I was put in “special” classes and treated as if I didn’t know anything for 2 years of my schooling because I could not read aloud or spell even though all of my other grades were good. My mother wasn’t informed and I didn’t know how to speak up. I was embarrassed daily by being pulled out of class to go to these classes with children who needed a lot more help than I did because I failed one analysis of my reading and writing skills. It wasn’t until a teacher noticed that I shouldn’t be there that I got pulled out and put in advanced class.
Alektra
USA
There is a learning disorder called Dyscalculia. Dyscalculia is much like Dyslexia except it affects your ability to understand maths. Just like Dyslexia, Dyscalculia is more common in males. Most of the “common symptoms” are based off common symptoms for boys. Meaning that many women, just like me, go through their whole school career undiagnosed. It took me several years to recognize that I simply didn’t see numbers the same way my classmates did. Hopefully we can work towards a more inclusive awareness for learning disorders in schools.
Anonymous
I started to get back pain 7 months ago. I went to see a doctor and she told me to do sports. After several months, it didn’t stop so we decided to do an MRT, but there was nothing to see. I got very strong medicine, which made me very high to the point that I wasn’t even myself. After multiple doctor appointments, I was brought into hospital because I couldn’t walk and that’s where they found out that I had Bertolotti syndrome. I was finally diagnosed but I’m still at a point where nobody understands that I wanted to die.
Sarah
Germany
One of the first signs that I was dyslexic was that I did not learn how to speak until I was one year old. When my parents went to a doctor they were told I was just slow and not to worry so when I went to school and was told that I was struggling they said the same thing. During Year 6, Covid-19 happened and the bubble I was put in with this TA she helped me before but then she told me I had to be more independent so I stoped asking questions and then when I went to secondary I was the same I just chose to struggle. Now I’m in year 10 doing my GCSEs and struggling.
Christabelle
United Kingdom
I went through my entire school year being undiagnosed with dyslexia to the point that I was a good four years behind everyone else my age because I wasn't getting the help and support I needed. When I did eventually get diagnosed with dyslexia they wouldn't support me because I "didn't have it that bad" so now in college I still can't get the support I need because I don't "technically" have it.
Anonymous
"First, I experienced a burnout at 16 years old, and it took years before anyone took me seriously. I reached a point where I had to beg to go to a mental hospital.
Second, I've suffered from excruciating period cramps since the beginning, to the extent that I would pass out or vomit due to the pain. I'm now on birth control just to avoid having periods altogether.
Third, I have very low blood pressure, which causes me to pass out regularly.
Fourth, I struggle with severe back pain that often leaves me unable to move. All I hear is; "that's normal for women your age". I'm 18. All I want is to be heard.
Mirjam
Switzerland
I started antibiotics in 2020 after getting my wisdom teeth removed. I got super sick shortly after starting the antibiotics, food would go straight through me and I was having a lot of regular stomach pains. I went to the doctor and was told it was IBS and anxiety. Fast forward 3 years, I was still having the same symptoms plus more including drowsiness, low appetite, inability to gain weight, dizziness, excessive night sweats etc. I did multiple stool samples throughout the years and finally got diagnosed with C. Diff. I had C. Diff for 3 years.
Macy
Canada
For most of my life I’ve struggled with being very underweight. For the simple fact that I didn’t have an appetite, the smell and thought of food made me sick. I didn’t want to not eat, I just physically couldn’t. After going to my doctor she had told me I had an eating disorder, I went to several nutritionist’s as well as ED counsellors. Nothing seemed to help. After 6 years of being monitored by doctors, the constant comments I had gotten referred to a specialist who found the cause. A Pituitary Adenoma, I had brain surgery 2 months later.
Alexandra
USA
After two years of my mom being cancer free, I found a lump on my right breast. I immediately called my gynaecologist and she sent me to a special clinic right away to get further tests.
The first doctor said “It's probably just a cyst”and that I should come back in a month. So I came in a month later to see a different doctor. She told me that I was “paranoid”and that I wasted her time - that I was “way too young” to have breast cancer. Half a year later, 2 weeks before my 26th birthday, I got my breast cancer diagnosis, it had already spread.
Monica
Switzerland
I went through all of my school years going undiagnosed with dyslexia. I always thought I was the slow one of the group, and thought I’d grow into it. I was finally diagnosed with dyslexia when I was 19. June 26th 2023, my life changed and I finally realised that all of the struggle, frustration, anxiety, mental blocks, were because of my dyslexia. I find it hard now, but I’m learning. I can say that I would never wish dyslexia on anyone, because of everything it does to me mentally. But if you think you do have it - please reach out.
Keira
United Kingdom
I started having absent, partial, and tonic-clonic seizures at the age of 19. Despite my family history of epilepsy, doctors dismissed my seizures as mental health issues and hormones. After a seizure, every time I went to the ER, I felt as if I had to prove I deserved treatment. No one would listen to me until I managed to squeeze into the conversation my academic studies, work, and other accomplishments. Almost a year later, in 2023, I saw a female doctor who diagnosed me with epilepsy and started me on medication - which has saved my life.
Anon
Canada
I’ve always suffered from mental issues growing up. My teachers always said I was off with the fairies. It wasn’t until I was in year 8 and I got diagnosed with dyslexia because one of her teachers pointed it out with her. It wasn’t until I was in year 10 that I got diagnosed with anxiety. Year 11 and year 12 I was diagnosed with depression and bpd. I’ve always known something isn’t right and I still know I’m not but every doctor or therapist I go to, dismisses it because of my age. I’m 18 and still suffering everyday. I feel so unheard.
Anonymous
I was sexually abused at 15 years old…and now 5 years later I’m still struggling with my mental health.
Anonymous
I went through school having panic attacks and breakdowns in the bathroom. Some would leave me breathless. Others I would nearly pass out from. I was told I was being dramatic and that I was faking for attention. I went to see a doctor who told me that it was just stress and that it’ll pass over time. Things got worse and I went to 3 different doctors in the course of a year. The last one finally tested me for anxiety and I was diagnosed and put on meds. Sad it took so long but happy I’m finally able to breathe.
Anonymous
I was always “quirky” and “awkward” . I was told for years I had “a touch of the anxieties”. As I got older I was able to unmask and be myself, and that's when I got referred for an autism diagnosis. I was diagnosed at 17, and it changed everything. I can be myself, express my needs, have support and show that I am human. I always wonder how different my life would've been if I had the diagnosis at a younger age.
Lucy
United Kingdom
I am a 24 year old with an 8 month old baby girl. In middle school, I had some serious pain in my right knee. (It was just an underdeveloped bone). 12 years later, I got it checked again. Turns out, there is a mild lateral tilt of my knee cap. My kneecap is basically rotating sideways. Unfortunately, there still isn’t anything they can do until I’m older for a knee replacement.
Anonymous
During my first year of Uni I experienced awful back pain on my left side. I told my mum about it and she took me to the GP (I had to wait 2 days for an appointment).
