Endometriosis South Coast is an inclusive charity set up to support people who are going through the diagnosis stages of Endometriosis and Adenomyosis or have been diagnosed with the conditions.
They 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.
Their 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.
Endometriosis (Endo) is a systemic disease that affects the metabolism in the Liver and Adipose tissue which leads to systemic inflammation which in turn alters gene expression in the brain and causes pain sensitisation and mood disorders.
Endo is not a “women’s disease” or a “bad period”. 5% of people are diagnosed with Endometriosis, and it can even effect men, and it is expected that as awareness for the condition increases then so will prevalence rates.
Endo affects every single part of a person’s life, including their careers, 40% of women with endometriosis report impaired career growth due to endometriosis, and about 50% experience a decreased ability to work due to Endo. Endo cost the UK economy £8.2bn a year in treatment, loss of work, and healthcare costs. We will be at the Business Leaders Group on April 27th talking about this a little.
A survey conducted in 2018 of people with endo in Portsmouth found that 60% of those that took part had thought about or taken action to end their lives because of their Endo symptoms. This simply is not good enough. Many of the people that we help are medically gas lit every single time they talk to a Dr or even friend, a phrase we hear a lot is “you just have a low pain threshold” this simply is not the case. Many people with Endo are functioning on a day to day basis in pain levels that would put someone else in the hospital simply because they have been told for their whole lives that they just need to get on with it.
On 26th March they will be donning yellow and marching through Portsmouth from QA to Portsmouth Guildhall to raise awareness of Endo.
Jodie Hughes, chair of trustees at Endometriosis South Coast, said “We need to shout because no one talks about it enough. If we can change the narrative and make sure Endo is no longer a taboo subject we are doing our jobs well. Anyone can join us, regardless of if they have the condition.”
Find out more about the march here.
After the march they will be at the Spice Island Inn, Old Portsmouth (with a fantastic view of the spinnaker tower lighting up in yellow for their cause too) for a pub quiz starting at 7pm, hosted by the amazing Josh Is Fab. Tickets are only £5 and you get an entry into the raffle with it. Find out more here.
The founder of Endometriosis South Coast is also a PhD researcher looking at endometriosis care. If you would like to do so you can get involved in her study here.