Endometriosis South Coast- charity number 1186203 is an inclusive charity set up to help people along the South Coast who are going through the diagnosis stages of Endometriosis and Adenomyosis or have been diagnosed with the conditions.
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 and via social media. As well as fundraise.
Our main aims and goals are to
· Spread awareness of a crippling condition.
· Research the condition.
· Provide online support and educate members with monthly support group meetings.
1 in 10 people are diagnosed with Endometriosis.
We expect that as awareness for the condition increases then so will prevalence rates.
This condition is an under funded and under treated area of health, and that needs to change.
Jodie Hughes AfN, Bsc, MSc
Chair of trustees Endometriosis South Coast, Research advisor
Endometriosis care research PhD student at Roehampton University
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”
Trustee Endometriosis South Coast, Medical advisor
I am a 30 year old nurse with 12 years experience in the medical field.
I was diagnosed with mild Endometriosis via laparoscopy in 2013 following 2 years of unexplained pain and random bleeding.
In the 7 years since diagnosis, I have tried multiple forms of contraceptive pill, coils, injections, scans and eventually a second surgery in 2018 that reclassified me as severe. An MRI in the same year diagnosed me with Endometriosis horrible sister, Adenomyosis.
I still suffer regular pain and bleeding but this has been better managed in recent years through drastic lifestyle changes and being kinder to myself on this journey.
I jumped at the chance to be on the board of trustees of Endometriosis South Coast because
1. I believe its an honour and a privilege to work alongside someone like Jodie who is super passionate about the disease and the people it affects and
2. Because I think its highly important that not only do we have access to the best information and knowledge so as better to educate ourselves but also to be able to provide support that we so desperately need.
Endometriosis South Coast is not only here to support people through an often long and difficult diagnosis process but in the years afterwards too. On top of that wonderful support and the safe space that Jodie and Endometriosis South Coast have created, the charity is committed to educating people on the realities of the condition and that is something I believe is incredibly important.
Trustee Endometriosis South Coast, Education advisor
Primary School Teacher
Hello! 🙂 I’m 29 and a full time primary school teacher. I am currently in my seventh year of teaching and work in a community school in a coastal village.
I met Jodie about a year ago when I attended the support group she was running at the time. I have attended almost every group since and look forward to the meeting every month! The group has offered me an immense amount of support as Jodie has established such a welcoming and safe environment.
I was diagnosed at 28 after 15 years of ‘unexplained’ pain which was either undiagnosed or misdiagnosed as various things over the years. I had been in and out of Dr’s offices, gynaecology wards and pain clinics begging with them to look at all my problems as a whole and not the separate parts. I had/have pain in the pelvis, abdomen, shoulder and ribs as well as fatigue. When I was diagnosed, it was a relief to know there was one cause of many problems and it had a name. Even up until the day of my surgery, the gynaecologists did not believe I had endo. My surgery has been moved to autumn this year to finally improve things – I can’t wait for them to remove the endo, DIE and adhesions sticking so much together. Keeping my fingers crossed 🤞🤞🤞
Being a trustee of Endometriosis South Coast means an incredible amount to me and I am honoured to be working with such phenomenal women. I have an endo fire in my belly and I’m passionate about driving it forward and making into something good! It excites me to think that I can be a part of endometriosis and health education so others don’t have the same loooong journey to diagnosis and treatment I, and so many others, have.
Krystle Issitt RYT
Trustee of Endometriosis South Coast
LGBTQ+ and BAME advisor
Hatha and restorative yoga teacher
Member of Yoga Alliance Professionals
Mindfulness and meditation Teacher
Trauma informed yoga Teacher
Krystle is a yoga teacher, holding classes in Portsmouth and Southsea, who is passionate
about helping those with endometriosis find tools through yoga practices, mindfulness and
meditation to empower them through their endo battle.
Krystle was diagnosed with PCOS at age 13, after each period brought crippling pain,
nausea and fainting spells. She found little help from the medical professionals, and as a
result began to look at her body as a whole and treat it holistically.
“I’ve always been an ally to marginalised communities, we have so much potential to
learn from each other. I see it as part of my yogic practice to always be investigating where I
may be falling short as a human being, and to do better. Trans rights and equality is
especially close to my heart . Endometriosis is seen as a cis womans disease, and these
woman have fought hard to be taken seriously by medicals professionals because of their
gender, research is lacking, its just not good enough. But we must not forget the endo
brothers and non binary people, who have the added battle of gender dysphoria alongside
endometriosis, and can make even sitting in a gynae waiting room emotionally distressing”.