During this time I couldn’t keep anything down, not even water. I was so confused and in so much pain.
The GP told me to pee in a cup. Keep in mind I had no UTI-like symptoms. He diagnosed me with a UTI and gave me antibiotics. The lab results took 4 excruciating days to come back and were negative for a UTI. Obvi.
2 days in A&E and finally diagnosed with a huge kidney stone.
Lisa
United Kingdom
When I was younger I was fortunate enough that I was diagnosed with dyslexia but unfortunately they treated me like I was stupid. When I was around the age of 7 when I was diagnosed and everything changed. They made school harder for me for no reason. They didn't know what to do about me and treated me like I was dumb. Even though I got my (mba) diploma in 2 years instead of 3. You would think that 2023 would be different but no - my university still can't get things right. It's sad to see that even now people don't know what to do with dyslexia.
Anonymous
I'm almost 14 and haven't been able to get a dyslexia diagnosis, even though my dad is dyslexic. I've struggled with spelling and have a reading age of 7. My mum decided that she had to get me a diagnosis, but the school thought it didn't matter, even though there were obvious signs. I was placed in the second-best maths class and the third-best science class, which led them to believe I was “too smart to be dyslexic”. So now my mum is spending £500 that she doesn't have to get me diagnosed, all because my school saw that I was a girl and considered me reasonably smart.
Elsie
United Kingdom
One day, I struggled to breathe and thought it was stress due to my mental health history. Over a week, it got worse, so I contacted the hospital. With my medical background, I went straight to a (male) doctor who dismissed my symptoms as hyperventilation and panic attacks, leaving me humiliated. Luckily, a female doctor on duty suspected a pulmonary embolism and confirmed blood clots in both my lungs, saving my life. As a woman, you have to constantly advocate for yourself. It’s tiring.
Anonymous
My whole school career I was told I was dumb. I skipped one year so I was younger than everyone. It was hard for a little girl to hear that you were going to fail. Even less when the teachers told you the same thing every year. Luckily I had my parents to help me. When I was in 9th grade I was diagnosed with a heavy form of dyslexia and dyscalculia. But the scars never disappeared. Now I am in 11th grade in one of the most difficult high schools in my country. So let this be a reminder don’t let anyone tell you what you can or cannot be or do.
Sas
Belgium
I'm still young, only 15 years old. I started experiencing concentration problems when I was 12, but it wasn't until I was 14 that I finally got to undergo some tests. The results showed that I exhibited all the symptoms of ADD. I also displayed many symptoms of autism, but not enough to be diagnosed with autism. They couldn't diagnose it earlier because they couldn't observe it when I was younger. So here I am, in my last year before I get my diploma, struggling with concentration, learning, my emotions, and my ability to handle too much noise or many people around me.
Amy
Netherlands
I was always told to sit still and stop being distracted by everything.
My parents suspected that I might have ADHD and took me to a doctor when I was seven. But they were only smiled at and told that children are like that.
So I forced myself through school without help and developed anxiety disorders and depression associated with ADHD. When I went to the doctor again at the age of 22, they said - it's obvious that you have ADHD. Why didn't you come earlier? Because I was not taken seriously and boys who were my age were diagnosed earlier.
Nathalie
Germany
Hey my name is Chloe I’m 18 years old and I have dyspraxia and dyslexia as a combined disability, I was diagnosed at the age of 3 with this disability but that still doesn’t mean I didn’t struggle. I never received help in school or in lockdown to help me learn it was left to me to figure it out on my own or for my mum to help me, and because of that I have learnt the hard way how my brain works and now I’m in dance psychology hoping to help people like me who struggle through dance and I’m learning or every day life x.
Chloe
I was diagnosed with dyslexia at the age of 11. And for most of primary school, I thought I was just stupid as none of my teachers got that there could be something different about my ways of learning. This meant that I wasn’t able to excel the way both me and my family knew I could, and it also left me to feel unnoticed and isolated from others my age. This was merely because girls tend to be better at hiding dyslexia and people are only taught to look for symptoms boys would tend to show
Anonymous
“During my journey to have kids, I had the same challenge: I had multiple miscarriages and it's always the same message - this cannot be prevented, it's always high statistics on women having miscarriages and it should be considered normal, there is not enough research to know causes for certain and etc etc. Luckily I managed to have my daughter, but this setting and baseline we currently have is that most women will go through this experience and it's considered normal. It should change.”
Anonymous
“I was diagnosed with a PID and endometriosis in the year 2019. This was my worst experience this year because the doctor told me that I stand a risk of not giving birth to children. Had I known earlier, I would have treated the symptoms earlier but due to lack of awareness and education, limited access to specialised healthcare professionals, stigma and taboos, and financial constraints, most Ugandan women and the world at large are going through the same challenges to have such diseases diagnosed. We need to address such issues for the better.”
Anonymous
“I suffered terribly with low iron for years and went to countless doctors before figuring it out myself. I had clear symptoms of iron deficiency but because my haemoglobin was ‘normal for a woman’ the doctors had no interest. I began getting my blood tested regularly and graphed the results myself to see how it corresponded with how I felt. My Ferritin was very low and this was causing my haemoglobin to dip and also neutropenia. I finally was diagnosed with uterine fibroids and put on the pill however after a year on the pill I got breast cancer.”
Anonymous
“When suggesting options for post-cancer reconstruction, the surgeon was very concerned about aesthetics and I just wanted to have function. He suggested using my lat muscle on one side to build a mound for a new breast. He said I would still be able to lift a bag of groceries. I now lift weights for my health and shake my head at the thought of destroying my back muscles so I could have a bigger looking breast. Would a female surgeon have suggested something so preposterous?”
Anonymous
“It's a hard road for a woman with a genetic mutation that carries haemophilia A, severe. My factor levels are high but I still have bleeding symptoms and I have hypermobility as well which exacerbates bleeding. I have both diagnoses but no access to treatment for either. It is painful and traumatising to attend medical visits and be turned away from treatment options time and time again. I am not getting any younger, I hope to access treatment by age 60.”
Ashley
USA
“My asthma suddenly became very bad at the age of 35. I explained to my doctor that I was extremely fit but was recently feeling short of breath for five days after working out. He told me that was normal and that I was ‘not 18 anymore’. He said I was still ‘young and beautiful’ but because of my age it would take longer to recover. It was total nonsense and extremely patronising but I had to bite my tongue as he is in a position of power, in that, he is the person that confirms the diagnosis and controls access to the medications I need.”
Anonymous
“I’ve always had irregular and very painful periods, but because I am an athlete I was written off due to the amount of physical activity I do each day. I was finally diagnosed this past year with PCOS at age 23 and prescribed another IUD, in addition to oral contraceptives. The birth control created new symptoms including severe depression and mood swings. My concerns were written off- the pills reduced the cysts but made my quality of life unbearable. I quit the pills, my gyno’s focus is still on fertility instead of my wellbeing.”
