For years, doctors and employers alike had written off 'really bad period pain' as a fad. It was an excuse used by exercise-shy teenagers in schools across the world in an attempt to escape the trauma of running around a muddy rugby pitch in the freezing cold. I was guilty of this, but was caught out when I used the same excuse two weeks in a row. I quickly learnt that constant reinvention is the key to a successful skive. But what if bad, even, debilitating period pain was actually the result of a silent disease?
Endometriosis affects around 2 million women in the UK. It is a chronic illness, with no cure and can plague some sufferers for decades until they reach the menopausal. Symptoms include chronic period pain, pelvic pain, pain during sex, digestive and stomach problems and fatigue.
The disease is a result of the tissues found in the lining of the womb occurring in other parts of the body, commonly the pelvis, ovaries, bladder and bowel - and in some extreme cases, the lungs. This tissue behaves like the womb lining by thickening every month, but when they bleed like they would during a period, the blood has nowhere to go, and results in scar tissue. Ovarian 'chocolate' cysts also often come hand-in-hand with endometriosis. Invasive surgery is usually the only effective treatment, but even this cannot prevent a recurrence in the years following. Some women will experience several surgeries during the course of the disease.
I received a confirmed diagnosis of endometriosis in December 2011. It had followed months of pelvic pain, recurrent stomach and digestive problems, and almost incessant indigestion. It had left me bed-ridden, or at its worst, hospitalised around the time of my period. To this day, I still don't know how I managed to catch a bus to my local A&E one rainy November morning when the pain was so bad I couldn't walk.
I juggle a demanding part-time job with studying for a degree. My life involves lots of early starts and late finishes, so for many months, I put my symptoms down to being rundown. It wasn't until I visited my GP that he decided to refer me for an ultrasound scan which revealed a chocolate cyst growing on one of my ovaries.
Like many women, I'm an expert at putting a brave face on things, but I have to admit (yes, we do that too), it was a scary time. I was told to expect to lose my ovary, so my fertility, or potential infertility, was a big concern. I'm 22, and in no way desiring a baby anytime soon, but I at least wanted the option when the time came.
Endometriosis is something of a 'mystery' illness. On average, it takes around 8 years for a diagnosis. I don't do anything by halves and was fortunate to be diagnosed within 3 months. Although research is ongoing, there is no indication of the cause. Some scientists say that it's genetic, others argue that it's environmental. Either way, because there is no established cause, there is no cure. Post-surgery options are limited. Monthly hormone injections are favoured by many doctors, but they are pricey, and not all NHS Trusts will foot the bill.
Explaining the illness to employers is also a difficult situation. If you're under an all-male management team like me, then you'll appreciate the nerves I felt sitting down with them and explaining my absence. Would they believe me? Would they understand? The phrase 'women's problems' was met (as predicted) with much mumbling and red-facedness. It's not often that I see my managers speechless, but it was all taken in good humour. I'm lucky to have great employers who were supportive, but I know that not all women are as lucky. It makes it even more vital to raise as much awareness of endometriosis as possible.
My experience has had some positive outcomes - I have turned from something of a exercise-hating and comfort-food eating woman into a healthy-eating and regularly-exercising one. My mother is still wondering where her daughter disappeared to.
There is some great support out there for endometriosis sufferers - Endometriosis UK is the national charity working tirelessly to raise awareness up and down the country, but there is still much more work to be done.
March is Endometriosis Awareness Month. Endometriosis UK are currently working to promote the Early Diagnosis Alliance, which will ensure that UK health professionals are supported to be able to spot and diagnose endometriosis as early on as possible. The more awareness that is raised, the less women will suffer in silence from this debilitating illness.
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