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female pain

By Kate Brayden

I don't trust doctors with my body.

First of all, they're not Gods, they're human. As a young woman, and especially for people of colour and for those with disabilities, trusting someone with your body can be a dangerous mistake. 

Second of all; I have been misdiagnosed numerous times during my three years of chronic pain, yet I managed to get diagnosed with endometriosis in three years when the average amount of time is remarkably longer. In fact, it takes the regular person with a uterus nine years in Ireland to get handed their scratch card with the unlucky result on it.

My father is a pharmacologist, and when I asked him why the funding for research regarding this particular illness is so low, he said that it was presumably because of it's rarity. I then pointed out that it affects one in 10 people with uteruses (to include the transgender community), and he was undeniably disturbed. It's one of the main links to female infertility, yet the progress and pain which women have to go through to be believed and treated is still preposterously lengthy. 

Endometriosis is an illness affecting people with uteruses, where tissue which lines the uterus (the endometrium) grows outside your womb. It commonly involves your ovaries, fallopian tubes and tissue lining your pelvis, but can appear in the bowel and bladder also. Displaced endometrial tissue continues to act as if everything was regular- it thickens, breaks down and bleeds every time you get your period. It becomes trapped, without any way to exit the body. The symptoms include heavy bleeding during menstruation, lower back pain, pain during sex, infertility, pain during urination or with bowel movements, nausea, bloating and dysmenorrhea (painful periods.) It's zero craic, I'll tell you that for free.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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It's often misdiagnosed as IBS, ovarian cysts, Pelvic Inflammatory Disorder (PIV) or even just female hysteria, due to the 'gender pain gap'. Back in the day, people genuinely created an illness surrounding female mental health, with symptoms attributing to; delusions, nervousness, hallucinations, emotional outbursts and various urges of the sexual variety. A bit like witch-hunting, where 'deviant' women (basically all the single ladies and spinsters) were presumed to be the devil's workers purely out of misogyny. The word 'womb' actually translates to 'hysteria', insinuating that anyone cursed with this life-bearing organ is marked with it's limitations and presumptions about the woman's mind and body.

Caroline Criado Perez' vast and valuable work, Invisible Women: Data Bias in a World Designed for Men, argues that the gender pain gap is part and pace of something bigger; “gender data gap.” The data which society has collected is typically about men's experiences, and most often straight, white men. The data is used to allocate research funding and design decisions all around us from public transport to housing, healthcare to infrastructure. The 'default', is always male, she says.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Pain medication has been designed by men with men in mind as the default user, therefore the side effects are rarely tested on women. This is only one small example of the repercussions in female healthcare of the gender data gap. We are twice as likely to die of heart related diseases, and far less likely to be given pain relief or treated immediately in the Emergency Department.

After suffering for two years of chronic pain, I know when to spot a doctor who sees my symptoms as 'psychosomatic'. That's in inverted commas because ALL pain is real, even for those whose emotion is controlling their physical torment. After exhausting all my resources in the Irish healthcare system as well as the UK, I decided it was time to remove all my savings from the bank and book a plane ticket to Washington DC. When you have intense chronic pain every single day and doctors have no idea how to help you, spontaneous and stubborn choices are easy. I learned to go with my gut, and to stand up for myself in clinics. Many female chronic pain sufferers maintain that they receive noticeably better treatment and empathy if her boyfriend or husband is in the room with them. I can also vouch for this. When my boyfriend accompanied me to doctor appointments, the practitioner would often turn to him for answers to questions which were directed at me, or about me. 'Health-care gaslighting' is oh so real, and I have lost count of how many times I was told to 'take a Panadol' when I went to A&E.

One of my first consultant experiences where I was having extreme abdominal cramping, nausea and burning sensations in my pelvis, back and legs was in a major maternity hospital in Dublin. It was intimidating for a 21-year-old woman who was neither pregnant nor accompanied by anyone. The consultant who I waited four months in crippling pain to meet was a prominent doctor whose name was tied to the CervicalCheck scandal. Basically, I waited to see a doctor who was destined to shrug me off. 

It went downhill from there. Over the course of two and a half years, I had nerve blocker injections, was put on Lyrica and Amitriptylene (two nerve pain medications with enormously harsh side effects and little worth), had intense physiotherapy, diet transformation, two inconclusive biopsies, smear tests, hormone treatments, and every blood, allergy and auto-immune test under the sun. I was refused a CT scan and an MRI, and decided it was time to get a laparoscopy. This is the only way for a woman to find out if she has endometriosis, and despite the fact that I fit all the symptoms, it was never offered to me. Just coming up to my second year of consistent pain, I was sent to a consultant gynaecologist in the Mater Private to stop my menstrual cycle. My nerve pain was cyclical and I desperately wanted to stop this aspect of my pain. I requested a laparoscopy from a relatively young, male doctor, and was refused. I explained that aspects of my pain fitted the symptoms, but nevertheless he denied it. After calling a family member into the room for back-up, he eventually agreed and I was scheduled in for the keyhole surgery. 

