Welcome to Endometriosis South Coast

We are an inclusive charity supporting people who are going through the diagnosis stages of Endometriosis and Adenomyosis or have been diagnosed with the conditions.

Fundraising

Get Involved

Free Resources

Online Support

Research the Condition

About Endometriosis South Coast

Our Endometriosis South Coast – charity number 1186203 – is an inclusive charity set up to support people who haven’t started their diagnosis journey, are going through the diagnosis stages, or have been diagnosed with Endometriosis and/or Adenomyosis. We are also here for friends, family, and cheerleaders of the people that have to jump through hoops to get started on the diagnosis pathway.

Our mission

We aim to create a safe space for all people with the condition regardless of race, gender, or religion. This disease does not discriminate and neither do the people who run this charity.

We intend to spread awareness through a variety of campaigns, utilising our following on social media, and in-person community groups and events. We also actively fundraise to enable us to help as many people as possible with support and resources.

Support Groups

We hold in-person support groups usually around the 1st Saturday of every month. We often invite a guest speaker to talk about different topics, for example; fertility massage, essential oils and mental health services in the area. Find out when the next one is on our Events page.

Online Support

We have a support group on Facebook with lot of members. You are welcome to ask questions, exchange advice, and chat with people in a similar situation. Find us here.

Social Media

We are available on most social media sites, with new content being updated all the time. So, if you haven’t already, come join us! The links are at the top of the page.

We are also members of a few platforms that donate money to us through shopping online. Visit our Support Us page

1 in 10 people are diagnosed with Endometriosis.

An estimated 190 million people have Endometriosis.

We expect that, as awareness for the condition increases, so will prevalence rates.

This condition is an under funded and under treated area of health, and that needs to change.

Some of Our Affiliated Charities and Organisations

Purple and Grey Fundraising regulator logo and badge
Hey girls red and black logo with the writing official donation partner.

Team members

Jodie Hughes AfN, Bsc, MSc
Founder & Research advisor
Endometriosis care research PhD student at Roehampton University
Headshot image of Jodie Hughes

Jodie is the Founder and Research Consultant at Endometriosis South Coast. She has also started her PhD at University of Roehampton London, that is researching the differences in care of Endometriosis patients.

Jodie was diagnosed with Endometriosis at the age of 29 after struggling with heavy, painful periods since the age of 11. Whilst she was so young, she was told by her doctors and family that it was just the way that women in the family suffered and it was just something to get on with and put on the contraceptive pill.

It wasn’t until Jodie had her son (after multiple miscarriages) and her symptoms returned worse than they were before she was put on the pill that she sought the help of a new doctor and the word Endometriosis was mentioned, that any of the symptoms made sense. The fatigue was crippling (later diagnosed with M.E/CFS too) and the bleeding and pain were unbelievable. Many made her feel like she was absolutely crazy. The new doctor made a referral to the BSGE accredited centre at QA Hospital in Portsmouth where she met Dr Guyer who really listened to what she had to say for the very first time. He agreed that from the symptoms that were presenting that laparoscopic surgery was needed to confirm a diagnosis. During this surgery Jodie was diagnosed with Superficial Endometriosis (symptoms do not correlate with diagnostic wording). Unfortunately, the operation only had Jodie pain free for 2 months, so the Prostap injection was used to put Jodie into the medical menopause which worked so fantastically that she made the decision to have a hysterectomy at the age of 32. “This was possibly one of the best decisions I had ever made, I still has a monthly “cycle” due to becoming super aware of how her body works, and still has some pain and bleeding. But I now have more of a life than ever before”

Because of this journey Jodie lost her career as a chef and decided to apply for uni (with no GCSE’s) she got accepted and completed her Health and Nutrition Bachelor’s degree with honours after writing a dissertation on stress levels of women in Portsmouth with Endometriosis. She then went on to complete her Health Sciences Master’s degree with a first-class pass after writing her dissertation on the same topic as her undergrad degree but on almost a thousand women across the globe.

Finally, Jodie has started a research PhD that is investigating the relationship between endometriosis care and various factors that may affect it by way of

Comparison of health-related quality of life outcomes in patients with endometriosis of different ethnicities.

Comparison of health-related quality of life outcomes in patients with endometriosis by region in the UK.

Comparison of health-related quality of life outcomes in patients with endometriosis being treated at British Society for Gynaecological Endoscopy (BSGE) accredited gynaecological centres vs standard gynaecological centres.

Investigation of the lived experience of endometriosis by qualitative measures.