Ali
Germany
“My whole life, my period was extremely painful. I fainted, people called the ambulance. I tried not to take pain killers ‘because I was not sick, it was nature’. Also my bleeding was quite strong, it led to anaemia and I was physically and mentally very weak. Only after years of slowly getting worse, it was found out and taking iron supplements brought me back to life. After 30 years, I was so happy when it all stopped with menopause!!
Unfortunately my daughters suffer exactly the same with their period - I don't know what advice to give them.”
Anonymous
Austria
“When I was 15 my mom spent months in pain, and because it was ingrained in her that women should endure the discomfort and because she lacked help to leave her children at home and take care of her health, she was reluctant to go to the doctor. When she did, multiple doctors dismissed her symptoms as a migraine and sinus infections. It wasn't until 2 full months later, when she was in agonising pain and could not handle it anymore, that she was diagnosed with a form of rare cancer that is even rarer in women. She passed away 2 years later.”
Maria
Switzerland
“My father had died when I was 13 by suicide. I was told he had schizophrenia because he reported ‘bleeding to death’ to his dentist. I spent years worried about my genetics being predisposed to inheritance of schizophrenia. With my son’s delayed diagnosis of haemophilia B and von Willebrand Disease at almost 3 years old, I had an answer to my father’s medical condition, then answers to my own medical issues, including chronic anaemia, and finally I received a dual diagnosis the same as my son. That diagnosis changed my life!”
Kendall
USA
“19 years ago I was diagnosed with HIV. At the time I was a single mother of 2 babies. I thought that was the end for me but thankfully my babies tested negative now they are 22 and 19 respectively and to this day through all of my struggles and toughest of challenges they are not aware of my status. I did not and will not allow HIV to define me. I still push myself to reach high heights of greatness, I am responsible for my well being and have committed to take ARVs and lead a healthy lifestyle. Life is great even in the face of adversity.”
Anonymous
South Africa
“My wife has suffered from irregular periods for most of her life. Countless doctors, men and women alike, saw her and heard about her symptoms. Many tried to prescribe birth control...one suggested she take some ibuprofen and 'get to the gym more often.' One said 'for someone your age and size, I highly doubt it's anything serious'. It took years of visits and complaints before one doctor finally suggested a vaginal ultrasound. Followed by a pelvic MRI, we found endometrial polyps. It seemed an obvious cause, unexamined for way too long.”
Anonymous
USA
“After an abnormal smear I was invited by phone and a letter in the post for a colposcopy. I took myself to the appointment alone. Before even starting the colposcopy they informed me they would also be doing the Lletz procedure there and then. There was no mention of this prior and after speaking with several female friends this is very normal. After my procedure which was extremely painful and long I did not stop bleeding so had to be admitted onto the ward. Another friend drove herself home after hers and had a collision involving a small dog. I wasn't sure what to think when I got my HPV diagnosis. I hadn't heard about it much, other than what they briefly tell you at your smear test appointment. Seeing the words 'HPV' and 'cervical cancer' in the letter was very worrying at first. However when I got to understand HPV more, I learned that it wasn't something to be ashamed of or confused about. I can now happily say after a year I am HPV free! Get your smears done, they may save your life.”
Sara-Jayne
UK
“I grew up feeling ashamed of being a woman. Ashamed of puberty, of having a period, of showing emotions, of skin issues caused by hormones. I didn’t learn anything about what happens to me because of periods and hormones. I was just given birth control pills. I had acne - birth control pills. Boyfriend - birth control pills. After my second child was born I had breast cancer. My doctor asked me why I’d get checked. ‘Don’t worry about it. You’re too young.’ After feeling my big lump the referral wasn’t even sent as urgent. It took months.”
Christina
Canada
“My grandmother had been told for over 15 years that she had a bad back and was medicated for that. Finally it was found she in fact had a heart issue and endured a triple bypass at the age of 83. We think that she was misdiagnosed due to her sex and her quality of life was less than it should have been for decades because of this.”
Julia
UK
“After being given steroids (oral/topical) for an acute allergic reaction, I started getting eczema on my face. I went to countless derms/docs who prescribed steroid cream after steroid cream, always with the undertone that I was being vain and ‘too concerned’ with my appearance. 2 years later, my entire body was covered, I was incredibly sick. I discovered TSW, the dangers of steroid creams and an online community who had the same horrific experience, suffering so much because docs were over-prescribing steroid cream, disproportionately to women.”
Anonymous
“My mother battled end stage Leiomyosarcoma a couple years ago. The physicians & hospital staff would look to our male relatives to make medical decisions on her behalf. At first it was puzzling for us, however very soon we made it clear that we her daughters were her next of kin and responsible for input on medical decisions if she was unable to make them. In many cultures female next of kin are still undermined when in the presence of male relatives. We can play a key role in education, bringing change and giving them a voice.”
Rajji
“I have been waiting for 15 years before getting my endometriosis diagnosis. I remember passing school exams while fainting in the bathroom because of the level of pain. The doctors did not take it seriously, did not believe me. I lost so many years and it made my illness worse... I had surgery and I have tried almost 10 treatments but I am still living every day with a high level of pain. I have no idea what a life without daily pain looks like. I would dream to live in another body just for one day. My illness is invisible.”
Marion
Switzerland
“PMS and menstruation have been linked together since time immemorial. But my feelings of worthlessness, darkness and emotional exhaustion that coincided with my period were a less common, more debilitating form of PMS known as PMDD (Premenstrual Dysphoric Disorder). I went to therapy for years - for burnout, insecure attachment disorder… until finally, a medical practitioner correlated my mood swings to my menstrual cycles. Simply knowing my diagnosis has taken a huge weight off my mind.”
Nandhini
India
“I am a 32-year-old woman who has struggled with endometriosis for several years. A couple days a month I would be debilitated with pain, I would have sweaty palms, feel sick to my stomach, heart palpitations, etc. For years, I jumped doctor to doctor desperately searching for answers. With much determination & persistence I was diagnosed with endometriosis so bad that the tissue that lines the uterus was found growing outside of it and even around my bowels.
Dealing with endometriosis has been a constant battle. I have had to learn how to manage"
Ale
Canada
“I started to put on weight disproportionately. The lower half of my body at puberty. It was triggered again at pregnancy and then massively at menopause. I got a diagnosis for Lipoedema at 51, having suffered with pain, self esteem issues due to looking different to my peers, Judged as obese when I ate a healthy diet and exercised and no matter what I did, I could not lose the weight. Lipoedema is a hormonal or stress triggered connective tissue disorder, almost always in women and ignored by the predominantly male health profession.”
Julia
UK
“Pre-menopause is a significant time in a woman's life but it hardly gets spoken about, as if a secret that must not be exposed. Doctors often brush symptoms off and consider this something that ‘you're too young to have’ or ‘you just need to deal with’, but there is so much information that women deserve to be given so that they can make informed decisions and better cope with this change. Often it is the woman having to educate the doctor after having found her own resources and having read scientific data herself. But support is a challenge.”
