Beyond the Diagnosis

Adenomyosis, a word underlined red as we write this. The word rooting from Greek, ‘Aden-‘ meaning gland, ‘-myo-’ meaning muscle, and ‘-osis’ referring to condition. It’s a condition where the endometrium (uterus lining) grows into the myometrium (uterine muscular wall). It can be focal, meaning the endometrial tissue appears as distinct masses, or diffuse, where the endometrial tissue is spread evenly and widely throughout the uterine wall. 

It’s often misdiagnosed, overlooked, or even ignored, because its symptoms: secondary dysmenorrhea, abnormal uterine bleeding, and dyspareunia, are found in many other uterine disorders, such as endometriosis and fibroids. We are almost certain that these symptoms are terms the average person is unfamiliar with. Dysmenorrhea refers to painful menstrual cramping, whereas ‘secondary’ refers to the pain being caused by conditions like adenomyosis. Abnormal uterine bleeding can be described as irregular menstruation in timing, duration or amount. Dyspareunia means intense pain during sexual intercourse. Although, the real question raised is why are these terms so unfamiliar despite their prevalence in society?

Due to the complexity of the gynaecological system, these conditions are severely under-researched. Stigmas in society have led to the normalisation of menstrual pain – this uncomfortable topic often finds itself leaving women to tolerate this agony, when in reality, this ‘time of the month’ could lead to several years of suffering. Consequently, this lack of information and research means there is no definitive theory on the origin of this disease – and not even a cure.

But, this condition is more than its role in our anatomy. It affects real people – your mother, your sister or even your daughter. If the biological background is not common knowledge, the least humanity can do is recognise this and empathise with the 1 in 10 women in the UK that suffer with it. We don’t have to be doctors to understand, just human. 

Beyond every diagnosis is a story, and we want it to be our role to be the voices of those affected, so we spoke to someone who lives with it everyday. 

Diagnosed in 2020. Full time mother, and full time teacher. Naz doesn’t fit the stereotype of someone that’s ill, which is exactly our point. Her symptoms began in 2019, after an emotionally stressful year where she began noticing heavy, prolonged periods with great pain, alongside an irregular menstrual cycle.  ‘It’s just stress’, is what everyone told her that she even began to believe it herself. ‘It will just balance and settle down’, but she knew something was wrong deep down. After a year of ambiguity, she finally went to her local GP.

Conditioned to believe it was her own delusion and not being heard out in the way she deserved to be, it took a year to diagnose. Multiple different GPs, dozens of conversations, yet she was still unable to exactly define ‘adenomyosis’ herself. Due to the poor understanding of the condition, Naz found herself having to chase everything up alone, researching her own condition, reading articles after articles. At an advantage with her biology degree, she took her own initiative – but what about those who don’t have the motivation and resources to do the same? 

Her emotional damage and physical agony was compensated with a singular ultrasound. Naz’s doctors initially started her on progesterone therapy. Progesterone is a steroid hormone, which is crucial in the menstrual cycle and pregnancy, and this medication was aiming to reduce the length of her prolonged period. But it was purely a short term fix, rather than a long term solution. The attempted relief of her symptoms triggered equally harmful side effects; a volatile emotional state, a huge appetite which resulted in her weight gain. This was no longer a disease of the uterus, but in fact a disease of her wellbeing, her body, and welfare. It was unbearable, detrimentally affecting how she saw herself, and how others around saw her. 

Unfortunately, upon doing a biopsy of her uterus (a surgical procedure to determine if an abnormal area is cancerous or not), her doctors found precancerous cells. After 2190 days post diagnosis, the best solution was found to be a hysterectomy – the removal of her uterus and fallopian tubes. In theory, they didn’t treat the problem; they erased it. She was the result of countless attempts at a cure, feeling as if the doctors were discovering more about adenomyosis alongside her. Even whilst waiting a year and a half for her hysterectomy, she was only seen twice in clinic as she was overwhelmed by constant paranoia — a battle against her own body and mind.

A year of waiting. A lifetime of impact. Beyond her diagnosis, her treatment, and few appointments, she couldn’t jeopardise her identity as a mother, wife or teacher. Consumed by her condition, her daily life underwent many changes. From mood swings to persistent anxiety at the thought of her prolonged periods starting at work, every decision she made was influenced by how her condition could take it – she felt as if she could not fully live and her peace of mind was taken from her. 

How might have events turned out differently? Who was to blame? What was the root of the problem?

We could blame the stress that triggered this, or the doctors that lacked the research and empathy to investigate further. But really, it’s the society that’s made women feel ashamed of their own anatomy. The doctors did what they could – the system did not. It’s the uncomfortable taboo surrounding the topic that causes this lack of research, and causes the 10 million women affected in England to feel isolated – this only includes the 10 million that had the courage to speak out about their struggle. It’s not just Naz – it could be you too. 

Not everyone is okay with a quick fix, it’s imperative that there are more options to be discussed, more empathy, and more consideration. It shouldn’t fall on you to investigate, the information should be accessible for all. Naz wishes that her doctors gave the time to explain what was happening to her and why. We wish that Naz’s doctors were taught and equipped with the right knowledge to aid her. 

Doctors are the ones to cure, but we are the ones who should understand and raise awareness. A cure isn’t only a treatment, it’s recognition.