Adenomyosis: What it is, What it Can Feel Like and Why it Matters at Work
Adenomyosis still does not get anything like the attention it deserves.
Most people have at least heard of endometriosis now, even if they do not fully understand it. Adenomyosis is different. It is still remarkably common to meet women who have been living with severe period pain, heavy bleeding, pelvic pressure and fatigue for years without ever having heard the word, let alone knowing that there could be an explanation for what they are experiencing.
That lack of awareness matters because when nobody has given you another frame of reference, it is very easy to start believing that your experience is simply a particularly unpleasant version of a normal period. You adapt around it. You carry painkillers. You learn which clothes feel safest on heavy days. You cancel things when you need to. You get through work when you would much rather be curled up at home, and because periods are still something women are largely expected to manage quietly, the people around you may have absolutely no idea how much effort all of that is taking.
Adenomyosis deserves greater visibility, not because we need another frightening story about women’s health, but because women deserve to understand what is happening in their bodies and know when symptoms are worth investigating.
What is adenomyosis?
Adenomyosis is a condition where tissue similar to the lining of the uterus is found within the muscular wall of the uterus. It can cause the uterus to become enlarged and tender, and common symptoms include painful periods, heavy menstrual bleeding, pelvic pain, bloating or a feeling of heaviness, and pain during sex. Some people have no symptoms at all, while for others the effect on everyday life can be significant.
It is sometimes confused with endometriosis, but the two are different. With endometriosis, tissue similar to the lining of the uterus grows outside the uterus, while with adenomyosis the tissue is within the muscle of the uterine wall. It is also possible to have both conditions at the same time, which can make the picture more complicated.
There is no single adenomyosis experience. Some women may have relatively manageable symptoms or discover the condition while investigating something else. For others, periods can become extremely painful and heavy, with symptoms spilling into the rest of the month too.
That variation is important, because we should be careful not to turn adenomyosis into another condition where everyone is expected to experience it in exactly the same way. What matters is the impact it is having on the individual.
It is very easy to normalise symptoms when they have always been your normal
One of the difficult things about menstrual health is that most of us grow up hearing some version of the idea that periods hurt.
So where is the line between ordinary menstrual discomfort and something that should be investigated?
That can be surprisingly difficult to work out when you have no other body to compare yours with. If your periods have always kept you awake at night, perhaps you assume that is what periods are like. If you have always had to plan journeys around toilets or carry far more period products than your friends seem to, it becomes part of your routine. If you have always needed medication just to get through the working day, you can become very good at managing around that too.
Women can become incredibly skilled at accommodating symptoms without ever asking whether they should have to.
That is one of the reasons awareness is so important. It gives people a better frame of reference. The NHS advises speaking to a GP if periods become more painful, heavier or irregular, if heavy periods are affecting your life, or if you are experiencing symptoms such as ongoing bloating or pain during sex.
The aim is not to make women anxious about every painful period. It is to make it easier to recognise when something is having a meaningful impact on your life and deserves a proper conversation with a healthcare professional.
Getting an adenomyosis diagnosis can still take time
Historically, adenomyosis was most definitively identified after hysterectomy, when uterine tissue could be examined directly. That history is probably one reason there is still a belief that surgery is always required before anyone can know what is going on.
In practice, imaging now plays a much bigger role. Ultrasound and MRI can both be used when adenomyosis is suspected, and the NHS lists these among the investigations that may be used to understand what is causing someone’s symptoms.
That does not mean the route to diagnosis is always straightforward. Symptoms can overlap with other conditions, including endometriosis and fibroids, and women may have more than one condition at the same time. As with so many areas of women’s health, the quality of the conversation matters too. Being able to explain not just that periods are painful, but what that pain stops you doing, how much you are bleeding, whether you are waking at night and how symptoms are affecting work or everyday life can help communicate the real impact.
You should not have to prove that your experience is severe enough to deserve attention. If something is repeatedly disrupting your life, that in itself is useful information.
Adenomyosis at work is about much more than sick leave
This is the part of the adenomyosis conversation that I think is still badly overlooked.
When we talk about health affecting work, we tend to think first about absence. Did somebody have time off? How many days? How often?
But that tells us very little about what it can be like to work with a condition such as adenomyosis.
One study comparing women with adenomyosis with women without it found higher levels of absenteeism, but also significantly more presenteeism and overall work impairment. In that study, women with adenomyosis reported an average work productivity loss of 38.2%, compared with 12.4% among the comparison group.
That does not mean every woman with adenomyosis will struggle at work, nor should figures like these be used to portray women as less capable or productive. What they do show is that being physically present at work tells us very little about what somebody may be managing.
Pain competes for attention. Heavy bleeding creates practical stress. Poor sleep affects concentration and energy. Someone can be sitting in a meeting while also wondering when she can next get to a toilet, whether pain relief is going to kick in, whether she has brought enough period products and how she is going to manage the journey home.
To everyone else, she may simply look like she is having a normal working day.
That gap between what people see and what somebody is actually managing is one of the reasons women’s health conditions can remain hidden for so long at work.
If you are living with adenomyosis and are not sure how to talk about it at work, our guide on how to tell your manager about a menstrual health condition can help you think through what to share, what support you might need and how to start the conversation.
What can actually help at work?
There is no standard workplace adjustment for adenomyosis, because both symptoms and jobs vary enormously.
