Endo Help Foundation Walks the World 4 Endo

The Endo Help Foundation is a volunteer-run Geelong-based organisation on a mission to make those with endometriosis and pelvic pain feel seen, heard and believed.

The organisation has a strong focus on research, education, and awareness to empower those who suffer with pelvic pain or endometriosis, or “Endo” – a chronic condition where tissue similar to the tissue which lines the uterus, is found outside the uterus.

Foundation director of The Endo Help Foundation Katharine Stanley said there is currently a diagnosis delay average of 6.5 years for Endo, leaving many who suffer from symptoms confused and isolated for years before they find answers.

“A lot of people with endo feel like they weren’t believed for a long time, and even when they get the diagnosis, they don’t feel like they were believed,” Stanley said.

“So, the core part of our messaging is ‘seen, believed, and heard’.

“And that’s because we know that people recover better, and they go and get the help that they need.”

Stanley said the group is passionate about research because while endo is as common as asthma or diabetes.

“But it hasn’t had the same recognition, and because of that it hasn’t had the same funding,” Stanley said.

Endometriosis symptoms can vary from person to person.

Some people may experience pain with their period, bladder or bowel problems, fatigue or pelvic pain or fertility issues, while others may have no symptoms at all.

Stanley said the Endo Help Foundation is Geelong-based, with a Victorian lens.

“We run a monthly support group for anyone with endometriosis and pelvic pain, and we invite an expert in to talk about, whether it’s an acupuncturist or a fertility expert to talk about their area of expertise, and after that to give attendees the opportunity to talk about their lived experience, to share stories and support one another.

“We also lobby government to try to improve the space, with education programs in Victoria, we played a role in getting Pep Talk into Australia, and we’re trying to get an interdisciplinary centre into Victoria.”

In keeping with their cause, each year the Endo Help Foundation hosts Walk The World For Endo, a virtual walk that runs across October.

 

Participants can join from anywhere in the world, and decided how much they want to walk for the month, raising awareness and funds along the way.

“It’s really flexible because people with chronic pain can’t always exercise lots, people that are joining us after a hysterectomy for instance, who can’t take many steps,” Stanley said.

“So, there are some people who are taking part by taking lots of steps and raising awareness that way and there are some people who are sharing their stories and lived experience of endometriosis and pelvic pain and why they can’t walk as may steps, and that’s bringing awareness and education that way.

Stanley said one of the walk’s purposes is to educate people about how common Endo-related period pain can be.

“There is lots of stigma around anything to do with menstruation, so we’re starting those conversations about what period pain is, and we’re saying period pain is common but not normal, and you need to go and see a doctor, because it is very common and for that reason many people put up for it for a long long time before they go and get help.”

To kick off the walk, Endo Help Foundation hosted an in-person event on October 2 at the Geelong Botanic Gardens, hoping to connect both those feeling isolated and increase connection and co-operation among health care professionals.

While the event ended on Monday this week, the Endo Help Foundation is still waiting for final numbers for how far the participants of the virtual walk have collectively walked this year, and how much has been raised.

Last year’s event raised $42,000, which funded two research projects at Deakin University.

To find out more, head to hendohelp.com.au/walktheworld4endo