"Endometriosis is more than painful periods!" by Katy Johnston

I was diagnosed with stage four endometriosis over three years ago, after a decade of painful periods. I will never forget the moment I heard the word. This strange, unknown condition (that I couldn’t even spell) that was now, and had always been, a part of me. The ache in the pit of my stomach which caused me to miss school and black out with pain every time mother nature came calling. 

But endometriosis is more than just painful periods. It is a chronic condition that affects me and 1 in 10, others assigned female at birth every single day, here in Scotland. It’s invisible, yet the toll it takes on our bodies and our minds is very real. 

Dr Google can bring up some pretty scary results when it comes to endo but – with knowledge comes power. So, let’s get into it! 

What is endometriosis? 

Endometriosis is the second most common gynaecological condition in the UK. It occurs when cells like those lining the uterus grow elsewhere in the body. Each month, these cells thicken, break down and bleed – just like a menstrual cycle! However, unlike a period, the endometriosis has nowhere to go, so it manifests as sticky clots and painful cysts.

Endometriosis is a chronic pain condition that may lead to infertility, fatigue and bowel and bladder problems. There is, as yet, no cure but it is possible to manage your symptoms and live an amazing life with endo.

My period pain

When I eventually got my diagnosis three years ago, things were pretty bad. My case is severe. Most of that, unfortunately, is up to chance – everybody and every patient is different – but, a lot of my suffering was down to something we can change, our attitude towards periods. The thing that stopped me speaking out all those years ago.

I had my first period ten years before I heard the word endometriosis. According to Endometriosis UK, on average, it takes eight years for people living with the disease to receive a diagnosis. 

During that time, I convinced myself my symptoms were normal and that I was weak for not being able to take them in my stride. Everyone else seemed able to just get on with it, so why not me?

It was easy to convince myself that I was the problem. That these agonising menstrual cramps were all in my head; the heavy blood soaking through my knickers at an hourly rate was shameful and my not being able to get out of bed and get through the day was somehow letting the side down.

I know now just how wrong that was. I know now, and am still learning, that there is no prize for suffering in silence and sometimes the most courageous thing you can do is ask for help. 

Asking for help

80% of women (aged 16-24) would put off going to a Doctor with symptoms of endometriosis because they don’t think it’s serious enough to bother a Doctor with. They’d be embarrassed, don’t think they’d be taken seriously, or think symptoms including painful periods are normal.

Endometriosis UK, 2021

Throughout my teens, health professionals, friends and family were quick to assure me that my experience was ‘normal,’ or ‘just a bad case’ of something every woman goes through; I believed them.

Doctors prescribed paracetamol for the pain and the contraceptive pill to regulate my menstrual cycle but still, with each month came periods that knocked me out for days at a time. Periods that left me bed ridden, lying on the bathroom tiles in a desperate act to cool the searing hurt in the pit of my stomach. 

By now, the disease wasn’t just in my gut, it was in my head. I knew something was wrong but I pushed it down out of fear I wouldn’t be believed. This was ‘just a period’ after all. 

After University, things really changed. My physical health deteriorated drastically and the cracks in my school girl ‘grin and bear it’ strategy began to show.

At the start of 2018, at 22-years-old,  I finally admitted I needed help. I’d struggled with crippling pain every month for years but this was different. This was a lingering pain that I couldn’t shake off. I began losing weight rapidly, I was nauseous. I would faint and wake up in agony in hospital waiting rooms. A few months into the year I could barely walk and was forced to drop out of my Masters course and, once fiercely independent and ambitious, now struggled to leave the house unaided. 

The situation had become impossible to ignore. 

Eventually, I was referred to gynaecology and put on a waiting list for an exploratory laparoscopy (keyhole surgery). The operation revealed I was living with stage 4 endometriosis. My bowel and my uterus were fused together, I had several large ovarian cysts and one of my fallopian tubes had expanded to the same size as my womb. 

The extent of my condition was a direct reflection of all the years I stayed quiet about my painful periods. If I’d spoken up sooner, things might never have got so bad.  

What next?

Following my operation, I was placed on a course of injections designed to stimulate a sort of medical menopause. This radical, year-long treatment allowed me to recover and restart my life. I went back to University, got my degree and managed to break into my dream career in radio, albeit as a 20 something trapped in a 50-year-old’s body… (Hot flushes are no fun – be nice to your Mum!)

I’m no longer menopausal and manage my endometriosis symptoms most days through a combination of contraceptive treatment (the Mirena coil), hot water bottles and prescribed pain relief. 

None of these remedies are necessarily a cure for endometriosis and it’s possible I may need further surgery within the next few years but, for now, I’m not letting this disease hold me back.

I know my body and understand its limits and I’m not afraid to ask for help. There’s not a person on earth I won’t talk to about my period. Seriously, friends, colleagues, strangers, politicians –  this conversation should never be off limits. You should try it! 

Advice from other Endo Warriors 

Before writing this blog post, I reached out to some amazing endometriosis warriors, and asked them to share the advice they would give their younger selves. I hope you will find some of their experience helpful! 

This is what they said: 

• Don’t be embarrassed to keep going back to the GP, you are not being difficult! 
• Don’t give up – there is always help out there! 
• Don’t believe people if they tell you the pain is your fault – it’s not! 
• Don’t believe that your pain isn’t real. Nobody knows your body better than you.

If you suffer with any of these common symptoms: 

• Painful, heavy or irregular periods;
• Pain when going to the toilet;
• Severe pelvic pain between periods;
• For some people, endometriosis can have a big impact on their life and may sometimes lead to feelings of depression.

Please reach out to your GP. Consult the resources on Endometriosis UK’s website. 

If you recognise yourself or someone you know in anything you’ve read today, ask them about their period. Starting the conversation could change their life.

• You can follow along with Katy over on her Instagram – @katyjjo 
• Katy also runs an Instagram page called Endo Silence Scotland – @EndoSilenceScotland

You can check out more about Endometriosis on the NHS website.

EXPPECT provide up-to-date factual information about endometriosis and possible treatments.

For more information about supporting your mental health and emotional wellbeing visit our AyeFeel page.