I was brought in some time later for my results, instead of being called over the phone or sent an email. He spoke to me for under two minutes, said there was no evidence for my pain and my GP ceased my pain medication. He said there was no endometriosis in the scans, and that he had no other ideas to offer me for my mysterious chronic illness. In under two minutes and for €200, his words translated to; 'I don't believe you. You're being dramatic.' I stormed out of his office and slammed the door on the Irish healthcare system.

Six months later I was on a plane to see one of the top doctors in the US, and knew I wouldn't regret a thing. I met the doctor in a serene clinic in Washington DC, and he greeted me with a hug. Already I had more confidence, even though I was paying a huge price for it.

Two hours with the doctor included an examination, a comprehensive survey of my entire medical history since birth (mental, physical and sexual) and a consultation. As it turns out, I also walked away with a surgery plan and diagnosis. After three years, I got my hope back in two hours. I'd have paid millions if I had it, and it was worth every cent. I booked the surgery for a few months later, and organised time off work. Then I booked my flights to New York, packed my bags and brought two family members who would take care of me for the four week recovery. Three of those weeks were spent holed up, unable to move, in a New Jersey Airbnb. After the surgery, my doctor (who has a stellar reputation and has carried out over 800 of these surgeries) said that endometriosis was mysteriously found during the procedure. He exclaimed that it was the first time he'd ever seen it in one of his patients, and that it was in an extremely rare place which no other doctor of his type would have been able to remove except him. He's full of confidence in himself, but he's right to be this way. He gives women their lives back and sees them go on to live without pain and to be able to have children and happy, healthy relationships. 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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I pushed aside my surprise about this setback, and focused on my nerve removal surgery recovery. Six gruelling weeks later, I had watched enough Netflix to power a large, densely populated city and was ready to fly back to New York for my check-up. I brought the laparoscopy from the Mater Private one year previously along with me for my surgeon to inspect. He had sent off the tissue to the pathology department, who were baffled by this and said they disagreed with his diagnosis. They had no suggestion for what it could be, despite the fact that the tissue looks exactly like endometriosis lesions. For those who aren't aware, endometriosis lesions look like black gunpowder rings. (Kind of like something from Stranger Things.)

My surgeon and a gynaecologist both examined my Irish scans and immediately pointed out the disease in the images, thus diagnosing me with the illness. It's safe to say I am not impressed with the Mater, but I also feel let down by nearly every doctor who saw me. I went to a GP with this pain over 15 times (5 separate GPs, I might add), visited three Irish hospitals on numerous occasions, flew to the UK multiple times to see professors in the chronic pain field and was misdiagnosed. I am now on a progesterone pill, which will hopefully suppress my symptoms, and am investigating whether the endometriosis is in my bladder. Yet how can I trust what results I am given in the Irish healthcare system, after this? 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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There is so much left to be done, when it comes to this illness. In terms of funding, it is increasingly shown that male pleasure trumps female pain; research of erectile dysfunction receives more funding than every female pain disorder combined, despite the fact that one-in-three women will experience this at some stage.

A blood test is currently in the works to discover endometriosis without having to undergo a flawed keyhole surgery. Amazingly, a new pill is being trialled which could potentially cure the lesions themselves, according to scientists at Washington School of Medicine.  It's only early days; the drug has been tested on mice, but it's hoped the human trials will present similar findings. The antibiotics could potentially cure or reverse the effects of endometriosis, essentially ending the pain of millions of women. While I wish this pill could have been available three years ago, I will still stand up for myself to demand access to this treatment, I will still research the side effects and long term tested effects doggedly, and I will still never stop questioning every detail a doctor tells me. It could change your life, even if they call you hysterical.

Feature image credit: Flickr/@P_I_O_T_R

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Gender bias in the medical industry is becoming increasingly more prominent as a direct result of women sharing their stories and opening up about their experiences with pain and illness.

Just last year, a study carried out by the Heart Association and the National Institutes of Health found that women are less likely to be given CPR. Men were more likely to survive cardiac arrest in a public place by a massive 23%.

