Despite being in the 21st century, women are still struggling to be taken seriously by medical practitioners.
We spoke to Tara, who knew something wasn’t right when she was getting intense pain during sex.
“I kept getting this intense pain and burning feeling inside every time, and it would hurt a lot. It was really affecting my relationships with people. Later on, I found out I had pelvic floor dysfunction, which is when your pelvic full muscles are really tight.
“At the same time as this pain, it became hard to go pee because I would keep needing to go. I had these periods where I'd be ill for a while, then I'd be better, then I'd be ill again. One of the biggest symptoms was that I didn't sleep properly because I'd kept waking up to go to the toilet. Sometimes seven, eight times per night, so I went through years without sleeping a full night sleep.
“Uni was becoming impossible, I couldn't stay in lectures because I kept needing to pee and, up until I was 21, I was basically living in the bathroom. It stopped me from seeing my friends. It stopped me from going to gigs.
“I would keep going to the doctors and they'd keep telling me, you have thrush, or you have a UTI, even though my tests came back negative. Between 2-3 years I kept returning, but the intervals just kept getting shorter in between when I'd return. From the years of 18-22, there was never a day where I thought ‘I feel ok today’. Not a single break.
“All my doctors would just shrug me off and tell me, just take this medication and just come back and see me if nothing happens.”
“Constant different things were explored, but no real questions were answered. A lot of try this, try that. They kept making me do loads of STI tests, and even though I knew I didn’t have one I did them anyway, just to be sure. I was also put on antibiotics for pelvic inflammatory disease at one point, and I don't think I had that.
“I had probably taken 2 courses of antibiotics per month for a few years for a UTI, however, not a single test I got back was positive. So, I took all these medications without actually having a single positive test.
“You can understand how messed up my gut is. During this time, I also started to develop IBS because of this. I had a few scares of C.diff, which is a fatal illness caused when all the good bacterial gut dies. There were a few times when they thought I had that, and I was admitted into hospital twice because of this.”
One medical field where women face the most unconscious bias is cardiology, according to research. Women have an approximately 50% higher risk of being misdiagnosed with a heart attack due to the lack of female representation in clinical trials (I). It was found that women suffer different symptoms of a heart attack than men, and women’s survival rates actually increased when being treated by a female doctor (II).
Dr Sonya Babu-Narayan, associate medical director of the British Heart Foundation, shared her thoughts (III).
"Heart attacks have never been more treatable. Yet women are dying needlessly because heart attacks are often seen as a man's disease, and women don't receive the same standard of treatment as men.
“Studies have revealed inequalities at every stage of a woman's medical journey, and although complex to dissect, they suggest unconscious biases are limiting the survival chances of women".
This bias stems back to the lack of female representation in medical research; up until 1990, women were excluded from clinical trials. Medical research is androcentric, and many illnesses may not account for the difference in male/female symptoms due to their limited research database.
As well as this implicit gender bias in medical research, women are more likely to be misdiagnosed due to the shadow of hysteria in the medical field today. Whilst hysteria is no longer a valid diagnosis, symptoms ranged from physical/psychological symptoms like headaches, anxiety, and general pain, and became a one-size fits all diagnosis when nothing else was applicable for a woman’s pain. Often hysteria is associated with women being overemotional, crazy, and dramatic.
Tara shares her own experiences with the notion of hysteria.
“I was dismissed quite a lot because I was seen as hysterical.”
“I wasn’t. I was just educated on the stuff I needed to know because I'd been failed by so many doctors before. when I was having all this pain, the GP did nothing. That meant I had to take on the responsibility myself. They treated me like a hypochondriac, even though I was just trying to figure out what was going on. I think a lot of that comes down to this sexist notion of hysteria and not believing women's pain.”
“Later on, I got referred for a cystoscopy which was one of the most traumatising medical experiences I’ve ever had in my life. I have health anxiety, but I was trying to be positive about it. The doctor told me not to worry, that they were going to numb the area and that it wasn’t the same hole.
“It hurt so much. I don’t know how else to explain it, but it felt like medical rape. I felt so violated and angry that no one had actually told me that I needed to prepare for this. I was told, ‘it's an easy procedure’. No, it isn't. I looked it up online and there were so many women that had been in the same position as me and doctors especially are so willing to dismiss these concerns. they told me it's just a routine procedure. It happens. It's fine. But after the cystoscopy that's when went really downhill. I had way more symptoms than I had before.
“Eventually the cystoscopy results came back and showed me I had inflammation and my bladder walls had thickened. For so long, especially my GP, would just tell me, you are fine. You are all right. You are okay. you're a healthy young woman.
“The GP did not care.”
“But then when I saw the proof of the inflammation, it felt validating. I was so worried that they put me through this horrible procedure, but they wouldn't find anything. as soon as I got those results back that's when they started taking me more seriously.”
Looking through an intersectional lens, black women suffer even more with misdiagnosis and not being taken seriously. Up until 2016, medical textbooks stated that black people have thicker skin and less nerve endings, therefore felt less pain. This false idea is rooted in times of slavery and has sustained its way into modern medical racism (Hoffman et al 2016).
