15-Year-Olds Shouldn’t Have To Worry About Having Kids, But Health Issues Mean Some Do
I was in a maths class when I was 15 years old and suddenly found myself in excruciating pain.
My mind immediately flew to toxic shock syndrome, so I ran to the toilets, ripped out my tampon and thought all would be well.
But when I went back into class and sat down in my seat, there it was again. A sharp, searing pain going through my abdomen. A pain so harsh I could barely mumble out a, ‘Can I go to the nurse please?’ Before I staggered, half-bent over, my way back out the door.
Upon my arrival at the nurse’s office, I found she had conveniently popped out for five minutes… When she returned, she found me collapsed on the floor, curled in a ball, clutching my stomach through gritted teeth, crying out to phone an ambulance. She said: ‘It’s just your period.’
Fast-forward to me sitting a bit more upright in my GP surgery being told I have ‘a bit of endometriosis‘.
I sat there alone, fists clenched, pretending to yawn so the nurse wouldn’t see the tears of panic which had begun to fill my eyes.
She continued: ‘I would explain it, but you can just go home and look it up – it’s nothing to worry about really.’
Looking back on the encounter with my GP, I think not only was her quality of care severely lacking, but her knowledge of the big, black hole of the world wide web clearly was too. While she did mention that endometriosis consists of one’s womb lining growing elsewhere in the body, what this qualified professional failed to clarify was every single other detail. Not just the pain, the progression, the fact it never truly goes away, but oh wait, how could I forget? the possibility of infertility.
Aged 21, not everyone thinks about having babies as much as I do. Ever since I was little, I have always dreamt of having a massive family, with a future filled with four kids (Yes, I know, I’ll probably change my mind after two), some dogs, cats and a big, old happy home.
The diagnosis may at first have hit me like a short, sharp scratch, but for the past six years, the reality has still been slowly syringing into my brain. It certainly hasn’t been ‘nothing to worry about really’.
Endometriosis affects one in 10 women in the UK and can take, on average, eight years to formally diagnose. Speaking to UNILAD, Emma Cox, CEO of Endometriosis UK, the biggest UK organisation to support those living with the condition, commented on how the average eight-year waiting time to get a diagnosis is ‘shocking’ and ‘hasn’t changed in the last decade’.
So why are we not taught about a condition which affects so many? Sex, instead, taking the primary focus of many school sex-ed curriculums?
My year four sex-ed class consisted of being sat in separate classes from the boys, being shown fleeting glances of a womb. The majority of the slides consisted of how sex worked in relation to what we gigglingly called ‘willies’.
The fact I was once in the car with my mum aged 12, discussing a superhero film and accidentally described the ejector seat as the ‘ejaculate’ seat, serves to show what the lasting messages of those classes truly were.
While it may have seemed oh so humorous back then – my 10-year-old-self finding the image of putting some plastic balloon on a man-made banana, an alien and tittering possibility – I do not find the same humour in it to this day. Society has historically always placed men’s pleasure over women’s pain.
And this is not just pain, but a chronic, often debilitating condition with no cure, which can cause depression, fatigue, bowel problems, difficulties in relationships, inability to work and even an inability to conceive.
On this ‘education and awareness issue’, Cox details how the organisation has subsequently been campaigning for greater awareness through menstrual health being taught within the school curriculum.
Such teaching has so far been added to the school curriculum in England, but campaigns are ongoing for Scotland, Wales and Ireland. However, Cox says that the Scottish Government’s Women’s Health Plan indicates they will be instating such education into the curriculum soon.
According to Cox, the average age for a girl to start her period is now between nine and 11 years old, emphasising the importance of girls knowing the ‘correct terminology and what’s going to happen before it starts’.
Cox also explains the importance of ‘overcoming the taboo, of boys going ‘Ew periods!”. However, she thinks at ‘around 15–16’ there could be a ‘more in-depth session about menstrual wellbeing issues so people can be aware of them, but in a managed way that doesn’t scare’.
So, while 15-year-old Poppy skipped off home, assured by her GP her new condition was ‘nothing to worry about’, I can tell you that all I’ve done in the six years since is worry.
Over the past few months, my bloating has gotten progressively worse… My stomach often ballooning so much I could easily be mistaken for being six months pregnant –the closest perhaps I’ll get to the real thing.
My boyfriend has seen me collapsed on the floor, throwing up from the pain, moaning and crying in a foetal position, which once more, pokes a dark irony at how a baby may never be an easy part of my later life.
According to the American Society for Reproductive Medicine, ‘up to 30% to 50% of women with Endometriosis may experience infertility’. Why then, are endometriosis patients not easily able to receive IVF and other fertility treatment support, such as egg freezing?
There have been a few petitions surrounding the ability for those with fertility-impacting endometriosis to be able to freeze their eggs – most did not receive enough signatures, even closing prematurely due to their lack of success.
