Interview Opinion

Code Red

Graphic By Paris Robson

Period-related illnesses, conditions, and issues are still a taboo for most despite their relevance and potential severity if ignored. We are led to believe that we should not talk about our periods because it can be a sensitive topic or even disgusting, especially when a man is present. This is contributing to an increase of people undiagnosed with painful reproductive-related conditions.

Some people experience a host of physical and/or emotional symptoms before and during menstruation, from heavy bleeding and missed periods to unmanageable mood swings, and these symptoms can disrupt a person’s life in various ways. Statistically, one in five women bleed so heavily during their periods that they must take days off from school or work just to deal with the heavy flow. More commonly, at least 75 per cent of women experience premenstrual symptoms, which may include bloating, swollen breasts, fatigue, constipation, headaches, or extreme mood swings just before they have their periods, due to the fluctuating levels of estrogen and progesterone. On the other hand, according to NSW Health, approximately 1 in 4,000 experience amenorrhea, and will not menstruate at all.

There are various other illnesses and conditions that are related to menstruation – such as endometriosis, polycystic ovarian syndrome (PCOS), and chronic thrush – that are not discussed enough amongst our community. These disorders may present themselves as extreme pain, mood swings, excessive bleeding, and/or severe fatigue before and during menstruation. And yet, too many of us are undiagnosed with such conditions – particularly Bla(c)k and Indigenous patients, who are repeatedly subject to gross disparities in treatment experiences and are even less likely to be taken seriously about their pain.  

The following collection of stories was compiled to honour Endometriosis Awareness Month in March, and seeks to enable readers to better understand the warning signs of period-related conditions.

Endometriosis: A progressive chronic condition where the lining normally on the uterus instead grows outside the uterus, causing excessive blood and severe amounts of pain during a person’s menstrual cycle.

Talia Miller, 20: Endometriosis

I was 11 years old when I got my period for the first time.

It started with a stomach ache, and turned into a gush of blood so heavy that Mum let me stay home from school. I learned from sex ed that my first period would likely be painful and irregular in length until my body adjusted. What I didn’t know was that it would be excruciating, heavy, and irregular for the next eight years.

During the first few years, I would often cramp painfully for a few days before, during, and after my period. I would bleed heavily for seven days, but kept to the 30-day cycle, which disguised the issue as being ‘normal’. With a family history of PCOS and painful periods, my grandmother and mum told me that it was perfectly normal to throw up every period. Nevertheless, I was compelled to avoid asking anyone else at school what it was like for them, because we were all going through the same thing – right?

As years went by, my cramps had reached the point where I would faint if I didn’t take painkillers regularly during my period, and I was bleeding so heavily that I went through a large tampon every half hour. I was becoming desperate for anything to help lessen the pain and flow, but the blood-thinning pills that I was prescribed didn’t change anything, and I gave up on treatment.

Midway through Year 12, I started cramping so badly I couldn’t move, and was rushed to the emergency room. I was recommended to a gynaecologist, who placed me on birth control in the hopes that I would improve. Despite the medication, my periods were still awful, and the pain started reaching my kidneys and lower back. Eventually, I was booked in for a laparoscopy, which both confirmed that my painful periods certainly weren’t normal, and allowed necrotic tissue to be removed from the affected areas of my lower organs.

I had my surgery – which definitively diagnosed me with stage 2 endometriosis – halfway through my HSC. Needless to say, doing my HSC Math exam in casual clothes with a pillow to sit on and heavy pain meds raised a lot of questions from my cohort. But telling a large group of people what had happened felt too personal and too fresh; besides, periods are considered ‘taboo’, and I have only met a handful of people who aren’t my doctors who have heard of this condition. The only people who knew were my immediate family and a few close friends. However, it has now been almost two years since my surgery. I am using the IUD (intrauterine device, a form of hormonal contraception implanted in my uterus), and have joined many online endometriosis support groups and advocacy sites. With the support from my close friends and family, and confidence gained from knowing I am not alone in this, I am now where I am today – living a relatively pain-free life, able to function normally with significantly lighter periods, proud to share my story so endometriosis becomes better understood and less taboo.

Chronic Thrush: A persisting condition of consistent thrush and irritation in the vulva or a burning sensation during sex, while wearing certain clothes, or even when urinating. 

