For years doctors didn’t take my period pain seriously. Then, at 24, I was diagnosed with endometrial cancer
Ovarian cancer month should be focused on breaking the taboo around women’s health
by Lydia Brain
It started at 22. After months of heavy bleeding between my periods, and heavy periods themselves, an unassociated ultrasound found a small lump in my womb. It was tiny (3mm wide), and I was told it was probably a fibroid and not to worry. When I became anaemic I was prescribed iron tablets and told not to worry. By now I had two lumps, still presumed to be fibroids.
When it was finally removed it was discovered to be a very rare tumour, known as inflammatory fibromyoblastoma. Unfortunately the tumour I have left is deep in the wall and it cannot be surgically removed, so I’m currently faced with, and trying to put off, having a hysterectomy.
At just 24 years old I was diagnosed with a rare form of endometrial cancer. I personally lived with debilitating, heavy periods for several years that weren’t taken seriously enough by health professionals. On occasion I had extremely heavy abrupt bleeding out of nowhere. The kind of bleed that went down to my knees and looked like someone had decided to shoot me in the womb.
These occasions left me crying alone in the toilet for hours waiting for an opportunity to make a break for it, crushingly humiliated and seriously considering my risk of death by vaginal bleed. Once, this happened at work with the male toilet attendant knocking on the door to see if it was empty. After an hour and a half of knocking every 10 minutes he finally got the picture and left me alone with my blood, sweat and tears.
This trauma is unnecessary. If I had bled that much from my arm I would immediately seek help without hesitation, worry or embarrassment. So why do we feel such shame around vaginal bleeding? It’s extremely concerning that not only are women suffering in silence with sinister problems inside them that need addressing, it means that the wider population aren’t aware of the extent of women’s health issues.
All in it took around two and half years of doctors’ appointments for gynae issues before I was finally diagnosed. I’d been anaemic spending several months barely leaving bed, bled all over the place in public on several occasions, gone to A&E, passed out for hours, and yet my symptoms were continuously reduced to ‘women’s problems’.
I often felt my bleeding was just seen as a ‘heavy period’ – a term that covers a multitude of sins and normalises the abnormal. Even after trying my hardest to conjure the correct words to highlight how abnormal my symptoms were, I was left feeling that this is just something that women have sometimes. I could have been diagnosed earlier if I had been more prepared to openly discuss my symptoms and if issues with women’s health were taken more seriously.
Luckily waves of change are starting to ripple.
The feminist movement is as determined as ever and gaining strength. We can all feel the welcome shift moving through the world, but we still have more work to do. There is still a big crimson cloud of embarrassment and ignorance towards women’s bodies and bodily functions that is endangering the health of half of the population. Our bodies are just a plethora of cells that create organs, bones and nerves so that we might be functional beings, yet women’s health is still shrouded with secrecy.
A study in 2014 showed that half of young women couldn’t identify their vaginas on an anatomical diagram. With so little awareness and openness towards women’s bodies, it is no wonder that we have a serious issue that is holding many women back from going to the doctors. Ovarian cancer is the second most common gynaecological cancer (after endometrial) and the biggest killer. Most variants are devastatingly aggressive. This is a two-sided coin, the more aggressive a cancer, the better it responds to treatment and if found early it can be cured, yet if not diagnosed promptly the prognosis is very poor.
— GRACE (@grace_women) March 20, 2017
Ovarian cancer sadly takes the lives of 4100 women each year, with early diagnosis being hugely important in a woman’s chances of survival. To most the symptoms are largely unknown and the population is uneducated on the process following diagnosis. Please, please, take five minutes to familiarise yourself with the symptoms. Important FYI: Smear tests screen for cervical cancer. If you have any unusual symptoms but have recently had a clear smear, please be aware of the four other gynaecological cancers and get checked if you are concerned.
We need to start taking charge and speaking up. To identify when something is wrong with our health and seek action we first need to understand how our bodies work and what is our ‘normal’. How can young women know that their bleeding, cramps and bloating are unusual if we don’t know anything about our reproductive system?
Six weeks ago I started treatment and I’m now taking Zolodex, a medication which works by shutting down all of my hormones and putting me in an induced menopause. If the treatment shows shrinkage of the tumour I could be on it for a few years, I work with a really incredible charity, GRACE, who are working hard to ensure women are diagnosed early and their prognosis is improved. But there’s still much more work to be done.
It’s about time we educate boys and girls alike on ovaries, vaginas and bleeding. We need to live in a world where a woman isn’t embarrassed to go to the doctor to discuss her vagina, where boys don’t giggle and point fingers in class just knowing a girl is on her period. Eliminating the stigma and taboo around women’s bodies has the potential to save thousands of lives and make even healthy women’s day-to-day lives so much easier. Only when we can call a vagina a vagina can we educate ourselves and increase body awareness.