Jodie’s story is one that is not uncommon in people that have Endometriosis, “it is truly disheartening to know that so many people are suffering due to the lack of education surrounding a disease that affects so many”

Jodie’s friendship and love of the trustees is what urged her to ask them to get involved in the charity. “Each one of the trustees brings a particular skill set that makes the charity a diverse and inclusive space, that can spread up to date information. It also ensures that we can help as many people as possible”

Kirsty Rogers
Chair of Trustees Endometriosis South Coast
Education and Training Manager
Image of Kirsty Rogers

Kirsty has joined the Trustee team at Endometriosis South Coast to help advocate for a change in endometriosis treatment pathways and diagnosis as a result of endometriosis causing physical health, mental health and personal implications for the majority of her life. Having been put on contraceptives at age 12 as resolution to extremely heavy, long and painful periods, Kirsty spent the next 14 years being put on various contraceptives to try and help manage, at that time, a non-diagnosed condition being told that some woman get heavy periods and pain is ‘normal’.

At age 23, Kirsty sought private treatment to receive a diagnosis by laparoscopy of Stage 4 Endometriosis. What followed was bouncing between gynaecology and gastroenterology appointments and numerous subsequent laparoscopies to continue to remove aggressive adhesions from her womb, ovaries, bladder and bowel. Despite this Kirsty managed to become pregnant at age 29 having a son and having some respite from the condition for 4 months before the symptoms flared up again. Finally, after being on high dose opioids (Tramadol) and Zoladex for 2 years in order to be able to continue to work, Kirsty made the decision to have a hysterectomy and oophorectomy in February 2017 at which point it was discovered that she also had adenomyosis.

Kirsty has worked in healthcare research for over 17 years, mainly in the NHS, and is passionate about using Evidence Based Medicine to change the lives and treatment options for patients, particularly those suffering from long term, chronic conditions. She will use her knowledge of NHS governance, research practice and her network to support Endometriosis South Coast’s mission to spread awareness of this debilitating condition and contribute to further research to better treatment options and help promote patient’s choices, aiding our beneficiaries voices to be better heard through co-produced research.

Catherine Abe
Trustee Endometriosis South Coast Head of Workforce Equality Diversity and Inclusion

I am a passionate advocate for inclusivity and equity and I have dedicated my career in HR to fostering positive cultures where people can thrive. I am excited to be part of Endometriosis South Coast’s journey in championing equitable healthcare and to create safe and inclusive support spaces for people undergoing diagnosis or who have been diagnosed with Endometriosis and/or Adenomyosis.

Kate Dunstone
Social Media Trustee Endometriosis South Coast

Head of Marketing at the Faculty of Sexual and Reproductive Health

Head shot of Kate Dunstone

In June, we welcomed Kate Dunstone as our new Social Media Trustee. Kate’s role will be to assist with the devlopment and updating of content on the Endo Southcoast website, maintain our presence across our social accounts, and other PR and Marketing related duties to continue to raise awareness. Kate works as a Marketing Manager at the University of Portsmouth.

Living with her husband, two small children (and cat!) on Hayling Island, life is busy but Kate says she found her ‘calling’ when the position of Social Media Trustee was advertised, “I always hoped to become a charity trustee one day – bringing my marketing skills, and experiences with women’s health issues together. I was so inspired by Jodie and the Endometriosis Southcoast Facebook Support group – this role felt like the right fit. I can’t wait to get started!”.
Penny Chamberlain BSc, MREs
Trustee Endometriosis South Coast

Researcher and Data Analyst

picture of a young woman with long brown hair looking into the camera

As a dedicated advocate for positive change, Penny brings to Endometriosis South Coast a background in research and data analysis with a Bachelor of Science (BSc) in Biomedical Science and a Master of Research (MRes) in Reproductive Science and Women’s Health. As a researcher, Penny contributes her analytical skills to the board, striving for evidence-based strategies that consider the diverse needs within the endometriosis and adenomyosis community.

Bethany Wells
Trustee Endometriosis South Coast

Business Graduate

Close up of a blonde woman's smiling face.

I am an advocate for equality, diversity, and inclusion (EDI) with a background in HR and ED&I. Leveraging my expertise, I contribute valuable insights to EDI discussions, staying current with the latest news and legal developments. Beyond mere advocacy, I am dedicated to fostering inclusive environments, drawing on my understanding of HR and ED&I dynamics. I am committed to adapting strategies to the evolving landscape of EDI in Endometriosis South Coast, aiming to create workplaces and communities everywhere, where everyone feels valued and included and their whole selves.

Sally Wason
Treasurer Endometriosis South Coast

Client manager in Accountancy

Picture of smiling young woman with glasses and blonde hair. Wearing a black turtle neck top and Taupe cardigan.

Sally is deeply committed to Endometriosis South Coast’s mission of advocating for change in endometriosis diagnosis and treatments as the Charity grows to reach a wider catchment. She believes strongly in the importance of giving back to the community using her 7 years’ experience of working in various roles within the accountancy industry to contribute to the board of trustees. Sally’s day job is that of a client manager at an Accountancy practice in Chichester, West Sussex.