‘I feel very strongly that fertility preservation and support should be absolutely key to endometriosis treatment and available for those for whom it is important,’ Cox said. However, she doesn’t agree with a ‘blanket’ for everyone, which would be over one and a half million people or so. ‘While endometriosis does impact on fertility for some, many with endometriosis will be able to conceive naturally, while for others it may not be something they choose, so it isn’t necessary for everyone,’ she explained.
In relation to IVF, Cox notes the NICE guidelines, but how they often do not get applied in England for endometriosis sufferers, noting there’s a risk it ends up being about those who can afford it versus those who can’t, which is not a point the organisation wants to be at.
It’s important to bear in mind that everyone’s womb is different and that I only know what I do from reading information online, but it’s hard to stay positive, speak positively and hold on to any hope, when there is so little research, signposting to specialists or public awareness. Awareness of a condition that doesn’t just physically impact mine and other’s day-to-day lives, but also cramps my mental state too.
My diagnosed depressed and anxious mind spurred on by the side effects of not only my endo, but the contraceptive pill I have taken since I was 14 to try to subdue my weaponised womb.
Cox noted that if prescribed the contraceptive pill for period pain without any investigation as to the cause, it may manage endometriosis symptoms, but without knowing there is an underlying condition in the first place.
In the last few months, I have felt brave enough and had enough time to take some proper action. However, upon calling my new GP and speaking to her about my initial ‘diagnosis’, she told me there’s a chance I may not even have endometriosis.
While I may now not even have the condition and face a long and confusing journey of finding out, I haven’t spent six years reading, worrying and obsessing over it for nothing.
There’s also a strong chance I may still actually have it and the fact remains it’s a condition that desperately needs more recognition.
Saying that, however, during the last six years, Endometriosis UK was my saving grace. Its website and social media provided the community, the information, support and reassurance, which is not available as readily elsewhere. And while the condition itself is progressive, research and support around women’s health is beginning to be too.
Speaking to UNILAD, Cox, spoke of how diagnosis times is something the organisation are campaigning to see reduced.
By 2030, Endometriosis UK hopes to achieve a diagnosis time of an average of ‘one year or less’, something Cox says will ‘take time’ but thinks the goal is ‘doable’.
A survey conducted by Endometriosis UK discovered that prior to diagnosis but with symptoms of endometriosis, ‘58% of people (with Endometriosis) visited their GP ten or more times’; ‘43% of people went to hospital five or more times’ and ‘53% also went to A&E, 27% three or more times’.
Cox explains there is no simple diagnostic test for endometriosis, with the definitive way to diagnose being via key hole surgery and biopsy. As the symptoms may overlap with other conditions, other diagnoses may be easier to rule out, but unnecessary investigations if symptoms aren’t recognised as endometriosis can cause even more of a delay to diagnosis and accessing treatment.
For instance, thoracic endometriosis, a rare form of the condition, can take over 20 years to diagnose, as the symptoms aren’t recognised as endometriosis.
Cox argues that ‘we don’t have the right amount of time and resources in the NHS allocated for endometriosis’.
While in medical terms, endometriosis is classed as benign gynaecology, she stresses that ‘for some, lives are being ruined’ and that ‘we don’t know about the long term impact of delays for treatment’ of the condition, which can, for some, impact on fertility issues.
Cox thinks GPs have a ‘massively tough time’. They have to ‘know about every single thing which could be presented to them’ from ‘lego up the nostril, to cancer symptoms’, she commented. However, she does believe all health care practitioners should be ‘aware of the symptoms’ and ‘know where to signpost’.
Cox also noted that some women may not talk about menstrual health issues with their GP, thinking they are ‘not important, a taboo, or not sure if what they are experiencing is normal’, adding there may be a ‘lack of understanding and communication on top of that – including from patients who may not know the correct terms or be able to describe what they’re experiencing’.
Cox’s final message was:
If you have issues with pelvic pain or your menstrual cycle that interfere with your everyday life then seek help from a medical professional, it isn’t normal. And if you’ve got friends who are saying they have, then don’t negate what they are saying.
Talk about it, don’t be afraid to talk about it and if you want to support, Endometriosis UK has loads of ways for people to get involved. A really good time is Endometriosis Awareness Month in March.
For employers, one of the big comments we got was that some people find it really hard in the workplace because managers don’t take it seriously and because it can be cyclical, they don’t understand that it is a serious issue. If you’re an employer, we’d encourage you to be aware of this and to consider it as you would any other chronic condition.
The symptoms of endometriosis can be found here.
For now, I am left chugging paracetamol to condense the crippling cramps into a background, ever-present anxiety, awaiting my many years of getting to the bottom of whatever diagnosis I shall receive.
I remain curled on the sofa like one of the Quavers in the 24-bag-multi-pack I have just consumed in a futile attempt to distract myself from the fertility of my future.
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