A woman was diagnosed with an incurable condition after being rushed to hospital with a suspected ruptured appendix.
Chrissie May Smith, 42, started experiencing "severe lower abdominal pain", back pain and irregular periods when she was 17. Doctors dismissed it as "bad periods", but after collapsing at home "feeling like a knife had cut across her stomach", the woman from Netherley was rushed to hospital with a suspected ruptured appendix. As doctors went to remove it, they found the real culprit - a ruptured cyst caused by endometriosis. The transport worker said: "I was relieved because I knew it wasn't in my head. After being told for so long that something is in your head, when you're only young as well, you start to believe it."
That was eight years after her symptoms started, the average time it takes for people to be diagnosed with endometriosis. Affecting one in ten women and some trans and non-binary people, endometriosis can damage internal organs and the lives of people with the condition. Emma Cox, chief executive of the Endometriosis UK charity said: "Being in severe, chronic pain, and not being able to function properly, has an impact on your whole life. If that's when you're in your formative years at school or early in your career, that will have an impact on how you succeed in life with your education and how you can start work."
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Despite this, little is known about what causes endometriosis, and there is no cure, thanks in part to a lack of research and credibility given to women's health. This lack of services has only been exacerbated by covid, with recent research showing gynaecology waiting lists facing the biggest increase of all medical specialities, according to the Royal College of Obstetricians and Gynaecologists.
The pandemic saw several of Chrissie's appointments cancelled or postponed, even as her symptoms reached the worse point in her life. Chrissie thinks this is because she also has a related condition called adenomyosis, which involves tissue lining the uterus growing into the muscular wall of the uterus. It is the less common and less understood of what Emma calls "the evil twins".
Chrissie's treatment options are limited. She's taken the contraceptive pill and had a hormonal Zoladex implant to manage the pain. She was supposed to have a laparoscopy - a pinhole surgery where a camera is inserted into the affected area - to remove endometriosis tissue, but it had spread too far for her doctor to do it in one operation. She could have a hysterectomy removing her womb, and maybe also the cervix and ovaries, but there is no guarantee it would get all the endometriosis tissue and end her pain for good.
The tissue has grown to her bladder and diaphragm, and wrapped Chrissie's bowel around her uterus, a common consequence of endometriosis left unchecked. The pain has left her bedbound on holiday in Lanzarote, she's lost jobs because of missing work due to flare-ups, and the damage from endometriosis tissue means she can't have kids. Chrissie said: "It literally broke me knowing that I would never have children."
She added: "It's horrible because I think I could have been helped a lot earlier if I would have been listened to, and I think that's the biggest problem - we don't get listened to. So many people see it as 'just a bad period', and it really, really isn't. I people suffer with bad periods, I'm not stupid, but when I have a flare-up, I literally can't get out of bed, the pain is so severe."
Endometriosis UK wants to see the UK government join Scotland's goal of reducing the time it takes to get an endometriosis diagnosis from more than eight years to less than one. Endometriosis UK is also campaigning for the implementation of "age-appropriate" school education about menstrual health and periods, along with a more organised effort to provide specialist endometriosis care across the country.