Beth Prescott
Portsmouth Support Group Facilitator
Psychology Student
Woman in purple endo t shirt

Endometriosis South Coast is a charity which is close to my heart. I have struggled with endometriosis symptoms since I was about 12, and although my symptoms were not problematic until I was 17, I was still not diagnosed till I was 22 years old, after 2 surgeries, umpteen tests & scans, numerous referrals, being pushed from pillar to post, being told my pain was all in my head due to my mental health challenges. When I was diagnosed I didn’t receive any information on the condition, I felt completely alone, and I searched the internet which just bombarded me with scary information. But thanks to Endo south coast, their trustees & the support groups, I am now armed with knowledge and strength, and I can dismiss the myths and misinformation that we now know is outdated. I have made some life-long friends through this charity & their support group. Not only have they supported me through my Endo journey, they have also supported me through so much more and I couldn’t be more grateful to them for everything they do, without them I wouldn’t be where I am now.

Without the support of this charity, I would have never felt able to embark on the journey to university, conduct my own endo research, complete an undergrad degree in psychology & begin a master’s degree, in coaching psychology, which I strive to use as building blocks to further support others on their own journeys!

It means the world to me to be able to give back, and I am so grateful to be part of the team, advocating and running support groups for our community, giving others the love, support, empowerment and education that got me to where I am today, and I cannot wait to see what the future brings for us all!

Juliet Ukpabio Archibong
Marketing Manager, International Relations Student

Juliet Ukpabio Archibong is a dynamic and results-oriented professional with a proven track record of leadership and initiative in healthcare, project management, and community support services. Currently pursuing an undergraduate degree in International Relations with a focus on global business development, Juliet possesses a diverse skill set that includes leadership, strategic planning, negotiation, and creative problem-solving. With excellent written communication skills and proficiency in public speaking, she has spearheaded various initiatives aimed at improving patient experience and operational efficiency within healthcare settings.

Juliet’s passion for making a positive impact extends beyond healthcare, as evidenced by her experience in project management and community support services, where she has demonstrated exceptional leadership and commitment to fostering economic growth and improving quality of life for vulnerable individuals. With a blend of hands-on experience, formal education, and additional training, Juliet is well-equipped to drive impactful business development initiatives and make meaningful contributions to any organisation or community she serves

Lizzie Downhill
Volunteer creative Designer and Social Media Accounts Manager

I have been in the design industry for over 6 years since leaving university. I love my job and all things creative so wanted to take my skills and apply them where they can make a difference. I am always looking to grow, extend my network and keep my creative mind buzzing. I saw this advert and knew I wanted to apply. Whilst I haven’t been affected by Endometriosis, I am passion about sharing the facts and looking forward to learning and hopefully making a difference.

Anna Chui
Volunteer Content Creator, Endometriosis South Coast

Anna Chui is a content creator volunteer at Endometriosis South Coast. With a strong background in content strategy, particularly in personal development, Anna draws from her own battles with endometriosis to educate and inspire others. Her journey, marked by painful symptoms and recent surgery, fuelled her passion for raising awareness about the condition. Committed to the belief that knowledge profoundly influences health and lifestyle choices, Anna aspires to empower those facing similar challenges, providing both information and support.

Jessica DeLord
Volunteer Content Creator, Endometriosis South Coast

I chose to volunteer at endometriosis south coast because I wanted to have a place where I felt understood in experiencing the life changing illness that is Endometriosis. I wanted the opportunity to share and explore my creativity through assisting in their marketing as well as educating myself on the charity in the process.

Ellie Smith
Volunteer Content Creator, Endometriosis South Coast

Ellie is an enthusiastic, volunteer content creator for Endo South Coast. Taking her half a decade of experience, working with everyone from schools to the agriculture industry, she is excited and passionate about using her skills to help education, spread awareness, and connect with the endometriosis community. Having spent her youth in total confusion, battling her own reproductive healthcare issues, she is delighted to be able to share her tips and support others facing challenges. For Ellie, no one should be stuck in the dark with their body!

Jaredine Smart
Project Manager, Endometriosis South Coast

BA Hons, PGCE Education and studying for an MBA in project management, I joined the charity this year to manage exciting projects in aim to spread more awareness on women’s health. I am happy to be a part of such a great, dynamic team who are dedicated to research and education of women and the complexities of endometriosis which is commonly found in WOC. In my early career, I have gained much experience managing  the lifeline of projects in events and different industries, so I am excited to support vision of the charity and further the impact of research and development of Endometriosis Southcoast.

Olivia Smith
Events Lead, Endometriosis South Coast