By becoming a trustee of the charity, Krystle hopes to be the advocate for marginalised, and
minority people. who often are overlooked in both support groups and by medical
organisations. Her trauma informed approach means she meets everything she does with an
understanding that endo will have created a very personal, and unique set of challenges for
each individual, for which we must be mindful in our work.
Fundraising and Events Trustee Endometriosis South Coast
Executive Personal Assistant
Hello! I am currently 24 and an Executive Personal Assistant working in the Church of England. I live in Portsmouth with my husband, our three cats and our German Shepherd!
I was diagnosed with Endometriosis almost 3 years ago in 2018. Unlike most I hadn’t had many tell-tale signs growing up and the majority of my symptoms just ‘appeared’ mostly as ongoing pelvic pain and severe bloating. After many doctor’s trips, hospital visits, blood tests and scans I was referred for surgery – even though I was categorically told it was unlikely anything would be found. A few months after that referral and a new gynaecologist I was diagnosed through a laparoscopy and had the endo removed. Unfortunately that surgery did not provide me with relief and I am now waiting for my next surgery as well as seeing a Psychosexual Therapist and Pelvic Floor Therapist to help manage the chronic pain.
Endometriosis South Coast has been a vital space for me during the last few years, the education and support that I have received through this charity has been incredible and a vital part to managing the condition. I am so excited to be a Trustee of Endometriosis South Coast and to be able to help support and educate others and have the opportunity to give back as well as working to raise funds to help Endometriosis South Coast to grow and flourish further.
Grants and Funds Trustee Endometriosis South Coast
Senior Membership and Insight Officer at Charity Finance Group
Jessie is an endometriosis advocate through her Instagram page livingwith_endo. She set this up last summer during Zoladex treatment.
Jessie was diagnosed with endometriosis when she was 21 after years of bad periods, pains and flooding. she has since had the disease come back and spread multiple times resulting in three laparoscopies, each two years after the last. After exhausting all treatment including Zoladex treatment which puts the body into early onset menopause, Jessie now speaks out about her journey. She is determined to break down the stigma around periods and bleeding and provide awareness and education for all young women suffering/ potentially suffering or supporting someone with endometriosis. She is also determined to normalise the conversation around mental health and endometriosis.
Jessie is 26 living in London and has a fulltime job working for a charity in North London. She is so excited to be part of the Endo south coast team as a trustee and cant wait to make a difference.
Social Media Trustee Endometriosis South Coast
Marketing Manager at the University of Portsmouth
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!".
Ambassador to Endometriosis South Coast
Katrina is a Casting Associate based in London and originally from Sydney, Australia. She is determined to change the narrative of mainstream media and get across to the world the truth and realities about living with Endometriosis.
Katrina was diagnosed at age 24 with Stage 4 Endometriosis after ten years of doctors telling her ‘Periods hurts, that is just the way it is.”
Katrina had her first Laparoscopy in 2018, ‘I was so incredibly relieved to find out I wasn’t crazy!’ Her uterus was fused to her bowels and doctors were able to remove a significant amount of Endometrial tissue during the procedure.
Now, Katrina is on a journey to find whatever it is that helps her to relieve her Endo pain. She is always passionate about trying new things. While Katrina has had all of her treatment for Endometriosis in Australia, she is extremely interested in learning more about the systems of treatment within the UK and raising awareness in any way possible.
Katrina became an Ambassador for Endometriosis South Coast after being so amazed by the incredible work done by Jodie Hughes and all the trustees of the charity. Katrina couldn’t help but bombard Jodie with emails because she was so excited to be involved.
Katrina’s goal is to work as hard as possible to ensure that Endometriosis becomes as well known as other chronic illnesses. She is also always happy to talk to everyone and anyone about Endo, ‘We are all in this together and I think there is such a strong bond between us all who suffer, lets all laugh and complain about it together!’.
Katrina is currently working on some very exciting projects on Endometriosis and can’t wait to share these developments with the supporters of Endometriosis South Coast.
Social Media Volunteer Endometriosis South Coast
Anvi is a recent graduate from the University of Southampton and studied BSc International Relations. She is working as a Social Media volunteer alongside Kate, helping to maintain our presence on all online platforms. Through her love for content creation, she aims to use her skills to help raise awareness about endometriosis for others in the same position so that they are aware of the resources available to them through Endometriosis South Coast.
Statistical Research and Analysis Volunteer Endometriosis South Coast
I have just finished my second year of Economics and Management at the University of Portsmouth. I have limited work experience and I believe that volunteering for Endometriosis South Coast is the best way to gain new skills, knowledge and experience as at the same time I am hoping to make a positive difference to others.