Despite affecting one in ten women of reproductive age in the UK, endometriosis is often regarded as a hidden condition leaving sufferers with unrelenting pain that affects every aspect of their day to day lives. Earlier this week, the BBC released research revealing the reality of what living with endometriosis is like. 13,500 women across the UK came forward to tell their stories, highlighting the devastating impact the condition can have on a person’s life – including their education, career, relationships and mental health.
Affecting over 1.5 million women in the UK, endometriosis is a debilitating condition caused by uterus tissue growing outside the uterus, often around the pelvic region. Each month this extra tissue breaks down and bleeds, but because it’s not in the womb like a period is, there is no way for the blood to escape, which can cause swelling, scarring and pain. In some cases, the chronic condition can even lead to infertility.
Whilst endometriosis can affect women in different ways – many face unbearable pain. The exact causes are unknown and at the moment there is no definite cure for the disease, as treatment can only ease symptoms. On average, it takes seven and a half years for a diagnosis to be made, which according to one of the UK's leading specialists, could be due to a "gender pain gap", wherein women in pain aren't taken as seriously as men. This has caused many women to be turned away from further medical testing before diagnosis, being told that the pain they are feeling is ‘psycho-semantic’ (all in their heads).
In the largest study of its kind in the UK, the BBC’s research concluded that nearly all the women said living with endometrioses had badly affected their career, sex life and mental health. Half of sufferers said it had driven them to suicidal thoughts, and most said they rely on painkillers every month, including highly addictive opioids. But it’s not just these women’s life’s that the condition is having an effect on, it’s estimated that endometriosis is costing the UK economy £8.2 billion in treatment, loss of work and healthcare costs.
The survey results prompted the All-Party Parliamentary Group for Endometriosis to launch an inquiry into how it was affecting women. Chair of the APPG, Sir David Amess, has said: “The APPG is committed to raising awareness of this condition and representing the interests of people who live with it. We will therefore be launching an inquiry in the near future to hear from patients and healthcare professionals about their first-hand experiences, before making recommendations to the government. It is essential that women with endometriosis are given the right support at the right time.” Emma Cox, CEO of Endometriosis UK, said: “This shocking new research is a stark reminder that both society and the NHS need to wake up and accept that endometriosis is a chronic condition that cannot be brushed under the carpet.”
Sophie Weller, 21, from Kent has recently received a diagnosis of Endometriosis.
How long did it take for you to get a diagnosis?
Ever since my first period at 13, I have experienced heavy bleeding and lower back pain but because I didn’t know any different I just accepted this as normal. From the age of 14 my back pain got progressively worse and I also started experiencing crippling abdomen pain which came in what I could only describe as “attacks”. If I had to put a number of years to my diagnosis, it would be just under 8 years.
How old were you when the symptoms started to show? What were they?
In 2017 I went on the contraceptive pill but quickly changed to the Mirena coil due to having migraines, which led to my periods stopping altogether, and therefore heavy periods were no longer a problem. However, in December 2017 I was at the Bath Christmas market when I suddenly felt the most intense pain I have ever felt. It was in my abdomen and it felt like someone had stabbed right the way through me, I bent over double and tried my hardest not to collapse to the ground. That evening I went to A&E and was discharged with suspected kidney stones.
In January 2018, the pain returned and I again went to a walk-in clinic where I was told to take pain relief until the pain subsided - no answers or additional medical testing was given.
In November 2018, my back pain was intensifying and I started experiencing tingling down my legs. I was seen in hospital and referred to the rheumatology team. Following an MRI and some follow-up appointments I was discharged with instructions to exercise more to strengthen my abdominal muscles - again no answers or further testing was given.
Fast forward to January 2019, I was on a year internship living in London and the abdominal pains were back and worse than ever. I remember was sitting in an afternoon meeting when suddenly the sharp pains were attacking my abdomen once again. I immediately got a telephone appointment with my GP who told me that I should urgently go to A&E as she suspected my Mirena coil had caused an ectopic pregnancy. I was admitted straight to the major's ward but after a couple of blood tests and urine tests they confirmed I was not pregnant but that there was blood in my urine; the doctors told me it was likely to be kidney stones. Later that evening, I had an ultrasound which didn’t show any kidney stones so they suspected the stones were either too small to see or had passed already. I was discharged and told to take painkillers until the pain got better.
