‘You’re not alone’: woman keen to raise awareness after adenomyosis diagnosis
Kira Spofforth has opened about her battle with the painful condition and says ‘being able to advocate for yourself is so important’
A LERWICK woman is urging others to “advocate for themselves” after spending a decade being told a painful gynaecological condition was “just heavy periods”, writes Chloe Irvine.
Kira Spofforth, 26, was diagnosed with adenomyosis in January – a condition that can cause severe cramps, chronic pelvic pain, heavy or prolonged periods, and extreme fatigue.
She is also suspected to have endometriosis, though this cannot be confirmed until she undergoes surgery.
Both conditions involve tissue (similar to the uterine lining) growing where it shouldn’t.
In endometriosis, the tissue grows outside the uterus on organs such as the ovaries or bladder. Adenomyosis, however, occurs when this tissue grows inside the muscular wall of the uterus.
Although Kira only received her diagnosis this year, she believes she has lived with symptoms for most of her life.
For years, her symptoms were dismissed as “just heavy periods” that were “bound to be sore”, despite the severity of what she was experiencing.
“I pass out sometimes from how sore it is. When I was about 16, I would go in the shower, and it would seem so hot I would get out and fall to the floor.
“If I was standing up for a long time the pain would get worse and worse, I would start blacking out almost.”
She also experienced symptoms she later learned were more typical of adenomyosis.
“I would say ‘I’ve got pain in my hips, but it’s not always the same hip’. It would go from one side to the other. That’s one thing the symptoms of endometriosis don’t really cover.
“I didn’t know how this pain was jumping from one place to the other and it turned out it was the adenomyosis.”
Her periods were not only painful but extremely prolonged.
“Seven days would be the least for me,” Kira said. “Sometimes it would even be more, and it’s always been like that.”
Then, last November, her health took a “turn for the worse” – including bleeding every day for half a year.
“I’ve been on and off every single pill, injection and contraception under the sun.
“I ended up getting the coil in November and it had a really bad effect; I was in so much pain when I got it.
“After that, I bled every single day non-stop for about six months. Sometimes it would be heavy and sometimes it wouldn’t be, but it was every day non-stop.”
The constant bleeding caused her condition to “flare up” even further – but removing the coil was complicated by her place on the waiting list for endometriosis surgery.
“I asked them if I should remove the coil, but because I’m on the waiting list for surgery for endometriosis, they say when you have the surgery the coil is supposed to help.
“It’s a bit of a catch-22. You just don’t know what’s going to help it and what’s not.”
After years of feeling dismissed, Kira eventually found a doctor who played a crucial role in getting her diagnosis.
“She makes a real effort to see how I’m getting on and if I’ve heard back from gynaecology,” she said.
“I’m lucky to have found someone who is advocating for me because I didn’t have that for a lot of years.
“I think a lot of people do get dismissed because it’s a women’s issue.”
During this period, all she wanted was “answers”. An ultrasound finally provided them.
“They were doing the internal exam and [the two people doing the scan] looked at each other and said ‘it’s adenomyosis’ – they could see it on the scan. I’d never heard of it before.”
The diagnosis brought a sense of relief after years of unexplained symptoms — but it also came with unsettling news.
While treatments can help manage symptoms, Kira was told the only “cure” is a hysterectomy.
“I feel like there hasn’t been many studies on adenomyosis. It seems crazy to me that the first option they give you is a hysterectomy because that’s so life‑changing for somebody.
“I’ve been told it’s pretty much just pain management until you get to the point where you’ve had your bairns.”
She is currently on “pretty strong” painkillers, which come with difficult side‑effects.
“You’re already exhausted from having this pain, then you’re taking these painkillers that make you feel drowsy,” Kira explained.
“I was in bed the whole of last weekend because I physically could not bring myself to get out of bed.
“As soon as I’ve got two days off that’s me, I’ll sleep 14 hours and even that won’t feel like enough, it’s exhausting to deal with every day.”
Kira has since been pushed forward for endometriosis surgery after “bursting into tears” while explaining the daily impact of her condition.
But waiting lists remain long — around a year for isles patients, and up to five years if more extensive surgery is required in Aberdeen.
She hopes her story encourages others in a similar boat to trust their instincts and push for a diagnosis.
“Everyone knows their bodies better than anyone else,” Kira said.
“It is disheartening going to the doctors and feeling dismissed, but you know yourself if something’s wrong. Being able to advocate for yourself is so important.
“It might not be the diagnosis you want, but at least you’ve got answers and there’s other people out there you can relate to.
“You’re not alone, there’s other people experiencing the same things as you and I think it’s important we speak about it,” she added.
Information about adenomyosis can be found on the NHS website.
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