Gaslighting Women with Fibroids: The Painful Reality and Medical Neglect
Lying in the operating theatre as she waited to be stitched back together after a dramatic emergency C-section, Lisa Chirgwin was shocked when the surgeon casually asked: “Did you know you’re absolutely full of fibroids?” Lisa, from Malvern, then 41, had been struggling with very heavy periods and pain for a decade but had been repeatedly told by doctors there was nothing wrong with her. “I was made to feel like I must be making it up or exaggerating,” she says. The diagnosis during her daughter’s birth came as a complete surprise.
Fibroids are growths of muscle and tissue in and around the womb. Although they are thought to affect two-thirds of all women at some point in their lifetime (and up to four in five Black women), they are relatively little known or understood.
In rare cases – fewer than 1 per cent – the growths can be cancerous. But around a third of women with fibroids struggle with symptoms including heavy and painful periods, a feeling of pressure in the womb area, bloating, a frequent need to urinate, pelvic pain and irregular cycles, says Amit Shah, consultant gynaecologist at the Fertility Plus clinic in London. Despite their prevalence, there has been relatively little research into fibroids. Doctors are unclear why they develop or why they only cause symptoms in some people.
“There has been a persistently low level of investment in research on women’s health and treatment – including around conditions such as fibroids, despite around two third of women developing them,” says Dr Geeta Kumar, consultant gynaecologist and Vice President of the Royal College of Obstetricians and Gynaecologists.
Mr Shah adds: “No one quite understands what causes fibroids. But some research shows their growth is driven by oestrogen, so fibroids develop most commonly in women of reproductive age, particularly in their thirties when oestrogen peaks.”
Lisa, who is the founder of the Rider Guider horse rider training app, had always had quite heavy periods but her symptoms escalated in her early thirties.
Her bleeding became so intense she was afraid to leave the house for fear of leaking. And during her period she experienced debilitating waves of intense pulling pain that would stop her in her tracks, leaving her unable to walk until they eased.
But when she repeatedly visited the GP asking for help, testing for fibroids was never considered. Doctors did consider endometriosis (where cells similar to those lining the womb grow outside it), which runs in her family, and has similar symptoms. It is common for women to have both endometriosis and fibroids. Lisa had a surgical procedure called a laparoscopy to check for endometriosis when she was about 34. But as the test did not check inside her womb, doctors did not find anything wrong. “When I came round and they said they didn’t find anything I was absolutely gutted,” she recalls. “It was so disappointing because I felt I would just have to live with these horrible periods.”
In an attempt to control her symptoms and having tried changing contraceptives without success, Lisa came off hormonal contraception aged 35.
She and her long-term partner decided to try for a baby – but six years passed without her conceiving. As she hadn’t wanted to pursue fertility treatment, she had a “lovely shock” when she unexpectedly became pregnant with her daughter. Her birth also led to the diagnosis she had been waiting 10 years for.
“The birth was difficult, my daughter became stuck,” Lisa recalls. “After the emergency C-section, I was so thankful and happy the birth had ended and I was meeting my daughter, so to then hear the surgeon say there were all these fibroids in my womb was actually a relief on top of relief. I just thought: ‘Thank God someone has found what it is’.”
Many women like Lisa describe having to wait years before diagnosis, being misdiagnosed or being made to feel they are making too much of a fuss. Lisa felt vindicated when she went back to her GP to explain what the surgeon had found and was finally referred for a vaginal ultrasound which showed five large fibroids and multiple smaller ones in her womb.
She was never told exactly how many. “The ultrasound was so straightforward, I have no idea why I wasn’t given one when I first complained of symptoms,” she adds.
Even if a GP refers a patient for an ultrasound scan, the wait can be months on the NHS. Mr Shah says he finds it “alarming” there are such long waits for “such a simple test”. “It can feel like everyone is a little blasé [about the symptoms]. It’s very frustrating,” he adds. “A lot of women are told to ‘get on with it’ – it’s insensitive. If there’s a problem, we should look into it.”
Even when fibroids are diagnosed, patients can expect to wait around a year for treatment on the NHS – more than 750,000 people are currently on the waiting list for hospital gynaecology treatment in the UK, including for fibroid treatment.
Dr Kumar says treatments for fibroids differ depending on what symptoms they are causing, where they are, their size and whether the woman wishes to have children.
Medical treatments include drugs which change the way blood clots inside the womb, aiming to make periods less heavy and painful, or hormonal drugs or contraceptives which stop periods altogether. These reduce symptoms instead of tackling the root cause, are not always effective – and can’t be used by women who are trying to conceive.
Surgical treatments range from procedures to shave parts off fibroids via keyhole surgery to a major operation to cut out fibroids. In severe cases, women can have a hysterectomy to remove their womb entirely. These all carry the risk of complications, like bleeding or infection, and may have a long recovery time.
The positive news is that some new treatments are being developed which provide another option from medication or surgery. Embolisation is where a tiny tube placed into an artery in the groin is used to block blood supply to the fibroids, which makes them break down.
Another treatment is sonography-guided transcervical fibroid ablation (Sonata), where a probe device is inserted into the womb through the cervix which delivers radiofrequency energy to fibroids to make them shrink.
“[These procedures] can help destroy the fibroids without major surgery,” explains Mr Shah. “But we don’t know the long-term safety and outcomes, including the effects on fertility.” New treatments are also only available in a handful of NHS clinics around the country, meaning not everyone will have access to them.
Lisa ended up having major surgery to have three of the largest fibroids removed. She now feels like a ‘new woman’
Last week, it was announced that thousands of women with fibroids will be offered a daily tablet on the NHS that shrinks them and reduces symptoms. The treatment, Linzagolix, works by reducing the release of hormones and will be an option for patients with moderate to severe symptoms. In Lisa’s case, she ended up having major surgery around a year after her daughter was born, when she was 42. Surgeons removed the three largest fibroids and she was also advised to have the Mirena hormonal coil fitted. “I was a new woman,” she says. “My periods stopped completely. I still had pains but nowhere near as bad as before.”
When she had to have a surgical procedure to remove the coil five years later, as it got stuck, doctors found she still had some small fibroids but the large ones had not grown back. Now aged 49, she no longer uses the coil but her symptoms remain under control as she enters perimenopause. As fibroids are hormone-driven, they typically reduce in size and symptoms ease when oestrogen drops off at the menopause.
Lisa is frustrated she was not diagnosed years earlier and that the delay may have contributed to her difficulties conceiving. She says: “For years I was struggling and made to feel like it was all in my head. It’s frustrating to know I might have avoided that if someone had listened to me.”
