When Selling Sunset’s Chrishell Stause and model Hailey Bieber recently revealed they were suffering with ovarian cysts, I knew full well how they felt. I have never before — or since — felt anything quite as agonizing as a cyst the size of an orange causing my ovary to twist three times around my fallopian tube. My hope is you never will.
For two months I repeatedly went to the GP with nagging pelvic discomfort, bloating, and problems peeing. Twice I went to the emergency department, where waves of pain rattled up my side and left me screaming on the floor. Each time, doctors variously suggested I had a UTI, ovulation pain, an STI, or polycystic ovary syndrome. When I was finally admitted to the hospital, they thought I had kidney stones and surmised I was passing them faster than an ultrasound could spot them.
But when my friend came to visit me on the ward, she didn’t hesitate. Since she’d just lost her ovary to a cyst, her diagnosis seemed plausible, and I broached it with a health care worker. "It won’t be that," he said. "Anyway, we already scanned your ovaries."
When the pain got so bad that morphine barely helped, an elderly woman in the next bed held my hand while I sobbed. I begged a doctor for another scan but by the time they did one, it was too late. The 10cm cyst that had almost certainly not appeared overnight had ruptured and I was bleeding internally. The only option was emergency surgery to remove the necrotic ovary wrapped around my wasted tube.
Though not all cysts cause the kind of trauma I experienced, they are, in themselves, relatively common. There are two main types: functional and non-functional.
Non-functional cysts are less common than functional cysts. Some contain a variety of tissue like bone, hair, and mucus, explains Andrea Maduro, MD, medical advisor at period tracker Flo Health. Even though they’re usually benign, they don’t go away on their own and require surgery to be removed.
Functional cysts happen when the ovary is performing its basic monthly function. During ovulation, the follicle should release an egg then break down and disappear, explains Dr. Maduro, but sometimes it doesn’t and instead fills with fluid. These cysts are fairly common, says Ghada Salman, MBChB, MSc, FRCOG, consultant gynecologist at the London Clinic and University College London Hospitals, tells Refinery29.
They usually cause no symptoms and resolve on their own but, Salman adds, some can cause pain and discomfort in the lower abdomen or pelvis, bloating, pain during sex, nausea, irregular periods, and discomfort during peeing or bowel movements. And though it’s rare, one of the biggest risk factors is when the cyst gets larger than five cm and causes the ovary to become unbalanced and twist, known as torsion. If it’s not treated, it can eventually cut off the blood supply, causing the ovary to die.
"It’s not common but, if it happens, it’s one of the worst complications of a cyst if it is not treated in time," says Salman. "That’s why it’s considered one of the top emergencies when we teach our junior doctors. If a woman presents, especially in reproductive age, with pain that is not resolving, then immediately we think about exclusion of torsion."
One study, published in 2015, estimates that ovarian torsion affects about six in 100,000 women every year and only a small percentage of cysts rupture, Salman adds, so I was doubly unlucky. I might have had a different outcome had I been diagnosed and treated sooner. Instead, my concerns and symptoms were at best misdiagnosed and at worst dismissed.
Valentina Milanova, founder and CPO of women’s health company Daye, was 14 when she experienced something similar. Doctors repeatedly suggested her ovarian cyst symptoms were caused by an ectopic pregnancy, despite the fact she’d never had sex.
"I thought, Oh my God, am I actually pregnant? And picturing these crazy scenarios like, had I been sexually attacked in the night, was I drugged, was it from swimming and sperm had swam inside me? You lose your mind," she tells Refinery29.
Valentina was off school for a year and virtually bed-bound with pain while doctors tested her for E. coli, UTIs, and kidney stones before she eventually had surgery to remove a cyst. The experience had a "huge psychological impact" on her.
When you're told by an expert you're wrong [about your body], it makes you distrust your own judgement and [feel] more timid about asking for help or challenging anything.
Dr Audrey Tang
I, too, suffered long-term effects caused by my ovarian cyst. The whole experience contributed to the breakdown of my relationship, delayed my career by a year, and left me with a scar almost from hip to hip. I was diagnosed with PTSD, an adjustment disorder, and depression, which lasted two years. Even now, many years later, I distrust doctors and need anxiety medication to go to hospital appointments. That, and the memory of the pain, are part of the reason I’ve decided not to have kids.
Audrey Tang, PhD, a chartered psychologist with the British Psychological Society, says these reactions are understandable.
"You’ve been through something potentially life-threatening and you were dismissed, which can be huge," she says. "And that has a ripple effect because when you’re told by an expert you’re wrong, it makes you distrust your own judgment and [feel] more timid about asking for help or challenging anything. It brings with it feelings of 'What did I do wrong?' and 'How can I trust again?'."
A recent article published in the British Medical Journal highlights that women are more likely than men to experience what’s known as medical gaslighting. It’s not always easy to spot, says Dr. Maduro, explaining that some of the common signs are being made to feel like symptoms are in your head or having them consistently dismissed or downplayed. She recommends going prepared to appointments with written questions, taking a friend for support, and asking for a second opinion.
"If you recognize any of the signs of medical gaslighting, it’s important to speak up and advocate for yourself," she says. "Keeping track of your symptoms by either writing them down or using an app can arm you with evidence."
Of course, not all medical professionals gaslight their patients, deliberately or otherwise. Dr. Tang suggests that "people are overworked, there’s compassion fatigue, a lot of broken systems" and doctors might not be trained to recognize women’s health problems. Valentina agrees a lack of funding for gynecological health is part of the problem. Less than 2.5% of publicly funded research in the UK, where I live, is dedicated to reproductive health, despite the fact that one in three British women suffer from a chronic gynecological problem.
"Until there’s an adequate bridging of the gender gap in medical research and innovation, so that symptoms of female-specific conditions get recognized by doctors who are trained, we have to be our own health advocates and fight for ourselves," says Valentina.
In a perfect world, the onus wouldn’t be on women to do this. Nor would it be potluck whether a patient is seen by someone who not only recognizes a women’s health problem like ovarian cysts but acts quickly. Spotting the signs is crucial to avoiding an outcome like mine — if done so early enough, much less invasive treatment options are available, from simply keeping an eye on it to taking the pill and keyhole surgery.
Salman says that anyone experiencing symptoms should speak to their GP to arrange an ultrasound. If the pain is severe, go straight to the emergency room and ask to see a gynecologist.
"I see a lot of cysts every day and definitely not all of them need treatment but some women, and some cysts, do," Salman adds. "That’s why I think it’s really important to raise awareness of symptoms because women don’t often realize they can relate to cysts. I hope if we keep doing that it will help and empower women – and that will lead to a good outcome."