlighted that while women with endometriosis may take longer to become pregnant than those without the condition, or be less likely to conceive, this does not mean that infertility is a foregone conclusion:
Endometriosis can be associated with difficulties becoming pregnant, but even women with severe endometriosis can still have a baby naturally.
Endometriosis: The Experts' Guide
Professor Andrew Horne and Carol Pearson have co-authored a practical patient guide to endometriosis
Launched on 5th March 2018, "Endometriosis: The Experts’ Guide to Treat, Manage and Live Well with Your Symptoms" written by Professor Andrew Horne and Carol Pearson (Endometriosis UK Patient Leader) is available from Amazon.
Moneys raised by book sales will go to Endometriosis UK.
Support for EXPPECT
Support from Endo Warriors
EXPPECT were delighted to receive a generous donation for our research into improving the care of women with endometriosis from the Endo Warriors.
Candice and Claire presented the cheque to Andrew and Philippa, on behalf of Endo Warriors, on Monday 29 July.
Thank you to Endo Warriors and everyone who took part in the fundraising!
£100,000 for pain management research from The Charles Wolfson Charitable Trust
The Charles Wolfson Charitable Trust has donated £100,000 to EXPPECT to support our research into pain management for women with endometriosis.
The Charles Wolfson Charitable Trust is a charity awarding grants to support the fields of medicine, education and welfare.
Professor Andrew Horne explains how this donation will support EXPPECT's vital research into endometriosis in an Edinburgh Friends magazine article:
The £100,000 from The Charles Wolfson Charitable Trust will cover the cost of a research scientist who will work with us to identify potential drug targets that could lead to a better way of managing pain and related symptoms
Funding for a prescribing physiotherapist
The Edinburgh and Lothians Health Foundation has approved funding to pilot a prescribing physiotherapist at EXPPECT.
The Edinburgh and Lothians Health Foundation aims to improve the physical and mental health of the people of Scotland, in particular in Edinburgh and the Lothians. It provides funding and makes grants to support projects and initiatives not normally funded by the health service.
EXPPECT in the Scottish Parliament
In early December 2018, Professor Horne and Emma Cox (CEO of Endometriosis UK) met with Sinead Griffin, from the office of Monica Lennon MSP, to discuss ways to ensure better endometriosis care and research in the context of the Women's Health Cross-Party Group (CPG) of the Scottish Government.
We would like to acknowledge and thank Andrea, a local lady with endometriosis, whose fundraising has made this website a reality.
Andrea had persisted with medical management for 2 years before discussing the option of a hysterectomy with her medical team. This has been the right decision for her and she notices a huge difference in her pain levels.
“I was so grateful for the superb care and attention that I wanted to ‘ give something back’. With the help of my friends I organised a champagne afternoon tea in aid of EXPPECT Edinburgh and Endometriosis UK.