Rebecca’s Fibroids story
“I think it’s important we bring more awareness to fibroids. It can impact every area of your life - mentally, physically and also affect your career and personal relationships.”
Rebecca had been on the copper coil for 8 years when her story began. Throughout her life, she had always suffered with heavy and sometimes painful periods, however in the last 4 years they began to get even heavier - so much so that she soon found herself avoiding events and having to change her period products from standard to heavy flow pads.
Symptoms began
At the beginning of last year, whilst working late hours at a demanding job, Rebecca started experiencing a dramatic increase in her period symptoms and also abdominal pain. She also began experiencing stabbing pains in her pelvic area as well as nausea. ‘I did not feel right. I was worried that my coil was dislodged’. Hoping to get to the bottom of her symptoms, Rebecca took the first steps and visited her GP.
At her appointment with a trainee nurse, she explained her pain. ‘I said I think it’s the coil. She had a look and couldn't see the wires’. It was at this moment that Rebecca felt in her gut something just wasn't right. She was booked in for an appointment with the sexual health clinic to remove the coil and was understandably worried.
Visiting the sexual health clinic, she was examined by a nurse, who confirmed she couldn’t see Rebecca’s coil. ‘The nurse carried out a scan to locate the coil; however, due to a shadow on the screen, the nurse said, ‘I can’t see your ovaries; there’s a big black mass on the screen’. The nurse called another doctor to come into the room and asked Rebecca if she was comfortable with a hand examination being carried out. Rebecca nervously agreed, anxiously waiting and uncertain as to what was to happen next.
First, learning about fibroids.
Worried and in a lot of pain, and stressed out at the sexual health clinic, Rebecca was shocked to learn of the reason for her ongoing symptoms. ‘She sat me down and said, ‘Have you ever heard of fibroids? I think this may be the cause of your pain and enlarged uterus.’ I knew about fibroids from a friend who had suffered with fibroids. I called my friend straight away. We both couldn't believe it. I left the appointment totally in shock and confused. I just went there to get the coil removed…’
Rebecca was shocked to learn that because of the fibroids, her uterus had enlarged to the size of a six-month pregnancy.
Next steps & the fight to be ‘heard'
Things moved quickly for Rebecca from there. She was booked in for a transvaginal scan and blood tests at her local hospital. On top of processing a new diagnosis, the pain kept getting worse and with regular painkillers unable to help ease the pain, she found herself in A&E. After being shuffled between appointments and referred back to her GP, Rebecca took matters into her own hands.
‘You have to advocate for everything. I pushed and insisted they did a scan’.
Finally, the A&E team agreed to perform a CT and kidney scan. The results revealed the truth to her: she had a bulky uterus with fibroids stretched to her pelvic walls close to her right kidney. This explained what was causing her excruciating pain. The fibroids were also obstructing and pressing on the coil, contributing to her agonising pain. Despite this huge finding, no immediate action was taken. Rebecca was referred back to her GP, only to be told she’d have to wait 10 months until she could be referred to a gynaecologist to have the coil removed. In continual pain, desperate and with no immediate next steps on the horizon, Rebecca reached a breaking point: ‘I remember crying on the phone. I said a prayer and said God please, let this appointment be brought forward’. Rebecca felt trapped, with nowhere to turn. ‘It’s like you have to advocate for everything yourself’, she recalls. Despite the overwhelming frustration and exhaustion, Rebecca kept pushing. She knew that if she didn’t fight for her own health, no one else would.
Finally finding relief
Feeling at a loss, Rebecca explored her options outside of the NHS. Through searching online directories, she booked in an initial assessment to see a private consultant who also worked within the NHS. ‘The consultant greeted me with warmth’. At the appointment, two nurses and the doctor examined her and performed a scan. At first, Rebecca’s coil couldn’t be located. After more searching, the doctor located her coil, which was pushed up further and deeply embedded. After what felt like an eternity of waiting, Rebecca finally had her coil removed. ‘Tears flowed through me once the doctor said it was out.’
She was told that there was a lot going on and was informed that an MRI scan was necessary to rule out any additional risks, as fibroids can carry a small (1 percent) risk of cancer, especially when there are signs of rapid growth in a short time period. Rebecca was put on the NHS Cancer Pathway and underwent a number of appointments in a short space of time, including a hysteroscopy to check for signs of uterine cancer and any submucosal fibroids (fibroids that grow in the muscle layer on the uterus and bulge into the uterine cavity).
To her relief the results were all clear. She awaited her MRI scan on the NHS. Unfortunately, just a day later she was rushed to hospital with a severe pelvic infection - an only one in 400 chance of happening after this kind of procedure. Rebecca was hospitalised for 4 days and underwent further scans and tests which revealed more large fibroids. An MRI scan ruled out cancer, but it did vividly display 5 fibroids - the largest being 12cm x 10cm – a difficult piece of news for Rebecca to process.
25 fibroids
5 months after first being diagnosed with fibroids and tirelessly advocating and suffering with physical pain and emotional distress, Rebecca underwent an open myomectomy (major abdominal surgery) on the NHS. Whilst in recovery, the surgeon came to see Rebecca and said ‘the surgery was a success and I removed 5 times the amount that showed on the MRI - 25 fibroids were removed!’
The next day the nurse showed Rebecca a photo of the fibroids that had been removed. ‘I cried whilst staring at the photo in disbelief that I have been carrying these around inside of me and had no idea’ Rebecca remains optimistic about the future, having developed a better understanding of living with fibroids. Unfortunately, 4 new fibroids were discovered on a scan along with a cyst, which she is managing the best she can whilst keeping on top of her hospital appointments. While her journey is far from over, the clarity and understanding she now has bring her some comfort and help her move forward.
Becoming an advocate
Rebecca offers crucial advice for anyone navigating the healthcare system – the importance of advocating for yourself whilst being kind wherever you can: ‘When you’re speaking to staff in the hospital, always be kind to the receptionists and medical staff as they will often remember you. It makes a difference. But above all, advocate for yourself and trust your instincts — no one knows your body better than you, and sometimes, you have to push to be heard.’
Today, Rebecca is a passionate advocate for fibroid awareness, determined to open the dialogue and spread knowledge about the condition. She works with the @guidancesuite, an organisation supporting people living with fibroids through in-person events and online support groups. Her story is a powerful reminder of the importance of self-advocacy in healthcare and the emotional toll it can take when you’re left to navigate the system alone. For Rebecca, the journey has been lengthy and challenging, but her persistence serves as a testament to the strength it takes to be heard.
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