AN SNP councillor is calling for a nationwide campaign to raise awareness of endometriosis after years of suffering from the debilitating condition.
Stacey Devine has put forward a motion at the SNP conference for action to improve the diagnosis and treatment of the disease.
She suffered crippling symptoms of endometriosis for years, which have left her in bed for days at a time and had a huge impact on her own life – affecting her mental health, relationships, career, finances and social life.
In April this year, the 36-year-old took the decision to undergo a hysterectomy to relieve her of the chronic pain.
Now she hopes that that by raising the issue at SNP conference, her own experience will help others who have the condition.
She told the Sunday National: “My story is not unique – there are millions of women out there going through the exact same thing and I think by using this motion to give it this platform at a national level – the highest decision-making body we have as a party – sends a huge message to women who are out there suffering day in and day out – we hear you, we see you.
“We know what you are going through and we will try to do something about it.”
Endometriosis is a disease where tissue similar to the womb’s lining grows in other parts of the body, such as the ovaries and fallopian tubes.
If left untreated, endometriosis progresses over time, so being undiagnosed can cause further damage to the bladder, bowel, fallopian tubes, ovaries and other pelvic organs.
It is thought to affect around one in ten women – but on average, it takes eight years from the onset of symptoms to get a diagnosis.
Devine, who was elected last year as SNP councillor for Bo’ness and Blackness, said her symptoms had included heavy menstruation, chronic pain, sickness, bloating, problems eating and sleeping, headaches, painful bowel movements and painful intercourse.
She said: “Some of the biggest issues for me have been heavy menstruation and the chronic pain.
“When you are living in such chronic pain, it has an adverse effect on everything else, from just being able to do simple daily tasks to being stuck in bed for days on end because you physically can’t move. “The menstruation would come on in a blink of an eye, so it has been very restrictive in what I can and can’t do – never being able to take my daughter swimming.
“It is a very difficult thing to manage – the embarrassment, always having to lug huge big bags about with you with changes of clothes. “You feel like every time you go and seek help, it’s a constant battle.
“There is a lack of understanding that GPs have on this issue and a lack of specialists out there to deal with it.”
Devine, who has two children, said she had pushed to get the hysterectomy – which was complicated due to the extent of the endometriosis – as she did not want to face any more years of living in pain.
She said it had helped ease symptoms, but she was now having to deal with the menopause as a result of the surgery.
“Before I could never plan to go away on girls’ weekends or go away with the family,” she said.
“After I had my hysterectomy in April, I was able to go away on a family holiday, just for the weekend. It was a wee log cabin and being able to freely walk about, jump in and out of the hot tub, wear a dress with no shorts and padding on, it was liberating. “It is life-altering, but I made the decision to have my ovaries taken too, as I wasn’t willing to go through any more. “I’m back on my feet now – the answer isn’t always a hysterectomy, it’s got to be right for you.
“But I had got the point where 20 years of my life had been in constant pain, I didn’t want the next 20 years to be like that.”
She added: “Menopause is hell. I now have a new battle of finding the right hormone balance for me and finding out what works and what doesn’t work.
“But I’m not doubled up in pain.”
Devine will be speaking for the first time at conference when she puts forward her motion in a week tomorrow, and hopes it will lead to the launch of a national campaign on the issue.
“Ultimately as politicians, we are supposed to help change lives and if this motion can do that I will be over the moon,” she added.
“It’s too late for me – but it’s not about me, it’s about trying to help other women who have stories like me have a better life quality. “We need to raise awareness and get early diagnoses.”