Anonymous
“Since I became sexually active I have always struggled with UTIs getting at least one every year. When I was 25 I got a recurrent UTI. I couldn’t get off of antibiotics. As soon as I got off a course I would get reinfected. None of the doctors I talked to explained what was happening and I kept getting the same recommendations that I have been following for years. I started doing my own research and through my university library I found journals about cranberry, D-mannose, and lactobacilli. UTIs affect so many women yet my doctor couldn’t help.”
Losa
Canada
“I have been the primary caregiver for my late mother, late husband and late father in law. All three of them passed away in the past three years. I am taking care of my 82 year old father now. Caregiving is largely relegated to the women in the family; in my case it came upon me because of my husband's (of 24 years) passing away. Emotional wellness and support for caregivers like me is an underrepresented area. How can we help others if we don't help ourselves? I sought professional help and this helped ease my journey through caregiving.”
Anonymous
India
“Grade 10 I started to feel less energetic. I was in soccer, track and field and loved being active. I began to lose sleep at night and become irritable.
The doctors told me it was probably because of my period,and was sent home. Grade 11 comes. I have completely dropped all physical activity and also gained 32 Lbs. Kids at school were getting sick and a note was sent home.Since I seemed to have symptoms, I was taken to my doctor. Mono had been going through our school. Tests and rounds of blood work, I had Hyperthyroidism aka Grey's Cancer.”
Anonymous
Canada
“When I was 13 I started to get migraines everyday. I went to our family doctor and he told me to keep a journal of when I got them and where on my head. I did this for months. He then said keep a food diary. Did that for months. He then discharges me because I'm being too vague. No tests at all. I was 16 without a doctor. I then took the advice of my tutor (female), she suggested I have TMJ. I go to an orthodontist and I tell him all my problems and he referred me to a surgeon. 3 surgeries later, at age of 33, I have new jaw joints! (I have more but no space).”
Jessy
Canada
“When I was in my early thirties, I started experiencing debilitating fatigue, joint pain, and brain fog. I was constantly exhausted and struggled to remember things or focus at work. I went to multiple doctors seeking answers, but was dismissed as just being stressed or not getting enough sleep.
It wasn't until I found a doctor who specialized in autoimmune diseases that I was finally diagnosed with lupus. Lupus is a chronic autoimmune disease that can affect various parts of the body, including the skin, joints, and organs.”
Sascha
Canada
“I had a sinus infection. Before and after that, for over a year, there’s something bothering me in my throat. I’m undereating and losing weight. I went to an ENT doctor and they didn’t help, said to go to a psychiatrist. I did and am on anti anxiety medication and I still have the same problem. I joined a support group, well more like I lurk in a support group online for people with choking phobias just cause I relate to them but when the poking and feeling in my throat isn’t there I can eat normally. in a small place where I can’t get access to medicines.”
Anonymous
“For over 10 years now I've thought that I'm autistic. When I finally had the courage to talk to my therapist about it she skipped over it. When I talked to my doctor he dismissed and gaslit me. When I got a new doctor and asked her I was given a bipolar then ADHD assessment. No one will listen to me despite what I say. Doctors refuse to say autistic because I don't present like a young boy. I'm not a young boy, I'm a 28 year old woman. We can be autistic too, and going undiagnosed this long makes me feel like my needs don't matter.”
Steph
Canada
“I got a copper IUD. The first time without anaesthetic. It was the most painful thing I’ve ever experienced, way worse than childbirth, and it was unsuccessful. After years with the IUD in, I started to have pain attacks with each period that were debilitatingly painful and left my whole abdomen sore for days. I went to the doctor and he dismissed me with ‘normal’ women’s issues. I later was diagnosed with endometriosis that I resolved via my own research and action. I removed the IUD and started an anti-inflammatory lifestyle.”
Anonymous
“I am sick; they don’t know why yet. I fell into suicidal tendencies at the age of 12, I spent all of my childhood on suicide-watch, the man who dealt with me at the psych told my parents I was attention seeking. I was put on citalopram at 16, that’s around the time when I really noticed how weak I felt, I had fainted at school
At this point in my life I had already been physically abused everyday, I suffered neck and back injuries. My doctor told me I was overweight and that’s why I was fainting (I had anorexia) she said to leave her office.”
Anonymous
Canada
“I suffered from terrible pelvic pain and heavy bleeding for most of my teenage years. I was overlooked by many gynaecologists and often told: ‘It's all in my head.’ After thousands of tests, many pills and injections, and 4 surgeries later I was diagnosed with type 4 endometriosis. By that point, my nerves were already affected, resulting in me needing nerve reconstruction surgery. Two years later, I am getting pelvic pain again and now sciatic pain due to years of damage. I live in Chronic pain due to negligence and lack of knowledge.”
Anonymous
Canada
“I am a 50 year-old woman, survivor of human trafficking, domestic violence, multiple sexual assaults, and I also have lupus. I have embarked on a journey of healing and taking back my life. I want other women to know that they can live a life without violence, free from someone else determining their worth. And that you can create a community in your life that empowers and supports you.”
Anonymous
“At 37 I was diagnosed with breast cancer. Pushed into menopause, I had operations, chemo, antibody and hormone therapies. The focus was on treating my cancer, not talking about menopause and my mental health suffered. 49.7% of today's population has, is or will go through menopause, yet doctors still lack education, failing to recognise, diagnose and treat its symptoms. While society continues to treat menopause as a taboo, women will continue to suffer from preventable hormone loss, and workplaces will continue to lose exceptional talent.”
Belinda
Switzerland
“In 2019 I had episodes where I was unable to speak and didn’t recognize my family or my surroundings. After the team of doctors ruled out a stroke, I was passed around from clinic to clinic with many doctors saying there was nothing wrong, and that I was too sensitive. Many even closed my case calling it nothing but anxiety. I still have extreme fogginess, and it’s only now, in 2023, that I have found a doctor who is willing to work with me and has acknowledged that this is not a mental health issue.”
Anonymous
Canada
“My period started late, no one batted an eye they said it was because I was too skinny. When it came unpredictably they said it was fine I was still young. I went on the pill knowing something wasn't right despite what I was being told. When my insurance ran out and I had to come off it. I didn't get a period for 172 days, I was called a hypochondriac. My doctor sent me to get an IUD- that I never asked for. When I asked the gynaecologist what was happening she finally ran the tests. I have PCOS, and went undiagnosed and scared for 17 years.”
Steph
Canada
“When I was 20 I started having pain in my gums, when I would swallow as well. I had pain in my chest like a burning sensation and then developed bad abdominal cramps. I went to see a doctor who laughed at me when looking into my mouth and said I had herpes even though I was saying it was impossible. He didn't care about my stomach pains, and told me to come back in 2 months if it was still there. I lost 40 pounds and was suffering. I went to see a specialist: it was Crohn’s disease everywhere from my mouth to big intestines. Took half a year to find out.”
