Long Reads

"I've waited 10 years for an endometriosis diagnosis. Why?"

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Mattie Lacey-Davidson
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Writer Mattie Lacey-Davidson has been suffering from the symptoms of endometriosis for over a decade - but she still hasn’t had an official diagnosis. Here, she asks the question: when will doctors finally take women’s health seriously?

My biggest fear in the world is being told that nothing is wrong with me.

If nothing is physically wrong, then that means the pain I have experienced over the last decade is a figment of my imagination – and that is just too overwhelming to bear thinking about.

All I want in 2018 is to have a laparoscopy. This keyhole surgery is the only definitive way to diagnose endometriosis under the NHS, because listening to a woman’s symptoms never seems to be enough.

Endometriosis is a condition in which the endometrium (lining of the womb) grows where it shouldn’t, such as the ovaries and fallopian tubes (which can interfere with fertility), inside the tummy, and in or around the bladder or bowel.

It is one of the most common gynaecological problems in the UK, and affects one in 10 women of reproductive age. However, it takes an average of seven and a half years to be diagnosed after symptoms begin to show – and I’ve been battling to get a diagnosis for over 10 years.

“All I want in 2018 is to have a laparoscopy.”

My symptoms began in 2007, when the pain from a heavy period became so intense that I couldn’t sit or stand straight. I was in school at the time and wanted to go home, but I was too scared I wouldn’t be able to make it.

I was given the first of countless examinations and advised to take the contraceptive pill, which made my mental health instability issues rear their head.

Depression is commonly associated with endometriosis due to the impact the condition can have on your quality of life, and it is also an incessantly prevalent side effect of the pill – but that’s an issue for another time.

A year and a half later I began to experience debilitating pain from sex and returned to see my GP again.

I went for the first of many sexual health screenings – I would have five more over the next five years, regardless of whether I’d had a new sexual partner or not. Despite being only 19 at the time I had the good fortune of being given a cervical smear, which was six years early under NHS guidelines (yet another issue for another time).

Nothing was found from the tests and no further action was taken. I felt completely abandoned.

Over the next few years I cramped up from sex almost all the time and bouts of ‘period pain’ came and went, regardless of whether I was on my actual period.

Then, in 2012, I tried to go to the bathroom after having sex with my boyfriend. As I walked towards the door the pain in my stomach and back shot down through my thighs, causing my legs to buckle and my knees to slam into the wooden floor beneath me.

I returned to my doctor and insisted that something was really wrong. This led to my first pelvic scan, which was conducted both internally and externally.

The results show increased vascularity (blood vessels), which is apparently normal for women who have given birth, which I have not. It also showed that there was liquid in a small pouch behind my uterus.

Together, these signalled a bigger issue and I was finally sent to see a gynaecologist. It was at my appointment at Edgware Hospital that I heard the word ‘endometriosis’ for the first time.

I was told I could have a laparoscopy, which would involve keyhole surgery in three points of my stomach through which cameras should be able to see the endometriosis. However, I was instead advised to get an IUD, a hormonal coil that would stop my periods and hopefully prevent the cells from forming.

What I didn’t realise at the time, was that knowing what was wrong with my body would have brought me far more relief than a coil, which didn’t bring much reprieve at all.

A couple of years later I returned to my GP yet again but was told I couldn’t see the same gynaecologist. They explained that the government had taken the service out of hospitals, and clinics were instead being run intermittently from a selection of GP centres – a huge devaluation of women’s health.

We have seen so many damaging decisions like this across the board in public spending and health cuts, both of which have hit women the hardest.

There have been changes to maternity care and postnatal support, and cuts to sexual health services; the latter affected 3.2 million women in 2012 and can give way to teenage pregnancies, proven to restrict social opportunity.

More indirect examples include cuts in mental health services (women are up to twice as likely to suffer from anxiety and depression), or ‘austerity measures’, which disproportionately affect women and families and can result in a direct rise in poverty, which increases the likelihood of postnatal depression by up to four times.

I finally saw a new gynaecologist who didn’t listen to me at all but was instead determined to label the issue as gastronomical because of the effect it had on my bowel, which would send me running to the toilet. It often feels like there is a huge amount of pressure in that area, which makes me pee countless times a day, and my mother can tell if I am in pain from the swelling in my lower stomach.

In 2015 I had blood tests, a CT scan, an MRI, a hugely uncomfortable colonoscopy and then another pelvic scan.

Everything came back clear and again no further action was taken, despite none of my questions being answered. This time I tried to get hold of the gynaecologist but was told he doesn’t take calls. I felt utterly abandoned.

By the time I turned 26 I was with somebody I wanted to have children with, but in every conversation I had to ask, what if I can’t?

The thought still haunts me.

“I was with somebody I wanted to have children with, but in every conversation I had to ask, what if I can’t?”

I finally returned to a new GP who I have gradually come to trust, after she treated me through my most recent, and most debilitating, bout of depression.

Evidently fraught, I told her that I needed a doctor on my side to help me get a diagnosis. She told me the gynaecologist I first saw does still run a clinic in Edgware Hospital (why I was informed otherwise remains an infuriating mystery), however it was very difficult to get an appointment with her.

In June last year I went for my third pelvic scan, which showed a cyst on my left ovary. I was assured it was normal, but I began to notice more pain on my left side and worried that it wasn’t. I worried about my fertility and, more than anything, I began to worry it was all in my head.

There have been more GP appointments that I haven’t mentioned here where my symptoms have been completely dismissed. I have to wonder how much better the condition would be understood, taken seriously and more readily diagnosed if it were not isolated to the female body. As women, the health services have been historically pitted against us, our minds and our bodies, leaving us undervalued, ignored and misbelieved.

This presides around the world today, with recent research even finding the existence of a ‘gender pain gap’. This showed that men in A&E were treated for pain in just 46 minutes while women, with a history of hysteria (a term with hugely sexist connotations), were forced to wait 65 minutes. They were also more likely to be given sedatives instead of actual pain relief.

So what else can women like me expect, when we tell a doctor that we are experiencing something that they believe is nothing more than the cards our female bodies have been dealt?

January of this year marked six months since the last GP appointment and I had still not heard from the clinic so I returned to my GP, who has referred me again.

I am still waiting, desperately, for an appointment. My doctor has warned me I may have to battle for the laparoscopy even when I am seen – and I fully intend to.

Now, alongside my fertility fears, I torture myself with the question: what if it isn’t endometriosis? Worse, what if it isn’t anything at all?

If you think this is the best outcome, you are wrong.

Can you imagine waking up after having investigative surgery, after 10 years of pain, to be told there is absolutely nothing wrong with you?

I think I would lose my mind.

I suppose I already would have. 

Endometriosis: the facts

  • Endometriosis is when cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. This blood has no way to escape the body.
  • Symptoms and severity are hugely varied, but can include pain in your lower tummy or back, severe period pain, pain during or after sex, pain when urinating or pooing during a period, feeling sick, constipation, diarrhoea, or blood in your pee during your period, difficulty getting pregnant and heavy periods.
  • One in 10 women of reproductive age in the UK suffer from endometriosis, while 10% of women worldwide have the condition. That’s 176 million.
  • The prevalence of endometriosis in women with infertility is thought to be between 30 and 50 per cent.
  • Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
  • The cause of endometriosis is unknown and there is no definite cure.

Information via Endometriosis UK and gynaecologist Chris Mann of Spire Parkway Hospital

Images: iStock