According to Nurofen’s Gender Pain Gap Index Report1, one in six women are living with severe pain, yet it can be dismissed by healthcare professionals and is underrepresented in research. Why? Because ingrained gender biases leave many women’s painful conditions mistreated by healthcare professionals and misunderstood by family and friends, sometimes for decades. We spoke to nine women who had to persist for their pain to be taken seriously …
‘Undiagnosed endometriosis destroyed my mental health’
I’ve always had painful periods but they became debilitating when I was at university. Even now, some days the pain is so bad I can’t walk. I went to my GP on numerous occasions but was always made to feel like it was in my head, that menstrual pain was “normal” and I just had to deal with it. But it was so excruciating that I couldn’t, and my mental health became so bad that at one point I was signed off work for three months and considered taking my own life. Luckily, I moved house and changed GPs and felt listened to for the first time in more than 10 years when I was referred for a laparoscopy, resulting in an endometriosis diagnosis. I opened my eyes after that operation and asked: ‘Did they find anything?’ When the nurse said: ‘Yes’, I broke down with pure relief. They cleared my endo tissue, which gave me a few pain-free years but as it’s returning, I’ve paid to have another private procedure this spring. When I think of all those years I spent unable to work and live my life, I feel vindicated. It wasn’t all in my head and there was something that could be done, so why did it take so long? Lauren, 32, Sheffield
‘My thyroid disease was overlooked for years’
During my 20s and 30s I just never felt “well”. I was eternally cold, in pain, depressed and tired. I gradually put on weight, which I couldn’t shift, and that – coupled with my low mood – triggered an eating disorder. I went to the doctor numerous times, but it was always put down to just my body responding to something like my disordered eating or coming off the pill and quitting smoking, and I was told it would “pass with time”. For years, I was waking up feeling exhausted and in pain, like the day ahead of me was thick mud that I had to somehow trudge through. I couldn’t understand how people were living if this was what “normal” felt like. It got to a point where I just didn’t want to be around any more and I broke down in front of my GP, crying that I just couldn’t live like this. Finally, they sent me for some blood tests and by 8am the next morning I’d be signed off work with thyroid disease. I cried with happiness just knowing that I didn’t have to live like that every day, and there was a reason. I have been on a drug to treat thyroid hormone deficiency ever since and although I’m still cold, prone to putting on weight, and battle fatigue and bowel problems, it feels manageable because I know why. Claudine, 46, Bournemouth
‘I was told my symptoms were “just part” of being a woman’
When I came off the pill a decade ago, I noticed my premenstrual symptoms getting worse with each cycle. It started with slight mood changes and weepiness, but ramped up to extreme mood swings, terrible lows, dizziness, cravings and brain fog, all of which would last for days until my period came. I saw my doctor but he dismissed my symptoms as me being “sensitive”. He said that I was experiencing premenstrual tension, which was part of being a woman – and that I should work on trying to “relax more”. Over the years I’ve seen different GPs and described how utterly terrible I feel each month and how I absolutely dread my period, only to be told the same. One even said that it was “all in my head”. I finally paid to see a private doctor and was diagnosed with premenstrual dysphoric disorder (PMDD), 10 years after first seeking help. I’m trying different meds to find what works for me, but getting a formal diagnosis was a huge relief in itself. For years I had felt completely alone and like it was somehow my fault. But now I know that I have a condition, I have found support in Facebook groups, which has helped to ease my pain both physically and mentally. Kelly, 38, Nottingham
‘It took me years to get diagnosed with B12 deficiency’
When I started my first job after uni I found I had serious brain fog and was falling asleep at my desk. It was fatigue like I’d never experienced. I went to the doctor and they checked my B12 levels, which apparently were low but “not low enough”, so put my symptoms down to my new routine. But as the year went by I was struggling to function, leaving me depressed. My friends seemed to be living life with gusto – and I could barely manage to get to work. On bad days my boss would just suggest I’d “need to get an earlier night”, and my graduate friends would sort of agree that working life was tiring, that’s the way life was now. They definitely made comments that dismissed the seriousness of the condition. It was only when I began fainting regularly, about three to four times a fortnight, that I changed GP and they were much more thorough. Turns out I have a problem absorbing B12 and my levels were so low, I had to have a “loading dose” of it (six injections over two weeks) and continue to have a shot every three months. Being diagnosed and getting the injections changed my life overnight and I can’t imagine where I’d be if it hadn’t been picked up. I can feel when it’s starting to wear off – I get depressed and tingly and my body feels heavy and tired – but as soon as I’ve had it, I’m fine. I’ve also learned that it’s genetic so when my older sisters started to get similar symptoms, they pushed for tests and found they have it too. Alice, 31, London
‘Doctors said my PCOS symptoms were down to my heritage’
I started going to my GP in my teens with painful, irregular, heavy periods (cycles lasted about 50 days) and excessive body hair on my nipples, stomach and cheeks. They told me that it was just my body “settling in” – but by my late teens I knew it wasn’t. I kept persisting and they kept telling me that blood tests and examinations showed nothing (I was on the mini pill and later found out that it can mask your ovarian symptoms). My doctor even said that the excess facial hair was just because “you’re Italian”. I even remember my mum worrying that fighting for a diagnosis was making me more paranoid about something that might not be there. In lockdown, my symptoms became so bad that I was having to wax my face twice a week. It was devastating. Eventually I got an appointment on an online GP service and the doctor was brilliant. She referred me to an endocrinologist and when I eventually got diagnosed with polycystic ovary syndrome (PCOS) – after eight years of being told it was “nothing” – I finally felt listened to. I’ve been prescribed strong painkillers, but as some doctors argue that PCOS shouldn’t be painful, I’m now being investigated for endometriosis too. My diagnosis has been a huge relief as I know I can finally access help. Gabriella, 23, Surrey