Anonymous
Canada
“I’m going through a burnout right now and I wish we had a more accessible holistic women’s health care centre. So many of us don’t know what foods we need, how to decompress and how to listen to our bodies. It’s been over a year since I've been off work and it’s been a tough journey. But I’m aware not many women are as fortunate as me and have to push through since financially they aren’t able to take the time off to care for their needs. It’s a shame.”
Anonymous
“My mother died of ovarian cancer in the 1970s. She noticed a ‘lump’ in her vagina that would appear during her period; but no doctor would examine her during menstruation. When she stopped bleeding, the lump would recede into her uterus. Finally, she found a doctor that would examine her during bleeding. He was horrified and immediately scheduled her for surgery. She went on hormones that bloated her up terribly. She died. 35 years later, my good friend was put on the same hormones, with the same effect. She died. Treatment has not progressed.”
Anonymous
Canada
“I had a neuropsychological assessment as a girl, they told my parents I was in the norm. A year ago I found myself completely burnt out and falling behind when I had always been a good student. I got assessed again, turns out I have ADHD, HP and DCD. I didn’t have the turbulent personality that manifests in boys and I was quite reserved. My untreated DCD leaves me unable to ride a bike because I cannot perceive my body in space, and without my current accommodations, I wouldn’t be in university right now.”
Anonymous
Canada
“Like many women, over a decade, I had three babies. I struggled to get back into shape. After my first child, I asked my doctor how to fix my belly. The advice was to wait until after having babies; if it still bothered me, surgery was an option. My doctor advised me to eat a healthy diet to lose weight. During that decade, I developed back pain, incontinence, uterine prolapse, sciatica pain, carpal tunnel syndrome, and struggled with mental health, all dismissed by doctors. The root cause: Diastasis Recti which I fixed myself and now I help others.”
May
Canada
“I’ve always been extremely weak and tired whenever I got my period. Tired to the point that it was physically difficult to get out of bed and go eat. I didn’t think this was normal but doctors reassured me it was. It took numerous fainting spells that would only happen on my period for my doctor to consider something was wrong. After 5 years, it took 2 blood tests weeks apart to discover that my iron levels dropped significantly during my period. An iron-deficiency that can be treated with iron supplements. This was not normal and I was ignored.”
Anonymous
“In 2013, I told my GP in the UK that I had suffered with extremely painful periods for 7 years and that my mother had endometriosis. He asked me to lie on the examination table, prodded my lower abdomen, asked me if it hurt, and then when I said no he said: ‘You probably don’t have endometriosis.’
I then moved to Zurich 4 years later and, after 3 years of consultations and referrals, I was finally diagnosed with stage 3 endometriosis.
That’s 14 years of pain before diagnosis.
More training needed please!”
Anonymous
UK
“My periods are so heavy I have to stay close to a bathroom at all times. I have an intramural fibroid that is increasing in size steadily, and my periods are getting heavier along with it. The options provided were various medications and the one that had success was taken off the market shortly. I would like more education to be available to help women understand gynaecological health and steps to take to prevent, manage and get rid of fibroids and other gynaecological conditions. How about more info on perimenopause management?”
Anonymous
“I was in a car accident years ago. My mobility was affected and pain down my left arm. I was told it was probably psychosomatic. I was asked if I was an addict despite refusing meds because they affected my ability to take care of my children. Years later an ER doctor thought I needed an MRI of my spine. I have multiple bulging discs pressing on nerves. I just had my first surgery on my L5S1. I need surgery on my cervical spine next. The time to be compensated by the insurance company has long passed because I was ignored for years.”
Anonymous
Canada
“Passed flesh-looking tissue during my period so I went to A&E as I thought I was having a miscarriage. The doctors did tests and told me that I wasn’t pregnant so it was nothing to worry about. Then when I showed them the tissue I had passed, he agreed it could have been foetal tissue and then quickly closed the box, dropped it in the hazardous waste bin and in a cheery tone said - well, you’re definitely not pregnant anymore. I fought hard to see a gynaecologist who quickly diagnosed it as a decidual cast. A&E docs missing basic training.”
Anonymous
UK
“I have endometriosis, PCOS, ADHD and adenomyosis. All these things I have had to fight for care, medication and understanding. I have continually been gaslit in emergency rooms, treated like I’m trying to get pain medication when I express my level of pain. Or told over and over to lose weight. Even when I did lose weight nothing changed in terms of my care.(I’m 37 5”2 130lb) Most times I have been sent Home and told to take Tylenol, bleeding so heavily that my iron is at 0, but none of the doctors will take how it affects my life seriously.”
Dunya
Canada
“I truly attribute my final diagnosis to my husband's understanding & persistence.I’ve had incredible period pain since I was a teen. I used to vomit and be incapable of doing anything for 3-5 days every month. I was told by doctors I have a low pain tolerance and placed on birth control. After watching me suffer for years, after our second child was born he had enough and encouraged me to speak to my new GP. Immediately I was referred to a GYN who diagnosed me with Endometriosis & Adenomyosis. A man never would have had to deal for 20 years with that…”
Anonymous
Canada
“I have been struggling for years to have doctors hear my concerns. The concerns keep building and the more I add to my list the crazier I feel when I try to address them with my doctor. My body is going through hormonal changes that aren't well researched or understood in medicine. I've been put on birth control to manage my PCOS. When I went off of it I was told to diet and exercise to manage symptoms, screened for anxiety. I am so frustrated because I've been losing hair and gaining weight. I have always eaten clean and exercised regularly…”
Anonymous
Canada
“I always had painful periods. I went to see a doctor when my already painful cramps were getting even worse. I went to the ER with sharp abdominal pain and was told that I need to learn to move with my pain. It has been over a year and a half, and I’m yet to see an endometriosis specialist.”
Mon
Canada
“For twelve years I was told I was just lactose intolerant. When I was almost 13, my stomach aches were getting horrible so I finally went to the hospital for it. Turns out I had a twisted bowel and had to have emergency surgery.
When I was 17 I tripped over a bench during a performance and tore my meniscus. The doctors told me to just walk on it, but it was getting so bad that I couldn’t even do that. Turns out it was an extra bone in my knee slamming against a nerve. Couldn’t walk properly for a year. Stopped walking on it and it got better.”
Anonymous
“When I was 18, I started to go to university. Within the first two weeks I felt so awful; couldn’t get out of bed, couldn’t focus, forgot a lot of things, didn’t have any sense of direction, got double vision, and could barely walk to my classes. We all thought it was just depression. It was Adrenal Insufficiency. If I never dropped out after that, I would have died. I now take cortisol daily so I can survive. I still can’t go back to school because I can’t learn properly. My pituitary gland is damaged. I’m now 22.”
Anonymous
“I have (self-diagnosed) lipoedema.
It is reported that 11% of women have lipoedema. I believe this is grossly underrepresented as I cannot be alone in not being able to get a diagnosis. This is a debilitating disease. It causes discomfort and shame.”
