The current medical system sees women’s pain routinely dismissed, while complex conditions are often left undiagnosed and untreated for years. Now many are looking for another option.
“From when I started my period aged 11 up until my early 20s, was a decade where I honestly didn’t feel listened to at all,” says Jessica*.
“My doctors would blame it on puberty and hormones and repeatedly prescribe me the contraceptive pill. But even on the pill I would soak through the heaviest Tampax and the night time sanitary towel within an hour.”
She adds: “I was definitely made to feel that I was exaggerating my pain and being dramatic about it.”
Jessica, 29, was dismissed by her doctors for years as just having “bad periods”.
By the time she was in her late teens she was regularly missing school. Once at university, she would find herself bed bound in excruciating pain every time she got her period. Then sex became painful too.
“About six years ago it got too much and I went back to the doctor,” she recalls.
“As I started explaining he immediately said, ‘oh, women who are promiscuous often have these issues’.
“I hadn’t told him my sexual history at all, so to be automatically labelled as being promiscuous when I wasn’t even sexually active due to the pain, was a real slap in the face and so unprofessional.”
After a full sexual health check and a trans-vaginal ultrasound Jessica was later told she had a thickening of the uterus. It wasn’t until a few months later at a routine pill check-up that the nurse asked if she was on the pill for her endometriosis.
“I had no idea what she was talking about,” she says.
“She showed me on the screen the doctor’s note that I suspected endometriosis. They had known for six months and no one had thought to tell me.”
It takes on average seven and a half years to diagnosis endometriosis
The body is a battleground
Endometriosis is the second most common gynaecological condition in the UK, affecting around one in 10, or 1.5 million women – although frequent misdiagnosis and a lack of understanding in the medical profession mean this figure is likely to be higher.
Although there is no known cause, the condition is characterised by tissue similar to the lining of the womb that starts to grow in other places in a woman’s reproductive system.
It is commonly associated with pelvic or abdominal pain, but can also cause significant pain elsewhere in the body and lead to other symptoms, including painful sex, reduced fertility and fatigue. These can be completely debilitating and significantly impact a woman’s quality of life.
Jessica’s case is far from unique. On average it takes seven and a half years from the onset of symptoms for a woman to receive a diagnosis of endometriosis.
This is exacerbated by the fact it can only be diagnosed for definite by a laparoscopy, a surgery used to examine the organs inside the abdomen.
When Jessica was finally referred to a gynaecologist and underwent the surgery, they found stage four – the most severe form of endometriosis – on her uterus, ovaries, bladder and pouch of Douglas.
“I’ve been told that the pain will never go away because of where the lesions were,” says Jessica, who is now a reproductive health advocate and blogs her experience on The Endo Monologues, a satirical diary from the point of view of her uterus.
“Once I was referred to my gynaecologist she was amazing and she took me seriously. She said I should have been referred months, if not years ago.”
Jessica started a blog about women’s health and endometriosis
Like many women living with complex, undiagnosed health conditions, Jessica was made to believe that there was something wrong with her, that her symptoms were “just the way her body was”.
There is a long history of women’s pain being treated differently to that of men. Countless women feel they have been dismissed, not taken seriously and ‘medically gaslighted’ – a term used to describe the downplaying of symptoms with non-medical or emotional reasons by healthcare professionals – into believing their pain isn’t real.
It’s all in your head
There are biological differences in how women and men experience pain. Women supposedly experience more severe and frequent levels of pain, for a longer duration than men and are more likely to report migraines, musculoskeletal pain, and pain from osteoarthritis, rheumatoid arthritis, and fibromyalgia. Despite this, women are taken less seriously and are more likely to have their pain discounted as “emotional” or “psychogenic” and, therefore, “not real.
Women often have to make more visits to the doctor than men in order to be referred to a specialist and a 2014 Swedish study found that once in A&E women waited longer to be seen and were less likely to be classed as urgent cases.
If women aren’t taken seriously for conditions which affect both sexes, there is little hope for those which predominantly effect women and therefore aren’t widely studied in medical school.
The current model of medicine has largely ignored the complexity of the female body and many women are still unaware of female health conditions such as pelvic inflammatory syndrome (PIS) or vulvodynia, which often go undiagnosed and untreated for years.
In her book, Sex Matters, Dr Alyson McGregor points out that the “male-centric medical system” doesn’t allow for the subtlety and complexity of female-specific health issues.
“We have blanket terms for women’s symptoms (like PMS) but we don’t have a system for delving into those issues in a way that can consistently result in accurate diagnoses,” writes McGregor.
A report published in the Guardian last week revealed that women were twice as likely to be prescribed strong opioid medications such as codeine and Tramadol, with female sources telling the newspaper they felt “fobbed off” with painkillers while doctors failed to investigate the underlying causes of their symptoms.
Last year a Government inquiry uncovered that serious medical conditions were commonly dismissed as “women’s problems”, contributing to a string of healthcare scandals over several decades.
Dr Sally Ghazaleh is a pain management specialist
Dr Sally Ghazaleh, female pain consultant at Integro Medical Clinics, and pain management consultant at Whittington Hospital, and the National Hospital of Neurology and Neurosurgery in London, believes a lack of knowledge among GPs, plus a stigma that still exists around women’s health is to blame.
“A lack of knowledge at a primary care setting and perhaps women being met with scepticism, a lack of comprehension and feeling rejected, ignored, or blamed for their condition and experiencing a stigma towards women’s health, all contribute to conditions such as PIS and vulvodynia being undiagnosed and untreated for many years,” she says.
