A Fallin woman has shared her own experiences of the “invisible” impact of endometriosis as part of an awareness campaign for the debilitating disease.
The painful condition affects women of all ages and sees tissue similar to the lining of the womb growing in other places, including the ovaries and fallopian tubes.
A recent survey for the All Party Group survey of the condition in 2020 found that 61% of people with endometriosis in Scotland visited their GP ten times, with 43% having more than five hospital appointments in reason for symptoms.
Meanwhile, more than half – 55% – also said they had to go to A&E due to the impact of symptoms.
Stacey Allan de Fallin has been battling the disease since she was 13 and underwent a hysterectomy at just 25 in a bid to ease her pain.
However, Stacey, now 34, still suffers from regular and painful symptoms and after undergoing several operations related to endometriosis, she no longer has a cervix, fallopian tubes, ovaries or uterus.
Hairdresser Stacey said: “After my hysterectomy, I thought everything would be back to normal. Unfortunately, I still suffer every day.
“The endometriosis is now in my ribs so sometimes I can’t stand or bend over because I feel like I broke my ribs. I also have medically induced menopause as a result of hysterectomy, and I developed a disease that causes bones to become fragile.
“Some days the pain is so bad that I have trouble getting out of bed. I have a high pain threshold but unfortunately I had to temporarily close my salon.
“I have incredibly supportive customers who are so patient and understanding, but of course it’s a concern to close the salon when there are bills to pay. It is not just physical pain that endometriosis causes, it disrupts your life in so many ways and affects you mentally as well. Since my hysterectomy, I have learned more about endometriosis and discovered so much that I wish I had known at the time. I decided to pay to see consultants in Edinburgh and found there were more treatment options than I had imagined.
“Of course you trust your doctor with the knowledge he has. I don’t think anyone meant anything bad, they just didn’t know enough about this condition, and that’s what needs to change.
“It’s an invisible disease that people can’t see, so it can make you feel very lonely. I always tell women on the Endo Sisters Facebook page that they can talk to me anytime, night or day, because I’m so aware of how lonely it can be.
Stacey now runs the ‘Endo Sisters’ Facebook page, which aims to bring together women with endometriosis to share information and support those living with the condition and its effects.
She added: “I started the Endo Sisters support group because I want to support people who need this support at a time when they have little or no answers.
“I can be that person who will reassure you. I don’t want anyone to suffer or feel alone.
“I think GPs need to learn to spot the signs because being diagnosed earlier would have made a huge difference for me.
“But it’s also about treatment, which is being referred to specialists at the right time to get the best possible information from people who have studied and understand the disease.
“If more GPs and doctors understood endometriosis better, I think it could really save a lot of women many years of pain.”