Katy Johnston: 'I'm 22 – and endometriosis could stop me being a mother'

“If you sign here you are agreeing that we can, if need be, remove the affected ovary and fallopian tube. Do you understand what I’m telling you, Kathryn?”

Side-lined by the use of my Sunday name and the medical jargon littering the form in my hands I nodded. “Sure, whatever you need to do,” I said.

The conversation that had gone before was expected and yet staggeringly not. The pain I’d been experiencing for years, that had infected my ability to function on a monthly basis, was all at once recognised as the crippling disease that I now know by name: endometriosis.

Endometriosis is the second most common gynaecological condition in Scotland and it affects 1 in 10 women of reproductive age. It occurs when cells that function similarly to those lining the uterus grow elsewhere in the body. Each month, during ovulation, these cells thicken, break down and bleed, following the natural process of menstruation. However, unlike a regular period, blood formed because of it has no escape route. Instead of bleeding out, patches of endometriosis attach themselves to areas external to the womb – manifesting in painful cysts and clots which create adhesions, inflammation, deep scarring and, in some cases, fuse sufferer’s organs together.

These lesions must be removed surgically, most commonly via laparoscopy: a keyhole procedure whereby a small telescope is inserted into the body and manoeuvred about in efforts to locate and excise endometriosis. More often than not, such surgery marks a radical first step towards identifying this invisible and life-altering condition as, unlike more severe instances, superficial endometriosis can only be definitively diagnosed through invasive investigation.

Needless to say, the painful process from initial diagnosis through to surgery can be unbearable and the direct implications for a woman’s fertility hard to ignore. It is estimated that around a third of women seeking fertility treatment have endometriosis.

There is, as yet, no cure.

Earlier this month, following years of blackout pain, countless doctors’ visits, blood tests, ultrasounds and an MRI scan, I was diagnosed with several ovarian cysts (endometriomas) and severe endometriosis.

Following my diagnosis, I felt, and still feel, a jumbled sense of pre-mature grief and sublime vindication. At best, you might call my feelings misguided or impossible to understand, at worst, you might think them twisted. But I’d waited years for this diagnosis: for the moment’s understanding from one exchange with a gynaecologist at Glasgow Royal Infirmary. A clinical conversation that would be the first time I’d heard the word endometriosis.

Despite everything, I was relieved to have my pain acknowledged. Having suffered in silence for years, I could breathe again, because someone was listening.

I have always lived with heavy, debilitating periods: from that first awkward spotting of womanhood aged 12. Over the years, the intensity of this pain worsened, causing blackouts and vomiting, inducing migraines and rendering me crumpled with violent cramps for days at a time. Pain which forced me to miss school, work and later university.

Naively, I self-diagnosed my symptoms as a natural consequence of being a woman. My suspicions were confirmed by friends, family and a string of GPs throughout adolescence who helpfully told me "this is just something all girls go through", and advised me to, take paracetamol and try my best to get on.

For years, I led myself to believe that what I was experiencing was normal. That I was somehow responsible for over-egging my pain. I told myself I was a hypochondriac. A drama queen.

I learned to resent myself for not being able to thrive like the women in the Tampax adverts. Riding bikes and playing tennis in little white skirts. Kicking ass in business meetings, partying all night then getting up and running a marathon.

How were they doing it? How could a shared experience that unites a classroom full of girls or a nightclub loo bursting with women passing tampons under stalls be so strikingly different for each person?

Why was my body, the magnificent structure that marks us as women, making it impossible for me to stand up to my expectations?

I started to shake off the idea that my experience was normal when, in my final year of university, I gained a substantial amount of weight. I was ballooning, carrying pounds in unfamiliar places, bloating and evolving into an unfamiliar version of myself. My diet hadn’t changed yet I convinced myself the bulge was down to me.

Between my graduation in June and the start of September 2017, I’d shed two stones of this unexplained puppy fat on a diet of severe pain. My cramps were daily, my reflex to vomit out of control, frightening and, not to mention, inconvenient.

There were question marks over my physical health every day but for a while, I didn’t care. I’m embarrassed to admit that I was happy. Vomiting six or seven times a day during flare ups meant I could finally do up my size 8 jeans and gloat at my achievement. I was able to reflect on my graduation pictures with horror – calling myself fat and a mess while people fed my denial by telling me how great I now looked.

Half a stone and one menstrual cycle later, I finally fessed up – something was seriously wrong.

I went to the doctor and spoke about my symptoms – the agonising cramps, constant sickness and dizziness, fainting, fatigue, extreme weight fluctuation. I admitted to my GP, and to myself, that I was scared and needed answers.

I was put on the pill and referred for an ultrasound which identified several cysts on my left ovary. Thereafter, an appointment with a gynaecologist was arranged.

The wait was slow. Between that first ultrasound and the consultation my pain didn’t stop. Often I’d blackout and find myself doubled in hospital waiting rooms, sweating, praying for my cysts to be cut out and for the pain to end. Even writing this now, months later, I’m in bed having made the familiar journey home from A&E in the early hours of this morning.

Eventually, I met with my gynaecologist. She informed me that, as well as the cysts, my blood tests had shown abnormally raised levels of a protein named CA125, a measure used to detect traces of ovarian cancer and endometriosis. She sent me for an MRI.

In the weeks leading up to and following this scan, I’ve been largely housebound. Doped up on industrial strength medication and glued to hot water bottles. I’ve been bleeding for almost 10 weeks. I’m sore and unable to get up to attend classes for my master’s course. I have no energy. I’m reliant on the support of friends, my wonderful mother who travels down from Aberdeen each week and my unfaltering boyfriend who holds my hand every day through this.

Last week, I received the results of my MRI. They were worse than anticipated. My condition is severe. The existing cysts have expanded considerably and been joined by a further endometrioma on my right ovary. My left fallopian tube has filled with blood which has also infiltrated the space between the back of my womb and my bowel, fusing them together in a painful, sticky clot.

I have been referred for an ovarian cystectomy and a laparotomy in the coming weeks. As part of this surgery, my cysts will be removed, patches of endometriosis excised and fluid drained from the affected areas. The surgery is complicated and there is a risk that I may lose an ovary and fallopian tube as part of the procedure.

Should all the endometriosis tissue be removed in theatre, there is still no guarantee that my symptoms will lessen or that I will be rid of it for good. In fact, relapse is common, with over 30% of women likely to require further surgery within five years.

Despite gladly signing the forms, at 22 years-old, I have been made to face my potential infertility head on. Forced to acknowledge that I am carrying broken parts. Parts that could deliver pains akin to labour for the rest of my reproductive years yet deny me a shot at pregnancy.

I’m scared, and it’s the same fear that stopped me speaking out years ago. Embarrassment, shame.

March is endometriosis awareness month. Celebrity sufferers such as Lena Dunham are going public about their experiences. Real women are sharing their stories online and charities such as Endometriosis UK are making every effort to get people talking about this disease.

My silent suffering was not noble nor a testament to my strength, it was a testament to the stigma and lack of education surrounding women’s health. A similar fog is clearing over issues of sexuality and mental health yet still vehemently hangs over the subject of menstruation. It’s the responsibility of women and health professionals to change things.

On average, it takes seven and a half years from onset symptoms to get a diagnosis of endometriosis.

My story is just one and it’s a work in progress. Now, I’m going into surgery informed but, had I received this information years ago, I could have saved myself a decade of agony and life changing damage.

Dear girls, speak out if you feel pain. Your voice could prevent someone else from suffering too.

It’s time to smash the taboo around periods. Educate yourself on endometriosis.

For more information, visit endometriosis-uk.org