‘They said it was normal’: Limerick woman shares her story of painful condition that went undiagnosed

A CONDITION as common as diabetes, endometriosis affects 1 in 10 women. In Ireland, it takes on average nine years to diagnose. For Sophie Lynch, it took over 10 years to get a diagnosis.

Endometriosis is a gynaecological disease named after the endometrium, the tissue that normally lines the inside of the uterus or the womb. It is caused when tissue similar to the lining of the uterus grows outside of it – where it does not belong, like on the ovaries and fallopian tubes.

During menstruation, these cells react the same way as those lining the uterus. However, they have no way to escape, and become more or less trapped.

Symptoms can vary, but some are more common than others: intense pelvic cramping, pain during sex, bowel pain, constant fatigue, migraines, nausea, and irregular periods. In some cases, endometriosis can also cause infertility.

Like many, Sophie Lynch, from Old Cork Road, was told her pain was normal.

“They told me that I was unfortunate, that I had bad periods and just put me on the pill and were like ‘off you go.’ The amount of pain was mad. I'd have pain in my stomach, pelvic cramps to the point where it felt like my whole body was burning up as if waves of pain were going through me,” Sophie said.

As part of her symptoms, the young woman experiences painful cramps, her stomach gets “as hard as a rock” as it becomes bloated, and there’s a lot of bleeding.

“It’s just not normal. You shouldn't be bleeding for two or three weeks out of the month.”

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In the summer of 2018, Sophie had her first laparoscopy, and in early 2020, she had a D&C (dilation and curettage) procedure. During the summer of 2020 she had to travel to Dublin to get a second laparoscopy.

Recently married, Sophie stopped taking the pill after the wedding. “Each month, it gets worse and worse. I forgot how much the pill actually helped. For now, all I can do is take really strong painkillers.

“I wanted to come off the pill because I’ve been on it for like 15 years, and it gave me awful anxiety, migraines, and other side effects,” she explains.

To manage her illness better, Sophie looked for a remote-working job. As she struggles to manage the pain, she said: “Doctors basically told me there’s nothing I can do other than get pregnant as soon as possible, which might not happen because of the endometriosis.”

Head of Endometriosis Clinique at the Erasme Hospital in Brussels, and Endometriosis specialist, Dr Maxime Fastrez, explained that the first line of treatment for pain management is medication.

“The most effective drugs against menstrual cycle pain are anti-inflammatories. The second medication that we can use to treat pain related to endometriosis is hormonal treatment, like a contraceptive pill, in order to control the cycle and therefore to control endometriosis,” he said.

As it is not possible to see the lesions unless you have surgery, a laparoscopy is often necessary. “A laparoscopy is an inspection of the pelvic and abdominal cavity. As we are able to diagnose endometriosis with the laparoscopy, the procedure destroys most of the lesions and removes ovarian cysts,” Dr Fastrez told Limerick Live.

Sophie Lynch, pictured above, on her wedding day

According to medical scientist and former Chair of Endometriosis Association of Ireland, Kathleen King, there is a huge gap in the funding when it comes to endometriosis.

“In Ireland, the research is very limited. Even in Europe, it’s quite minimal as well. Anything that is done is on the pharmaceutical side, there’s a massive gap there, especially for something novel.”

To this day, there is still no cure for endometriosis. Even though the condition impacts the day-to-day life of one in 10 women, it is under researched and there is a striking lack of funding.