Angie Mashford-Scott’s life changed in 2020. Despite experiencing symptoms of endometriosis since the age of 18, the pain became unbearable – and she was finally referred to a gynaecologist and had a “significant” amount of deep infiltrating endometriosis removed.
Fast forward four years, and Angie is now an advocate who is changing the lives of others with endometriosis through her organisation endokind, a specialised counselling practice for those with the condition. “Through my own journey, and hearing from many others, it became clear to me that specialised mental health support for those with endometriosis is desperately needed but almost non-existent,” she says. Angie, who is a registered counsellor, offers both online and in person sessions.
“Having endometriosis can affect all areas of your life, including work, study, travel, diet, finances, dating, relationships, sex, body image, self-esteem, and fertility,” she says. “Having endometriosis is hard.”
We spoke to Angie about the government’s recent endometriosis funding announcement, and what action still needs to be taken.
Missing Perspectives: Do you think that the government announcement of $49.1m to help those with endometriosis is sufficient? What change still needs to happen?
Angie Mashford-Scott: Look, of course, funding is always welcomed and always a win. However, we need more. Maybe 20 years ago, this amount of money would have been game-changing, but more is needed now. And there also needs to be more discernment and greater accountability for those receiving some of this funding.
There seems to be a lot of funding still being used for ‘building awareness’. But I think in 2024, we can set our sights a bit higher than awareness. Most people have heard of endo by now, and know that it can be debilitating and can impact on fertility. So what’s next? Let’s go! What we need is action, support services, support programs, right now. Engage with the community and ask us what we need and want, and then set up services that help us and support us to live with this disease. Many are literally crying out for support and help.
One of the orgs in Australia, QENDO, is doing some good stuff in this space. They seem to be quite focused on support services and also things like delivering training to GPs, and within schools.
I know that Jess, the CEO, is trying to build funds to set up a hotline where people can call and be connected in real time with a range of professionals – like a nurse, a psychologist, a pelvic physio – for advice, to talk through things. Rather than having to go into ER when they are having a bad flare up or they have a question they need help navigating. These are the types of initiatives that need more funding.
I also think that changes to the NDIS need to include endo! Endo isn’t listed as a recognised disability even though it is disabling for many. Migraines are on there for example (also debilitating of course), but endo still isn’t on there.
In terms of research funding, we need a research roadmap. I have a background in research, and when I’ve looked into this, it isn’t clear to me who is deciding what our research priorities are, where the funds are going, and why. We need genuinely innovative research, and we need greater transparency.
In Australia, the biggest ‘innovation’ we’ve had in the past couple of decades is the drug ‘Ryeqo’ – which isn’t really an innovation at all – it’s a drug that has been tweaked from another drug that’s been available overseas for years. And it’s basically more of the same – shutting down hormones and biological systems, bringing on an artificial menopause. I’m sorry but how on Earth is this the best option we’ve got?!
Grace Tame recently spoke out about her endo diagnosis and treatment, stating “Grateful that — while women’s reproductive health is underfunded, under-researched, underreported and generally undervalued — I can afford and access treatment.” What barriers do you think still exist for people with endometriosis in Australia?
Yes, I saw that. Grace, a very warm welcome to our super shit club! Gee, if anyone is in need of a hero, there’s your woman!
I think it’s great that she has shared her story and is using her platform to spotlight the illness and keep the conversation moving. I felt grateful she took the opportunity to highlight how underfunded and undervalued women’s healthcare is. And I’d like to add on to this by saying that this is not just in regard to women’s reproductive healthcare, it’s women’s healthcare, women with disabilities and women’s experiences with the medical system across the board.
The biggest barrier that still exists is the persistent misinformation around the disease, and the conflicting information on how to treat and manage it. And this is not just in the general public, this is within the medical community too. The misrepresentation of endo as strictly a reproductive disease creates all sorts of barriers for people accessing the care they need.
Yes, endo can and does affect reproductive organs and fertility, but it is a full body, inflammatory disease. It can affect the bladder, the bowel, the diaphragm, the lungs. I’ve known people to need bowel resections, or stomas put in due to the damage caused to their bladder or bowel by endo growths and adhesions. I’ve known people who’ve had collapsed lungs. Who’ve had their appendix taken out. Who have endo in their mouth.
Just this week, the international endo community is grieving the loss of a fierce Kenyan endo patient and advocate, Jahmby Koikai, who died in Intensive Care, aged 38. Jahmby endured a great deal of suffering due to this disease, including collapsed lungs and extensive endo throughout her body. Endo, by its very definition, grows outside of the uterus, so it isn’t a uterine disease and this is why a hysterectomy is not a cure (although it can help to reduce pain and inflammation in the pelvis for some people).
There are also particular barriers for trans men and gender diverse people with endo because they don’t fit neatly into these ‘women’s reproductive health’ narratives around the disease. Because endo is most commonly found in the pelvis, and a common symptom is period pain/cramping, the go-to specialist for people to see is a gynaecologist. But gynaecologists aren’t experts on the organs and functions of the urinary system, the digestive system, the respiratory system. Nor should they be expected to be.
Another barrier to equitable access to quality treatment is the fact that any gynaecologist with laparoscopic training (which is a surgical technique) can call themselves and market themselves as an ‘endo expert’ or an ‘endo surgeon’. But there is actually no subspecialty of medicine for endo.
I could go on, but these are what I see as some of the fundamental barriers to patients accessing the care that they need and deserve.
You can learn more about endokind here or follow on social here.