Sally’s Story
“I’m hopeful that next year I will be able to continue to advocate for myself, and not allow my life to be dictated by my period.”
At 18 years old, after Sally’s son was born, she started taking the Depo injection for contraception. Other than slight pain around the time her next injection was due and headaches, she didn’t have any issues, and she liked that her periods were almost completely absent.
‘Four years later in 2016, I started to feel a gnawing, grinding pain in my hip that would sometimes last for days at a time. I went to my GP and had multiple blood tests, but they all came back clear, and I was told nothing was wrong.’ This went on for three years.
In 2019 the pain got so bad in her hip, and now also her lower abdomen, that Sally was going to A+E on a monthly basis. ‘The pain was horrific – the same, if not worse, than giving birth. It was also just mentally exhausting.’ She had blood tests and scans, but there were never any findings and she was always sent home and told to come back if it got worse.
Not only did the pain affect her physically and mentally, it began to affect her financially. She was working in hospitality at the time; ‘I was signed off work for six months as there were days I couldn’t get out of bed. I didn’t have guaranteed shifts and so I had to take this whole six months unpaid which was incredibly stressful.’
Getting a laparoscopy
After a particularly bad episode of pain, where she was in hospital every day for 14 days, she was finally referred to gynaecology. After a 12-week wait, Sally described her symptoms to the gynaecologist who suspected it was endometriosis. He scheduled her a laparoscopy, eight weeks later; ‘I was getting surgery so I thought that finally my condition was being taken seriously. I was looking forward to finally getting some answers, but the results came back that they couldn’t find anything definitive.’
Although there were no answers, her symptoms started to settle after the surgery and Sally was hopeful. She returned to work, but when she asked for more shifts her manager was hesitant and it felt obvious to her that she was being punished for having called in sick so often in the past.
Severe period pain
In 2020 Sally was unable to receive her Depo injection due to the COVID pandemic. Her period returned, which was heavy and irregular, but it only lasted a few days at a time and with minimal pain. As the year went on, however, with every period she began to experience severe abdominal and hip pain, migraines, and even heavier bleeding. ‘The only way I can describe the pain is like my ovaries were ready to explode. There were so many nights I would wake up lying in a pool of blood, wailing in pain.’ After returning to her GP, she was prescribed a strong painkiller to help with the pain.
Over the next year, there was no improvement in her symptoms, and she also began to notice her bowels were affected by her period. ‘While on my period I started to try to avoid having a bowel movement, as it was so painful I would almost pass out. I stopped eating before my period, which I know makes no sense, but I didn’t know what else to do, and would try anything.’ Sally was eventually referred to a gastroenterologist and had a colonoscopy – but they could not find anything which would cause the pain.
She called her GP again and she was then prescribed tranexamic acid, to reduce the heavy bleeding, more painkillers and Buscopan to help with her bowel issues, which resulted in her having to take 20 tablets every day for a week each month.
Frustrated, Sally asked to be referred to gynaecology again. Sally had started working as a bank-healthcare worker, but she found herself unable to take as many shifts as she would like, and getting into debt as a result. She also felt her relationship suffered as a result of her symptoms; ‘My partner was supportive and understanding – helping me wash pyjamas and blood-covered bed sheets more times than I can remember. But even though I knew I couldn’t do anything, I still felt bad about it. I felt sad that we weren’t able to go out and do things together when I had my period.’ There were more hospital trips with intense abdomen, hip and back pain, and even multiple miscarriage scares, due to the size of clots she would pass with every period.
Getting the Decapeptyl jab
Due to the backlog as a result of the pandemic – Sally’s wait for her second gynaecology appointment took 15 months. Now married to her long-term partner and having decided they did not want any more children, she pleaded with the gynaecologist for a hysterectomy. She was refused this due to her age, and was told the risks were too high for her overall health at the age of 29, in particular due to the risk to bone health when permanently entering early menopause. With the only other alternative being hormonal contraception which she did not want, Sally was given the Decapeptyl jab which mimics menopause. She experienced some brain fog, dry skin and mood swings, but she was also given HRT tablets, which helped to balance out some of the side effects.
‘The Decapeptyl injection has been life-changing. I now work full-time and have never had to call in sick. I haven’t put on weight – which is a known side effect I was concerned about, and I no longer have to miss out on social events, and don’t need to plan whether I can go to things based on the fear that I’m going to bleed through my clothes.’
Sally still doesn’t have a confirmed diagnosis and doesn’t know if she will ever have one, but her gynaecologist believes it is likely endometriosis, fibroids, a hormonal imbalance – or any combination of these. Thanks to her current treatment, her quality of life has improved dramatically and she is now able to spend time with her husband and 11-year-old son, go to the gym almost every day, and spend time with her family and friends.
Unfortunately, her gynaecologist has advised it is only safe to remain on Decapeptyl until January of next year – a couple of months before her 30th birthday. ‘It’s so unfair, as there are so many women with similar stories and while it is positive that it’s something people talk about more, there still seems to be really limited medical treatment options. It can’t be right that people like me spend seven years to finally find a treatment that works, but are then told it’s only for a few months and then we have to start over again. It’s a depressing thought that I’ll likely have to put up with this until menopause. I’m hopeful that next year I will be able to continue to advocate for myself, and not allow my life to be dictated by my period. ’
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