“At the same time doctors want to ensure there is no underlying cause that could be the source of the pain. Therefore patients will be referred to the specialist and by the time they will be seen this can be a very long time, which can have a huge psychosocial impact on women’s health.”
The UK government is now launching a review in an attempt to better understand women’s experiences of the modern healthcare system, including how pain is treated, which it says will create the first-ever government-led Women’s Health Strategy.
Seeking validation
In the meantime, many women are looking for alternative options.
Jessica has used CBD to manage her symptoms for around two years and now has a legal private prescription for medical cannabis subsidised through Drug Science’s Project Twenty21.
Cannabis allows her to manage her pain without the debilitating side effects of opioids.
“I vividly remember after my first surgery, they pumped so much morphine into me,” she says.
“I had no idea that a [medical cannabis] prescription would even be an option for me until someone suggested it.
“It would have been so much easier for me to go to the doctor and ask for some opioid based medication, than it was for me to get medicinal cannabis, but I don’t particularly like taking pharmaceuticals and I’d much rather take cannabis daily than morphine.”
Speaking to Cannabis Health earlier this year, Dr Rebecca Moore, a psychiatrist who specialises in trauma, anxiety and mood disorders, particularly related to women’s health, said she believes gender bias in the medical system drives women to look for another option.
“A lot of people come to us with stories of not being heard and of being dismissed, particularly from young women presenting with pain and perhaps unusual symptoms, with some form of mood component,” said Moore, who has supported hundreds of patients to access cannabis medicines since leaving her role in the NHS in 2018.
“There’s definitely something about the way medicine is gendered, that does lead people to look for another option.
“A lot of women have been told they’re depressed when clearly they are not, or they have been told that their pain can’t exist… I think it drives them to see cannabis as a route where they might be validated.”
Freya has spent tens of thousands on alternative therapies to manage her pain.
Thirty-six-year-old women’s rights advocate, Freya Papworth, was diagnosed with fibromyalgia only two years ago despite being in pain since the age of 13.
As a teenager doctors blamed her pain on the fact she carried her rucksack on one shoulder, then said it was the effects of a car accident she was involved in aged 21.
She spent years believing she was “going mad”, suffering from severe pain, major fatigue and constant sickness, before finally getting a diagnosis through a private clinic.
“I’ve been sent to a psychologist multiple times, because I must be crazy rather than have doctors take my pain seriously,” says Freya, who has spent upwards of £30,000 on alternative therapies such as private pilates classes, acupuncture, massage, hydrotherapy and physiotherapy.
She is currently self-medicating with cannabis while she explores the possibility of getting a prescription.
“You can see why more women are turning to alternative therapies. We are routinely ignored and disbelieved. Medicine is routinely not tested on women and we are often let down by the healthcare system.
“Then we are ridiculed for trying mindfulness or essential oils, when we’re just in pain and want to try and find something that works.”
The science to back it up
Increasing numbers of women are finding cannabis medicines helpful in managing their health conditions.
Since the legalisation of medical cannabis in 2018, many patients have discovered that the rebalancing of their endocannabinoid system can be effective in the management of conditions such as endometriosis, bladder and nerve pain, gynaecological pain and PMS, as well as mental health conditions such as anxiety, insomnia and depression.
“The endocannabinoid system plays a major role in many bodily functions, including sleep, stress, emotions, pain and immune responses,” explains Dr Ghazaleh.
“There are a multitude of cannabis receptors and endocannabinoids in the uterus and female reproductive system. That is why cannabis affects men and women differently and women appear to be much more sensitive than men to many aspects of phytocannabinoid action.”
Endometriosis has been linked to endocannabinoid deficiency. Women with the condition are thought to have fewer cannabinoid receptors in their pelvis, meaning their body isn’t equipped with the tools that would normally prevent the growth of aberrant cells and destroy them.
Studies have shown that when certain cannabinoid receptors are activated (either by the body’s endocannabinoids or THC found in cannabis) this could prevent cells from multiplying, while compounds such as CBD may stop the cells from migrating.
On top of this cannabis is an effective painkiller, with its anti-inflammatory properties and ability to desensitise pain receptors around the body.
Ghazaleh adds: “In view of the significance of the endocannabinoid system in female reproductive systems, medication that may interfere with cannabinoid action are now considered alternative options for women’s health.”
Beyond the stigma
But many women are still reluctant to be open about their use of cannabis medicines.
Freya says: “It’s interesting the amount of women I come across who are curious about trying it, just normal, suburban women.
“I don’t think many of us are being honest with our GPS, we’re worried about the stigma of being seen as a drug addict.”
Apart from her followers online – to whom she remains anonymous – only Jessica’s mum and partner know that she has a medical cannabis prescription.
Due to the nature of her job she is unable to disclose that she takes cannabis daily, despite the fact her prescription is legal.
“There’s still a stigma about cannabis in this country,” she says.
“A lot of people don’t even realise they could be eligible for a prescription,” she says.
“Women are made to jump through hoops to get a diagnosis. Whether it’s a gynaecological issue or not, we are not as high on the radar as men are and the gender pain gap is a real issue.
“I think it’s important for women to know that cannabis-based therapies are available and that they might be more suitable for them.”
Jessica and Dr Sally Ghazaleh, will take part in an upcoming webinar exploring the role of cannabis medicines in women’s health. The first episode on Wednesday 12 May at 7pm will focus on women in pain and their battle to get a diagnosis.
Other speakers include Abby Hughes, outreach director of PLEA (Patient-Led Engagement for Access) and Sarah Higgins CNS, women’s health lead for Cannabis Patients Advocacy and Support Services (CPASS).
The event is hosted by Cannabis Health in association with Integro Medical Clinics and CPASS, sign up for free here