Rachael’s endometriosis story: 'My diagnosis raised all these questions that no one can seem to answer.'

From finishing her studies to catching a train, endometriosis has made every aspect of 28-year-old Rachael’s life a challenge

by Rachael Dunbar | 23rd Mar 2021

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I remember lying on the table, trying not to cry. They’d finally diagnosed me with endometriosis, but my tubes were either so blocked or damaged that I’d have to have fertility treatment if I ever wanted to have a baby.

I thought – now, I’ll have to go back to the waiting room and explain to my partner.

I was 25 when I was diagnosed in 2018 but I was 15, 16 when I first started getting symptoms. I hadn’t started my period yet but I was really bothered by hormonal acne and fatigue.

I remember my first period aged 17. The week before I was exhausted, really fatigued, and then when it finally came it was agony, but almost a relief.

I thought this must be pretty normal – the girls in my class said their bellies were sore when they had their periods, so I thought maybe I was just a bit of a wimp.

It was also irregular, so the doctor gave me a contraceptive pill, but it didn’t agree with me at all. I changed to a different one, and again, but the side effects were brutal. I also went on the patch and it made my skin awful. I decided to come off hormonal treatments altogether and try to cope by myself instead.

It was always the same thing – fatigue. The doctors said I was just a normal lazy teenager, but I wasn’t – I played netball and hockey and it was only before my period I struggled to get out of bed.

On some days I would get a really, really heavy bleed. To the point it would soak through everything and I would have to sleep on a bath sheet, then on others they would be light.

It was mentally tiring as well. It was a nightmare trying to concentrate at school.

Finding the answer

Rachael Dunbar

One year, my periods stopped altogether. An ultrasound found ‘blood’ in my body, but it had disappeared a few weeks later.

A gynaecologist wanted me to go on hormonal treatment, but I felt it was masking the problem, not finding out the cause – I was worried my symptoms were the signs of an underlying health condition.

Although I was still quite young, I had the voice of my mum in the back of my head telling me I needed to find out what was wrong in case I had problems having kids later.

I got told I had irritable bowel syndrome, that I was lactose intolerant, I got tested for diabetes, I got tested for being anaemic, and even Crohn’s disease because I bled a lot when I passed stools which was quite alarming.

One night, I was in so much agony I went to accident and emergency where the doctor suggested I went on antidepressants. I said I’m here because I’m in pain – my legs are throbbing, my knees are throbbing, I’m struggling to sleep I’m in so much agony.

I started thinking ‘maybe it’s my brain that needs scanning – maybe I just think my body is in pain, because none of these doctors seem to be able to find anything’.

During this time, I’d not managed to get pregnant in two years, and when I explained this, I was seen by a gynaecologist. After a laparoscopy, they said I had endometriosis.

Unanswered questions

Now that I had the diagnosis, I thought it would be a lot easier to get answers – but the battle had only just started.

Part of me is glad, because I least I know something is wrong, but another part of me felt it opened up all these doors and questions that no one can seem to answer.

It’s a crushing feeling, like there’s nowhere else to go. It doesn’t matter how many people you’re surrounded by, you do feel really alone. In 2019, I remember driving around in the car thinking, just don’t stop anywhere. Just keep driving. I drove around for hours. I thought ‘I can’t keep going like this anymore’.

I thought: if I’m struggling with this tiredness and pain now, how am I going to care for a newborn? I thought really long and hard. Am I being selfish, should I just accept that this isn’t what my body was meant to do? That was a really difficult question to ask myself mentally – but I really did want a baby.

Although I was worried that because of this illness, I wouldn’t be able to give as much as other people could give their baby, I was determined to give her 100% once she was here.

Jorgie’s arrival

Jorgie and Rachael

We were really lucky to get a positive outcome from the IVF and in January 2020, I discovered I was pregnant with Jorgie.

There were days when I was in agony because I was growing and Jorgie was pulling on where my endometriosis was, and I was scared that I would have a really bad birth. But she came early, exactly three weeks before her due date in November 2020. And really quickly – I went into labour at 10pm, and she was born bang on midnight, meaning she was born at exactly 37 weeks.

I’ve been really lucky – she’s slept through the night since she was about five weeks old. It was tiring getting up in the night to breastfeed, but better than the fatigue that I get with endometriosis.

Mental health wise, having Jorgie has been a massive weight lifted off my shoulders. But I still worry how I will cope as she gets older.

A domino effect

Even without a kid, I want to be able to give my work – kitchen design – 100%. Before Jorgie, I would soldier on through it, then go home and rest, but I can’t do that now.

In the past when I’ve wanted to apply for jobs I know I would be capable of doing, it’s put me off applying when I imagine dealing with that stress on top of this illness. I’m also paying for a college loan right now for a course I wasn’t able to finish.

I want to be able go out with my pals, to go to the football without being in pain.

On the train back from a weekend away with the girls in Newcastle, I realised my period had started – it was on my legs, through my clothes, it was even on the seat of the train. But I still had to walk through Edinburgh station, with my trousers soaking and a big winter coat tied round my waist, to get my train home.

I’m passionate about football and have a season ticket, but if I don’t get the right seat, I have to swap my ticket with other supporters so I can sit down. Your club is making history and I would be cheering – but part of me would be unhappy and thinking ‘you’re in pain, remember?’ I’m not enjoying this as much as I want to be.

Though Jorgie will be absolutely showered with love, I want to give her a happy, healthy mum, not someone who’s grumpy and in pain or can’t go and do activities or fun days out. I've also read that endometriosis can be hereditary – though my mum and granny never had any problem, it does make me worry that Jorgie could go through this as well.

A new treatment would be a weight off my – and other women’s – shoulders, decrease mental health problems, and cost the NHS less; if I’d been diagnosed and treated sooner, would I have had to go through costly IVF to get pregnant?

Endometriosis affects absolutely everything in your life. Even taking just some weight off would have a domino effect.

Wellbeing of Women invests in research to better understand and treat endometriosis. Find out more about our projects here and here.

Follow Endo Warriors West Lothian, an independent support group voluntarily run by women living with endometriosis, on Twitter, Instagram and Facebook.