Anonymous
Canada
“I always had thin hair, under eye bags, and acne. I thought it was just genetics. My doctor told me to take iron but I didn't know how long to take it for, and because of the warning labels, I thought it was safer not to. After the better half of my life my dermatologist finally told me the iron level I should be at, and I was given a standing order to keep testing until I get my iron to maintain at that level. For the first time since I was a teenager, I was able to prevent iron deficiency and have energy for my life again, and my acne is improving.”
Rose
Canada
“At age 13, I was diagnosed with Hodgkin's Lymphoma which was cured with chemotherapy and radiation. Due to the radiation treatments on my chest, I was diagnosed with breast cancer at the age of 38. After the bilateral mastectomy and reconstruction surgeries, a myofascial release specialist found areas of concern near my diaphragm. My doctor did an emergency surgery fearing it was cancer. It was found to be five pounds of fibroids that had invaded my uterus and spread up to my diaphragm. Luckily, it was not cancer and just endometriosis. (Phew!)”
Anonymous
USA
“Women in the UK only get to see gynaecologists if there is a severe problem and they are referred by their GP and placed on a waiting list. Women’s reproductive health needs specialist care and direct access to à gynaecologists should be mandatory. The female body is metabolically and hormonally much more complex than male counterparts, yet GPs in the UK are expected to act as specialists in this area. Another example of how women’s health is placed at low priority. My life changed when I moved abroad and had direct access to specialists.”
Victoria
Switzerland
“Smear tests were always been promoted negatively to me, and so when I turned 25 I was so anxious about going for my test. I decided however that I would go, as it would not be as bad as having to go through treatment further down the line. I am 26 now, and I can honestly say that smear tests are absolutely fine, pain free and an experience I would go through any day to protect myself from Cervical Cancer. I am positive for HPV, and I now understand how normal this is. I encourage every woman to go for their smear test.”
Abbie
UK
“When I was around 10, I started experiencing a weird pain in my lower back and abdominal area. One night, my pain was so strong that they took me to the ER. A young male doctor did an abdominal ultrasound and told us I was getting my first period and that we shouldn't worry. But the pain continued, I couldn't even stand in an upright position. So with that preliminary diagnosis, my mom took me to her gynaecologist and she stated that I must be having a kidney infection, gave us an order for a test and later figured out that I had VUR grade 2.”
Sofia
Chile
"I have PCOS and it can cause near fatal menorrhagia. My own female doctor wouldn't listen to me or send in any referrals as an emergency. I was losing blood daily for a year.
When I finally saw a female gyno, she showed no empathy and wanted to perform a barbaric surgery on my uterus without explaining long term consequences. I was given medicine that was ultimately banned in Canada because it caused liver failure in women in Europe. I spent 3 years endlessly bleeding and having 2 emergent D&C’s.
Women need more options. They need to be heard.”
Anonymous
“My story actually starts from my mom. This is the time she had started with her perimenopause and awareness about that was pretty rare in those days. My dad had shifted cities for a few years and was posted in Delhi.
While she was going through her hormonal changes she saw a horror movie and it affected her mental health so badly. I remember seeing her struggle to raise us and keep herself balanced. She felt super guilty. I wish we knew more about it then and could support her. My focus on my health today is because of her experience.”
Prerna
India
“I was pregnant. In week 12, the baby’s heart still hadn’t begun to beat. I attended a workshop where raw cheese and wine were offered. Jokes were made that fortunately no pregnant women were there - I kept silent. I took the Friday off for uterus curettage, went to work on Monday, and never talked about it. It was a draining experience that happens to 1 out of 10 women. Like me, most of them stay quiet about it. Unlike me, many of them do not have access to top-level gynaecological health care.”
Anonymous
“My doctor discarded my concerns, after a year or perhaps more I was diagnosed with early stage breast cancer.”
Mariam
Switzerland
“In 2018, I was diagnosed with endometriosis. It is a chronic disease without cure and apparently quite common, but little is known about it and most importantly it is very difficult to diagnose. Since then I struggled to get pregnant and it is affecting my professional and personal life. A lot of women are affected by this disease and live in constant pain. We need more research on endometriosis!”
Laura
Spain
“I am a person with type 1 diabetes and have an insulin pump and cgm which greatly have improved my diabetes management. Just when I thought my diabetes was so much better controlled, I was blindsided by the symptoms of menopause. Many of my symptoms I didn't realise are connected to perimenopause/ menopause. And so began my search for information and starting on the HRT journey with the support of my GP. I am 5 months in now and still working on getting the hormone balance right to reduce the symptoms that are impacting my daily life.”
Christine
Ireland
“If it wasn't for my mother, I never would've been diagnosed with ADHD. Because they did the studies on young white boys, girls and people of colour take significantly longer to get diagnosed. The only reason I got diagnosed is because my mother found out she had ADHD, which only happened because her brain was so tired from hiding the symptoms that she broke down. Only because of that did she get diagnosed, even after years of telling her doctors that she knew she had ADHD and wanted to get diagnosed. We need to change, we need to start listening.”
Anonymous
“I was in and out of the hospital for years. Doctors laughed at me saying I was crazy. Saying it’s all in my head.
I was having extreme pain in my head to the point I’d puke, chronic vertigo, losing my vision, lightheadedness, constantly sick, and I was losing jobs left right and centre. My GP kept saying it’s depression. I went to 9 specialists who also told me it’s all in my head. I almost took my life. 5 years of my life wasted until I finally went to a Naturalpath who found out I had late stages of severe chronic Lyme disease.”
Razan
Canada
“When I was younger I hurt my ankle. After three months of pain and parents not believing me I was taken to the hospital. The H took one X-ray after waiting in a waiting room for 9 hours and then said I was fine. I could hardly walk so my parents bought me a crutch to ‘indulge me’. I was still in pain so they took me to another hospital, which practically turned me away. At my third hospital visit the one my grandparents took me to and a dr from across the room pointed out exactly where it was hurt. He X-rayed again and found a fracture.”
Anonymous
UK
“I have always had problems with my period. I didn’t start until I was almost 17, and when I did it was extremely heavy with large blood clots about the size of an English 2 pence coin. Since then my periods have been irregular and very heavy which made me dizzy. I went to the Dr. and they did an ultrasound and one blood test and found nothing so they gave up. They told me the only thing they could do was give me birth control pills and hope that trains my body. I am now on the pills and have a regular period but still extremely heavy.”
Anonymous
Canada
“My whole life I've felt like something was slightly off, I was prone to emotional outbursts, physical violence and self harm or starvation. My whole life doctors said I was just an emotional, high strung little girl, that all girls are like that when they are young. It wasn't until I spoke to friends and colleagues that I realised there really was something different. I'm seeing a specialist now, and they haven't diagnosed me yet, but the look they give me when I tell them something I thought was normal... It scares me.”
Anonymous
“My mother passed away when she was 50.