Black women are also 4 times more likely to die from complications in childbirth than their white counterparts (V).
Continuing on with Tara’s story, she tells us about her frustrations with NHS testing methods.
“Because all my UTI and thrush tests kept coming back negative, this led me into researching, are the tests that good?
“I came across Dr. Malone who's a doctor and activist that popularised the notion that UTI tests were originally invented in the 1950s to diagnose kidney infections, which is an upper urinary tract infection, not a lower UTI. The threshold that it has to be to be positive, is it actually higher than it would need to be to diagnose urinary infections. Even the guy that invented this test said this is for kidney infections, not lower UTIs, but despite this the UTI test is still the worldwide medical gold standard test. We’re still using these very outdated testing methods in the NHS that don’t help with diagnosis at all.
“I kept being told I was a healthy young woman, even though I was having so much chronic pain.”
“One thing that I found through this journey was a lot of resources aren't available on the NHS. Tests for women's health are not well adapted for the needs that they should be. They kept doing the same thing even though they knew it didn’t work for me.”
This lack of resource isn’t something that is pertinent to women’s issues but is unfortunately seen in various other departments in the NHS. Tom Parker, former member of The Wanted, was diagnosed with stage 4 Glioblastoma Multiforme (GBM), a type of aggressive brain tumour. He has been using his platform to advocate for better treatments for brain cancer on the NHS (III). Only 2% of investment is allocated to brain cancer, despite it being the biggest cancer killer of children and adults under 40. He featured as a guest on Amani’s podcast, Brainbabble, where both Tom and Amani talked about their experiences with stage 4 GBM.
“It drives me insane the world just revolves around money,” he states on the podcast. “There are drugs out there that can save people’s lives.
“Radiation and chemotherapy treatments haven’t changed for nearly 20 years. There's got to be a better answer out there than just that.
“People shouldn’t have to fundraise for medication. We need better treatments on the NHS.”
Tara also expresses her frustration of the healthcare system.
“There're all these treatments that are new and have good research behind them, yet they're not offered.
“I had to go private. There's a UTI vaccine that they don't offer on the NHS, but you can pay for 200 and get it from a private doctor. “
She shows me a book with detailed records of her medical journey, complete with appointments, doctors' names and departments she was referred to.
“I had to organise this all myself,” she stated, pointing to her book.
“At my worst I was being seen by 7 different consultant doctors.”
“I was eventually referred through the NHS for PTSD, and at this point I was extremely depressed and had severe health anxiety. I was my own researcher, which fed into my health anxiety. I was having to learn about all of this and I felt like no-one was looking out for me, so I took that responsibility on myself.”
“I started seeing the doctor privately for PTSD, and I was meant to be there for 12 sessions, however I’ve been going there for three years, and I still see him now. It ended up being one of the best things for me.”
“When my results of inflammation came back, they diagnosed me with MCAS (Mass cell activation syndrome) which is when you lack the histamine enzyme in your blood. This can cause bladder issues, vulvo vaginal pain and a tight pelvic floor. Because there’s histamine in most foods, I had to follow a strict diet cutting out a lot of foods.
“That was the only thing that worked for me and it took years to get there after years of just being told here ‘here’s antibiotics’. I still have bad and good days, however, I can handle it a lot better now. The diet started working, the physio was working, the psychosexual therapy was working, the psychologist was helping.
“The sexual dysfunction calmed down because my pelvic floor was just more relaxed now because I wasn't clenching from the pain all the time.
“From all of this, I realized that everything was linked.”
“When the UTI like symptoms start going away, so did the vaginal pain and the tightness of my muscles. I never really got an actual diagnosis. I had all these working diagnoses, but never found out what was wrong. But even though there’s no closure to the story, it was quite affirming to hear that I wasn’t imagining my pain, because that’s what it felt like for so long.”
The healthcare system has systemically failed, and we all have been personally affected by this, whether it’s ourselves or a loved one.
Tara shares her own advice for women who could be in a similar position that she was in.
“I feel like you have to come across as stone cold to be taken seriously, even though these problems have caused you emotional distress It's really important to keep a cool head when talking to the doctor. they will interpret that as a sign of weakness. I wish we lived in a society where you didn't have to do that, but I've found that I would get taken more seriously when I wasn’t getting emotional about it.
“Send your doctors good quality research, some peer review journal articles and showing them, this is what it is. Do your research, but don't make it your whole life, because it can easily become your whole life when no one else is working on it except you.
“If you can, have a friend or family member that can go to your appointments with you, especially a man, as it will be taken more seriously.
“If they keep dismissing you, just keep going back. Just keep following it up because nothing's going to change unless someone actually takes you seriously. I kept going back which is why they actually referred me on; that was when I really start to get better. My life really improved once I'd gone with the right doctors.
“Believe yourself, stick to your convictions, do your research and be kind to yourself.”
