A young woman was left unable to conceive after it took medics four years to spot she had womb cancer.
Lydia Brian bled so heavily each month it would soak through all her clothes, but despite insisting something was wrong, she was repeatedly “fobbed off” by doctors.
It was only when the 24-year-old began suffering from severe anaemia due to the blood loss and went to a walk-in centre that she was finally listened to.
Tests revealed she had a rare form of womb cancer which, while not immediately life-threatening, meant she had to have a hysterectomy.
“I was young, I wasn’t worried the cancer could get worse, my main concern was my fertility,” Lydia told the Manchester Evening News.
“I was preoccupied with it; I just really, really did not want to have a hysterectomy.
“It was heartbreaking.”
Lydia’s symptoms first started after she graduated from Manchester University.
She’d been suffering bleeding after sex and had gone to see her doctor who told her there was nothing to worry about.
But her periods gradually got heavier and heavier until it impacted her daily activities.
“It was really debilitating,” said Lydia who lives in Hertfordshire.
“I was always worried I would flood, bleed through my clothes or chair, and I would have to time going to the toilet, before meetings, before exercise classes.
“It got to the point where it was really restricting my life and I couldn’t exercise during my period. I couldn’t go for a day out for a walk for example if there wasn’t access to a toilet.
“The bleeding got so bad it would be more like wetting yourself, it would come out in one go, and it would be so much that it would soak my trousers to my knees.”
She raised the problem with her doctor, who again told her it was nothing to worry about unless it was a recurring problem, adding that stress could be the cause.
“I didn’t feel listened to by this point,” Lydia said.
“I kept getting fobbed off and told not to worry, told to come back if it happens again.”
It wasn’t until Lydia suffered with severe anaemia and had to visit walk-in centres and Manchester Royal Infirmary A&E that her condition was taken seriously.
She was sent for tests and doctors found two lumps in her womb, diagnosing her with inflammatory myofibroblastoma tumour – a rare type of womb cancer.
They managed to remove one lump, but the other was too far into the lining of the womb.
And because it was feeding on oestrogen, Lydia was put into an induced temporary menopause to try and stop it growing.
But the hormone therapy failed to work, and Lydia’s symptoms continued.
When she went back to the doctors, a scan showed the lump had doubled in size.
She was told there was no other option but to have a total hysterectomy.
Her uterus and cervix were removed but her ovaries remained intact, meaning she could have her eggs implanted into a surrogate’s womb if she wanted to have a child in the future.
“I’d been put under a really unusual position, where I had spent months thinking about how much my fertility meant to me, in a way that usually at 24 you wouldn’t,” Lydia, now 28, said.
“It was really horrible.
“There was a bit of relief in that it was no longer my decision.
“Lots of my worrying about it was ‘Will I regret this at some point?’ But if it’s not my choice then I can’t regret it, I couldn’t look back and wish I’d done something differently.”
Now in a relationship, Lydia has discussed the possibilities of a future family with her boyfriend but admits it’s been a difficult subject to broach when starting new relationships.
“I’m very lucky in that my partner at the moment is the most understanding,” she said.
“Back in the day when dating, I did worry about telling people, and worried that people might be put off, which it shouldn’t and I don’t believe it should, but you never know.
“I grew in confidence as I got older and thought it was a good test in how they react to it.”
Lydia was living in Manchester at the time but moved to Hertfordshire in 2019 and then began working at The Eve Appeal – The UK’s Gynaecological Cancer Research charity, which aims to raise awareness of gynaecological cancers.
She decided to share her story as part of the charity’s annual Get Lippy campaign, which aims to break down taboos and shame around gynae health, empower women to understand their bodies, and make sure they get any worrying symptoms checked.
“If you’re in a high-risk group, doctors may assume you’ll have cancer and then if you’re not, like I wasn’t, there’s maybe an assumption that you can’t have it,” Lydia continued.
“But of course there is always a small number of people that don’t fit into the risk groups, and everyone with symptoms should be checked to make sure they don’t have cancer.
“I wish it was in people’s minds to start with, it might be a small possibility, but it doesn’t mean it’s not a possibility.
“I do think when people go to the doctors with symptoms they should always get examined, and I don’t think that’s happening.
“Often doctors assume women will be embarrassed so they save them the embarrassment and they won’t examine them.
“You wouldn’t go with a lump somewhere else on your body and the doctor not look, so I do think women need to get looked at more, if something is wrong you shouldn’t be afraid to tell the doctor.”