‘My body was ripping itself apart from inside out’: Limerick woman recalls her endometriosis journey

Lisa Walsh was diagnosed with stage four endometriosis when she was 28. Picture: Brian Arthur

At the age of 28, Lisa Walsh was diagnosed with stage four endometriosis. 

After being dismissed for years by healthcare professionals in Ireland, she sought treatment in the UK, where she was told the extent of her condition was so extensive, it has spread to both sides of her diaphragm. Now, it has reached her heart.

Her journey began almost a decade ago, when the Limerick woman went to several doctors, complaining of shoulder and neck pain. She was referred to GPs, an orthopaedic surgeon, a neurologist, and a pain consultant who told her she “needed to go to the gym and lift weights” because she “just has a weak shoulder”.

After doing some research of her own, she asked to be referred to a gynaecologist in Limerick. Despite the extent of her symptoms, she was told she was “too young” to have diaphragm endometriosis.

“I went about my way, I believed him. He’s the professional, so surely he'd know. After that, I didn’t really bother fighting it anymore. I've been to all of these people, all of these specialists, nobody seemed to know what is causing this pain,” Lisa recalls.

This article is part of a series on endometriosis. Read more below:

'My gynaecologist actually said to me: 'I can’t help you'': Cork woman sought surgery in Romania after ‘barriers’ faced in Ireland;

Kerry woman fearing medical negligence 'ready to put in a formal complaint';

Woman told pregnancy would help her symptoms[/url];

Comment: Ireland's healthcare system doesn't listen to endometriosis patients.

In 2023, she was hospitalised with right upper quadrant pain, around her ribcage. After doing some scans, doctors found a liver lesion, which they thought was cancer. They also found blood products around the lesion, which “could be linked to endometriosis”. They would scan her again six months later.

However, during this time Lisa sought answers. After a biopsy in the UK which showed the lesion on her liver was benign, she sought an opinion from another gynaecologist in Limerick. A laparoscopy was carried out, and that gynaecologist diagnosed her with stage 4 diaphragm endometriosis.

She underwent excision surgery in a Dublin hospital, and was put into an induced menopause to help with her symptoms. “I was absolutely flying it after the excision surgery because I was obviously still in menopause. I had no symptoms and I thought that I was fixed.

“Fast forward a couple of months later when the chemical menopause was wearing off, the shoulder pain came back and the neck pain. I started to panic because I had excision surgery six months ago and this shouldn't be happening.” 

That’s when she created an online page, now titled Her Voice Project, to share her story and encourage other women to share theirs. Through the page, she found Dr Francesco Di Chiara, a surgeon in Oxford University Hospitals who specialises in thoracic endometriosis.

“I decided I would do a consult with him. He said, ‘Let’s do a surgery, let's go in and see what's going on’. We thought there would only be a few specks of endometriosis left on the diaphragm that the surgeon here missed."

During the surgery, Dr Di Chiara was shocked by what he found.

She said:

He said that the disease was one of the most extensive he'd ever seen, that the right diaphragm was completely covered in disease and would require a major surgery, which would leave me partially disabled.

To see what else could have potentially been missed by doctors in Ireland, Dr Di Chiara wanted to do an MRI to look at Lisa’s heart, chest and pelvis.

“We talked last week and he said that it's on my heart and it's quite extensive and that the surgery would be major, life-changing, debilitating surgery. I’d have no diaphragm because it's all literally disease, and they'd have to cut my heart as well.

“It's a question now of quality of life, so we were discussing whether or not my quality of life is really bad right now to warrant that big of a surgery, and thankfully it's not,” she said.

Lisa Walsh: 'If we do the hormone therapy, is that putting a band aid on a problem that I'm going to have to have that surgery down the line anyway? The surgery will leave me gasping for air, even brisk walking would leave me breathless.'

Because of the extent of her condition, Lisa is limited in terms of her energy levels – and the most simple tasks tire her.

“I need to lie down and rest a lot. A lot of people might think it's lazy, but it's just the fact that my body can't cope. Because my body is too busy fighting off this inflammation that's not meant to be there.” 

Speaking of the help she has received from Dr Di Chiara, she said: “He’s been absolutely fantastic. I've been blessed with him, he's looking for help from his colleagues. He's looking for people's opinions to see what they think is the best route, to weigh up all the options.” 

Now, Lisa is faced with two scenarios which have “left her in limbo”.

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She can either have hormone therapy, which would slow down the progression of her disease, or get life-changing surgery which would leave her “gasping for air”.

“If we do the hormone therapy, is that putting a band aid on a problem that I'm going to have to have that surgery down the line anyway? The surgery will leave me gasping for air, even brisk walking would leave me breathless. 

I could have digestive issues. I could have complications. I'll need rehabilitation from that surgery. I'll need to learn how to breathe again properly. My quality of life will be severely reduced if I was to have that surgery. 

By sharing her experience with the Irish Examiner and Her Voice Project, which she co-runs with Robyn Murray Boylan, Lisa is hoping to shed a light on a condition that “isn’t just a period disease”.

“It's a disease that's affecting my ability to inhale and exhale, it's destroyed my diaphragm, the muscle that you need to breathe, that you need to live.

“The damage is done to the organs, there's no cure. This is what I'm left with. If I was listened to by that guy in 2022 who said I was too young, these mightn't be my options right now. It could have been caught earlier, the damage might have been as extensive. My body was ripping itself apart from inside out.”