‘Doctors said my symptoms were all in my head’
After years of agony with endometriosis and being fobbed off by medics, two women share their stories
I It takes, on average, 8.5 years to be diagnosed with endometriosis in Scotland. For more than 250,000 women across the country, that can mean 8.5 years of misdiagnoses, debilitating pain and shame.
On top of that, it is estimated that the UK economy is losing £8.1 billion every year as a lack of understanding surrounding the disease means symptoms are forcing women out of work.
The NHS’S current definition of the disease is “a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes”, but for those who live with it, it is far more than that.
We spoke to two women about their own journeys with the condition and what they are doing to try and help others on theirs.
Kirsty Harris
“I remember texting my mum saying, ‘mum, I’m dying’.”
And she would have, if her mum hadn’t rushed to the hospital. Kirsty Harris had lost count of the number of times she had been admitted. This wasn’t the first time a UTI caused by her endometriosis had led to a kidney infection, then to sepsis, then to pneumonia. It also wasn’t the first time she wasn’t taken seriously by medical professionals.
“I had paramedics come to my house when I had an infection from a ruptured cyst,” said Kirsty.
“I was in bed, in agony, but they said they couldn’t bring the stretcher in. I get myself down the stairs with the help of my husband, vomiting and crying, going down the stairs on my bum. I got to my front door and paramedics standing on the drive rolled their eyes. When I got to hospital, they realised I was septic.”
Kirsty started having “problem periods” when she was 12, but she wouldn’t find out why for two decades.
She said: “I didn’t really know what it was or that it was anything more serious than a nasty period. I experienced very heavy bleeding and very painful, significant cramping pain. I became anaemic because of that, I would black out and faint. I had multiple ovarian cysts that ruptured, interstitial cystitis, UTIS, pain in my legs, migraines, hip pain, back pain, problems
Dr Kirsty Harris, far left, has written a book and Tao Mccready, left and above and, right, after one of her surgeries, has set up a support group.
with my bowels, bloating to the point of looking really heavily pregnant, difficulties with sex, all kinds of things.
“It became apparent my problem periods were a much bigger problem and we started to talk about things like endometriosis and adenomyosis, which were my diagnosis in the end.”
Three years ago, Kirsty had a hysterectomy and full excision surgery, during which surgeons removed all of the endometriosis they could find. It was widespread, including on her bowel, and she lost one of her ovaries.
Though her day to day life looks better after surgery, Kirsty feels endometriosis robbed her of a life she could have had. She said: “I was 16 when I was told I probably wouldn’t be able to have a baby. All my relationships had that in them; when I met my husband, I felt like I needed to tell him. What if he didn’t want to be with me?
“We tried for a baby earlier in our life than we would have had I not had those messages. We were fortunate to conceive relatively quickly without assistance or intervention, but my pregnancy was complicated. “I had my daughter eight years ago. I was very pleased to have her, but often we think about fertility as singular, you have a baby and you can cross it off. But actually it is much more complicated than that. When she was 18 months old a cyst ruptured and damaged my fallopian tubes. I was told I was high risk of ectopic pregnancy, which can be life threatening. That was when I had to start thinking about hysterectomy. “I gave up the life and the decisions I would have had because of endometriosis. I think I did grieve for not being able to have more babies and for not feeling like I really had a choice as to whether I would or not.”
During her battle to be properly diagnosed and treated, Kirsty was able to call on her profession as a clinical psychologist, but she knows many other women won’t have that knowledge behind them.
“I struggled with the distress of the condition, the internalised shame and stigma, feeling like it was my fault, feeling like I was failing to cope with a normal problem, so I became very critical of myself,” said Kirsty.
“I think had I not been able to take the learning from my job, I would have become more depressed. It didn’t make the distress go away, but at least I had a way of understanding it.”
To help in the fight for better education and understanding, Kirsty has written Coping With Endometriosis, part of a series on different conditions by Association of Clinical Psychologists.
“I wrote the book that I needed and wanted 10 years ago,” said Kirsty. “I also wrote it for my daughter, I never want people to say to her the things that were said to me, that she’s making it up or it’s in her head or she’s exaggerating. There are incredible people in the NHS; the consultant who did my last surgery changed my life. If one person isn’t the right person, doesn’t listen or doesn’t get it, keep going, because those healthcare professionals are out there. Keep trying.”
Tao Mccready
“I went to my GP numerous times from the age of 13 and they basically didn’t believe me. For 17 years,
I was misdiagnosed with conditions like a bad back, kidney infections, IBS and even borderline personality disorder.”
Tao Mccready was finally diagnosed with adenomyosis and severe endometriosis on her 31st birthday, by which point it had spread beyond her womb and ovaries to her bowels, sciatic nerves, rectum, bladder and pouch of Douglas. She is currently undergoing tests to see if it is also on her kidneys and left arm.
“I manage my symptoms with a mixture of medication prescribed by the doctor, including morphine, hydrocodone, diclofenac, but also by going down more of an alternative route,” said Tao.
“I do mindfulness, yoga and watch what I eat. It’s difficult. I am a huge hippie, so I love being in nature. I do a lot of cold water swimming, particularly in the winter months, but a lot of it is distracting myself with the work that I do with endometriosis.” In 2023, Tao set up Endo SOS, the first and only endometriosis support and awareness charity in the south of Scotland.
She said: “When they told me I had endometriosis, I asked my GP what that was and what can be done and they said ‘take more painkillers and go Google it if you want to find more information’.
So that’s exactly what I did. I started to look online but what I found very difficult was to distinguish between what was opinion and what was fact. I started attending seminars and speaking to specialists worldwide. I decided that I could either sit back and do nothing, or do something myself.”
Endo SOS aims to support individuals living with endometriosis by being a dependable source of information, blending scientific accuracy with lived experiences. The team of volunteer endometriosis wellness practitioners doesn’t just want to spread awareness, but to offer strategies for managing the condition in everyday life. Tao is currently working on the new endometriosis policy document for the Scottish Government.
“I won’t lie, it can be very difficult, but if you’re not doing it for yourself, you’re doing it for the other women who haven’t been heard or feel like they haven’t been heard,” said Tao. “That’s the drive, that’s what keeps me going.
“I think for many of us in the older generation it’s too late, but it’s never too late to help the next generation. Not only are they the next patients with endometriosis, they are the next doctors, the next nurses, the next teachers, the next carers, the next lovers. This isn’t just a woman’s condition.”
Tao still lives in chronic pain and struggles with fatigue and migraines on a daily basis. The length of time her endometriosis went undiagnosed meant her fertility was impacted, but after years of unexplained miscarriages, a “miracle” occurred.
“I was told we would most likely not be able to have children naturally,” she said.
“The day of our first IVF appointment, I had been experiencing vomiting and nausea – I had been put on into medical menopause a month before to prepare my body to go through IVF. The doctor did an internal scan and there was my child. He had survived medical menopause and he managed to stay there. Micah is two and a half, he is our wee fighter, our little miracle.” Tao added: “The woman’s body is incredible. I hope that with stories like mine we can at least keep the positive aspect in there. I think a lot of people believe that once they finally have their diagnosis, that’s it, but actually unbeknown to them, it’s just the start of their journey. It is then about learning to manage your condition as best as you can in the way that suits you.”
To find out more or seek help go to: endosos.org; menstrualhealthproject.org.uk; endometriosis-uk.org.
Coping With Endometriosis by Dr Kirsty Harris (Sequoia Books) is out now, £16.99