‘They said it was indigestion but I developed acute pancreatitis’
After I had my second child I started getting intense chest pain. The first time, I thought I was having a heart attack, but the paramedics said my heart was fine and to “keep an eye on it”. I saw my doctor but they put it down to indigestion and told me to avoid fatty foods. However, the attacks happened another three times – each time painful enough for an ambulance. I went back to my GP, was referred for an ultrasound – which showed gallstones – and told that a low-fat diet was the only solution. But I couldn’t even pick up my baby without triggering intense pain and started to have chronic attacks daily. After months of pain and trips to the doctor – who at one point suggested the problem was panic attacks – I had one episode that was so terrible I went to A&E. My skin and eyes had turned yellow and a surgeon explained that because a gallstone was blocking a bile duct I’d developed acute pancreatitis, which meant emergency surgery to have my gallbladder removed. He also said that gallstones can commonly be caused by pregnancy hormones and my GP should have actioned a referral much earlier, saving me months of pain. Cass, 32, Berkshire
‘Years of being told I had IBS and stress turned out to be Crohn’s’
Over the course of 12 years I lost count of the number of times I saw my GP about my crampy stomach and bouts of diarrhoea. They’d come sporadically and caused me a lot of pain and discomfort, as well as being so random and embarrassing that it started to put me off making social plans. At first the doctor said it was likely to be irritable bowel syndrome (IBS), but when I suddenly lost a lot of weight and my periods stopped for two years, I was told that it was more likely to be down to stress or an eating disorder – and that I should try and “relax and eat more”. I did what they suggested but nothing seemed to help. It was only when I moved abroad to China and collapsed with intense stomach cramps, vomiting in front of my work colleagues, that I was rushed to hospital and diagnosed with Crohn’s disease. Suddenly the years of pain, stomach upset and weight loss made sense. Hearing you have an incurable disease isn’t easy, but now I have medication and monitoring and am so grateful to know what I’m dealing with. Jenna, London, 37
‘I was made to feel that my DVT pain was me being silly’
When I broke my leg on a night out at university, I had it set in a plaster cast and was told to go home and wait for it to get better. After a few days, the searing pain each morning was quite something. I called the GP who told me that it was likely to hurt, given the injury, and to just wait it out. Even my mum agreed and told me not to worry so much and to “up the salt” in my diet, as she heard it could help with leg cramps. Two days later I took a cab to the hospital where I’d first been seen to enquire about the level of pain. “Of course it’s going to hurt, you silly girl,” the doctor scolded, refusing to examine me. “You got blind drunk and broke your leg – what did you expect?” My cheeks burned, I was so embarrassed - but two days later the pain was unbearable. I felt sweaty, weird and breathless so my dad drove a five-hour round trip to collect me and take me to my home town’s A&E. They immediately cut the cast off, took an ultrasound and found that I had numerous deep vein thromboses (DVTs) – which, left for much longer, could have been fatal. I’ll never forget being patronised about complaining about my pain – and like I almost deserved it. Samantha, 45, Essex
‘It took more than 20 years for my period pain to be diagnosed as adenomyosis’
For more than 20 years I suffered from excruciating periods, which affected every aspect of my life. During my period I’d be unable to do anything, the pain was so bad I couldn’t even think. There were times when I’d faint, throw up, and I missed countless occasions from weddings to funerals because I was stuck at home in agony. I went to the doctors in my teens and was told the pain was normal. I returned over the years but was made to feel weak and ashamed for being unable to cope with something so common, and that I was being difficult when I refused to go on birth control because of how it had previously affected my mental health. I’d just be sent away with a prescription for strong painkillers that weren’t that effective and made me feel sick, foggy and like they were burning my stomach. I eventually became so unhappy I went private and was sent for a scan, which took seconds to show I had a condition I’d never heard of called adenomyosis, which is the same “family” as endometriosis, when the tissue that lines the womb grows inside the muscular wall. My specialist later told me my pain was comparable to the second stage of labour, which I must admit felt slightly vindicating, as over the years I’d also been dismissed by other women, whether it was friends or bosses, with comments like: “It’s just period pain, we all deal with it.” The only cure is a hysterectomy, but an effective treatment is the Mirena coil, which, after some reluctance, I had fitted during some investigative surgery. So far it’s working and any pain is easily managed – it’s completely changed my life. However, it angers me that although one in 10 women are thought to have adenomyosis, a lack of research means we’re effectively made to choose between fertility or pain. Lauren, 39, London
If you feel as though your pain isn’t being taken seriously, you should ask your GP for a second opinion. It’s the duty of the doctor to “respect the patient’s right to seek a second opinion”, according to the General Medical Council. It may also be worth seeking information online from support groups that relate to your specific symptoms.
If you want to learn more about the Gender Pain Gap and read the full Gender Pain Gap Index Report commissioned by Nurofen visit nurofen.co.uk/see-my-pain
In the UK and Ireland, Samaritans can be contacted on 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service lifeline is 13 11 14. Other international helplines can be found at befrienders.org.
1 GPG Index Survey References Document (26.08.2022 16.00GMT)
Nurofen 200mg Tablet for short-term, mild to moderate pain. Contains Ibuprofen. Always read the label. RKT-M-18833