At about 48, her periods ceased. She never went to see a gynaecologist, after a life of feeling either unheard or uncomfortable when doing so. Shortly after, she stopped smoking, after 35 years, not assisted.
That was when her episodes started. She got agitated, delirious, and terribly depressed. She went to different doctors.
None of them asked about her habits, or physiological aspects. They put her directly on antidepressants, a cocktail… she took her life… not a surprise seeing the cocktail she was given.”
Da
Switzerland
“I have always had painful periods. Since I started getting them when I was 10, almost 11 years old. My mom didn’t even know until I was 22. I just felt ashamed and also thought it was normal. I had enough and told my doctor it was ruining my life. I’m glad he listened but I was told my options were birth control or prescription strength naproxen. Two years later, I now have urinary incontinence and mucosal discharge and no one can figure out why. I just keep getting referred to someone else. I am tired of waiting and waiting. I need help now.”
Anonymous
Canada
“Careless supply of birth control pills/hormonal methods without taking into account patients' risk factors and patient background.
Pharma companies undervalue women-specific care, which is highly reflected in the way birth control methods are produced and supplied nowadays. I cannot count how many friends have had health problems because of not receiving the correct birth control method at first. Many of them were prescribed hormonal methods from the very start of their sexual life and had to stop using them because of complications.”
Anonymous
“Some years ago I started to suffer from chronic pain that was misdiagnosed at first by my doctors.
Doctors kept telling ‘stress’ was the cause and the only recommendation was to go to physiotherapy, without any success. 2 years later, came the final diagnosis: a brain cyst which was causing me hydrocephalus and I ended in emergency surgery. It’s been 5 years since the surgery, and during this time I haven’t found answers to my symptoms of a brain illness. And I believe I was not heard because I am a woman and they considered I was weak.”
Amal
Switzerland
“I fear being judged. I was diagnosed with mood disorder & I need more than just pills. I need the root cause to be understood. Growing up, I didn’t know whether the new country where I immigrated would be my home or will I along with my family be deported? Immigration process was years long and the uncertainty took a toll on me. I was under the pressure of doing well academically while juggling work & family responsibilities. As a woman, my mental resilience is as though limitless. Still I fear being judged for taking pills.”
Anonymous
“Majority of my life I lived with a gut health issue which robbed me of my life. It was periodic and cyclical. My health condition is irritable bowel syndrome which affects women at a higher rate than men. I have learned a lot about what the triggers are and how to manage it so I don’t . Miss a best of my life. I am a pharmacist who has decided to become a health and wellness coach to enable other women with gut health to lead their best lives. I am passionate about supporting other women and seeing them thrive.”
Marica
Canada
“I gave birth to premature twins at 29 weeks with a vaginal delivery. The male obstetrician did not listen to my request to deliver and was pushing for a C-Section by fear tactics. I’m forever grateful to the midwife who elevated my voice. She listened to me and understood that as an athlete I was ready to endure the pain but that I wanted to deliver them without intervention to give them the best start I could. She enabled me to deliver two babies who have grown into healthy, strong girls aged 11. Medicine needs less ego, more empathy.”
Anonymous
UK
“I grew up in a place where access to high quality healthcare meant knowing someone and paying a lot of money. Having moved to Switzerland, I embraced the healthcare system here where every patient is treated like a living being, not like a wallet. So I happily go to all the regular checkups. My mother, however, is still traumatised by her healthcare experience in the past. Her heartbeat starts racing if I suggest she go for a checkup. She tells me she won’t ever go to any doctor again. I wish everyone had the same access to healthcare.”
Daria
Switzerland
“I used an IUD for over fifteen years, and was happy as I no longer got heavy periods which were so painful every month. I never thought that it might actually have been a good thing as a change in my periods would have signalled something was off much earlier on. It was only after experiencing consistent abdominal pain, I was diagnosed with fibroids. Complications during surgery resulted in an emergency hysterectomy, instead of the planned laparoscopy. I wish I had paid more attention to my health earlier on, but I was always too busy.”
Anonymous
Canada
“My grandmother had breast cancer.She discovered it after she got married. She lost one of her left breasts . Not only did she survive cancer when no one was giving her hope but she managed to have four kids and die at a very old age. She beat cancer and lived her life to the maximum, and never discussed it.”
Ma
“I always had irregular periods, but I read it was normal for some women. It was only when I had a bad reaction to anti conception that I was diagnosed with PCOS, age 25. I left the doctor's office with a diagnosis, but without any explanation of what it meant. What followed were years of my own research, self-education and I finally understood my symptoms were not only in my head. I learned a lot about my health, my cycles, how to track ovulation naturally and more. Knowledge I should have had as a teenager to help me identify my condition sooner.”
Anonymous
“I was repeatedly raped as a child and asked to have my uterus removed when I was 21. Despite very painful periods and ovarian cysts throughout my life I was never approved for a hysterectomy. I am now in menopause and hope I don’t develop ovarian cancer.”
Anonymous
“When I started to try to conceive, I went off the pill after 2 years of being on it. For more than a year since then, I was getting one period every 2-3 months, leaving me very little chance of getting pregnant. My cycles were normal before going on the pill. When seeking medical help, I was diagnosed with PCOS, and the treatment plan I was given was to take birth control. There's no effort in looking for the cause, and PCOS is such a general diagnosis for so many symptoms and causes. My infertility trip was so helpless and depressing.”
Tina
Canada
“I’ve lost my period. I’m 32 and suffer from a condition called secondary amenorrhea. While the doctors suspect various causes (low body fat, vigorous exercise, emotional stress etc.), they don’t know for sure, and even more frighteningly, they don’t know how to cure it. Although you solve the above problems, there’s no guarantee the period will come back. As a result, I’m undergoing in-vitro fertilisation (IVF). I wish there was more research about amenorrhea to spare myself and others from the often lonely and anguish journey to fertility.”
Felicia
Switzerland
“I always had very painful & very heavy periods since age 15. A doctor told me they would stop once I had a baby. I still had painful periods after having my 7 babies. Anytime I talked to a doctor since, I was told some women just have worse cramps. While raising my 7 children, I often pushed my needs to the back burner. After suffering for 32 more years, I realised my cramps are not at all normal. I finally sought help & the doctor told me my cramps & heavy period are due to menopause approaching & that’s just how it is when you are 47.”
Laura
Canada
“I have had horribly painful periods since they began. Most often I was tired to the bone from pain. Other times I writhed in pain in bed for hours. Sleep was hardly possible. And they were heavy. Almost every single time I've leaked through my underwear onto the sheets, regardless of wearing the largest size of pads. I've seen a number of OBs in different countries. All my tests came back clear, but I was still in pain. Finally at age 30, I went to a naturopath who was able to figure out my hormonal problems and anaemia. Under treatment now.”
Anonymous
Canada
“I never liked the public changing areas in a swimming pool because I was always asked why my stomach or my legs were so hairy. I grew up feeling ugly and not feminine at all, shaving as a teenager just made it worse.
The trend of women required to be naturally smooth-skinned made me doubt myself.
