Endometriosis – The 1 in 10

At the end of June, we hosted a panel-led seminar, ‘Endometriosis – The 1 in 10’ at The Royal Society of Medicine in London. 70 guests joined us, with the opportunity to hear about our latest research we are funding into the condition, how to best access care that is available, as well as dietary advice that could help with symptoms.

Endometriosis is staggeringly common and there is still no cure. It affects up to 1 in 10 women – equating to 176 million worldwide and affecting a similar number of women as diabetes or rheumatoid arthritis. Yet whilst 80% of the population are familiar with these medical conditions, just 20% of the population know about endometriosis. It can take on average of 7.5 years to diagnose, cause crippling pain and fertility issues.

With only 2.48% of publicly funded research devoted to women’s reproductive health, Wellbeing of Women’s role is vital and we were very pleased to be able to share the exciting research we are currently funding into endometriosis with our guests at the seminar.

Professor Andrew Horne, Professor of Gynaecology and Reproductive Sciences & leading endometriosis specialist, University of Edinburgh
Professor Andrew Horne opened the evening by discussing the endometriosis research he is carrying out with funding from Wellbeing of Women. He captivated the audience with the exciting developments he and his team are working on to administer low levels of anti-cancer drugs to treat endometriosis in order to prevent it from spreading and reducing painful symptoms, as well as ways in which to best administer the drugs to ensure the most effective and safest outcome for women.

Professor Horne also notified attendees about other endometriosis research taking place around the world and the growing view from within the medical community that endometriosis requires management and treatment not just by a gynaecologist, but by a range of specialists. These include: colorectal surgeons, urologists, pain psychologists, nutritionists and increasingly, acupuncture therapists to ensure the best outcome for the individual.

Cathy Dean, Endometriosis Clinical Nurse Specialist at the Portland Hospital
Cathy’s role is dedicated to offering help and advice to endometriosis patients. She encouraged guests as a first step, to find out what resources were available for them in their area. When they had secured a referral to a specialist,Cathy provided a practical guide to attendees at the seminar:
o Research the specialist beforehand,  ensure they are a member of the British Society of Gynaecological Endoscopy (BSGE) or BIARGS
o Find out if the specialist keeps a record of surgical cases along with patient outcome data and complication rates
o Is there a patient satisfaction rate – have other women recommended them?
o Following an appointment with a specialist, always request written information or a link to a website so you have key information to hand
o Share this information with friends, family and employers to help them understand what you are going through
o Persevere with new treatments for at least 3-6months to allow any initial side-effects to settle and see whether there is a benefit
o Score your symptoms from 1-10 before the start of a new treatment, then again after three or six months to compare the severity of your symptoms

Rebecca Pilkington, registered nutritional therapist
Rebecca spoke about the importance of getting your “hormones in harmony” for an oestrogen-dependant condition such as endometriosis, by incorporating the right kind of foods into your diet.

Top tips include:
o A high-fibre diet
o Gradually increase vegetable intake to 8 a day
o Keep fruit intake to 1-2 pieces per day (to limit intake of fructose)
o Vitamin B6 is important and good sources include: pistachios, pinto beans, avocados, sunflower and sesame seeds
o Probiotics are  beneficial for gut health, as are fermented foods such as sauerkraut and kimchi
o Introduce ground flaxseed into the diet as an easy source of nutrients and Omega 3

Rebecca highly recommended visiting a nutritional practitioner for an initial consultation, especially if endometriosis symptoms are bad, to explore what dietary changes would work best for you.

Your feedback about the seminar:
“It is very reassuring to know that Wellbeing of Women  exists and champions women’s health issues. I look forward to attending more of your events”.
“I just wanted to say thank you for such a fantastic evening! It was so interesting and I’m really happy that Professor Horne has the opportunity to conduct his research. He’s so knowledgeable, yet explains it in such a “non-medical” manner. I could’ve listened to him for hours!!”

Nicola’s story:
Nicola shared her incredibly moving story of her own experience living with endometriosis. From the age of 12, for several days each month, Nicola endured agonising cramps, a high fever, vomiting and blackouts. Countless visits to various doctors resulted in little more than being told she simply had “a very low pain threshold” and that having children could help her symptoms (she was 14 years old when her doctor suggested this.). She was finally diagnosed six years later, yet no treatments successfully eased her symptoms. Only after the birth of her second child did her symptoms markedly improved. Sadly, Nicola’s story continues as she is now faced with the likely fact that her daughter is also a sufferer. Nicola stressed the importance of supporting medical research, such as that being carried out by Wellbeing of Women:

“I’d happily support research into this disease.  It’s so encouraging to hear of the work being done – there is such a need for it and it’s great that we’re all here to support it and learn about it. But we know that progress can only occur with time, commitment and money.”

Nicola’s story really resonated with the audience and generated a huge amount of questions to her and the rest of the panel, with many women sharing their own experiences and personal stories.   Wellbeing of Women would like to thank everyone who came along to an informative and interesting evening, with guests leaving feeling empowered and having made new friends. There is much still to be done to fully understand endometriosis, but we hope that everyone left feeling empowered and hopeful and having made new friends and connections.

Thank you
Our enormous thanks to our fantastic panel, Professor Andrew Horne, Cathy Dean, Rebecca Pilkington and Nicola Callaghan for their time and sharing their advice. Thank  you to Rebecca Pilkington and Fab Little Bag for helping to provide goody bags for guests.

Get involved
This vital research that we fund can only take place with the support we get from you. If you would like to be involved to help us to find cures, new treatments and develop quick and simple diagnostic tests for issues such as endometriosis, you can set up a monthly donation or a one-off donation by clicking here. Alternatively, if you would like to get involved and fundraise for us, please contact community@wellbeingofwomen.org.uk – we would love to hear from you!