A BORDERS woman has shared how the last 47 years of her life have been affected by endometriosis.
First diagnosed with the condition when she was 38, Mary Anne Willow knew she was unwell when she got her first period when she was 12.
“I can still recall my first period – the day of the week, when it was happening, what was going on,” said Mary Anne, 59, of Innerleithen.
She added: “The reason [for remembering] I think is because of the pain. I just put it [pain] down to periods – that’s what periods were like.
“I was 12 years old, it was a Saturday morning, I was due to go ice-skating and I had this horrendous pain and I thought ‘this is it, this is what your periods are like’.
“The word endometriosis, I’d never heard of it. We didn’t have access to the internet then, as we do now.”
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Mary Anne initially went to see her GP about her pain, which would cause her to faint and vomit.
She was told by her pharmacist that she needed a prescription.
Endometriosis is a condition where lining, similar to that of the uterus, forms in other areas of the body.
Mary Anne explained that her experiences of endometriosis include weakness in her bowel and bladder, excessive bleeding, chronic pain, fatigue, and infertility.
In 2011 her bowel herniated and during surgery Mary Anne was given a surgical mesh implant.
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But the mesh was later excised after a scandal erupted in 2017 when a British Medical Journal review revealed 61 manufacturers sold mesh implants with no clinical trials.
Having spent four decades battling the disease, Mary Anne shared how endometriosis affected different areas of her life, including her school years and her career.
“I can remember teachers coming in [to the bathroom] and dismissing it [the pain and heavy bleeding],” said Mary Anne. “No one bothered to take notice of what was going on. I was just seen as a wild schoolgirl who was trying to get herself out of lessons.
“It can present employment problems if you’re needing time off work. It can lead to poor performance because you’re not feeling well, you’ve got pain, you’re tired.
“You can be seen as the unpredictable employee, unreliable employee – I had that to deal with as well.”
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Mary Anne shared that although she is now menopausal, the condition still affects her daily life in many ways.
“Things are starting to calm down, but it’s been 47 years,” said Mary Anne.
“I still have the bladder and bowel problems. I’m very aware of where I go or what I do because I need access to toilets and sometimes that’s not possible – and during lockdown where public toilets have been shut I find myself in difficult situations and that can lead to being embarrassed or humiliated.”
After reading a recent article in the Peeblesshire News, when the paper spoke to another person with endometriosis, Mary Anne said: “[After reading] I felt sad; without sounding like I’m patronising them. I just hope it doesn’t become as traumatic as it has been for me – emotionally and physically.”
Mary Anne recalled a surgical registrar ahead of her first surgery saying: “This is a terrible disease – it’s not cancer but it’s like cancer because it’s invasive and it spreads. And people do not take this seriously, it can affect other organs, other systems.”
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However, Mary Anne is keen to highlight that endometriosis falls on a scale and is graded in its severity – some with the condition experience no pain at all.
March is Endometriosis Awareness Month, and Mary Anne credits her own desire to help others for her courage to speak out about her personal experiences.
She said: “[Endometriosis] is unseen, it’s not a broken leg or a broken arm, it’s invisible. For me, I struggled not being believed. I think that’s one of the hardest things to deal with, when you feel you’re not being believed.
“I’ve found the courage to be able to share and it’s because I want to try and help others appreciate what it’s like living with it [endometriosis] or living with someone that has it, or they know of someone.”
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