Neve Traynor, 20: Chronic Thrush

I was a first year, in my first solid relationship – and unsurprisingly, with my first UTI. 

Following the advice of my older sisters, I dosed up on Urals and the burning-when-you-pee feeling stopped. But another pain stayed – a burning inside my vagina. A hot stabbing irritation, as if a chilli were stuck up there. For months, the feeling would rear its head randomly and I would play doctor trying to figure out what caused it: sex, underwear, starchy foods? Nothing was consistent. Sometimes it would stay for a week, leaving me bed-bound for entire mornings, trying not to cry too loudly so my housemates wouldn’t worry. Urals were now simply a placebo, so I tried a few of my sister’s spare thrush pills, just in case. I even tried MMS; the controversial ‘bleach’ product purported to cure COVID-19. Nothing changed.

My GP put me on antibiotics for a confirmed UTI during the first COVID lockdown, a three-week course of meds that broke me. The forced surrender of my body, coupled with the isolation and the effect of the drugs, took me to the darkest place I’ve ever been. For the first time, I did not want to be alive. Thankfully, once the drugs were finished, my mental state improved and the UTI disappeared – but the vaginal pain did not.

A year in, it was my number one problem. Only my partner and the women in my family knew about it; they were supportive, but just as stumped about it as me. Lying in bed feeling like my vagina was on fire was a mental battle, and sometimes the only thing that kept panic attacks at bay was having my partner draw on my back with his fingers, so I could concentrate on the sensation.

Another GP visit delivered me with a load of negative results and shrugged shoulders. Exasperated, I booked an appointment with my family gynaecologist. I remember sitting down in the patient chair and letting it all out, and she simply listened for 15 minutes. After a back-and-forth question and answer discussion with her, she told me that I had chronic thrush. I was in disbelief; I had never tested positive for thrush. The key to it all, she said, was my sister’s thrush pills that I tried. Taking thrush medication can cause false negatives for up to 6 months. But, I asked, how come I didn’t have the thrush symptoms I read on the Internet, like itchiness and discharge? She explained that chronic thrush can manifest differently to thrush and not a lot of research has been done on it.

As she wrote up my script, she handed me a double-sided form. It was a questionnaire about how the condition physically and mentally affected me. She totalled my score – 43 out of 47 – and assured me that we would get through this. It was the first time an outsider had seen the extent to which this condition was consuming my life, and I felt a rush of relief that I finally had a solution. These days, I’m in control again: I have vaginal pain only once a month and I’m no longer in constant fear. So many people with vaginas suffer from unexplained pain, and awareness of conditions down there could reduce the terrible time in the unknown.

Polycystic Ovarian Syndrome (PCOS): A complex hormonal condition where there is an excessive number of cysts/follicles on the ovaries, causing enormous irregularity of hormones, pain during periods, or an absence of periods. 

Anonymous: Endometriosis and PCOS

Even though I am not normal, I am not uncommon. One in ten women have endometriosis, where approximately 60% go undiagnosed. For many years, I believed that what I was going through was normal for anyone with periods – until my big performance day in 2015.

I got up early with the intention to get dressed, do my hair, and put on makeup in preparation for my big musical act that would be featured in assembly that day. As I got up from my bed, however, I suddenly felt the world drift from side to side. I was a buoy in my own room, caught up in what felt like a cataclysmic tide. I fell onto my floor as each wave washed over me. Black and white dots appeared before my eyes, and I was suddenly unable to move my legs. It was not pain I was experiencing; it was the inability to do nor think of anything. It was as if I were in a raft with no oars and no direction or help from anyone, rocking back and forth. After crawling to the bathroom, I blacked out on the floor.

My brother, being only 11 years old at the time, found me at exactly 7:12am – over an hour since I woke up – passed out on the bathroom floor. Thinking I was dead, he screamed and called for both of my parents.

When I finally woke up, I was no longer drowning. Someone had finally pulled me out of the sea and onto a paddle board – though tight, white sheets were strapping me down. My head spun, and I felt a weird numbing pain in my lower abdomen. Pipelines were going in and out of my arm and nose, all with their own machines. Doctors were explaining to both me and my parents what they found in muffled voices and serious tones.

“This is not normal. Why have you not told anyone about this?” The stern doctor asked me, apparently not realising how helpless I felt. I thought the excruciating pain that I felt before, during, and after my periods was normal. I thought that having to change my tampons every hour because of excessive blood was normal. I thought that needing pads during the night was normal. I thought that periods should last for 10 days or more. I thought that getting my first period when I was 10 years old was normal, and not something to bother my parents about.

