Endo the Battle: ‘I travelled over 2,000 miles for endometriosis care - we need change now’

Four years later, I found myself on a plane again travelling over 2,000 miles for my second surgery in Bucharest.

My story, sadly, is not unique. Too many people are facing the tough choice of long waiting lists, paying privately, or travelling for care.

That’s why today, I’m launching the Endo the Battle campaign across National World’s titles - to make those in power aware of the huge impact this can have on both patients and their families.

As a health specialist, I’ve spoken to people across the UK with very similar stories to mine, who have gone through years of pain before hearing the word endometriosis or who have parted with their life savings and taken out loans to pay for private care either at home or further afield.

That’s why we’re elevating their stories and we want to hear yours. You can anonymously share your experience navigating endometriosis via our survey.

My story

I was eight years old when I first experienced pain in my bladder. When my periods began at age 10, the pain was debilitating, but I was told all was normal, no investigations needed, I was just unlucky.

The pain was always there and my symptoms gradually began to progress, from bladder and period pain, to bowel pain, back pain, nausea and vomiting.

It wasn’t until I was 28 that I got my diagnosis - after sharing my symptoms on social media during Endometriosis Awareness Month I was inundated with messages asking if I had ever been investigated.

Endometriosis has had a huge impact on me. Firstly on my education, I found myself having to leave university on two occasions due to the pain. It also had an impact on my career, as I was unable to keep up with the fast-paced internships.

Before 2019, I had seen over seven consultants, both privately and on the NHS, and endometriosis had never been mentioned as a possible cause of my pain.

When I learnt through social media that I had all the symptoms, I initially tried to seek care in Northern Ireland, but my previous clear MRIs seemed to rule out any concerns for endometriosis.

After connecting with other people in Northern Ireland who had endometriosis I decided to travel to England, where I was lucky enough to be able to access an endometriosis specialist centre where I had a laparoscopy with excision surgery to get my diagnosis.

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The financial impact of travelling was huge. My partner and I used our wedding fund. But this was not the last time I would be in this situation.

In 2023, I was once again travelling this time to the Bucharest Endometriosis Centre in Romania, after having to crowdfund to cover the costs.

I had tried to seek care in Northern Ireland again but found even getting the initial referral was a challenge as I was told ‘adhesions couldn’t cause pain’.

At that point I was desperate, my symptoms were debilitating and worrying. I had rib pain, found walking a challenge and rapidly lost weight as the pressure in my bowel made it hard to eat or keep down food. The nausea and bone-crushing fatigue made life consist of three rooms inside my house. I ceased to exist.

I travelled to Bucharest after a private consultation in London revealed my case was severe. A team of five surgeons worked hard to save my bowel.

The endometriosis was extensive and included rectovaginal disease as well as deep infiltrating endometriosis. I was also diagnosed with adenomyosis and appendicitis - I had learnt to just normalise the pain.

Education is key

With Endometriosis, so much onus is put on patients to raise awareness, to make changes and advocate.

But change is still yet to come. If you woke up with your first symptoms of endometriosis today, you’re not likely to get a diagnosis until 2034.

Long waiting lists and misinformation at every step of the care pathway are common barriers. Education for everyone, from in school to medical students and current medical professionals, is key. We could clear the waiting lists tomorrow but if doctors aren’t aware of the symptoms, nothing will change.

Whilst news that a new medication has been approved for endometriosis by NHS England sounds good in theory, this medication only treats symptoms, will only be available to a small number of patients and does not address the emphasis needed on early intervention.

We need to think of endometriosis as the whole body condition it is and treat it as such. We need multidisciplinary teams, and we need to upskill surgeons.

We want to start saving for our future, not for our next surgery.

If you have been affected by the content of this article or suspect you may have endometriosis, you can find out more about the signs and symptoms and what support is available at the Menstrual Health Project.