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.

Team members

Jodie Hughes AfN, Bsc, MSc
Founder & Research Consultant

Endometriosis care research PhD student at Roehampton University

Headshot image of Jodie Hughes

Jodie is the founder of Endometriosis South Coast and Research Consultant.

She has almost finished 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

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
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 and Marketing Trustee, Endometriosis South Coast

Head of Marketing at the Faculty of Sexual and Reproductive Healthcare

In June 2021, we welcomed Kate Dunstone as our new Social Media Trustee. Kate’s role is to assist with the development and updating of content on the Endometriosis South Coast website, maintain our presence across our social accounts, and other PR and Marketing related duties to continue to raise awareness. Kate works as Head of Marketing at a London-based charity for her ‘day job’.

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.

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 of Endometriosis South Coast and the Chair of Trustees. 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

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

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.