My wife is holding my hand in a death grip. Her nails are digging into my palm… and it hurts. I consider asking her to be a bit gentler, but quickly think the best of it, knowing the pain I am currently experiencing is pathetically low-grade compared to what is going on for her.
In her womb a magnitude 9 earthquake is rumbling on. A tsunami is bringing ten-storey high waves of pain. Somewhere in amongst it all King Kong and Godzilla are doing battle, and they are not throwing powder puffs.
This is what they call endometriosis.
Until I met my wife endometriosis was just a word. It was a word that ended in ‘osis’ so I knew it wasn’t good. Myxomatosis – no good for rabbits. Halitosis – no good for kissing. Endometriosis – I wasn’t really sure, but assumed it was no good for the women who experienced it.
My understanding was roughly on par with that of the average man. Endo was just some medical condition that existed, that I thankfully wouldn’t have to go through.
Until you live with someone who has endo, it’s easy not to see it. When I started my career, I was the one man in a workplace of thirty women. I worked there for years and managed not to hear a word about it, know that anyone had it or even understand what it is.
Most women with endo become extremely good at masking pain and powering through. During bouts of incredible pain my wife would still drive into her psychology practice, see a full day’s worth of clients back-to-back and then drive an hour home before collapsing into an exhausted ball. She did it because people were relying on her and besides, she couldn’t afford not to. As her condition has evolved, there are days she can’t leave the bed. Thankfully, now that we run our own business, we can make adjustments and prioritise care.
The opportunity for proper self-care is however denied to many endo sufferers because the personal costs are too high. Many run out of sick days and can’t afford to take another day off. Many hold legitimate worries about being dismissed, passed over for promotions or assessed as being less competent if they disclose their condition.
Workers who are lucky may have a boss that understands endo. They may have a boss who has suffered it themselves or one who has fetched a lot of heat packs and has some telltale nail marks indented in their hand. Or they could be unlucky and have a boss like me 15 years ago – someone who has completely no idea.
A recent study which included 389 participants with a confirmed diagnosis of endometriosis found that 78% had not disclosed their diagnosis, citing reasons such as fear of stigma or discrimination, concern about being perceived as less capable or a lack of workplace understanding or support.
Endometriosis is a common condition. Every manager should understand it and every workplace should have appropriate supports for those who suffer from it.
To equip you with the essentials, we’ve answered a few of the most common questions about endometriosis below.
What exactly is endometriosis?
Endometriosis (or endo as it is often known) is a common gynecological condition in which tissue similar to the lining of the uterus (endometrium) grows outside the uterus, in places where it doesn’t belong. This tissue behaves like normal endometrial tissue: it thickens, breaks down, and bleeds with each menstrual cycle. Because it’s outside the uterus, the blood and tissue cannot exit the body, leading to inflammation, pain and scar tissue formation. Endometriosis commonly affects the ovaries, fallopian tubes and pelvic lining, but can also be found on the bladder, intestines, diaphragm, and in rare cases, even the lungs or brain.
What are the symptoms?
Those with endometriosis may face high levels of pelvic pain, especially during menstruation. They may also experience heavy menstrual bleeding, bleeding between periods, painful bowel movements or urination, along with nausea and digestive issues like diarrhea or constipation.
Endometriosis can cause fatigue and bloating is also common. ‘Endo belly’ may cause the abdomen to swell up to the point where the sufferer appears as though they are pregnant. This can be highly confronting, particularly for those grappling with another condition associated with endometriosis – infertility.
Who does it affect?
In Australia, it is estimated that before the age of 49, endometriosis will affect 1 in 7 people who were assigned as female at birth. It is most commonly diagnosed between ages 25 and 34 and symptoms may increase in severity over time, depending on treatment and a range of other factors. While menopause may eventually bring relief, the transition period can be uniquely challenging for those with endometriosis. A recent international study led by researchers at the University of Queensland found that those who experience endometriosis are at a significantly higher risk of surgical menopause (removal of both ovaries), premature menopause (before age 40) or early menopause (between ages 40-44).
What treatments are available?
Unfortunately, science is yet to come up with a perfect treatment for endometriosis.
There are a range of hormonal therapies that suppress ovulation and menstruation, including the contraceptive pill, progestogens and GnRH analogues. These seek to reduce or stop the growth of endometrial-like tissue. Such treatments may not however be appropriate for all, particularly those with hormone-sensitive conditions, those with cardiovascular risks, those concerned about side effects or those trying to conceive.
Commonly, pain medication is also used by those suffering endometriosis, however this only masks symptoms.
Surgical options may be used to remove or destroy endometrial lesions. While surgery can provide relief, over time symptoms can recur. In severe or persistent cases, especially when other treatments fail, hysterectomy (removal of the uterus) may be used to prevent future recurrence. This does not however guarantee complete symptom relief, especially if lesions exist outside the uterus.
What can managers do to support those with endometriosis?
Workplace stigma around endometriosis and chronic pelvic pain often forces individuals to manage their condition silently, fearing it may negatively impact their careers. By opening up conversations about endometriosis, managers can signal that the topic is safe to discuss and that they will be supportive of employees who disclose their condition.
Flexible work arrangements including allowing remote work, adjustable hours or breaks to manage pain and fatigue, can be highly beneficial, improving symptom management for over 60% of employees. Workplace adjustments such as access to quiet spaces, ergonomic seating, or temperature control can help ease physical discomfort. Individualised accommodations can also be provided based on employee needs.
It’s also important that managers recognise the emotional toll of chronic pain and fertility challenges and know how to refer employees to appropriate mental health supports.
Anyone who has done the maths may realise that normal sick leave allowances may be insufficient for those who suffer from endometriosis. Developing formal policies for menstrual and chronic illness leave, can also be extremely beneficial.
Taking part in education and awareness training can further reduce stigma and open up important conversations. To improve how endometriosis is managed in the workplace, organisations can also join the EndoAware Workplace Accreditation Program run by Endometriosis Australia.
What are the benefits of providing the right supports?
While providing some simple supports and flexible work arrangements may not be a big deal for an organisation, they can make a world of difference to anyone with endo.
The Endo@Work study, conducted by Western Sydney University at Endometriosis Australia, explores what proactive changes can be made to create endometriosis inclusive work environments. It found that 79% of respondents felt that work from home arrangements had made management of their endometriosis symptoms easier, while 60% reported that it made them more productive. 90% thought flexibility in relation to time management and working from home was the most important factor that could improve management of endometriosis in the workplace.
Unfortunately, many organisations continue to hinder, rather than help. Nearly all people with endometriosis reported significant impacts. 70% took unpaid time off to manage their symptoms. 1 in 3 reported being passed over for a promotion due to their endometriosis, while 1 in 6 reported having lost their job.
Workplaces that are understanding and accommodating in relation to endometriosis can retain great people. They can inspire loyalty, nurture talent and enable everyone to rise to their full potential. With a compassionate culture, organisations can reduce stigma and shame whilst also reducing the mental health challenges that can go alongside this chronic condition.
Want to find out more about endo and what you can do to help? Visit https://endometriosisaustralia.org/