Endometriosis & Me

Amie Berns MAR23

hen Kilmacanogue mum Amie Berns put together her piece below – in the hope of spreading the word on her debilitating condition – she included a poem.

And the closing line summed up what endometriosis can do to a woman.

‘The pain I feel is in my pelvis, my bowel, my bladder, my back, my ovaries, my womb, and most of all, my heart, because I shouldn’t be living this way because I’m not living at all, I’m merely existing…‘

Affecting one in ten women, the HSE describes endometriosis as ‘a condition where tissue similar to the lining of the womb starts to grow in other places’.

Going onto point out that it can have a significant impact on a woman’s quality of life, the HSE also states that there are treatments available that can help. There is also surgery that would give those suffering with endometriosis a whole new lease of life.

Which is why Amie and others with the condition held a protest in Dublin on Sunday.

It would appear something is being done though. On March 6th, Minister for Health Stephen Donnelly announced the development of the National Endometriosis Framework, a pioneering ‘defined clinical care pathway‘ for those battling the condition– full details here.

In the meantime, here’s Amie’s story…

I have suffered with endometriosis from the day I got my first period at 14. It took five years before a doctor referred me to a gynaecologist who performed a laparoscopy surgery to find endometriosis.

I started experiencing daily pain at the age of nineteen, which I still experience to this day, almost ten years later. I have been told by numerous professionals that the pain could be in my head, just like so many other women have been told. And yet, one in ten women suffer from this debilitating chronic illness.

We suffer day in, day out. For many years I kept silent about my illness as it was a very taboo subject, but I am now speaking not only for myself but for every other women who suffers – and for our future generation of girls, so they don’t have to fight to be heard like we do.

Symptoms I suffer include…

⦿ Painful ovulation
⦿ Painful/heavy periods
⦿ Severe muscle spasms
⦿ Vomiting with pain
⦿ Severe bloating
⦿ Face swelling
⦿ Daily chronic pain
⦿ Fatigue
⦿ Brain fog
⦿ Hormonal imbalance
⦿ Leg pain
⦿ Severe back pain

These are to just list a few. I have suffered for so many years and, unfortunately, Ireland does not have enough awareness around this disease. I have spent many a days and nights in A&E departments in agonising pain only to be told there is nothing they can do and to be sent home.

I get the comment a lot that I don’t look sick but what you don’t see is the debilitating pain that leaves me in tears and feels like someone is ripping my insides apart. The struggle to breath due to the swelling inside my body, the fear of going to see medical professionals in case they don’t believe my pain, and the constant mental battle to get through every day with this torture, and knowing there is no cure.

Endometriosis is an all-body disease and we fight every single day a fight that nobody should have to.

Recently I was in A&E and had to explain to a midwife what endometriosis was, as she had never heard of it, and this has to change. Knowledge is power, and while we fight and advocate for other women, people like you reading this are learning, and that is extremely important.

I am currently awaiting life-changing surgery called excision surgery, where the surgeon does keyhole surgery and removes endometriosis from the root. This surgery is the gold standard for endometriosis patients, but in Ireland, there are very limited surgeons who can perform this procedure.

Finding a gynaecologist who understands our pain is crucial too. If you are suffering in silence, my social media is open to anyone who needs help, advice or support.

As a women who suffers from such chronic pain daily the simplest tasks can be daunting and stressful, such as food shopping, walking long distances, sitting or standing for long periods of time, nail, lashes and hair appointments. As a woman, all these should be enjoyable, but for someone with endometriosis, these everyday tasks can be very hard. I am very lucky that the women who do my hair and lashes at Hair by Lucy are very understanding and accommodating.

I’m also very lucky to have such an amazing and supportive family. I couldn’t get through these days without them by my side; they are my whole world, and I can never thank them enough for all they do. And, of course, my son, Harry, who was my miracle baby. I am beyond lucky to have him in my world, and he makes every day bright and happy.

For this Guide piece, Paul and I had discussed doing a video interview, but my endometriosis flared up. So, I am writing this from my couch, covered in heat packs, hot water bottles and pain killers, hoping not to vomit from the pain. This is the reality of endometriosis.

We shouldn’t have to beg for help, surgery or to be heard, but again, this is our reality. Endometriosis is in the top twenty most painful conditions to live with and we are still fighting to be heard and treated.

I am lucky to be getting help from TDs Simon Harris and Jennifer Whitmore, and here’s hoping the new National Endometriosis Framework has a real impact.

Endometriosis is an invisible illness – you don’t have to look sick to be sick. Imagine yourself sitting in a chair and the pain in your pelvis, back, legs and tummy is so excruciating that you’re afraid to stand up?

Nobody should have to live this way, each and every day having to put a brave face on such pain.

You can find out about endometrosis here, and about the new national framework here. You can also follow Amie Berns on Instagram here and Facebook here, and check out her March 2023 poem here. Below, a new doc produced by Hilary Clinton, Rosario Dawson and others…