In 2015, we welcomed a rise in membership, an increase in social media engagement and as a result increased media awareness and activity.
We held our largest information day to date, which was attended by over 120 women and their partners, families and friends. The keynote speaker of the day was Heather Guidone, Surgical Program Director at the Center for Endometriosis care in Atlanta.
Heather’s tireless work with both the CEC and Endometriosis Research Center is recognised worldwide. She is a leading advocate, educator and a woman who truly empowers everyone she is in contact with. It was a privilege to welcome her to Ireland and to the EAI 2015 Information Day. Heather’s talk was one of the most well received on the day, her unique mix of personal and professional experience with endometriosis brought a fresh and unique approach to this familiar subject.
January 2015, I was invited to give a talk entitled “Despicable EndoMEtriosis” to the Donegal Clinical Society alongside Dr David Hunter (Belfast). I thank Dr Matt McKernan (Chairman of the Donegal Clinical Society) for this opportunity. I believe that the discussions that followed both talks stimulated some deeper thinking and awareness of endometriosis. I urged all doctors present to consider endometriosis in young women presenting with severe pain that was interrupting their lives and to refer them where appropriate. I also gave information on the EAI and the valuable work that we do in educating and empowering women.
Endometriosis Awareness Month in March is always a busy month, and our information day this year kept up on our toes. We welcomed Heather Guidone (CEC, Atlanta), Dr John Kennedy (SIMS Dublin), Ms Aoibhinn McGreal (Pelvic Physiotherapist), Ms Shelagh Wright (Pain Management), Ms Margaret Dunne (Psychosexual Counsellor) and Mr Mo’iad Alazzam (UPMB Beacon) to give talks to our attendees. We also welcomed Zareen Ahmed from Gift Wellness to talk about her company and our own member Aisling Carroll to talk about her experience with endometriosis and how becoming a member has benefitted her.
Our day was supplemented by exhibitors and practitioners to bring balance to the day. If you did not manage to attend, the videos are available on www.endometriosis.ie/info2015
One of the strongest awareness pieces in March came from our member Noelle Carew who bravely put her story into print for the Irish Independent. Noelle’s story of her journey through surgeries and fertility treatments reached women worldwide. We received messages from many women after this article and were able to provide information and support. Her article is online at http://www.independent.ie/life/health-wellbeing/health-features/endometriosis-id-be-vomiting-and-passing-out-with-the-pain-but-doctors-said-i-was-just-attention-seeking-31034089.html
This was followed by a piece by Patricia Scanlan who talks about endometriosis in her new book, she praised the work of the Endometriosis Association of Ireland in her piece. Following the Information day, it was on to further awareness with 2 radio interviews – Spin Talk and 92.5 Phoenix FM Dublin. I spoke with the Spin Talk presenters live on air and gave the facts and figures for endometriosis in Ireland. They then took calls from women who were living with endometriosis. It was a very popular piece and we received positive feedback. In April, I travelled to Dublin to the 92.5 Phoenix FM studios for the Access All Areas programme. I was met by the presenters and researchers Conor and Stephen who were well read up on endometriosis. Their main disbeliefs was the lack of public awareness and the delay to diagnosis. We went live on air and discussed the topic, with our member Noelle Carew joining by phone to the studio. This interview was also distributed online bringing us further positive feedback and members for our online support group. September 2015, The Guardian (UK) newspaper ran an excellent series of articles on endometriosis. This brought about a flurry of activity online with many publications quoting parts of the series.
This series was a great example of where good research into a topic paid off. The Guardian worked with patient advocates, charities and individuals to allow them to tell their stories. It was an excellent opportunity for the EAI to quote and share these articles and allowed us to bring more women into our online support group.
In October the awareness continued with Shawna from Sex Siopa ran an interview piece endometriosis with another member Jeanne Sutton, her blog is well written and helped us reach out to a wider audience. November was back to the airwaves with our member Lily speaking to Sean O’Rourke on RTE Radio 1 about endometriosis as part of her fertility journey. The interview focused on the impact of endometriosis on fertility and Lily’s decision to use assisted reproductive techniques to enable her to conceive and carry her child. It was a moving piece as the journey was not easy, Lily now has her child and helps to raise awareness of endometriosis, the use of donors in fertility treatments, and single women choosing to conceive.
With all the activities the EAI ran in 2015 from support meetings to interviews to the information day, fundraising is an essential component of our year. We were very fortunate that we have dedicated members who renew their membership annually and those who make regular donations.
The VHI Women’s Mini Marathon is an important fundraiser for the EAI but unfortunately this year we had only one member take part and fundraise on our behalf. Our text number was also a convenient way for women to make a small donation and to share with friends and family. See our poster at the back of this report for more information.
2015 ended on a positive, we reflected on all the awareness, education and support we provided during the year and used this to plan for 2016 and beyond. Endometriosis still remains a little-known condition, shrouded in taboo, secrecy and shame. In Ireland, we estimate up to 155,000 women are living with endometriosis. The EAI has less than 1% of this figure as members. When we reach women through media coverage or via our social media they are delighted to find support and accurate information.
The Endometriosis Association of Ireland is approaching it’s 30th year in existence. It would be nice to build the membership to a level where the EAI could act on the same level as some of the bigger health charities. We know that the instance of endometriosis is similar to asthma and diabetes, yet very few people have heard of it, let alone describe its impact. With your help we can reach more women, educate more young girls and help those suffering in silence.
On behalf of the board of the Endometriosis Association of Ireland, I thank you all personally for your support. This is YOUR association, without your support the charity would not exist. We look forward to the challenges of 2016 and beyond into our 30th year.