Evelyn Tweed MSP has spoken out about her experience of endometriosis and is encouraging other women to come forward for support.
The Stirling MSP was speaking in a debate in parliament last week (Tues 11th January) which showed cross-party consensus for the need for improved awareness, diagnosis and treatment of the illness which affects 1 in 10 women.
A survey for an All Party Group Inquiry into Endometriosis in 2020 found that in Scotland, prior to diagnosis, 61% of people with endometriosis visited their GP ten times with symptoms. 43% of people had more than 5 hospital appointments due to symptoms. And 55% had been to A&E.1
The SNP’s last manifesto made a commitment to reducing the current average diagnosis time for endometriosis from 8.5 years to 12 months.2.
The Scottish Government has since commissioned a report into how to tackle the barriers and challenges associated with the condition, which is due to be released by the charity Endometriosis UK next week.
Evelyn Tweed said:
“I have endured endometriosis all my adult life, resulting in chronic pain and at times, misery. I sought help for many years but the pain I experienced was generally dismissed as normal.
“One day in my late 30s, the pain reached a point where I collapsed at work, was taken to A&E, and finally received the support and diagnosis I needed. I had endured 15 years of pain without an answer. I don’t want other woman to go through what I went through.
“We have to ask ourselves the difficult question of why is something which is so common, so destructive, still so regularly dismissed or undiagnosed? Having that much pain is not normal. Attitudes do need to change.”
Stacey Allan, a young woman from Fallin in Stirling has battled endometriosis from the age of 13. In a bid to ease her pain, Stacey eventually had a hysterectomy aged just 25. Now, age 34, Stacey still deals with regular and painful symptoms. After many operations, Stacey now has no cervix, fallopian tubes, ovaries or uterus.
Stacey said: “After my hysterectomy, I thought everything would go back to normal. Unfortunately I’m still in pain every day. The endometriosis is in my ribs now, so sometimes I’m not able to stand or bend over because it feels like I’ve broken my ribs. I also have medically induced menopause as a result of the hysterectomy, and I’ve developed a condition which causes brittle bones.
“Some days the pain is to the point where I struggle to get out of bed. I’ve got a high pain threshold but unfortunately, I’ve had to close my salon temporarily. I have incredibly supportive clients who are so patient and understanding, but it is of course a worry having the salon closed when there’s bills to pay. It’s not just physical pain that endometriosis causes, it disrupts your life in so many ways and affects you mentally too.
“Since having my hysterectomy, I have educated myself more about endometriosis and found out so much that I wish I knew then. I decided to pay to go see some consultants in Edinburgh and discovered there’s more treatment options than I ever realised.
“You of course trust your doctor with the knowledge they have. I don’t think anyone meant any harm, they just didn’t know enough about this condition, and that’s what needs to change.
“It’s an invisible illness that people can’t see, so it can make you feel very alone. I always tell the women on the Endo Sisters Facebook page that they can speak to me any time, night or day, because I’m really aware of how lonely an illness it can be.
Stacey created a private Facebook group to help bring women together who suffer from the condition: https://www.facebook.com/groups/501374950740127
“I set up the Endo Sisters support group because I want to support people who need that support at a time when they have little to no answers. I can be that person who will reassure you. I don’t want anyone to suffer or feel alone.
“I feel that GP’s need to learn how to spot the signs because being diagnosed earlier would have made a huge difference to me. But it’s also about treatment as well, being referred to specialists at the right time so that you can get the best information possible from people who have studied and understand the disease. If more GP’s and doctors understood more about endometriosis, I think it could really save a lot of women many years of pain.”
Emma Cox, CEO of Endometriosis UK, said: “We welcome the Scottish Government’s commitment to drive waiting times and improve endometriosis care. The average of 8.5 years – and in many cases, much longer – it takes those in Scotland to get a diagnosis is unacceptable. Even once diagnosed, many with endometriosis are not able to get the care they need including access to endometriosis specialist centres in line with relevant NICE guidance.”
ENDS
References
- Endometriosis APPG Report Oct 2020.pdf (endometriosis-uk.org)
- https://www.snp.org/2021-women-manifesto/
What is Endometriosis?
Endometriosis is a condition where cells similar to the ones lining the womb are found elsewhere in the body, usually within the pelvic cavity. Each month these cells react to the menstrual cycle in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. This leads to inflammation, pain, and the formation of scar tissue (adhesions).
For more info visit: https://www.endometriosis-uk.org/understanding-endometriosis
