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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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If you are unfamiliar with the term 'reproductive coercion', it's essentially when another person has more control over your reproductive health than yourself.

Hilary Freeman of The Guardian is now reporting that more women than imagined have no idea that reproductive coercion is a form of abuse.

Studies have revealed that a shocking one-in-four women who attend sexual health clinics report coercion over their reproductive lives, including 'contraceptive sabotage', such as covert condom removal.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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According to BMJ Sexual & Reproductive Health, available evidence about the abusive behaviour needs to be updated to 2017 and widen the spectrum of activities involved to include familial pressure, criminal activity and exploitation within sex trafficking.

As well as not being able to choose contraceptives to use or take control of their own reproductive health, reproductive control takes the form of contraceptive sabotage, such as convert condom removal or needling a hole in a condom. 

Not being able to decide whether to start or continue a pregnancy is a major factor, research shows, and the concept of reproductive control (especially over women's autonomy) by others was first described in 2010.

Women's experience of interference with their autonomy goes back centuries, arguably, but research indicates that younger women are particularly vulnerable, as well as those in the black community and racial minorities.

The practice is scarily common, with women having decisions taken away from them by partners, exploiters or family, invalidating consent.

One-in-four women attending sexual healthcare clinics are reporting persuasive methods, emotional blackmail, threatened or actual infidelity and physical violence predominantly perpetrated by male partners but also criminal gangs.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Other examples of contraceptive sabotage include; partners lying about having a vasectomy or sterilisation, refusing to wear condoms, forceful removal of condoms, not using the withdrawal method properly, piercing barrier contraceptives or throwing away contraceptive pills.

Condom removal during sex is referred to as 'stealthing', and is now classified as sexual assault. Spiking drinks or food to induce abortion also was mentioned as occurrences.

The consequences are often emotionally difficult to bear; unintended or unwanted pregnancy, higher abortion risk, higher STI rates and emergency contraceptive usage.

Women in violent, abusive relationships prove especially vulnerable to reproductive coercion, but many are unaware that they are being subjected to reproductive control.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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"The degree of control that a male partner can have will vary from mild to extreme. Milder amounts of control may not be perceived by the victim as unhealthy or abusive."

"Women in a long term relationship may become inured to significant levels of reproductive control," the study's authors write.

The study calls on healthcare professionals must play a crucial part in noticing and preventing this horrifically controlling behaviour.

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St John of God Research Study Day are currently presenting findings from their studies, which show a rapid increase of people presenting with gender dysphoria.

Today is the 28th Annual St John of God Research Study day, and features researchers and academics from the medical field displaying the results of their analysis.

Consultant Endocrinologist at St. Columcille's Hospital Loughlinstown, Professor Donal O'Shea, has stated from his own exploration in the field that 210 people presented with the condition last year, increasing from 10 in 2007.

This represents a 2100% increase over the entire decade. Dr. Paul Moran, Consultant Psychiatrist at St John of God Community Services, has joined Professor O’Shea to discuss the imperative needs of transgender people.

This vital talk comes just ahead of the launch of the National Gender Service, which hopes to make a difference in the difficulties which numerous members of the transgender community face daily.

According to Professor O’Shea:

“We see the most positive outcomes for patients experiencing gender dysphoria when a holistic and better paced transition journey is taken, with family support. I have observed patients who transitioned hastily, ultimately regretting the decision after irreversible treatment has taken place."

"The new national gender service has been established to address the rising prevalence of gender dysphoria and to ensure that those individuals who require this service receive the best possible holistic care."

St John of God Research Foundation Study are aiming to further examine the theme of 'an evidence based path to service provision; as well as interim results on the gap in mental health care for teenagers and young adults.

Another disturbing fact raised today stated that 50% of the general population who are experiencing mental illness are not being referred for child and adolescent mental health services after the age of 18.

The adult mental health services could intervene at this crucial time in the lives of those experiencing mental illness such as suicidal ideation, eating disorders, depression and ADHD.

The St John of God Research Foundation is presently being funded by the European Commission, and the landmark MILESTONE study is being conducted across 8 European counties, Ireland included.

Professor Fiona McNicholas, Consultant Child and Adolescent Psychiatrist at St John of God Hospitaller Services and Our Lady's Hospital for Sick Children, Crumlin is leading the Irish research on the MILESTONE study. She stated that:

“Mental health disorders are established early in childhood and for many persist into adulthood. The interim results of the MILESTONE study highlight that by not transitioning adolescents with established mental illness to an appropriate mental health service, we are leaving vulnerable teenagers without the support and medical care required."

"Without treatment, progress and recovery is hampered. Many will present only at times of crisis to emergency services, such as following suicide attempts or self-harm."

"They are prevented from receiving appropriate treatment that would help them live healthier lives, instead the huge percentage of young people not transitioning are more likely to be marginalised and experience homelessness, drug abuse and unemployment.”

Ireland's failure to effectively transition it's youth is not unusual for Europe. Broad European findings of the MILESTONE study which are being presented by Dr Helena Toumainen, from the University of Warwick supports this argument. 

Vanessa Lacey from the Transgender Equality Network Ireland (TENI) will be speaking today regarding loss from a transgender family's perspective.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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For more information. please visit the St. John of God website.

Other support services include the national LGBT helpline, BeLonGTo, and advice for parents and a guide for terminology.

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