Living with endometriosis: Rebekah’s story
After 11 years of painful periods, Rebekah Lloyd received a diagnosis that shook her world. She shares her journey and reveals the coping strategies she's arrived at through trial and error.
Years of pain
I first saw a doctor about my pain in 2011 (it wasn’t until 2022 that I was officially diagnosed). I remember it vividly. There was one day when I literally couldn’t get out of bed, so my flatmate gave me some of her mefenamic acid, which is a more extreme painkiller. This would happen every month until, one point, I realised it wasn’t safe to self-medicate. So I went to the doctor and they prescribed the same painkillers. I left without any real information and just assumed that painful periods were normal.
Years later, when I was having a smear test, I mentioned to the nurse that every time my partner and I had sex there would be blood. She was the first person to say “that’s not normal”. I also mentioned that I had painful periods so she referred me for a colposcopy. But then Covid happened, and the appointment got cancelled. During this time, I started getting pain every single day, which I hadn’t had before. That’s when my partner said enough is enough.
Luckily, I had private health insurance through my employer so I was able to get referred for a private colposcopy. During the procedure, the doctor showed me a really big cyst on my right ovary. She said, “we can't confirm it, but it's highly likely that you have endometriosis.”
My mom was the first person I called as I walked down the street bawling. I felt overwhelmed and scared. This was a chronic condition I would have forever. I'm not religious, but I thought, why me? Have I done something to cause this? Does this mean I can't have children? I joined a support group and it was absolutely terrifying. There were women talking about six-hour surgeries and how they were taking four months to recover.
I was able to have a laparoscopy operation two months after the colposcopy, which is worth noting, because I really wanted to quit my job at the time, but knew that if I went through the NHS, it would have taken me two years before I could have the surgery. So I stayed in my job.
During the laparoscopy, they confirmed the cyst on my right ovary. They removed the endometriosis tissue but weren't able to remove all of it as it was too sticky and the surgeon would have had to remove healthy ovarian tissue. Because of my age and the potential of having children, she decided against this. The surgeons also identified that the endometriosis tissue had spread to my left ovary, some other areas on my uterus, and my bladder (areas that weren't picked up during the scan).
Initially, the surgery reduced the pain, but six months later the symptoms and pain started to return and I'm now on the waiting list to be reviewed again.
Learning to cope
Endometriosis can take over your life completely so it's trying to find ways to not let that happen. People around you want to help. They want to not see you in pain and so being open with the people that you're comfortable with, to the degree that you're comfortable with is really important. For me, talking about it and helping other women get help is a way of healing.
Finding your triggers is also key. Through listening to my body, I’ve determined that the biggest trigger for me is stress. I try to regulate my breathing. I'm very visual, so it’s almost like I'm trying to breathe out the pain.
With food, I've started educating myself on what affects me. I'm a big foodie, so this was really hard for me. I found that I get more bowel issues when I have red onion. I have Greek salads every lunchtime and so now I don't have it with red onion.
I always tell people to track their symptoms because then you can't be told it's all in your head. You have data to show this is when I've had pain, these are my symptoms.
If you're not getting help from the person that you're speaking to, try someone else. There's always this feeling of speaking to the expert. There are eight billion people in the world. I don't know how many people are healthcare professionals, but you're not always going to have someone who listens. I hear people say, “message the practice manager”, and I'm like, no, don't get caught up in bureaucracy because, ultimately, you need to take action and get the help that you need.
So what I did recently is move to a new GP and the first GP I saw there was incredible. She referred me straight away to a specialist centre for endometriosis.
My advice would be to say: “Here are my symptoms. I think it might be endometriosis. I don't want to see any gynaecologist, I would rather go to a specialist.” It’s helping them help you. It's not going to solve everything, but it could shorten the wait. The other tip is there's always cancellations so you can call up and be given an appointment. These little hacks can help you get the support you need sooner.
In a way, endometriosis has been a trigger for me to look at myself as a whole. It ultimately even inspired my business because understanding how this impacts your life and finding ways to not have it hold you back can be very empowering. I think it's about helping yourself as an individual and then using the healthcare system to support that.
Rebekah Lloyd is an international speaker, consultant, podcaster, women's advocate, and founder of This Independent Life, a social impact platform that helps women achieve personal independence.
On 11 March 2023, Rebekah will be hosting The Future of Endometriosis, a first-of-its-kind conference bringing together different voices and perspectives to talk about how we can collectively change the future of endometriosis. You can follow Rebekah on Instagram @thisindependentlife.
This interview has been edited and condensed for length and clarity.
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