A 26-Year-Old Womb Cancer Survivor On How To Spot The Symptoms

Photo: Aslan Eylul.
The requirement in the UK for women to have regular smear tests means that cervical cancer tends to be on our radars. Until the age of 49 we're invited to a cervical screening every three years, and although this isn't a test for the symptoms of cervical cancer (it picks up abnormal cell changes in the cervix which could potentially develop into cancer), it reminds women that the disease is something we should be looking out for.
However, womb cancer, which is also called uterine cancer and endometrial cancer by health professionals, is more common but is discussed far less often. More than 9,300 women are diagnosed with womb cancer in the UK every year, according to the Eve Appeal, which has just launched a comprehensive online guide to the disease. This is compared to around 3,200 new cases of cervical cancer and 7,300 instances of ovarian cancer each year.
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And yet, despite womb cancer being the most common gynaecological cancer and the fourth most common of all cancers affecting women, very few of us know the symptoms. A survey of 1,000 women in the UK showed that 40% didn't have a clue.
The disease is most likely to affect women in their 50s and those who've been through the menopause, but it can also affect younger women and the Eve Appeal wants to increase awareness of the symptoms among those of all ages.

Signs and symptoms

Abnormal vaginal bleeding is the most common symptom of womb cancer and the symptom that leads to the diagnosis of around 90% of cases, the charity says. The signs that young women in particular should be looking out for are:
• Bleeding between periods
• Bleeding after sex
• Persistent heavy periods, unresponsive to medical management
• Vaginal discharge – from bloodstained to a light or dark brown
But the charity is quick to stress that the vast majority of women who experience irregular vaginal bleeding will have nothing to worry about, and when the disease is caught early, 75% of women can be cured. Nevertheless, it's worth going to your GP to talk about your symptoms.

"I looked down and there was blood on my trousers to my knees"

Lydia Brain, 26, was diagnosed with womb cancer in November 2016 when she was 24. She first began experiencing symptoms at 21 – heavy periods and bleeding after sex – and by the time she was 22 these became impossible to ignore. She had a total hysterectomy in June 2017 after other treatment proved unsuccessful. She continues to have monthly scans but currently has no evidence of the disease. Brain told her story to Refinery29 UK.
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"My periods had been gradually getting heavier and heavier for a while. I was using big tampons and sanitary pads at the same time and changing them every hour or two. I realised something might be seriously wrong when I had a big bleed between periods. It wasn’t really a period bleed at all – it was instant and felt more like I'd wet myself. There was loads of blood all in one go, none after or before, and it all came out within 30 seconds.
I was on my way back from a work trip to Sweden when I stood up at the end of the flight, so I assumed it was the change in pressure or something. It felt like my waters were breaking. Thankfully I was alone and not with colleagues. I looked down and there was blood on my trousers to my knees, so I panicked and I didn’t know what to do. I put my long coat on and when I got to the toilet I had to put my clothes in the bin and put new ones on. I just sat there and cried for about 10 minutes. It was horrible.

I’m very maternal and have always wanted a lot of children, so it broke my heart to hear I might need a hysterectomy.

I went to the doctor after that and even though I described how bad it was and mentioned that I had a fibroid [detected in an ultrasound when I was 22], the doctor said that those don’t cause problems and that they wouldn’t give me another scan because it was a one-off event – even though I’d been to the doctors for various things that were all gynaecological and bleeding-related. I thought I’d had a miscarriage because that was the only thing I thought would cause that amount of blood in that way. I was scared and worried but he just said it was most likely to be stress, which pissed me off because I wasn’t stressed until that happened. It was almost another two years after that incident that I was diagnosed.
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They eventually agreed to re-scan me as my symptoms were getting worse. I had surgery to remove a lump and they did a biopsy to work out what it was, then two months later I was told it was cancer. I wasn’t expecting it because you imagine you’d get bad news much sooner. I'd gone to the hospital halfway through a work day, I’d left all my stuff on my desk and my computer turned on, thinking there was no problem. Then they told me and I was given a clinical nurse specialist and they took me into a Macmillan room and handed me leaflets about womb cancer and hysterectomies. That was when I got really upset. This all happened within the space of about 10 minutes. I always knew everything was worse than the doctors had thought because they’d been underplaying my symptoms the whole way along, but it was a big shock and I hadn’t expected it to be cancer.
I’m very maternal and have always wanted a lot of children, so it broke my heart to hear I might need a hysterectomy. I tried my hardest to avoid having one – we talked about having a child then and putting the treatment off for a year, but in the end my treatment didn’t work and the cancer was growing quickly and they didn’t have a choice. They told me I needed one and I had it four weeks later.
I’ve kept my ovaries but my hormones aren’t good and generally my body’s different now, but I haven’t had to live any differently apart from coping with the mental health side of things. I don’t have the same amount of strength either – I’ve done pole dancing for nine years but I’m not very good at it anymore. My cervix was taken out too and my vagina is tied up at the top, which isn’t very noticeable, but sex feels different without a cervix."
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