Lisa Walsh experienced shoulder and neck pain almost a decade ago when she was 19. She went to doctors and underwent tests, but it all kept coming back as normal.
Aged 25, the pain was worsening. She suspected she had endometriosis, a disease in which tissue similar to the lining of the uterus grows outside the uterus, but was told she was “too young”, she said.
Finally, in 2023, the Limerick woman was diagnosed with stage four endometriosis, and the disease has spread to such an extent, she requires the removal of her right diaphragm.
“It’s so frustrating and isolating to know there’s something wrong with your body but to not be believed,” the now 28-year-old said.
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According to the World Health Organisation (WHO), endometriosis is a chronic disease associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety and infertility.
There is no known cure for endometriosis and treatment is usually aimed at controlling symptoms.
For Walsh, however, her condition is diaphragmatic endometriosis, a rare form of the disease, in which tissue that resembles the uterine lining, called the endometrium, grows on the diaphragm. She had heard of endometriosis prior to her diagnosis, but she, like many people, did not realise it could grow outside the pelvic region.
She underwent diagnostic testing in January of this year. As part of her treatment she was placed on induced menopause for six months. In May she had excision surgery, in which a consultant gynaecologist removed the endometrial cells.
But soon after, the pain in her shoulder returned, a symptom, she was told, of nerve irritation caused by endometriosis. Realising the surgery in May focused on her pelvic area, she decided to book a consultation with a thoracic consultant, based in Oxford, to see if there was some endometriosis up higher in the body that was not removed in the surgery.
“I thought it would make sense to have a thoracic specialist to have a look to see if anything was missed. I thought it would just be a few little bits but I was shocked by the findings. He said if he removed my diaphragm and opened it like a book, it would be all endometriosis,” she said.
If I was believed 10 years ago, maybe it wouldn’t be this extensive. This surgery was my third one this year and I’m facing another two. And that’s why I’m so angry because where does it end?
As a result, her consultant has recommended she undergo open surgery to remove her right diaphragm and replace it with mesh. Keyhole surgery is required on the left diaphragm. The open surgery, however, will leave her permanently disabled.
“I’m leaning towards the surgery because the endometriosis will just keep growing. It could wreck the left side because the left is salvageable at the minute and the right side is just too far gone. So if I don’t do anything then the endometriosis will get worse and it will just make holes in the diaphragm. Then the diaphragm might just collapse and break. It’s been traumatic,” she said.
“I will be mobile but I won’t be able to exert myself as much. Like I wouldn’t be able to jog down the road because I’d be too breathless. I’ll need assistance from a walking aid on the bad days because when I will get a period, it might get sore again. And I’d have a wheelchair for the really, really bad days. But it’s mainly just catching my breath that it will affect.”
Last August she set up an online community called the Éire Emerald Collective, which allows other women who have been diagnosed with endometriosis, adenomyosis and PCOS to meet and discuss their difficulties both with the conditions as well as with getting a diagnosis.
This has created a great sense of solidarity, she said, due to how isolating the process can be. They’ve started a campaign called #BelieveHerPain.
“We get messages from women saying that we’ve really helped their mental health. When you’re disregarded, you feel invisible. But when you come to the page, they feel seen and heard,” she said.
Ms Walsh said early diagnosis and prevention before the disease spreads was “so, so important”.
“How many times do women have to lose organs to be taken seriously? That’s why I kind of wanted to be screaming and shouting from the rooftops and getting the word out there,” she said.
“If I was believed 10 years ago, maybe it wouldn’t be this extensive. This surgery was my third one this year and I’m facing another two. And that’s why I’m so angry because where does it end? This could have been prevented, my expenses, my case, it could have been prevented. So yeah, it makes me very, very angry.”
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