‘Some girls just have bad periods’: a 15 year wait to be diagnosed with endometriosis

Guest post by illustrator Kaye Sedgwick-Jones

Endo-info-graphic-1-ohhhkaye
Infographic courtesy of Kaye Sedgwick-Jones (OhhhKaye)

The second of our #EndoMonth guest posts comes from freelance illustrator and designer Kaye Sedgwick-Jones, otherwise known as OhhhKaye. Having suffered with endometriosis for her entire reproductive life, Kaye uses her gorgeous illustrations – like the infographic above – to help raise awareness of endometriosis and women’s health issues more broadly.

KayeSJFor years I suffered chronic pain, long, heavy periods, clotting, fainting, nausea, and fatigue with insomnia. But the strangest thing about all these symptoms was that they were all in my head…

Well, that is what my GP told me.

I was 10 years old when I started my period, in a field in Wales, on a camping section of a school trip. Yep, that classic joke-like scenario is where I started to feel a deep, constant and dagger like pain in my abdomen, became nauseated and discovered myself wearing bloody PJs.

I was scooped up, driven back to the school hostel, placed in a warm bath and told I was “growing up” by a flustered teacher from behind the large wooden bathroom door. I was “becoming a woman, and this was a normal thing for girls.” I remember feeling confused and scared.

I also remember crying a lot on that trip. I cried because I suddenly felt tried all the time, along with feeling like something was stabbing me constantly. My legs ached, my back felt sore, and the thick bulky pads a teacher had hastily given me to wear, felt weird and uncomfortable.

I kept saying that it really hurt, that I didn’t feel well, and was dizzy, but was met with the attitude of: “Don’t be silly, it’s not that bad. Periods can be painful, but all girls have them, so don’t make a fuss. And please, stop talking about it. You don’t talk about it.”

Of course, a lot of that can be true. For a lot of women, the cramps are bearable, blood loss is manageable, and exercise does help with pain. And of course a small, thin ten-year-old is going to say it hurts.

But sadly those words haunted my attitude towards my periods for a long time. I felt my pain must be normal. That my blood loss was normal. So, I did not speak about it. Not to other friends, other women, or even my mum who I shared so much with. I stayed silent. Because we don’t talk about it do we?

As I stayed silent though, my periods got progressively worse. I started to feel like I was weak, broken and useless. Why could I not cope with the cramps, the constant sickness, the heavy blood loss and clots? After all, all girls got them… didn’t they?

It turns out, they didn’t, and I had to wait until I was twenty-five years old to find out why mine were so bad. Throughout my teens and early adulthood, I was diagnosed as suffering from stress, anemia, IBS, a miscarriage, migraines, along with anxiety and depression, and prescribed a haul of drugs to cover the symptoms.

I heard all manner of unhelpful statements from health professionals: I would “grow out of it”; I was “unlucky”; “some girls just have bad periods”; it would go once I had a baby; or maybe if I ate more…

allinyourhead

One day I arrived at my GP surgery only to be placed with a new temporary doctor. I was in there for an hour. He looked me in the eyes as I told him I felt like I was going mad, that the pain and fatigue was just too much. I had lost my life. All there was left was pain. After I had cried, yelled, and begged for help, for what felt like the millionth time, he simply said: “How is it you have never see a gynaecologist?”

A month after that question was asked, as I slowly crawled back to consciousness after surgery, I heard a new word… Endometriosis.

It was the name of a condition, and it was very real. Not in my head. No, instead it was on my uterus, my fallopian tubes, my ovaries, my bowel, my bladder and my pelvis. It had stuck me together. They had to prise me open. Burn it off. Cut things out. Scrape me clean. It seemed to have loved my ovaries the most.

I was now faced with questions and statements like: “do you want a family?”; “do you have options to?”; “we should talk about your future”.

This is why I am so delighted that from 2020, it will be compulsory to teach about periods and menstrual health in schools. A chance to change how periods are viewed by both young women and men, and to provide a safe environment for girls to learn what is and what isn’t normal for their menstrual cycle. Endometriosis will be spoken about in a classroom. It will not be a stranger to them.

By normalising this natural occurrence in a women body, by talking about what periods are, how they work and what is normal could also lead to faster reactions to possible problems, and less embarrassment when asking questions. My hope is that no young person will suffer in silence again because they believe their pain is normal, or because they’re too ashamed to speak up.

Of course, knowing or suspecting a problem is just part of the issue. Health professionals must start to listen and consider a women’s knowledge of her own body. To not dismiss painful, long and heavy periods, along with fatigue, painful bowel or bladder movements and other symptoms, as “just one of those things”.

Currently on average women in the UK can wait up to 7.5 years for a diagnosis of endometriosis,  which is far too long. So much of the damage done to me was because it took so long for me to realise there was a problem and then to be believed when I asked for help.

I never want a young girl to go on the journey I have. Never.

So sorry, Miss ‘teacher-who-shall-remain-nameless’, I am going to talk about my periods. In fact, it’s become a large part of my business as I create animations, illustrations and designs about both periods and endometriosis.

I talk about periods at events, at marches, at networking groups. I talk about them to friends, to family, to strangers, to men, to women. We should all be able to talk about periods, and now teachers will have to. In my mind, that’s a bloody good thing too.


New-OhhhKaye-email-LogoYou can find Kaye online, on Twitter, on Facebook, and on Instagram.

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