Lydia Brain has had heavy periods since she was a teenager. In her early 20s, they got so heavy that she would regularly bleed through her clothes in public—but Lydia never imagined it was a sign of endometrial cancer.
"I can't remember ever not having to use a tampon and a sanitary towel. For years my periods got heavier and heavier," Lydia says. "Sometimes I'd get stuck on the toilet for hours. I couldn't go on holiday or out for a day if I was on my period, because I had to make sure I could always get to a toilet."
The impact on her love life was huge, too. "When I got a new boyfriend we'd have to get very comfortable with each other straight away, because my bleeding was too heavy and painful for him to not be aware of."
With her periods often lasting longer than a week, sex was off the cards for a lot of each month, and sharing a bed meant dealing with the alarms Lydia had to set throughout the night to change her sanitary products to avoid bleeding onto the sheets.
"Fortunately my boyfriend at the time wasn't squeamish, but it wasn't ideal at all. Sometimes he'd have to help me get home from a public place if I'd bled on my clothes," she says.
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Lydia first saw her GP about the heavy bleeding two years ago, aged 23, and her age meant that endometrial cancer—which typically affects post menopausal women—wasn't the first thing doctors looked for.
"I had acne, so they initially checked for polycystic ovary syndrome. They also did a scan and saw a small lump [in my uterus], which they told me was a fibroid (a non-cancerous growth in or around the womb)," she says. "They told me loads of women have fibroids, don't worry about it—so I didn't!"
It took several trips back to the doctor, after heavy bleeding between periods and during sex, before they agreed to remove the fibroid. "Sometimes it was like wetting yourself—really fast, only for a few seconds, but there'd be blood down to my knees," Lydia recalls. "They finally started looking into it because I got anemic from all the blood loss."
Even then, it wasn't until September 2016 that doctors discovered her fibroid was, in fact, something more sinister. "I had two fibroids by the time they operated, but one was quite deep in the [uterine] wall and couldn't be removed. It was only when they removed the other one and had it biopsied that they realized it was a cancerous tumor."
Abnormal vaginal bleeding can indicate a host of health problems, from polycystic ovary syndrome to endometriosis to fibroids, but it's also a key sign of all five gynecological cancers: womb, ovarian, cervical, vaginal, and vulval.
According to John Butler, a gynecological oncology surgeon at the Royal Marsden Hospital in London, "endometrial cancer is actually the commonest of gynecological cancers." It's probably not the first one you'd think of though—and particularly not in your 20s.
The exact cause of endometrial cancer (also known as womb cancer) remains unknown, but most risk factors have been linked to the womb lining's exposure to estrogen, which can cause endometrial cells to grow out of control—a process known as hyperplasia—and increase the possibility of cancer. It typically affects post-menopausal women over 50, with only "between two and 14 per cent of endometrial cancers occurring in women under 40," Butler explains.
Some women may have a genetic predisposition to uterine cancer, known as Lynch Syndrome, while lifestyle triggers contribute to its development in other women.
"Excess estrogen can occur in post-menopausal women who are taking HRT, but being overweight is another risk factor because we carry estrogen in our fat tissue," explains Dr Tracie Miles, a specialist nurse at gynecological cancer charity The Eve Appeal.
Symptoms tend to present at quite an early stage and the most common treatment is a hysterectomy so, as Butler says, "it's one of the most straightforward cancers to treat and the prognosis is usually very good."
For Lydia, of course, that decision wasn't quite so straightforward. "I was very aware that, because most women with womb cancer are older, they can have a hysterectomy and not really think twice about it—but there weren't alternative treatments [for younger women], because it's usually not an issue," she says.
"I'd always wanted lots of kids and I think, at the time, I cared more about the possibility of losing my fertility than maybe risking my life," she adds. "My fertility was a huge deal, and we tried really hard to save it for a long time."
I feel like I haven't grieved properly for my fertility yet.
Because Lydia's particular type of tumour was very rare, and couldn't be removed surgically, doctors experimented with a hormone treatment, Zoladex, which is more commonly used to treat certain estrogen-receptive breast cancers.
Also known as goserelin, the treatment involves injections of a luteinizing hormone blocker which prevents the ovaries producing oestrogen and triggers a temporary, chemical menopause.
"I didn't have periods anymore, which was lovely, but not having hormones for four months meant I also had hot flushes, didn't feel quite like myself, and my memory got a bit rubbish," Lydia explains.
"At the time I felt like it was a very small price to pay," she adds. "The hormone treatment wouldn't have ever cured me, but it might have given me a few more years before the hysterectomy. I'd have had until about 27 to have a kid—even if that meant doing it by myself, using sperm donors, because I was single again at this point."
Sadly, the hormone treatment didn't work. In fact, Lydia's tumour actually began growing faster, leaving doctors with no choice but to remove her uterus. "It all happened really quickly after that. I had four weeks to prepare for the operation, so I cooked loads of meals and chucked them in the freezer, and organized friends to look after me," Lydia says.
"For the first few days afterwards it was really, really painful—I think it's the worst I've ever felt. You can't really walk, going to the toilet's agony, or coughing, sneezing, anything like that," she adds.
Lydia's ovaries were preserved during surgery, so she still has monthly hormone fluctuations—albeit without the periods, which she describes as a relief. Now, just three months on from her hysterectomy, Lydia is now getting back to normal life.
But despite her relief, Lydia says: "I feel like I haven't grieved properly for my fertility yet and that, when I'm older and more of my friends are having babies, it will hit me quite hard."
"I worry hugely about the impact on future relationships too," she adds. "It's quite an intense thing to talk about when you're first meeting people at 25. You don't want to scare men off by talking about babies and adoption so early on, but you don't want to tell them further down the line and then find out they want children that are biologically yours."
In the UK, women can contact The Eve Appeal's Ask Eve service for more information and one-to-one advice from specialist nurses: Call 0808 802 0019 or email firstname.lastname@example.org. Find out more about endometrial cancer here and contact Womb Cancer Support UK for support and advice.