Endometriosis group offers support to women in Caithness and Sutherland
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Women in the far north who suffer from endometriosis are being assured that they "do not need to feel lonely" following the launch of a local support group.
Kirsteen Campbell set up the Facebook group Endometriosis UK Caithness and Sutherland in January after coping with endometriosis for most of her life. It is a chronic and often debilitating condition that can cause painful or heavy periods and may also lead to infertility, fatigue and bowel and bladder problems.
Kirsteen (40) has spoken about some of her experiences to help promote Endometriosis Awareness Month – and to offer hope to many others who are affected.
Buildings around the world are being lit up in yellow during March as part of the awareness-raising campaign, and Mackays Hotel in Wick is among those joining in.
"I am so delighted that Mackays Hotel is involved and lighting up in yellow for the whole month," Kirsteen said. "The aim is to shine a light in a dark place."
Her diagnosis was made 20 years ago this summer.
"My school years were ruined as I would have on average a week off sick every month as my periods were horrendous – debilitating pain, heavy bleeding, fainting and nausea," Kirsteen recalled.
"In my early twenties, not long after being diagnosed, I was crippled with pain all the time. My quality of life had become very poor.
"I had to give up my job. It was an incredibly difficult time.
"When I was 26, I had my hysterectomy which gave me my life back. I had 12 reasonably good years after that.
"I have just had surgery to remove endometriosis and adhesions again. Surgery seems to help me – I am lucky.
"It is vitally important to get the message out there that there is no cure, but I want to offer hope to others.
"I think in some ways living with this disease has made me stronger and more determined. I had promotion at work last summer, so I want young women to know there is hope that it will not always be difficult."
In March 2020, Kirsteen travelled to the Scottish Parliament for an endometriosis awareness event hosted by Labour MSP Monica Lennon. She was welcomed by local SNP MSP Gail Ross.
Kirsteen said it had been inspiring to speak to others about the condition, and she struck up a friendship with the founders of a support and awareness group called Endo Warriors West Lothian.
"They gave me the strength and inspiration to train as a group leader with the national charity Endometriosis UK," she said. "I trained with them in December and I set up the Facebook group Endometriosis UK Caithness and Sutherland in January.
"We now have over 30 members. We had our first online meeting recently. I want young women in the area to know that they now have support and do not need to feel lonely."
Endometriosis is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month these cells react 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.
Endometriosis can affect all women and girls of childbearing age, regardless of race or ethnicity. The impact can also be felt for life.
One in 10 women of reproductive age in the UK is believed to suffer from endometriosis. The cause is unknown and there is no definite cure.
Ellie Lamont of Mackays Hotel said: “We were happy to help raise awareness of endometriosis by lighting up yellow. A condition that affects one in 10 women must be fully recognised.
"March is the ideal month to raise awareness, with International Women’s Day and Mother’s Day also taking place. It is great to hear there is now a local support group and hats off to Kirsteen for making that happen.”
Two other women agreed to tell of their struggles with endometriosis.
Amy Harrold said: “In December 2014 I started having bad period pains which I had never experienced before. It would make me feel sick – I would be doubled over in pain.
"I was unable to function properly and had to take time off my work. I went to my GP and was told it might be IBS [irritable bowel syndrome] or just bad period pains.
"In July 2017 I was diagnosed with stage four endometriosis through an MRI scan and in September 2018 I eventually had surgery in Aberdeen Royal Infirmary – I underwent a five-hour-long surgery.
"The consultant said my surgery was complex and the endometriosis had grown all over my organs.
"It is such a shame that it takes years for women to be diagnosed or treated for endometriosis, having to suffer in pain, take time off work, and it also affects your mental health. Women need to talk more about endometriosis.
"I also would like to give a special mention to Kirsteen Campbell for creating the Facebook group for endometriosis support in Caithness and Sutherland. It’s a safe place where women can share tips or techniques to help them or others and know that they are not alone.”
Kimberley Sheppard said: “In October 2018 I ended up in A&E with bad pelvic pain and every since that day I have had daily chronic pain, getting worse every four to six weeks with bad flare-ups which are still happening now.
"I must take painkillers daily to get through my day and then during a flare-up even stronger pain relief and quite often have to go to A&E for something that cannot be prescribed by the GP.
"On paper I have suspected endometriosis.
"I have had one keyhole surgery in that time, in May 2018. It is so frustrating that I must take painkillers to get through my day and it’s even more frustrating that it is taking so long to get a diagnosis.
"Endo does not just affect your health. It affects your daily life, your family time, your job and your mental health.”