A mum was diagnosed with a common and incurable condition after bleeding from her belly button for months.
Ceri Bruinsma, 40, said the bleeding started soon after she came off the contraceptive implant two years ago. The flow got heavier every time it happened around her period each month until blood clots came out of her belly. Her confidence was shattered by the pain, bleeding and swelling of her stomach.
The mum-of-two from Anfield said: “I’ve always had painful periods. I’ve got a really high pain threshold – my last baby was 10 and a half pounds, so in that area, I deal with pain really well, but as it went on, my belly started coming out in a pointy triangle shape. It just feels like there’s a knife under my belly button.
“I get severely swollen and I can’t fit into any of my clothes, so I’ve got to wear maternity clothes and it’s very hard to move. My belly swells up like I’m nine months pregnant, so any pressure causes that sharp pain.”
Ceri visited a GP after a few months of this, suggesting endometriosis as a possible cause. They dismissed this chronic pain condition as ‘too rare’, despite it affecting roughly one in 10 women and some trans men and non-binary people. They gave her antibiotics despite tests for an infection coming back clear, and even when scans detected a hernia, her doctor put the symptoms down to her weight. Ceri said: “I’m not sensitive in any way about my weight. I’ve always been chubby, but to use my weight as a reason to not investigate was upsetting.”
Endometriosis is a condition where tissue similar to the lining of the womb grows elsewhere in the body, as far away as the lung and brains, causing pain, heavy periods and fertility problems, as well as attaching to and obstructing organs. Although it’s as common as diabetes and asthma, a lack of research and credibility given to women’s health for generations means the cause is unknown, there is no cure, and many people say they’re not believed when they go to doctors with symptoms. It takes an average of eight years from the start of symptoms to diagnosis.
The 40-year-old said: “Don’t be afraid to fight for investigations. If there’s something wrong, and you know your own body and you know when something’s wrong, you need to go to the doctor get a referral. Don’t suffer and think this is okay.
“A lot of younger girls get told, ‘This is what being a woman is’, which is really, really bad. We shouldn’t be in pain, not being able to get out of bed. That’s not normal, that’s not a bad period.”
It wasn’t until she asked to see a female GP that Ceri was taken seriously. She said: “I’ve got a file for everything – a file of evidence with pictures and everything. But I didn’t need it because as soon as I told her my symptoms, she said I needed a referral to gynaecology, so that got the ball rolling.”
They found a ‘large’ polyp growing from the lining of her womb and referred her to Liverpool Women’s Hospital, but the pandemic put the breaks on this progress. Gynaecology waiting lists faced the biggest increase of all medical specialities since the start of the pandemic, according to the Royal College of Obstetricians and Gynaecologists.
By that point, Ceri’s legs swelled up, she could hardly walk, and her hands and feet were turning blue. Ceri told the ECHO: “When I got to my appointment at the Women’s, I saw a consultant – a female consultant – and the first thing she said when I told her my symptoms, was ‘umbilical endometriosis’, and she said it sounds like I’ve got premenstrual dysphoric disorder.”
Ceri added: “I felt like kissing her because it was just a constant fight, I had a file with all the evidence in it. It seemed like no one knew about umbilical endometriosis. If I didn’t have bleeding on my belly, I would probably have been told I have IBS or something, but that – you can’t argue with it because it’s significant.”
The bleeding stopped for four months after an operation to remove the polyp from her womb. Unfortunately it returned, but Ceri’s treatment options are limited. Even officially confirming the verbal diagnosis of umbilical endometriosis – a rare form of the condition, where endometrial tissue grows in or around the belly button – would require surgery in her stomach. Because her medical notes say she has a hernia in that area, surgery could only be used if it was the sole available treatment option, according to Ceri.
Even an operation to remove her womb would not guarantee the endometriosis stays away. Instead, she hopes chemically induced menopause will end the pain and bleeding along with her periods.
Ceri said: “It’s terrible because it’s such a life-altering condition and you’re getting told to just get on with it. It affects everything – I was in a relationship and I’m not now because it affects a relationship, it affects looking after kids.”