Heather’s ovarian cyst story
“I was in shock after the surgery, but the day after I was up and out of bed despite having undergone invasive surgery, because it was nothing compared with the pain I’d been in.”
Heather was twenty-three, in a new relationship, and working at a radio station when she first started experiencing pain in the left-hand side of her abdomen.
‘To begin with, the pain wasn’t too bad, but over a few months, it became painful enough that my dad took me to see a doctor,’ she says.
‘It’s probably a kidney stone,’ the doctor said, and sent her to the hospital for some tests.
The tests showed there was no kidney stone and by then the pain had subsided, and even though Heather thought they were probably right, she thought she should mention the type of pain it felt like.
‘I’m wondering whether it could be my womb or ovary as it feels like a deep period pain?’
‘It will have been a passed kidney stone,’ the doctor told her, his colleague agreeing.
A few months passed and the pain increased.
‘My dad took me back to hospital when the pain became so bad, I was writhing around on the ground because I was in so much agony. But I was told, again, that I’d probably had a kidney stone that had now passed.’
A few months went by, and this continued to happen on and off.
‘I must have seen my doctor around three or four times before I was finally offered a scan.’
A pattern emerges
While she waited months for the scan, and the pain intensified, she started to notice a pattern.
She remembers, ‘The pain was occurring every two months. And I’d done loads of research and knew the female body ovulates monthly from alternate ovaries. One evening I was in so much pain that I had to be taken to hospital on gas and air in an ambulance.’
But by the time she made it to hospital the pain started to subside, and she was told she was fine and to go home and wait for a scan.
‘I don’t understand why they didn’t just scan me there and then,’ Heather says.
‘I was finally given my first internal ultrasound scan, but I felt like the nurse was condescending,’ Heather says. ‘Her tone suggested there was nothing wrong with me’.
But the nurse quickly changed her attitude when she saw what was on the screen.
’Ecky thump, that’s a big one. No wonder you’re in so much pain, there’s a cyst the size of a grapefruit on your left ovary’.
Heather asked what the next step was, and the nurse said a doctor would review the results. ‘I’ll put a red flag next to your name so the doctor will know to process it quickly,’ she told Heather, ‘so they can decide on your best treatment option.’
Heather left feeling worried but relieved that the doctors were finally doing something about the pain.
The results go missing
‘I waited a couple of weeks, unable to think about much else, and when I hadn’t received a call, I called the surgery to follow up.’
The receptionist told Heather they hadn’t received her scan yet. Unsure of how serious her condition could be, she wasn’t pushy.
‘On reflection I should have been pushier. But I trusted the paperwork would arrive because why wouldn’t it?’ she says.
When six months passed, she rang up again. The receptionist told her the results had been lost and that she would need to book another scan.
‘Couldn’t you simply refer me as there has been a scan and I saw the results?’
The doctor refused and said they needed proof, despite her nurse’s concerned reaction at her first scan.
It was another three months before Heather had her scan.
‘I was still experiencing excruciating pain every two months because the cyst was growing. It wasn’t just a few hours of suffering now during these periods, it was a whole day of pain. And it would happen at inconvenient times. Once I was in a club and was forced to go home because the pain was so bad, I couldn’t stand up,’ Heather remembers.
She finally had her second scan but, unbelievably, her results went missing for a second time.
Third time lucky?
‘I had to wait for a third scan. During that time, I started needing time off work to cope with the pain. My employer wasn’t happy, and this caused a lot of tension. Then one evening I was cleaning the bar floor at work when I felt a wrenching pain, which became continual for several weeks. I later discovered the cyst was so big it had twisted around itself, causing something called torsion of the ovary’.
Heather was finally referred for surgery, a year to eighteen months after she first went to the doctor about the pain.
‘By this point I was bed-ridden for weeks at a time, and in constant debilitating pain, and I still had to sit on a waiting list for the surgery.’
During one of these episodes, Heather was taken to hospital in an ambulance and given gas and air all the way there to help her cope with the pain.
‘At the hospital, they took the gas and air away. I was in agony and had to wait for seven hours while I writhed on the floor screaming. The hospital staff wouldn’t give me anything for the pain besides co-codamol. My body doesn’t metabolise co-codamol properly, so it did nothing for me.’
It was seven hours before she was seen, and she spent the whole time groaning on the floor. Heather was told that she needed emergency surgery, but they didn’t have the correct equipment at the hospital for the operation, which meant it would be risky.
A painful decision
‘I was given the option of having the surgery done then and there but with risks, or I could wait a few weeks to have the emergency operation at another hospital where they would have the correct equipment. Obviously, I wanted to try and save my ovary, so I decided to wait for two weeks.’
It was referred to as an ‘emergency’ operation, despite her having to wait another couple of weeks. After hours of pleading with the doctor to give her something stronger than co-codamol, he finally gave her Tramadol to take home while she waited for her surgery.
‘The next two weeks were a blur. I became delirious from the continual pain and was unable to eat anything. To try and cope with the pain I took Ibuprofen as well as the prescribed Tramadol. The Ibuprofen, however, ate away at the lining of my constantly empty stomach and I contracted gastritis because my stomach was constantly empty.’
The gastritis had her lying in bed screaming for forty-eight hours which led to her having more medication in order to reline her stomach.
‘I couldn’t even get out of bed because the pain was so bad. I was in a new relationship and embarrassingly, he had to pick me up, carry me to the toilet, and hold me there.’
The twisting of the cyst made bending impossible.
The surgery: too little, too late?
In December 2013 Heather finally had the surgery she needed.
‘We had to remove the ovary,’ the surgeon told her when she woke up.
‘The size of the cyst and torsion had cut off the blood supply from my ovary, meaning it had been dead for some time. I was told I was lucky not to have died from sepsis.’
The ovary and cyst were black when they were taken out. While she was under, the surgeon checked her other ovary and assured her it was fine.’
‘I was in shock after the surgery, but the day after I was up and out of bed despite having undergone invasive surgery, because it was nothing compared with the pain I’d been in.’
‘I spent a couple of weeks in shock and recovering, before having a debrief with the surgeon. He told me I’d had a dermoid cyst which had likely been there since birth. Inside were teeth and hair, so they said it could have been a twin I’d enveloped in my mother’s womb.’
The aftermath
About six months after the surgery Heather came home to her boyfriend trying to break up with her. 'I suffer with a neurological condition called hemiplegic migraine. It mimics stroke symptoms, like speech loss, paralysis, and visual disturbances which means I often couldn’t function when I was having an attack. My boyfriend said he couldn’t deal with the fact that I was always sick. One problem had been dealt with, the cyst, but I was still sick. He also implied that I was making the condition up. We stayed together for another few months, but I was aware that it was drawing to an end because I couldn’t get better.’
Since then, Heather has been told that there is a chance, she may develop early onset menopause. ‘I want children, so I do worry about my fertility. If I’d known they were going to remove my ovary, I would have asked if there was a way of retrieving eggs from my right ovary when they had me cut open.’.
After consulting with a lawyer, Heather did receive £15,000 in compensation for their neglectful and untimely handling of her pain.
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