ABOUT

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 or have been diagnosed with the condition.
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.
· Fundraise
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.

TEAM

Jodie Hughes 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

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

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

  3. 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.  

  4. 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”   

Demelza Slama

Trustee Endometriosis South Coast, Holistic and mental health advisor

I'm 44 years old and The owner of The Holistic Space. We carry out massage therapy treatments for clients who suffer with ongoing injuries or chronic health conditions including endometriosis. I met Jodie Hughes after several endo conversations as I myself as Endometriosis. I attended one of Jodies meetings and gave a talk about self massage techniques. This is where I met some of you fabulous ladies!!
I was diagnosed at 17 after starting my periods very early and being told that I wouldn't be able to have children. It turned about this wasn't quite accurate. I could have children but my ability to carry was massively challenged. I spent years having Depo injections and mirena coils with varying levels of success. I had my final mirena coil removed at the age of 39 after 2 years of solid bleeding, to find the lining of my womb had been perforated. This resulted in ablation and partial hysterectomy.
To have been asked to be a trustee of this fabulous charity by Jodie is an incredible honour and a challenge I take extremely seriously. With a passion and drive to help people I can assure you my commitment to you is 150%!!
Im looking forward to meeting more of you incredible warriors soon. ❤️

Robyn Gentle

Trustee Endometriosis South Coast, Medical advisor

Nurse

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.

Steff Moore

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

Advisor to 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.

endosouthcoast@gmail.com

charity 1186203

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