For someone working largely from a laptop, having the option to work from home on particularly painful or heavy days may remove the stress of commuting and make it easier to access a bathroom. Someone working in healthcare, manufacturing, retail or another role that has to be carried out in person will need something completely different. For them, predictable access to toilet breaks, temporary changes to physically demanding tasks or some flexibility around shift patterns might matter far more.
A later start may be useful after a night of poor sleep. Somebody with very heavy bleeding may need easy and frequent access to toilets. Another person may simply need the freedom to attend medical appointments without feeling they are creating a problem every time.
It is worth saying that support should not automatically mean asking someone to do less. Sometimes the problem is not the job itself but an unnecessarily rigid way of doing it. A small amount of flexibility can make it much easier for somebody to continue doing good work while managing their health.
The best starting point is usually to ask the person what is making work difficult and what would genuinely help, rather than reaching for a standard list of adjustments.
That is also why manager capability matters so much.
Managers do not need to become adenomyosis experts
If an employee tells her manager that she has adenomyosis, the manager does not suddenly need to understand uterine pathology.
What she usually needs from them is much simpler: listen, take what she is saying seriously, understand how the condition affects her at work and explore what could help.
One of the biggest barriers in women’s health is still the feeling that somebody needs to convince another person that her symptoms are legitimate before she is allowed to ask for support. That creates an unnecessary burden at exactly the point when somebody may already be exhausted.
Managers can also become nervous when an employee mentions a condition they have never heard of. They worry about saying the wrong thing or asking something too personal, so they either avoid the conversation or jump straight to Occupational Health without really engaging with the person in front of them.
Good manager education should make these conversations feel less intimidating. The aim is not to turn managers into clinicians. It is to help them become better managers when health enters the conversation.
If you are an employer looking at this more broadly, our article on creating a menstrual-friendly workplace explores what supportive practice can look like across culture, policies, job design and manager capability.
Treatment is personal
There is no single treatment that will be right for everyone with adenomyosis. The right approach depends on symptoms, medical history, fertility considerations and what the individual wants from treatment.
The NHS lists options including hormonal treatments such as an IUS or other hormonal contraception, medicines such as tranexamic acid or anti-inflammatory medication, and surgery in some cases where other treatments have not helped.
This is where I would be wary of giving people a long checklist of treatments in an article like this. Treatment decisions belong in a proper clinical conversation, and what works brilliantly for one person may not be right for another.
The important message is that there are options and that severe symptoms do not simply have to become something you learn to tolerate.
The mental load is easy to overlook
Adenomyosis is a physical health condition, but living with recurring pain and heavy bleeding inevitably affects more than the uterus.
There is the unpredictability of symptoms, particularly when you are trying to plan work, exercise, social events, travel... There can be frustration when your body does not feel predictable and worry about when the next difficult cycle is coming.
Then there is the practical thinking that happens in the background. Do I have enough products? Where is the nearest bathroom? Can I sit through this meeting? What if I bleed through my clothes? Should I cancel tonight because I know I will be exhausted by the end of the day?
No single one of those thoughts necessarily sounds dramatic. But having to make those calculations repeatedly creates a mental load that other people rarely see.
If somebody has also spent years being told that her symptoms are normal, finally having an explanation can bring its own mixture of relief, anger and grief. Relief that there is a reason. Anger that it took so long. Sometimes grief for the years spent believing you simply needed to cope better.
That part of women’s health deserves space too.
If you are living with adenomyosis
If you recognise some of your own experience in this article, you do not need to compare yourself with someone who has more severe symptoms before deciding yours matter.
Adenomyosis exists on a spectrum. Some people need very little intervention. Others experience symptoms that have a profound impact on their lives. Both experiences can be true.
If pain, heavy bleeding or other symptoms are affecting your everyday life, speak to a healthcare professional. Keeping track of symptoms can sometimes make it easier to explain the pattern and impact, particularly if you include things like sleep, work, exercise and activities you have had to change or miss.
And if work has become harder, think about whether there is somebody you trust enough to talk to. You do not have to disclose every intimate detail of your health to explain that you are dealing with a medical condition and would like to discuss what might make work more manageable.
Sometimes being able to stop hiding it is a relief in itself.
If you are an employer, adenomyosis is a good example of why women’s health needs a broader strategy
Adenomyosis also illustrates something important about women’s health at work more generally.
Menopause has understandably received a huge amount of workplace attention in recent years, but women can be navigating significant hormonal and reproductive health issues throughout their careers. Adenomyosis, endometriosis, PMDD, PMOS, fertility treatment, pregnancy loss and other health experiences can all interact with work in very different ways.
The answer is not to create a separate policy and initiative for every condition.
It is to build a workplace that is capable of responding well when somebody’s health needs change.
That means managers who know how to have sensible conversations, enough flexibility in policies and job design, appropriate routes into Occupational Health and other support, and a culture where women do not feel they need to hide what is happening until they reach breaking point.
It also means understanding what women in your organisation are actually experiencing before throwing money at interventions.
Want to improve support for menstrual and hormonal health in your organisation?
At See Her Thrive, we help organisations understand how women’s health interacts with work and turn that understanding into practical change.
That might mean building manager capability, improving awareness of conditions such as adenomyosis and PMDD, reviewing what support already exists or taking a more strategic look at women’s health across the organisation.
Our focus is not on adding more activity for the sake of it. It is on understanding the starting point, identifying what is getting in the way and creating support that genuinely improves women’s experience of work.
Explore our services or get in touch to talk about what would be useful for your organisation.