This year alone, the CervicalCheck scandal has rightfully caused outrage in Ireland, when it was reported that hundreds of smears were in fact out-of-date, which resulted in the wrongful diagnosis of numerous women who could have survived if they had been given the accurate results in time. Only mere weeks ago, cervical cancer sufferer and campaigner Emma Mhic Mathúna died aged 37, a mother of five.

In tragic and life-altering instances such as these, women deserve compassion and respect in their healthcare journeys, it has since been reported that doctors were told to "use their own judgement" regarding whether or not to tell patients about their misdiagnosis.

The right to information surrounding your own body should be the lowest bar set, it cannot simply be a privilege for the few. Bodily autonomy has never been an equal playing field for men and women.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Vicky Phelan sued the US laboratory who wrongfully interpreted the results and was awarded €2.5 million in compensation by the High Court, after finding out in September 2017 that her 2011 smear test was a false negative.

In 2016, researchers at University College London found that women with dementia receive worse medical treatment than their male counterparts with the same condition. I could go on.

Statistics and cases such as these may seem like aberrations in the system, yet so many women claim to experience sexism in their GP clinics, local hospitals and consultants offices every day.

Gender, race and poverty are undeniable biases in healthcare- none of these should ever be ignored.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Sexism has been a major factor in medicine since time began, from Aristotle’s declaration that the female form is naturally inferior, to the connection of the uterus with apparent female “hysteria” in the middle ages, trying to get a doctor to empathise with female pain can be draining and hugely frustrating.

This is not helped by the fact that the majority of consultants and specialists are male, and are rarely trained to spot female symptoms or female illnesses in the same detail as those of the male body.

It may seem absurd in this day and age that the Victorians confined women to asylums, whether they showed any evidence of mental illness or not, but doubt still leaks into clinics and hospitals when it comes to female pain.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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The fact that women have to go through the most difficult time to get a diagnosis of female illnesses such as fibromyalgia and endometriosis speaks volumes into the lack of funding which goes into researching these diseases, which affect thousands of women nationwide.

Fibromyalgia is still suspended in the disbelief of numerous practitioners, despite women pertaining symptoms for years at a time without gaining any appropriate treatment.

Lady Gaga has recently spoken out as a sufferer of this condition, asking for better healthcare to treat this complex disease which causes total body pain.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

A post shared by Abby Norman (@abbymnorman) on

Women are portrayed as hysterical hypochondriacs, and men are constantly depicted as the silent stoic types, who refuse to show weakness in the form attending a prostate exam that could save their life.

The Girl Who Cried Pain represents a 2001 study by Anita Tarzian and Diane Hoffman which examined pain management and gender. It showed clearly that women were far less likely to be given pain relief or long-term medication for pain (drugs such as Gabapentin, Lyrica and Amitriptylene), and it also revealed that women are less likely to gain the adequate treatment by healthcare providers.

Ask Me About My Uterus by Abby Norman is another fascinating read which describes her torturous experience of trying to get a diagnosis for her endometriosis, a dangerous illness where uterine tissue grows on organs outside of the womb. Often the only treatment is sedatives, or a hysterectomy. Endometriosis UK has claimed that despite the illness affecting 1 in 10 women, it takes an average of nine years to get a diagnosis.

I had to beg my own consultant for a laparoscopy exam after two relentless years of chronic abdominal pain, and he stopped my GP from prescribing me my vital pain medication after claiming that there was “no reason” for my pain. AKA, he didn’t believe me.

I have since been diagnosed in the US after three years with a congenital pain condition where I was born with a vast excess of nerve endings at the base of my spine, which affects over 13% of women, and yet not a single doctor in Ireland or Britain could offer any treatment or advice.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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When I went to America, the specialist who has thousands of female patients who travel across America to see him told me that he is refused funding daily for his clinical trials and research into female pain, for the reason that all the funding is instead siphoned into drugs aimed at male pleasure, despite there already being several high-quality treatments.

According to PubMed, there are currently over 2,000 trials focusing on erectile dysfunction, and a grand total of 300 on EVERY TYPE of female pain.

If you don’t believe that stigma and sexism is prevalent in healthcare, maybe question why it’s so easy for a man to walk out of a GP clinic with a prescription for Viagra, yet it takes a woman in excruciating pain nine years to get told she has endometriosis, a life-long illness.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Since 1995, it has been confirmed that women experience stimuli at a more intense level than men.

Women have a proven different experience of pain than men, surely they deserve to be taken as seriously?

Yet society has conditioned women to ignore their pain, to handle it with clenched teeth and no complaints.

If you’re going to focus entirely on male pleasure, don’t ignore female pain, because it won’t be kept silent.

By Kate Brayden

Feature image: Instagram/@kdkatcricket

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