"You are a god," I said to the gynaecologist, and hugged him. After thirteen years of being misdiagnosed by various GPs, consultants and specialists through the NHS, I was overjoyed to find out what was actually wrong with me. I hugged him some more and cried. He looked a little taken aback. I'm not sure that this is a very common reaction to being told you are a sufferer of Endometriosis, but given that this disease affects one in ten women, over two million women in the UK and an estimated 176million women in the world, maybe it is.
This man was THE very first consultant in over a decade to solve the mystery of the debilitating, excruciating and relentless pain I'd been trying to mask ever since I was twenty. Confronted with previous doctors' scepticism and without one NHS referral to a gynaecologist, suffering in silence was the only way not to be labelled as 'the unfortunate patient' with a very low pain threshold and terrible immune system. The previous misdiagnoses I'd been given ranged from dull; 'flu' 'suspected virus' 'irritable bowel syndrome' 'bacterial infections' - to downright dramatic: 'glandular fever', 'pelvic inflammatory disease' and all manner of immaculately conceived urinary tract infections. All of which didn't exist as was then proven by millions of negative test results/ swabs and invasive "down-there" checks. My symptoms did though. And the longer they went untreated, the worse they got.
As soon as my periods started, I knew they were heavier than most. And when I mean heavy I mean treble extra strength. Think less of a woman running down a beach with Dalmatians and more of a tampon shark advert and you're halfway there. Two tampons every three hours, sanitary towels that took the form of bullet proof vests, and every sheet, duvet and item of clothing soaked through from every period without fail. Lying horizontal in foetal position with constant heat applied, waiting for the multitude of heavy duty painkillers to work their magic was the only way of managing the waves of chronic nausea; the crippling pain of millions of tiny hands ripping your insides out and hot pokers stabbing your lower back. When it wasn't that time of the month, I would feel like I had been clubbed with a bat with chronic exhaustion. Very often I felt like I had been punched in the kidneys and stomach and had pains shooting sporadically up my legs and back. These shooting pains were misdiagnosed as 'cramp'. Born in the late 70's, the cure for this was salt or marmite. On toast if I was lucky.
It's not life threatening but it's certainly life wrecking. Endometriosis is chronic and there is no known cure. It's not something medical insurance companies like to cover, particularly if the condition is pre-existing which invariably it will be if you've been waiting seven years for a diagnosis -currently the average diagnosis time. In some cases, it can leave women unemployable, infertile and desperate. Many resign themselves to years of silent suffering without knowing the cause. Those who are lucky enough to get a referral to an NHS endometriosis specialist centre from their GP, still wait for an average of seven or eight months to be seen for a diagnostic laparoscopy which is the only definitive way to diagnose the condition.
I was one of the lucky ones. Five years ago, after six months of not being able to do anything more than work from my heated bed, my amazing bosses very kindly offered to pay for me to see their doctor privately. That's how I met the man who changed my life. Three laparoscopies later, I am in a lot less pain and after a miscarriage I had two years ago, I was fast tracked through the NHS to have my third laparoscopy when it was discovered that the endometriosis had joined my pelvic wall to my bowel very similarly to my second operation. The 'adhesions' as they are called are temporarily detached. So the good news is I have had a window of eighteen relatively pain-free months. But the scar tissue as a result of all the poking and prodding from these operations causes a lot of leg and back pain. As endo pain is often symptomatic and not often related to the severity of the disease this will continue to be an ongoing issue until I find a pill whose side effects don't outweigh the benefits.
I signed Endometriosis UK's petition which calls the UK government to implement an NHS strategy for women with endometriosis. No woman should have to go through what I went through just to get a diagnosis. There urgently needs to be not only recognition of this disease but also a framework in place so that when a women presents endometriosis symptoms to her GP, she is given all available options. This includes referrals to a gynaecologist if needed in order to help her decide on the best course of treatment.
Like the disease itself, the spread of awareness about it is painfully slow.Finally high profile sufferers are starting to speak out. Oona King, the former labour MP described her battle with endometriosis in The Guardian as she doesn't 'want other girls and other women to go through 30 years of pain due to lack of expert knowledge and diagnosis within the medical profession'. Similarly, Lena Dunham, co-creator and star of HBO's Girls is raising awareness globally and practically single-handedly. She not only dedicated her eighth online newsletter "Lenny" to her struggle with endometriosis (which has a readership of 12.7K) but brilliantly and bravely shares her ongoing battle on a regular basis via every social media outlet she can. And with 2.4million followers on Instagram and 4.1million followers on Twitter this is inspirational. I, like Lena Dunham, 'hope for a future in which the pain of teenage girls is fully investigated and taken as seriously as a broken leg'. And one where more gynaecologists are being hugged, regularly, around the world.
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