It was when they performed a laparoscopy that I was finally hit with two lottery ticket-worthy diagnoses, endometriosis and PCOS. A series of medical tests also explained why I could seemingly go about my day-to-day business with such ease: I have an extremely high pain tolerance. I had been drifting through my life thus far believing that I was normal, and now, multiple doctors were frothing over how I am such a rare species of woman. And yet, at the mere age of 15 I was told then and there that there is a chance that there will not be anyone after me. In other words, it will be difficult to reproduce because of my condition. 

When my gynaecologist told me that fact, especially after I discovered I was her youngest patient for such treatments that I had to undergo, I responded that we are told that these things are normal.  

I was nervous writing about this experience, for it was embarrassing and yet completely life changing. I am now on a prescribed contraceptive pill that only a few pharmacies have readily to give, taking a thousand different vitamin supplements to stay healthy, and constantly in need of ultrasound check-ups and gynaecologist chats. And yet, I am happy with who I am, and finally on track with controlling the tsunamis that are bottled inside me. I have learned to love when Aunty Flow visits, for I know that I am allowing the crimson tsunami that is trapped inside to flow free.

Laparoscopy: A type of keyhole surgery where the doctor makes small incisions to insert a camera-like device to inspect the internal organs of the lower abdomen and pelvic region, and then clean out the endometriosis tissues. 

Alex Wilbur, 19: Endometriosis

It wasn’t until a year after my first period that my pain took a turn for the worse. At the age of 14, I went from having normal periods with only mild discomfort to experiencing pain that had me regularly taking paracetamol and anti-inflammatories. After a few months had passed and my pain was not decreasing, my mum booked me in for a doctor’s appointment. At this appointment, the doctor determined that my pain was normal, and reluctantly prescribed a contraceptive pill. While this did help regulate my cycle, it didn’t really decrease my pain a whole lot. When I next saw my doctor, she told me there was nothing else she could do.

In the following year, this pain began to gradually increase. By the time that I was 16 years old, I began to dread my period. Each month, I experienced debilitating pains that would leave me almost paralysed and unable to do anything other than curl up with a heat pack. It was a very isolating experience – I felt like no one around me could understand or relate to the extent of my pain.

Throughout this time, I saw many different doctors and was told over and over again that experiencing pain during periods was normal; that I should just continue to take mild painkillers and use heat packs, despite having already done these things with little to no effect. Eventually, I was fortunate enough to find a doctor who prescribed me with codeine. This painkiller, while unable to make my pain dissipate completely, did manage to decrease it significantly. 

Towards the end of 2020, I booked a doctor’s appointment to get another prescription for codeine. This time, however, the appointment went a little differently. My doctor recommended that I see a gynaecologist, which I quickly agreed to. My appointment with the gynaecologist in November was the first time I felt like the doctor was not only listening to me, but was actually believing the symptoms I was describing. I was given a referral to get blood taken and have an ultrasound. 

In January of this year, I went to the hospital to have a laparoscopy. Going into the surgery, I felt afraid of both having the procedure and that they wouldn’t find anything – which may sound a little weird, considering how serious endometriosis can be. But I was scared that all the doctors I had seen before were right, that my pain was all just in my head. I was scared that the pain I had been living with for years wasn’t as excruciating as I thought. So, when I recovered from the surgery and was told that I did have endometriosis, I was, of course, worried about what this meant for me going forwards – but I also felt a huge sense of relief. I finally had proof that I wasn’t lying or overreacting; that the pain I had been describing to the multitude of doctors I had seen was real. Despite how long it took, I’m glad that I persevered because now I can start to manage my symptoms and improve my quality of life.

For further information on period-related conditions, refer to these websites: 

If you are reading this and you think that a period-related disorder or condition may be affecting your life, please seek help from a medical professional, such as a gynaecologist. In these potentially sensitive and vulnerable circumstances, be sure to trust your judgement and practice self-advocacy with your health.

As these testimonies have proven, period-related conditions can be extremely taxing. Being able to understand exactly what you are going though, however, can make things infinitely more manageable, which is why it’s so important to get a dialogue going and remind yourself that you aren’t alone.

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