A 28-year-old Edinburgh woman is facing a hysterectomy as she battles a debilitating condition that has “ruined her life”.
Lisa Thomson suffers from severe stage four endometriosis – a condition where cells similar to those of the lining of the uterus grow in other parts of the body – and is “living in pain every day”.
She wants to spread awareness about the disease to advocate for better treatment and end the stigma around discussions on women’s health.
The nurse grapples with heavy periods, persistent exhaustion and bloating, and chronic pain in her back and stomach.
Lisa – originally from Balerno and now based in Winchburgh – had to self-fund £30,000 with her parents for surgery only to be told her uterus will likely need to be removed in a few years’ time.
She told Edinburgh Live about hearing the news from her doctor, saying: “I just broke down in tears. It’s hard because no one in my family has gone through this. It’s a lonely place. My friends are settling down and having children. It’s that life you long for and I don’t know if I’m ever going to get that.
“There’s no rhyme or reason for me having endo. It’s not genetic. I’m one of the unlucky one in ten. It’s disgusting there’s not more awareness and not more treatment options.”
Lisa wants to advocate for more awareness of the condition -Credit:Supplied
Endometriosis (endo) can cause the growth of lesions in areas like the ovaries, fallopian tubes, pelvis, bladder, and bowel. In severe cases, the removal of the uterus may improve some symptoms.
Lisa began struggling as young as 12-year-old. She said: “I sit at a good seven to eight [out of ten] in pain every day. When I’m on my period or having a flare up, it’s off the charts.”
She has since undergone surgery to remove lesions – during which surgeons discovered her bowel had nearly fused to her uterus. She also endured medically-induced menopause last year to reduce her estrogen, which feeds endometriosis.
The now-28-year-old added: “They tried to induce menopause but the symptoms were horrific. It’s a very isolating experience to be 27 and in menopause. I had hot flashes to the point I had to strip off, was in a hell of a lot of pain, and I wasn’t sleeping. I felt like I was a stranger living in my own body.”
Since surgery, Lisa’s lesions returned with a vengeance. With few treatment options left, she has found herself facing a handful of harsh choices. They include medical menopause, trying for pregnancy – which may also alleviate symptoms – or hysterectomy, the latter of which she called “soul destroying”.
Lisa continued: “It’s something that will be happening for me. It’s a matter of when.
“I’ve longed for a family, it’s something I really want, but at 28 when you’re single, it’s a mad conversation to be having.
Lisa has undergone surgery for her severe stage four endometriosis -Credit:Supplied
“[Endometriosis] has ruined my life. I see people my age travelling the world and 90 per cent of the time I’m stuck in bed taking pain killers. I feel I’ve not been able to live these early years doing what I should be doing. It’s a very lonely place.”
The nurse paid homage to her mum who she called a “rock”, adding: “Without her I feel I’d be in a very dark place. She’s stuck by my side and been my shoulder to cry on through what’s been a minefield to navigate.”
Endometriosis affects around one in 10 women, according to Scottish Government figures.
Despite this, it takes eight and a half years on average to get a diagnosis of endometriosis in the UK, as per a report from the All-Party Parliamentary Group on endometriosis.
The disease is incurable, according to Endometriosis UK.
Lisa wants to spread awareness that better treatment options are urgently needed. She said: “There doesn’t seem to be any progress in treatment. They’re able to find cures for some cancers and we’re still out here [waiting].
Lisa’s mum has been a huge support -Credit:Supplied
“The pregnancy and menopause options are tough and the hysterectomy option is soul destroying. None of those options should be okay.
“It baffled me with how advanced science is in this age and they still can’t do anything to help those who struggling with endometriosis.”
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