‘I wanted to make sure no one else would have to wait nine years for a diagnosis’
Endometriosis sufferer Kathleen King wants to educate society about the painful condition
Kathleen King: “Accurate information is essential in any condition, but especially in endometriosis. Life-changing decisions can be made due to the wrong information.”
Having suffered from the crippling condition for 29 years, the Donegal woman, who lives in Letterkenny with her partner Charlie, took over the role in 2013 and, although it is a small group, the charity offers support to hundreds of women around the country who suffer from this chronic and very painful condition.
Despite suffering on an ongoing basis and enduring several surgeries, King’s work, both as a medical scientist and with the EAI, has seen her devote more that 20 years to others with the same condition.
We asked the ‘Health Hero’ a few questions about how she keeps going.
1) What is your proudest achievement?
“Our information day in 2017 was a truly amazing day – we had speakers, therapists and attendees from Ireland, the UK and the US and it was organised and run entirely by volunteers. It was such a positive day and a wonderful way to put faces to all the names we meet online.”
2) What motivates you in your work and life?
“Pain, delayed diagnosis, young women living in silence and being referred to psychiatric services ahead of gynaecology. I initially used my anger over my delayed diagnosis to drive me as I wanted to make sure that no one else would have to wait nine years for a diagnosis or be shamed and scolded for reporting painful periods to their doctor. As I progressed with my condition, I trained under the Stanford Self-Management Programme for Chronic Diseases and learned not only to become a good self-manager, but also how to pass these skills on to others.
“Accurate information is essential in any condition, but especially in endometriosis. Life-changing decisions can be made due to the wrong information. I feel a personal responsibility for each one of our members and support group members and like to know that they are making informed choices about their treatment.”
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3) What do you do to keep mind and body healthy and well?
“I use the beautiful countryside to exercise and mindfulness meditation to try and ground me. I have a wonderful relationship with my GP and pain management consultant and follow my medication regime very carefully. I follow a vegan lifestyle and find that changing my diet was the best thing I have done. Charlie and I experiment with fermenting foods, making wine and hopefully soon growing our own veggies. The Donegal air and landscape is second to none and when the sun shines, it is heaven.”
4) What are the most important factors to maintain a healthy society?
“Health literacy is an essential for a healthy society, I have spoken to countless women over the years who don’t have a grasp of how their menstrual cycle works. Understanding how the body works, even at a basic level, allows us to pick up when something is wrong. In the age of wearable technology and apps to track our every move and indeed our menstrual cycle, there are great opportunities to learn about our bodies and how to optimise health and happiness. In addition, we are truly what we eat and the availability of local-grown fresh foods is essential. A happy, healthy body leads to a happy healthy society.”
5) What needs to be done in Ireland to achieve this?
“I would love to see health education and science introduced formally at an earlier stage in schools. As a child, I was fascinated by the human body and knew I wanted to work in a medical field but it was only at the end of secondary school that I discovered medical laboratory science as a career.”
6) What do you think is the most pressing health issue in Ireland today?
“As a medical scientist in a general hospital, I can see that there are many areas of deficiency in terms of national health. But as a woman living with endometriosis, I am going to have to prioritise endometriosis. Women are still being dismissed at primary and secondary care – this leads to a delay in diagnosis. This can lead to progression of symptoms and the disease. This decline in quality of health is significant and for many women assisted reproductive techniques are required to help them conceive.
“In Ireland, there is a nine-year average delay in diagnosis. For many women, they have attended multiple doctors and even multiple gynaecologists, but many are not believed, their pain is not taken seriously and is dismissed as ‘period pain’ until they are willing to try to conceive. Endometriosis can only be diagnosed via a laparoscopy which is considered invasive and we have only a small number of surgeons dealing with a high number of endometriosis patients [in Ireland]. There is still international debate over the best available treatment; some surgery is available here but many women travel abroad using the HSE cross-border scheme to obtain laparoscopic excision surgery with surgeons who have a high number of endometriosis patients in the UK and Europe. ”
7) How do you think the Minister for Health needs to tackle this?
“Write endometriosis into the Relationship and Sexual Education programme; tell young girls from the onset that severe pain that causes them to miss school, college, family events, or work is not normal.
“A centre of excellence for the treatment of endometriosis with skilled gynaecologists, colorectal surgeons, urologists, endometriosis nurses, advanced imaging, pelvic physiotherapists, counsellors and patient advocates should be opened. Ireland needs surgeons to train in advanced techniques to remove all endometriosis and operate laparoscopically to remove the disease and not simply offer women pregnancy or castration.
“Women need to have access to all the options available – surgery to diagnose and remove disease, pelvic physiotherapy to help heal the damage, counselling to help with the trauma of misdiagnosis and possible infertility or chronic pain. It is achievable. There are surgeons interested, there are women willing to travel and we are always here willing to help and support.”
8) What do you do to relax and unwind?
“Walks in Glenveagh National park are my saviour – the mobile phone signal is poor, so it’s the only time I’m not contactable. When I’m indoors I rely on a love of music, photography and red wine.”
9) What makes you laugh?
“I have to say funny cat videos online – clichéd I know, but they do make me smile.”
10) Where would you like to live other than Ireland and why?
“We love Portugal, the weather and the landscape is perfect – not too hot, not too many biting insects – perfect for someone as sensitive (to sun and chemicals) as me. I am sure that when I am able to travel further I will fall in love with lots of other places but right now it has to be pain friendly.”
- Do you know a Health Hero? Every week, we will honour one of the people deserving of the hero tag. If you would like to nominate someone, go to irishtimes.com/healthheroes