THE BLOG

I Was Diagnosed With Endometriosis 30 Years After My Mum But We Were Both Let Down By Our Doctors

05/10/2017 17:18 BST | Updated 05/10/2017 17:18 BST
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On Monday I was diagnosed with endometriosis. I wasn't surprised.

You see, my mum has it.

My mum was diagnosed with a quite serious form of endometriosis nearly 30 years ago, back when it was relatively unknown. Apparently back then everyone thought it was an "American phenomenon" and she was told by countless doctors that she couldn't have it because she was British.

While the cause of endometriosis is not known, there's pretty strong evidence it runs in the family. As such, for years I have asked to be tested for it only to be told, 'Nah, it's probably fine. Don't worry about it. Maybe just come off your pill?'

While I completely understand this response (there's no definite evidence proving it's inherited, getting a test would have involved being referred to a specialist, and of course the NHS is under pressure), I went to multiple doctors displaying symptoms of endometriosis.

Now, for those of you who don't know what endometriosis entails, here are a few symptoms (see Endometriosis UK for more info):

- Painful periods

- Heavy periods

- Tiredness

- Pelvic pain

- Pain during sex

In addition to that list of loveliness, in some cases it can cause infertility.

So, to cut a long story short, I went to a private GP, who referred me to a private specialist, who, after a few tests confirmed what I had kind of always known (yes I know I am incredibly fortunate to be able to go privately - it's not something I take for granted).

Thankfully I hadn't listened to the 'come off the pill' advice given to me by countless doctors previously as apparently that would have impacted my fertility.

What I didn't mention before about my mum's story is that she had to go privately to get diagnosed too after asking GPs for three years to test her for it.

To point out the obvious - there was a 30 year period in between the time my mum received her diagnosis and I received mine. While there is no doubt that treatment for endometriosis has improved, it doesn't seem that the process leading to diagnosis has, and this is so, so disheartening.

Our stories are not unique. Forum after forum is dedicated to women sharing their struggles with endometriosis.

But it's not just endometriosis, it's female gynaecological health.

A few weeks ago at lunch my colleagues and I were talking about how little we actually know about the pills we are on. We all had stories of swapping brands, the impact these hormones had on our moods, on our weight, on our periods.

When discussing my symptoms with friends, so many of them had similar stories of unusual cramping and bleeding but 'just left it' because they knew they would get no answers.

With Gynaecological Cancer Awareness Month just having passed, and the revelation that more women know the symptoms of prostate cancer than womb cancer, it really feels like more needs to be done to ensure that women know when something is wrong and that any gynaecological concerns are listened to and explained by medical professionals.

No one should have to pay extra to be listened to by a doctor. There's a limit to how many days you can take off work to go to a doctor's appointment, only to be told you're fine when you know you're not.

You think time would change attitudes, but it hasn't. Thirty years hasn't changed anything.