Meeting of the Parliament (Hybrid) 11 January 2022
I congratulate Rachael Hamilton on securing this important debate. So much has already been said about the impact that endometriosis has across all aspects of life, but I make no apology for repeating some of what has already been highlighted today.
I want to start by outlining exactly what is at the heart of this discussion: the lives of women and girls. Endometriosis is a condition in which tissue similar to that in the lining of the womb starts to grow in other places, such as ovaries and the fallopian tubes. Symptoms include, among others, painful or heavy periods, painful bowel movements and pelvic pain. An estimated 1.5 million women in the United Kingdom are affected, which is similar to the number of women who have diabetes.
However, as we have heard, it takes an average of eight and a half years to receive a diagnosis, which means eight and a half years of pain, of missing out, of uncertainty and of explaining. How tiring must all of that be? Relationships break down because the pain and struggle are too hard to comprehend. There is the misogynistic dismissal of so-called women’s issues and people saying that it is just painful periods or, even worse, that it is perfectly normal for women to experience pain.
There are long waiting lists and a postcode lottery for treatment. There is a serious problem with delays in getting an initial appointment with a consultant, and Covid has only made the long waits even longer. Non-urgent appointments have been delayed because of Covid, but, for patients, endometriosis is not non-urgent.
One person told me that, although their GP has been good, before being referred to a consultant, their daughter had to go through various other options to rule out cysts, irritable bowel syndrome and food intolerances. More than a year after their GP’s referral, they are still to receive an appointment.
I have also been told by women that endometriosis has made them infertile, and how the inability to have children has affected their marriages. As many as 30 to 50 per cent of women who are affected by infertility have endometriosis.
I have heard stories of women spending years on painkillers that do not help. One woman had to have an ovarian tumour removed, but it turned out to be not cancer but endometriosis. The tumour was the size of a small orange. She eventually had a full hysterectomy after years of struggling with chronic pain.
The Scottish Government’s women’s health plan is set to directly address endometriosis. We must ensure that the plan improves lives and shortens waiting lists. Endometriosis has no definite cure, and the cause is still unknown, so we need to support research to better understand the condition and develop more treatments.
As we have heard, support is available, including from the north Highland support group for Endometriosis UK. I met its development officer Kirsteen Campbell, as the group’s support network includes Shetland. A midwife and former constituent of mine lived with chronic pain for years before being diagnosed and starting treatment for endometriosis. With the help of the charity, she started a petition for menstrual wellbeing to be taught in all Scottish schools. It is important for both boys and girls to learn how female bodies work so that we can all better understand and support those with conditions such as endometriosis, polycystic ovary syndrome and premenstrual dysphoric disorder. Those medical terms will rightly sound mystifying and scary to many, so, like my former constituent and Endometriosis UK, I want to encourage openness about what is and is not normal for those who are menstruating.
Unfortunately, too many people are led to believe that their debilitating symptoms are something to put up with and so they end up spending too many school days in bed suffering from intense pain. If our young girls are forced to take one week off every month with debilitating pain, they will miss out on much of their education and be radically behind their schoolmates.
Encouraging openness and breaking down taboos around women’s health issues so that women who are affected know when to seek help is important. Misconceptions need to be addressed and medical staff need training to spot the signs of endometriosis sooner. Plainly, we need to do better than averaging eight and a half years for a diagnosis for endometriosis but I am sure that, working together, we can make progress.
17:50