From diagnosis to treatment, pain experienced by women is often brushed off as ‘women’s issues’. Colitis sufferer, Rebecca Denne, investigates why this is the case, what causes our pain to be often disregarded & how to get the support you need
My experience of not having pain taken seriously began in February 2018. I started having extreme cramps – a cross between period pain and that fiery feeling of diarrhoea. I was rushing to the bathroom bent over in agony, spotting blood in my stools. My pain was passed off by my doctor as IBS, which didn’t feel right. I pushed for further investigations, but a sample came back with no cause for concern. I felt dismissed. Was I meant to just accept the pain and get on with it?
Months passed and my symptoms got worse. The cramps were daily, my tummy bloated and I remember counting 24 visits to the toilet one particularly hideous day when luckily I was working from home. After pushing for a colonoscopy, I was diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD) that affects the large intestine.
Over time, I’ve learned to manage the pain and other symptoms by avoiding foods that cause a flare-up (hello coffee) and keeping an eye on my stress levels. I train at the gym five days a week, and practise yoga and self-reiki to help ward off flare-ups.
While I consider myself lucky to have been diagnosed within six months (some research indicates women are more likely to experience a delayed diagnosis for IBD than men), had I not been persistent, pain may have become part of everyday life, like the many women out there suffering in silence. The gender pain gap suggests there’s a gender divide when it comes to pain, both in how it’s perceived and treated.
A 2021 ‘Gender biases in estimation of others’ pain’ study from the University of Miami, revealed that despite exhibiting and reporting the same level of pain, women were less likely to be prescribed pain relief than men and more likely to be referred for psychotherapy. And evidence shows women receive less pain relief than men when undergoing similar medical procedures.
‘Pain is a complex topic that’s individual to each of us,’ says NHS GP, Dr Rachel Ward. ‘While psychosocial factors, childhood experiences, responses to medication and so on, are part of the equation, evidence reveals men and women actually respond differently to pain. ‘We also have different behaviours, with men less likely to come forward with health issues.’
While 70% of patients who suffer chronic pain are women, clinical paper 'The girl who cried pain: a bias against women in the treatment of pain' indicates men are more likely to be referred for treatment directly by their GP while women must seek specialist opinion themselves.
But why? The same 2021 Miami University study cited earlier partially puts this down to stereotypes. ‘If the stereotype is to think women are more expressive than men, perhaps “overly” expressive, then the tendency will be to discount women’s pain behaviours,’ says Elizabeth Losin, assistant professor of psychology and director of the Social and Cultural Neuroscience lab at the University of Miami, who co-authored the study. The flip side is that men are perceived to be stoic, so when a man expresses intense pain, we think he must be dying.
What’s more, there remains a lack of knowledge in the world of women’s health; 80% of pain-related studies are conducted on men or male mice – with researchers suggesting menstrual cycles could impact the results. In fact, women weren’t even included in clinical trials and research until 1993. Could the gender pain gap be closed finally if we just knew more and invested more in women’s health?
Suffering in silence
That’s certainly the view of Carly Adkinson, 39, a teacher from London. ‘My periods were always heavy and I passed out in a science class once because of the pain,’ Carly recalls. ‘Because I had a lot of pain in my back, lower abdomen and pelvis, I was diagnosed with arthritis of the lower spine. That didn’t make sense to me, but I just accepted it.’ Twenty years later, Carly was eventually diagnosed with endometriosis (the average time it takes to get an endometriosis diagnosis is seven and a half years). ‘I tried to talk to one doctor about how low the pain made me feel and he said, “That’s just your personality”. I felt invisible.’
‘It’s important women feel heard,’ says Dr Ward. ‘Historically, pain related to gynaecological issues was poorly understood, although now we have things like specialist pelvic pain clinics. Nobody in pain should feel they’re being brushed off.’ Remember, it’s OK to ask to be seen by a specialist, although it’s worth noting that seeing a specialist might not be appropriate for everyone. Going to your GP armed with the right information is the first step to feeling heard, which is why Dr Ward suggests keeping a diary; what type of pain is it, throbbing, a dull ache or stabbing? Where is the pain and does it move? How does it respond to medication? Is it worse at night or stopping you from doing activities?
‘Sometimes, when we ask patients lots of questions about their pain, there’s an assumption we’re trying to disprove it. In fact, we’re trying to build a picture and get the right diagnosis and treatment,’ Dr Ward explains. ‘There’s no test that says, “your pain level is high” in a way I could do with a blood test to measure inflammation, for example.’
For Nathalie Redfern, 35, director of kidswear company Buildabundle (buildabundle.co.uk), pain was part of daily life to the point where her misdiagnosis has left her registered disabled.
‘When I was pregnant with my second child, I experienced pain in my right hip. I felt my bones grinding and was physically sick from the pain. I went to the doctors several times, was told it was pregnancy-related pelvic girdle pain and given painkillers,’ she says.
While Nathalie’s pain lessened after giving birth, it returned during her third pregnancy and persisted long after. ‘Doctors prescribed higher doses of painkillers, but the side effects made looking after my three young children impossible. At one point, the doctor offered antidepressants and made me feel like it was all in my head.’
Soft tissue therapist Vic Paterson runs State 11, a specialist clinic dealing with joint, muscle and nerve pain, and says Nathalie’s case is not uncommon. ‘We see a lot of people, in particular women, struggling with long-term pain but have trouble getting diagnosis or treatment. Clients find themselves being eventually sent for an investigative scan, only to be told the results are normal and that’s the end of things,’ Vic shares.
For Nathalie, it wasn’t until her ninth visit to her GP that she was sent for an X-ray: ‘I was finally diagnosed with bone spurs on my right hip joint. Over three years and two pregnancies, the spurs had ground my hip joint away.’
She had a full hip replacement at the age of 31. Four years later, Nathalie struggles with daily activities. ‘I’m permanently disabled and life is not how I thought it would be at 35. I’ve a mobility scooter. My life is severely limited, all because I wasn’t believed or properly assessed,’ she says.
For Vic, Nathalie’s experience doesn’t surprise her. ‘We’ve seen clients with long-term pain who’ve been sent away with painkillers and advice to have massages or hot baths, only to discover months later that it was a symptom of a more serious condition,’ she says. ‘Women who struggle with joint pain are often told to lose weight.’ While this may be good health care advice, this should be alongside investigations or support.
How to be heard
‘Many of our clients find taking a friend or relative into the appointment can change the attitude of a previously dismissive professional. The NHS’ Patient Advice and Liaison Service (PALS) can be helpful chasing results and acting as advocates on your behalf,’ advises Vic. ‘You know your body better than anyone else, so trust yourself and challenge things if you feel you’re being brushed aside.’
Remember, it is vital to get medical advice if you’re concerned about your health and wellbeing, adds Dr Ward. ‘Nobody should have pain as part of their everyday life and it can be a sign of a serious medical condition. And while there’s been huge progress with treatments for gynaecological pain over the last 50 years, we need to continue the discussion around women’s health,’ she says. So, let’s keep talking.
Here to help
‘For mild to moderate short-term pain, and pain management, Boots pharmacists are available to help,’ explains Ifeefa Nisar, a Boots pharmacist, based at the Netherfield store. ‘With a Boots pharmacist in every store, we have more than 20,000 pharmacy advisers and pharmacists who you can have a chat with about your pain symptoms. We provide support, and advice, including treatment options to help manage symptoms if appropriate.’ For severe symptoms or undiagnosed pain, visit your GP.