Carla Lewis, 45, is one of the 1.5 million women in the UK affected by endometriosis. Regrettably, she’s also among the numerous women with a devastating medical story to tell as it took her nearly two decades to get her diagnosis.
Her quest for treatment also pushed her to the brink of suicide. She bravely shared her story with Reach in the hope that it would inspire other women to advocate for their rights in the doctor’s office and stimulate improved care within the healthcare system.
She said: “It really all started, way, way, way back. When I first started my periods, straight away something felt off.”
Carla’s mum assured her symptoms were ‘just what it is to be a woman’, but it quickly became so severe that she was put on birth control at the age of 12, much to her father’s chagrin. The pill did not provide much relief though, and she frustratingly recalled having to explain to male PE teachers that she really was on her period for the second or third week in a row but did not know why.
At 19, Carla’s health deteriorated and her medical team was convinced it was a gastrointestinal issue: “They treated me for everything. Crohn’s disease, ulcerative colitis, inflammatory bowel disease, and I was on medication that I had no business being on. I’ve had so many colonoscopies, endoscopies, medication that was incredibly tough on your system. I kept bringing up endometriosis… for years and years I begged doctors because I knew it wasn’t gastro,” she said.
“When I was about 28, I was like; ‘I’ve had enough’. I demanded that I see a gynaecologist or I would go to the complaints department. At gynaecology, the first meeting with the doctor, he was convinced I’ve got endometriosis.”
Dr Shirin Lakhani highlighted the alarming frequency of such misdiagnoses, stating: “42% of endometriosis sufferers had visited the GP at least 10 times before getting their diagnosis in the UK and that a worrying 78% of respondents were told they were ‘making a fuss about nothing or similar’ before their diagnosis. This just isn’t acceptable.”
After 17 years since her symptoms first appeared, Carla finally underwent surgery where doctors discovered endometriosis in places they had previously assured her “it’s impossible to get there”. Yet, even with a confirmed diagnosis, Carla’s medical journey faced further challenges.
Post-surgery, she faced a daunting choice: “(The doctor) told me, you need to decide within the next six months if you want children, because I’m going to give you a hysterectomy and my jaw hit the floor. There was no discussion, he made it seem like I didn’t have a choice in that matter.”
Carla, like many 28-year-olds, was undecided about having children, but when she returned to the doctor’s office: “He explained to me that endometriosis was a punishment from God because women who choose not to have children anger God… You feel that you’ve done something wrong, that it’s your fault.”
After encouragement from a friend appalled by her treatment, Carla sought a second opinion and eventually fell under the care of “possibly the worst woman doctor I have ever come across in my life.” She recalled a particular exam during this time left her still suffering the consequences: “I’ve still got PTSD off that, I refused to go back. I’m so terrified to go back.”
Valentina Milanova, a women’s health expert and founder of Daye, highlighted that such horrific experiences aren’t uncommon, commenting: “Patients with endometriosis frequently face gaslighting, such as being told their agony is ‘normal’ or subjected to invasive exams without consent.”
After enduring four surgeries and numerous negative encounters with conventional medicine, Carla reached her breaking point: “I didn’t want to be here anymore. I remember thinking; ‘If this is what it is to be like I won’t be here anymore’. I was willing to try anything.”
While searching for alternative treatment options, Carla discovered Releaf, a medical cannabis clinic but initially faced some scepticism. She said: “My GP, when I brought up the Releaf, she was like; ‘Carla we’ve tried everything. The next stage is morphine’.”
Through using Releaf’s services, Carla managed to significantly reduce her reliance on other painkillers like Tramadol, only turning to it occasionally instead of every day. But it was not just the treatment she was prescribed that changed her outlook on life: “I never walked away (from Releaf’s clinic) thinking, ‘You don’t understand me’.”
With a laugh, Carla revealed that the munchies were the only noticeable side effect of medical cannabis she had experienced. She added: “I’m still in pain. But I don’t want to end my life anymore.”
Dr Lakhani noted that medical cannabis is increasingly sought-after by patients with endometriosis, especially those in limbo awaiting a diagnosis. Other growing alternative therapies include massage, acupuncture, and heat therapy.
Carla shared her advice for those fighting to get diagnosed: “It is your legal right to be able to get a second opinion from a different doctor. If a doctor says to you; ‘It’s normal, all women are in pain’, run for the hills and go and get yourself a new doctor. It’s not normal to be laying on the floor, in the fetal position crying. It’s not something to be ashamed of.”
Dr Lakhani encouraged open communication with healthcare providers, stressing: “Don’t feel like you should be suffering in silence. Something to look out for is if your doctor continuously tells you that you are ‘being dramatic’ or ‘it’s not that serious’, or any comment that makes you feel dismissed in any way. As long as you are clear and respectful about your situation, doctors should have no problem referring you to a specialist if you are not satisfied.”
She also explained that while surgery is the most definitive method for diagnosing endometriosis, alternatives exist: “Many women could be told that the only way to diagnose (endometriosis) is through an invasive surgery. Although the best, most sure way to diagnose endometriosis is through a surgery to examine the endometrial tissue, you can also ask for an ultrasound or MRI to look a bit deeper into your symptoms and possibly get diagnosed this way.”
Valentina addressed the challenge of confronting bias within the medical industry and highlighted the importance of advocacy, saying that patients could use tools like Endometriosis UK’s pain diary or Daye’s Period & Pelvic Pain Clinic to track and document their symptoms and “persistently seek second opinions until finding empathetic specialists”.
In conclusion, Dr Lakhani emphasized the impact of early detection on managing endometriosis and patients’ reproductive options: “We need to make sure women feel like they are listened to and that they can talk to professionals about symptoms.”