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25th Mar 2023

“Unless I knew all the information myself, I would have been lost”: Endometriosis sufferer on her journey

Ellen Fitzpatrick

“I had to go home and basically do my homework.”

March marks Endometriosis Awareness Month, aiming to spread the word on the severe illness and shed light on the impact it can have on so many people.

Endometriosis is a condition that affects those with a uterus. The illness sees tissue that is similar to the lining of the womb begin to grow in other places such as the ovaries, stomach and fallopian tubes.

Roughly 10% of people with wombs suffer from this, which can affect anyone who gets a period, regardless of age – although it is less likely in people starting their periods or those going through menopause.

Menstrual health brand Joii found that 54% of people in Ireland miss out 36 days worth of everyday activities due to their period pain, with 24% of endometriosis sufferers missing out on 86 days due to their illness.

Speaking to Her, 22-year-old Lauryn Byrne opened up about her experience with endometriosis. Lauryn has suffered from the illness since she was 12 and after 10 years, is now only getting the treatment she desperately needs.

“As soon as I wake up, I know if it’s going to be a pain day or not. Since surgery, I probably have about one week out of the month that I’m okay,” Lauryn said.

Lauryn first felt symptoms of this when she was only 12 years old and was originally put on pain medication before eventually the contraceptive pill. While the pill can mask these symptoms, she found herself in A&E multiples times by 16 and eventually had to do her own research into endometriosis.

Upon learning more, Lauryn approached her GP and they went from there, eventually getting a diagnosis and the much-needed surgery by the age of 22.

“It is quite a difficult disease to diagnose because the doctors try to cross off every other option there is. I was constantly told there was nothing wrong, I was never believed. One doctor mentioned endometriosis and it was the first time I’d heard of it. I did my research online and booked in with a private gynaecologist. She did a scan and said ‘you’re too young to have endometriosis’,” Lauryn said.

“I collapsed in work and thought ‘this can’t be normal’, that’s when I started my journey to find a surgeon. It was six months ago now that I was diagnosed with stage three endometriosis.

“I had to go home and basically do my homework. I had to do all the research myself, find out what doctor to refer me to, I had to find surgeons. I had to ask for my informational files from my GP, write all the medications they have ever given me, think about all my symptoms.

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“Unless I knew all the information myself, I would have been lost. I don’t think GPs know enough information about it at all in Ireland.”

Lauryn has stage three endometriosis and is currently out of work due to her surgery and unlike other European countries, Ireland does not allow for sick days due to this. As well as this, Ireland is not equipped for this type of illness and dealing with the diagnosis and aftercare of endometriosis.

“I took on a new job two weeks after a major surgery because I didn’t know what the next few months would entail. We need aftercare. In Ireland, we don’t have the experienced surgeons that can deal with such cases of endometriosis. We don’t have the disciplinary teams. Ireland does need to step it up, they need to educate GPs on endometriosis,” she added.

“We need schools to be educating more than just the period talk you get and we do need funding. There’s no research in Ireland.

“If it’s something that happens to so many people, then jobs and employers should be aware of it and put things in place like days off you can take and don’t have to use up your holidays.”

According to the HSE, the main symptoms of endometriosis are:

  • pain in your lower tummy or back (pelvic pain) in the days before your period starts and pain that usually gets worse during your period. The pain is worse than ‘normal’ period cramps and can be hard to control with basic pain medication
  • period pain that stops you from doing normal activities or causes you to miss social events
  • pelvic pain that also happens at other times of the month when you are not menstruating (such as midway through your cycle)
  • heavy bleeding during your period – you might use a lot of pads or tampons, or you may bleed through your clothes
  • pain during or after sex
  • pain when peeing or pooing that is worse during the time of your period
  • feeling sick, constipated, having diarrhoea, or blood in your urine during your period
  • difficulty getting pregnant

Lauryn says from her experience that extreme pain, vomiting, brain fog, headaches and fainting are not normal period symptoms and should be discussed with your GP.

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