Becks’ Endometriosis Story
“Painful periods are not normal! If you take over the counter pain relief and you are still in pain, and can’t go about your normal life, that is not normal!”
When Becks was 13 her mum decided that enough was enough. Her daughter was struggling a lot with very painful periods and now she’d started experiencing a lot of painful digestive problems, so they went to the GP.
The message from the GP was clear at first: ‘This is just a normal part of being a woman, and you just need to get used to your periods.’
But Becks didn’t get used to the pain and what followed was years of going back to the GP, leaving with misdiagnosis after misdiagnosis. ‘I’ve been to the doctors so many times and been on so many drugs. I was told that I have IBS, and it even says on my medical records that I have a chronic UTI - which I don’t.’
Then in March 2020, returning from a friend’s hen-do, Becks, now 26, started feeling really ill: ‘I felt really awful and I thought this is really bizarre, I didn’t even drink that much. And then I started having chronic pelvic pain every day.’ Becks reached out to her GP again. This time she was put on antibiotics for about three months, but the pain persisted. But so did Becks. She started calling her GP twice a week, telling them that something was wrong and that she desperately needed them to figure out what was going on.
The battle to be taken seriously
It was a battle to get her GP to take her seriously, and Becks often felt like giving up but: ‘My husband is great. I don’t think I’d be diagnosed without him. Every time I came back from an appointment, crying, telling him they’d told me it was all in my head, he told me to not give up; ‘I believe you’.’
Eventually, Becks decided to go private, after her GP refused to give her a referral on the NHS. ‘In that first appointment, she told me I might have endometriosis. I went home and googled it, and found that I had every single symptom listed on the NHS webpage.’
Coincidentally, Becks’ mother-in-law also has endometriosis. But despite this, Becks knew very little about it. ‘My mum in law was diagnosed at 45 and had a hysterectomy and that was my only prior knowledge of it. I had no idea that it could affect someone younger. My mum in law’s experience of it was also very different to mine, and we’d never really spoken about it.’
The shock of a diagnosis
Becks had her surgery to confirm, and remove endometriosis and even though, from doing her research, she now knew it was most likely endometriosis that had caused her so much pain for such a long time, the official diagnosis still sent her spinning.
‘I was shocked when I had the diagnosis because even though I’d known something was wrong, every time I’d phoned up [the GP] I’d been dismissed, and told that it was the stress of the pandemic or that it was all in my head, and because I had been told that so many times, I hadn’t allowed myself to think that something would be wrong. When I came out of my surgery and they said: ‘yes we’ve found a lot of endometriosis’ I hadn’t really thought about that outcome. It was a lot to process.’
‘My only reference point was my mum-in-law, so I immediately thought the diagnosis meant that I had to have a hysterectomy. I was really, really upset, and just felt like I was in a massive race against time.’
A few weeks after her surgery, Becks returned for a follow-up appointment. When she’d first been discharged she hadn’t been given much information, so Becks had spent the weeks doing a lot of her own research. Now, whilst she was sitting in her gynaecologist’s office, she started getting the feeling that she had a better grasp on endometriosis than the medical professional sat across from her.
‘I came back and she said; ‘you’re too young for a hysterectomy now, but as soon as you’ve had kids come back and I’ll do it straight away.’ She basically told me I had to get pregnant or be put in a temporary state of menopause. Those were my two options. But that just didn’t align with what I’d learned doing my own research.’
Becks was sent home and told to give it a couple of months, and wait and see how she got on. At this point, Becks decided to come off the pill and then her symptoms got a lot worse. She joined an endometriosis Facebook group called Endo Revisited, looking for advice and someone who understood her experience. She decided to post her surgery notes and that’s how she learned that she has Stage 4 endometriosis. She was also advised to reach out to an endometriosis specialist.
Getting specialist medical support
‘Seeing the specialist has been amazing. He is so knowledgeable and compassionate. And I’ve just felt listened to and validated. He’s told me that it is definitely not all in my head, and to never let anyone tell me that again.’
As Becks was still in a lot of pain, her new gynaecologist decided to do another scan and they realised that there was still a lot of endometriosis. Her first surgery had been an ablation, a surgical procedure where the endometriosis is burnt away. A procedure which isn’t all that effective when someone has severe endometriosis. In September 2021 Becks had her second surgery. This time an excision, where the surgeons cut away the endometriosis instead. Since then she has noticed a significant improvement.
‘Before [the surgery] ovulation was horrific. I couldn’t stand or move and I would crawl back from the bathroom. It still hurts, but nowhere near the same. I also had bladder problems, like painful urination and urgency and frequency and this has improved massively.’
Taking things day by day
Now Becks is just trying to take things day by day. ‘I know my symptoms could come back worse and one day in the future I am definitely open to medical menopause or hysterectomy, but for now, I’m trying to be positive about the future. If I walk around being anxious about the future, I’m already living as if something bad, that might not even happen, has already happened. I try to ignore all of the negative what-ifs that endo could bring - I can’t do that every day, but I do try.’
In general, Becks is conscious to safeguard her mental health. She’s part of several endometriosis communities online, but she’s found it helpful to mute some of the ones where there is a lot of focus on the worst-case outcomes, and only revisit those when she is looking for specific information. She’s also made sure to follow a diverse group of endometriosis accounts on Instagram, some of which ‘keep it very real, which I appreciate’ and some which, like Becks’ own account, try and show how you can live a good and positive life with endometriosis.
But regardless of whether you use social media or not for advice, comfort or community, Becks’ main advice to anyone diagnosed with endometriosis is to speak to a specialist as speaking to a specialist eased a lot of Becks’ worries about the future.
3 things Becks wishes she’d been told sooner
‘Painful periods are not normal! If you take over the counter pain relief and you are still in pain, and can’t go about your normal life, that is not normal!
‘There are specialists out there who can really help you, and help you understand what endometriosis is and how it will impact you.
‘You are not alone! I felt I was alone and then I learnt that 1 in 10 women have it. Recently I read that every time you go to an appointment, know that there are millions of women out there going through the same thing and they all have your back!’
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