specialty focus promotion , and about 1 in 7 again said they were passed over for projects or work was given to someone else because of the condition .
Is there just a lack of awareness about endometriosis ? Why do you think it is so stigmatised ? That ’ s a very good question and a very complex one at the same time . The answer is we really don ’ t know , but there ’ s some things we can hypothesise . One of the main issues is that pain , especially menstrual pain , is normalised . When we talk to people more broadly , even those without endometriosis , even if they have severe period pain , they ’ ll often say , ‘ Oh , it ’ s normal ; it ’ s just part of being a woman we have to put up with .’
In some focus group work we did , we regularly heard that if they had a female boss they often found it difficult because their boss said to them , ‘ Well , I had period pain and I didn ’ t need to take any time off .’
There ’ s this idea that all pain is somehow the same , despite the fact that period pains can obviously vary from very mild all the way through to what a lot of people with endometriosis have , which is vomiting and passing out in the bathroom .
We still have this taboo about talking about menstruation and about the painful symptoms . We did a focus group a few years ago and someone said , ‘ I can ’ t tell my boss that I can ’ t sit here anymore because I have pain in my vulva .’ Whereas if you contrast that with something like having a headache , that ’ s much more socially acceptable to talk about .
Can you tell us what some of the participants in this most recent study said their employers could do to assist them ? I think the biggest thing was providing people with endometriosis some sense of agency ; that they had some more control over their time management . I think about 87 per cent in total said it was either extremely important or very important to have flexibility and some level of freedom of time management .
That means , if you wake up and you ’ re having a pain flare , being able to postpone starting work for 90 minutes or so while the pain medication is kicking in , and then perhaps working longer into the evening . Being able to take a break in the middle of the day if you need to get up and move around because sitting for too long exacerbates your pain .
The second most important thing was some physical aids that could be implemented , like access to heat packs and , being able to work in a slightly different position like a couch or bed .
Obviously not every workplace is going to be able to implement these , and there ’ s some work that still needs to be done . We ’ re now working on developing these guidelines for endometriosis-friendly work environments .
Could you give us an update on how the National Action Plan for Endometriosis is going ? I think the National Action Plan was announced in 2018 but the funding really only started to get released last year for a lot of us , so it ’ s hard to say . A lot of the changes and priorities of the action plan still are not even close to being implemented yet .
There has been the organisation and rollout of the National Endometriosis Clinical and Scientific Trials Network , or NECST , which is great . That ’ s going to allow us to be able to collect longitudinal data , which is incredibly important . That ’ s something that we surprisingly don ’ t have in endometriosis .
A lot of effort and funding has been put into improving education for doctors . There is also a lot of work that ’ s been put into improving education for the community .
When it comes to diagnostic delays , there ’ s two components to that . There ’ s the time between the symptoms first onsetting : when you first start to feel , say , severe period pains , and the time that you present to a doctor . At the moment in Australia that ’ s about 2.6 years . That ’ s quite a long time . And then there ’ s the time between presenting to your doctor and getting a diagnosis . In Australia again , at the moment , that ’ s about another 4 to 4.8 years . So it ’ s a long time .
By empowering young people to understand the symptoms of endometriosis , we ’ re hoping to reduce the time it takes to seek medical attention . We are also exploring new ways to diagnose , because one of the barriers is the fact that we still need a laparoscopy to diagnose endometriosis .
There ’ s some new techniques and technologies , so for example there ’ s the Imagendo project at Robinson Research Institute . They ’ re looking at using ultrasound and artificial intelligence to speed up that diagnostic process .
“ One of the most important things is believing people ’ s pain .
There is some great stuff happening , but unfortunately we ’ re probably not going to see the benefits of that for a couple of years .
What do you think is the role for nurses in all of this : what can they can do to help their patients ? I think one of the most important things is believing people ’ s pain . One of the recurring themes we get in ours and other people ’ s research is pain is being dismissed : people are being told it ’ s all in their heads .
My advice would be if they ’ ve gone to their GP and they ’ ve brushed them off , tell them to go and seek a second opinion . Don ’ t just put up with things , because that is still , unfortunately , what happens most of the time .
Could you give us an overview of some of the treatment options that might soon be available ? There ’ s still two main sets of treatment options . One is excision and ablation surgery . There is a very little research looking at the difference between the two , so that ’ s an area which still needs considerable research around it . But surgery is still the gold standard , and it ’ s really about having a surgeon who ’ s trained properly so they can make the correct decision .
Then there ’ s medical management . At the moment that still tends to be based around pain management in the beginning : anything from ibuprofen all the way to opioids like Endone are really common . There ’ s also neuroleptics like pregabalin and gabapentin , although those are being used less now as the research tends not to support their effectiveness . There ’ s also hormonal treatments , and again everything from the contraceptive pill to a Mirena , to things like Visanne or dienogest .
There ’ s lots of treatments , but unfortunately it ’ s not one-size-fits-all . So there is quite a bit of trial and error . There are some promising suggestions that medicinal cannabis might be an option for pain management , and we have some research planned in that area for next year . ■ nursingreview . com . au | 17