Why it’s time to open up the conversation about endometriosis: Kat's story
Did you know that as many as one in ten women of reproductive age in the UK suffer from endometriosis? That’s right, it’s the country’s second most common gynaecological condition.
But want to know what’s even more surprising?
The fact that, on average, it takes eight years from the onset of symptoms to actually get a diagnosis! That’s eight years of living with physical issues that can include intense period pains, feeling sick whilst menstruating, pain during sex and more.
Endometriosis Awareness Month may be coming to an end – but it’s never been so important to continue the conversation about this condition which is too often swept under the rug, misdiagnosed or ignored. Here at Fempowered, we know just how damaging it can be when there is silence surrounding menstruation and topics related to it. That’s why we’re so pleased to be sharing this guest post from Kat, an endometriosis activist and creative freelancer. In it, not only does she open up about her personal story, but her tips for dealing with the condition and why it’s so important to talk about it openly when we can.
I first heard the term endometriosis about a year ago.
I’d always had really painful periods. There were days that I went to school, when I should have been tucked up in bed, but was instead keeled over a toilet in pain. I just shrugged it off as normal. If you complained enough, you were granted the school's hot water bottle, but this was often an embarrassing mission!
I began using the depo-provera injection because it got rid of my periods completely. Then I started university, and felt like I wanted to get back in touch with them and return to a regular cycle. It took over a year for my first period to return, and despite the pain I felt happy and in control.
But things got worse. A few years ago, I developed pelvic pain that was pretty much constant and had cramping episodes that were so severe, I would collapse drenched in sweat, be physically sick and unable to move. I knew then that this couldn’t just be dismissed as a ‘bad period’. Over the next couple of years, I went to various health professionals and described my symptoms but they played it down, and I always left thinking I had overreacted. Perhaps this was just normal.
The journey to a proper diagnosis
But time passed on and the pain along with it. My female boss at the time noticed things weren't right and sent me off to A&E. After waiting for hours, I started to second guess myself, thinking I was an inconvenience.
Eventually I was seen briefly, and they told me it sounded like Pelvic Inflammatory Disease. I was instructed to go to the walk-in clinic for tests. They came up as inconclusive, but I was given an injection of antibiotics and sent on my way. The pain didn’t go away after the treatment, but I tried to forget about it as much as I could. I thought I had reached a dead end with asking for help and I developed a mentality that I was just making it up.
Then two years ago, I bought a mooncup after hearing from friends that it really helped with cramping and period pain. I ended up having a scary seizure-like fainting episode when trying to take it out. I called 111 and they sent out an ambulance, and I was instructed to go to A&E to be checked. I then went to a walk-in GP, as mine had been no help so far, who referred me on to a first fit clinic and a gynaecologist at the hospital. Thankfully it wasn't a seizure, but on meeting with the male consultant I felt that my symptoms were once again being dismissed and I was advised against an investigative laparoscopy because it was too risky.
Last year, I moved to a new doctors, and decided it was time to take proper action. I asked to speak to a female GP who genuinely listened when I explained my symptoms; she said it sounded like endometriosis. This was the first time I felt heard.
She immediately referred me for tests and onto a female consultant at the hospital. As this was all during lockdown, I thought this would take a long time, but I was lucky. After an MRI, the consultant recommended a laparoscopy to confirm her suspicions of endometriosis. I was nervous about the laparoscopy as due to Covid restrictions, I had to do it alone. But after surgery in the post-drug haze, I was told that there was significant endometriosis across a number of my organs and they had removed what they could for now.
Finally, an answer.
It might have been the anaesthetic, but waking up to this news was a truly emotional experience. Once the consultant left the recovery room and I was alone, I sobbed. I was so relieved because the diagnosis was proof that the symptoms weren’t in my head and I now had a name for what was causing my pain. However, it was also hard to acknowledge that I now had to face this progressive, currently incurable condition.
Most of all, I was frustrated.
If I had been listened to all those years ago, then the endometriosis could have been treated sooner. If I had just had an awareness of this condition, then I could have pushed for the right tests. It led me to question whether all the health professionals I had seen over the years were truly aware of it either - why did it take this long for someone to realise that's what it could be?
Why talking about endometriosis is so important
The sad truth is, people experiencing endometriosis symptoms are just not being listened to. You might think that my story is extreme, but it is the same story as so many others. The All Party Parliamentary Group on Endometriosis 2020 report found that prior to diagnosis, 58% of people experiencing symptoms visited their GP 10 or more times, 53% went to A&E and 21% visited doctors in hospital 10 times or more.
These are shocking statistics – but also expected.
It's time to address the gender pain gap issue head on and truly question why this is happening. We must open the conversation up about endometriosis in order to increase awareness and make our voices heard.
5 tips for periods and life with endometriosis
You know your body best: If you feel like something's wrong but your concerns aren’t being listened to by your health professional, seek out an alternative opinion. Endometriosis UK has some fantastic resources and support to help you on your journey to diagnosis.
Be honest: It's important to disclose an endometriosis diagnosis with your employer just in case there are issues. Being honest about your symptoms can encourage those around you to understand your needs and be adaptable when symptoms flare up. If you're an employer, See Her Thrive has some great tips about how to make your workplace more inclusive for women with health issues.
Surround yourself with support: It can be great to talk with those around you about your journey, but there is also a whole community of women who are facing similar battles. Facebook groups such as Endometriosis Support UK are a good source for finding solidarity and comfort in shared experiences.
It's ok to have down days: There is no doubt that having a condition like endometriosis can affect your mental health. 95% of people who undertook the APPG endometriosis survey said that their symptoms had negatively impacted their wellbeing. It is so important to listen to your body and take time out when you need to. Don't put yourself down for those days you can't get out of bed.
- Join the fight: If you feel you can, join in with advocacy to encourage more research and support for endometriosis and other women’s health conditions. For a good place to start, check out Endometriosis UK’s campaigns. It's time for change – and by coming together, we can make our voices heard.
We’re so grateful to Kat for sharing her story and the eye-opening realities of how endometriosis sufferers can be treated here in the UK. If you want to connect with her further, you can find her on LinkedIn.
Where did we get our stats and facts from?
To learn more about endometriosis, its symptoms and getting a proper diagnosis, check out these sources:
- Endometriosis UK: Endometriosis Facts and Figures
- The Independent: Endometriosis takes average of eight years to diagnose, new report finds
- The NHS: Overview Endometriosis
- All Party Parliamentary Group on Endometriosis: Endometriosis in the UK: Time for Change