Just two months later in March, I woke up in the morning to go to the bathroom and only just made it out of bed before I collapsed on the floor physically screaming in pain. I got a taxi straight to the hospital where I was admitted to the major's ward very quickly; within 2 hours I had been discharged after being told again it was kidney stones.
This summer my pain has become a daily problem so my mum encouraged me to see my gynaecologist and talk about the pain. I will be forever grateful to my mum for that advice as that gynaecology appointment became the answer to my ‘mystery’ pains. I was very surprised that my gynaecologist was keen to explore the possibility of endometriosis via laparoscopic surgery. Happy to know that someone was taking my symptoms seriously, I got a date in the diary for my surgery.
Sophie after surgery in September 2019
On the 27th of September 2019, I underwent my laparoscopic surgery. I am not sure I have still quite come to terms with my diagnosis as I was truly shocked to find out after all of this time that I do indeed have endometriosis. My gynaecologist found and removed the endometrial tissue on the back of my uterus, my uterine ligaments and my left ovary.
How did the prolonged diagnosis impact your life?
The time it took to diagnose my endometriosis meant that my education, work and social life all took a hit. In particular, I know that my family think I am a hypochondriac and I am sure my friends probably think the same thing. There is only so much complaining a person can make before people don’t take them seriously! Luckily for me, my boyfriend and my mum have both been so supportive in encouraging me to get the help I need and I am very grateful that they’ve listened to me.
I think on top of this, the pain is so tiring and thought-consuming which in turn affected my mental health. Constantly wondering why you feel the way you do and wondering if you will ever get to the root of the problem is truly draining.
How is the condition affecting your day to day life?
The main symptoms I experience day to day make life painful and hard work. When I have an ‘attack’ it can really affect my mood and I try to put on a brave face but sometimes that isn’t always possible. I have always considered myself a tired person who needs to nap to function fully and I think now I finally realise that my body has been working overtime and I’ve felt the effects of that. Beyond the physical symptoms, the unknown of when my next ‘attack’ might come can be quite daunting.
How are you staying positive?
I am describing my diagnosis as bitter-sweet. Bitter as a result of the shock of my diagnosis, but sweet because after all of this time I finally have answers and a name to put to the pain I have been through.
I have naturally been doing a lot of reading about endometriosis since my diagnosis and it is very comforting to know that I am not alone. I also think it is so important to raise awareness of endometriosis and this is something I will be doing; this interview is the start of that I guess!
I want to turn my negative experience into something positive for myself but also for others so that they can get answers much quicker than I did.
What advice would you give to someone who is showing potential symptoms of endometriosis? What would you suggest they do?
Speak to your GP and don’t be afraid to write down a list of all of your symptoms. Even symptoms you might think are irrelevant, write them down because it will help your GP build a bigger picture around the pain you are experiencing.
The main advice I would give is around contraception; a lot of women go on contraception to help with their heavy periods or stop them altogether. Even if your periods are ‘normal’ for you, do talk to your GP about the heaviness of your flow as going onto the pill/coil to suppress this might just be hiding the most obvious symptom of endometriosis.
My Mirena coil might have actually unknowingly helped with the pain and development of my endometriosis, but in the process, it also stopped my periods which meant I was not able to link any of my pain to my menstrual cycle.
A lot of women from the study say they were told the pain could be psychosomatic (all in their heads). How would you encourage others to persevere if something isn’t feeling right?
Only you truly know your body. For years, I have known I was in pain but I didn’t know how to truly express it without being called a hypochondriac. If you start experiencing symptoms, do not second guess yourself. Take action and speak to your GP, tell them something inside you doesn’t feel right and do your best to explain what symptoms you’re experiencing/what in your body has changed.
Have you joined any support groups?
I haven’t yet joined any support groups but I am following Endometriosis UK on Instagram as their posts are extremely informative. I have also read some online blogs from other people with Endometriosis which I find extremely comforting because I can find so many similarities between other people’s endometriosis journey and mine.
Since the day of my diagnosis, I have also started keeping a diary of my endometriosis journey. I am writing it in a very light-hearted manner to bring a positive tone to talking about my endometriosis and to make me smile when I look back over my journey.
Endometriosis UK is a charity that strives to improve the lives of people affected by endometriosis and helps them work towards a future where the condition has the least possible impact on daily life. Their website provides vital support, reliable information and a community for those affected by endometriosis.