Hansard

I thank Kenneth Gibson for bringing to members’ business a topic that affects one woman of childbearing age in 10 in the UK, which means that there are approximately 150,000 such women in Scotland alone.

Endometriosis has been described as a hidden disease, although it is as common as diabetes. Too few people talk openly about it, despite the devastating effect that it can have on the lives of so many women. I hope that, thanks to debates such as this one and the publicity surrounding the forthcoming awareness week, that will change. For too long, it has been a subject that has not been openly and frankly discussed. If not quite a taboo subject, endometriosis is certainly a disease that many people suffer behind closed doors.

In stark medical terms, endometriosis is not an infection but a disease, in which tissue similar to the lining of the uterus grows elsewhere in the body, such as in the lining of the pelvis, the ovaries, the bowel and the bladder. The tissue reacts to the menstrual cycle each month and also bleeds. However, there is no way for the blood to leave the body. The result can be devastating to sufferers: inflammation, severe pain, infertility, painful and heavy periods, and fatigue. Those factors can then contribute towards the onset of depression, feelings of isolation, problems with relationships and difficulty in fulfilling work and social commitments.

When preparing for today’s debate I found the story of a woman who has struggled with the condition since she was 13. As for so many women, her diagnosis was far from immediate. A variety of potential causes were suggested. The pain and fatigue around the time of her periods meant that she had to take time off school, then university and ultimately work. After having found a loving and understanding partner, she faced the additional despair of finding that she was unable to conceive.

Another sufferer is a woman from Edinburgh whose words bring home the effects that the condition can have and her determination to reclaim her life. She said:

“Endometriosis has a huge impact on my daily life. The pain is constant and I have now been in daily pain for three years. This has led to not being able to make plans as I wouldn’t know how I will feel from one day to the next. This has affected my relationships with my partner, family and friends but I have been lucky that they have all been very supportive and understanding. My work has been affected and there is a real prospect that I may lose my job due to my illness. I have come to accept that I shall be in pain on a daily basis. I try to remain positive. This debilitating, invisible disease is no longer going to control my life.”

For many others, the constant pain and the unpredictability of their lives can bring on isolation and depression. Not all women have partners, families or friends who understand how their loved one can be so debilitated and fatigued. It is vital that those people are not forgotten. They suffer, and more needs to be done to make sure that they too learn that the subject can be discussed openly, and that support is available to them.

Endometriosis groups, under the auspices of Endometriosis UK, offer a lifeline to sufferers and their families. They offer help, support and advice on how to understand and manage the condition.

It is always good to talk. I am proud that today the chamber has gone a step forward by proving that “It’s OK to talk. Period.”