As an adult I learnt about Hirsutism (a condition in women that results in excessive growth of dark or coarse hair in a male-like pattern) and slowly I accepted that not every woman looks like a Barbie doll and that's fine. We are all pretty as we are.”
Anonymous
Hungary
“Trust in doctors in women's healthcare had fallen below the line when the doctor wanted to cure a disease without examination. When that diagnosis was already 2 years old and there was no sign of any issue anymore. This is how the story begins. Luckily I raised awareness about my own body and after long practice I became a certified pelvic floor muscle trainer for women. So far I've collected so many stories of other women - my customers, that I can surely write a book. My story is about bringing health and happiness to women's lives.”
Viktoriia
Ukraine
“First 5 months of pregnancy I was vomiting all day long. All the doctors were refusing to help, telling me that it's normal and I should just take myself in hands and eat more, otherwise I'll harm my baby. Only in the 5th month, after a few scandals, they took me to the hospital for some injections. 3 days and I'm OK. I was suffering for 5 months because of something that could be resolved in 3 days. My eating habits were destroyed, so in the hospital they've found out that I have gestational diabetes.”
Iana
Switzerland
“I was forced to induce labour by shaming me, that I'm going to hurt my baby (wasn't true). The epidural wasn't made right and they refused to re-do it even though I was in labour for 27 hours. No one cared about this hell, I was waiting for 3 hours in the chair to be sewed after labour, alone. There is no way they'd have let a man go through the same hell women go through during our lives. Pregnancy, labour, periods, blood and pain and no one cares. ‘It's natural’ that's what I hear, and I hope I'll never bring a daughter into this world.”
Iana
Switzerland
“Being the first college generation in my family, I decided to major in computer science. However, I faced many challenges when I entered the workforce, particularly when I started working in the healthcare industry. I observed that the healthcare industry was plagued with bureaucracy and inefficiencies, and that it was evolving at a much slower pace compared to other industries. Despite this, I am grateful for the healthcare that I could access in the United States, which was far better than what women in other countries could access.”
Anonymous
“I was hit by a car when I was 18. The car was travelling at 70km/h and I know I am lucky to be alive. At the time medical tests and procedures were done by order of necessity. An MRI was never performed and as the pain persisted in my knee for 9 years I was told I was faking it, or looking for drugs. It took 11 years, 21 doctors and 3 specialists to finally be diagnosed with stage 4 CRPS and I will never be pain free again. I now require fentanyl and ketamine infusions to function at a minimum. All that for ‘looking for drugs’.”
Elizabeth
Canada
“I consider myself privileged for growing up in a family that supported my and my sisters' education. We all work in healthcare and pharma and despite this, we still face prejudice about our competencies. Stereotyped as females from Eastern Europe we are often treated inferior to our colleagues. When I became a mother, I was asked by my male boss when I will stop working, as this is what we all (meaning all EE females) do when we have children. I did not stop but left soon after- for a new job at Roche.”
Anonymous
“All my life I thought I was stupid. I had to change classes frequently. Either I was too dreamy or too loud. My grades were average at best. But my biggest dream was to go to university. It took me many years and setbacks in a lot of jobs until I finally had the courage to apply and ‘cure’ my stupidity, as I thought. But there, I encountered more setbacks. So I went to a psychologist, who diagnosed ADHD. It all made sense! Women with ADHD often suffer from low self-esteem. The evaluation is more complicated for us.”
Anonymous
“I struggled with eczema as a child. From a young age, I felt different due to my condition. My eczema was something I couldn't hide from strangers, and unfortunately, other kids were quick to point it out and make fun of me. It continued for 25 years when I took things in my hands and understood the reason.
My experience with eczema deepened my empathy. I learned to be more mindful of other people's feelings and to create a safe and comfortable environment for those around me. Today it helps me reach others who need my guidance.”
Agnieszka
Switzerland
“I’ve suffered from heavy migraines since I was a child. I know many women who have them too. It comes unexpectedly, cuts out my senses, makes me vomit and not able to speak for hours, sometimes days. The doctors say it’s still a mystery for them…”
Anna
Poland
“I have BRCA1 - a breast cancer gene mutation. I was fortunate to discover this and able to take drastic but preventative action. But it wasn’t until my mum’s devastating Ovarian cancer diagnosis that I - by chance - found this out. My NHS care experience has been inspirational. But why isn’t there more awareness of BRCA? And why isn’t BRCA testing more routine?”
Anonymous
“I had 1st breast cancer at 40. Still young and strong, I kept working in-between operation, chemo and radio. My employer was very supportive and I successfully continued my career after the recovery.
10 years later it came back, and this time chemo and mastectomy with reconstruction, this time I had to go on a full sick-leave for a year, as I felt very tired and I also had to take care of my 2 adopted kids with a lot of health issues.
6 months after my sick-leave I was made redundant at 55 after 26 years with the same employer.”
Tatiana
“I am 56 - menopause in full swing - often feel tired, irritated, hot flashes, headaches, difficulty to concentrate during the whole 8 hours working day, not ready to travel on business as much as before and am not as enthusiastic about team-buildings and personal development as before - I’ve had it all! How the hell will I survive another 10 years of working life before retirement and what employer will keep me for these 10 years in the state I am in? Me as a boss wouldn’t have tolerated such behaviour and would have fired myself.”
Anonymous
“In the midst of a horrifying miscarriage, a male ER doctor told me my bleeding was ‘normal’ and discharged me despite my insistence that something was very wrong. I collapsed on my way out the door. Turns out I had been haemorrhaging. I spent the next week in the hospital receiving transfusions and one emergency surgery. It took me months to recover from the blood loss. If I had been listened to, I believe my experience would have been less severe.”
Janaye
Canada
“It is often justified that women who undergo psychological abuse at home or workplaces are just too sensitive, or hormonal, or have to have thicker skin. Over long periods of time they end up developing undiagnosed mental health problems that affect their entire body. I have studied and worked in some very toxic environments, and only after many years of constantly being sick and going to doctors, I was diagnosed with depression and anxiety. I am taking medication now, and I am in the best shape of my life, but I did lose many healthy years.”
Anonymous
Canada
“I grew up thinking that women couldn’t be doctors. My mother always desired to become one and her family didn’t let her study. When it came my time to decide, I was very sure which was my purpose in life: to become a doctor. I decided to perform a vocational orientation test and it confirmed that I was in the right direction. I am a doctor, and women can be excellent doctors (and at the same time mothers, wives, sisters, daughters and all that we want to be).”
Anonymous
“It’s time to lower the age of breast screening. Black women don’t fall into the standardised age of 50 years old to begin breast screening. We are presenting with the disease at far younger ages (under 50), more aggressive subtypes and later stages. I was denied a mammogram at the age 40 and at 42 when I requested to begin my breast screening. The reason: I wasn’t 50 yet. Two years later at the age of 44, I discovered a lump and received a diagnosis of triple negative breast cancer. Thankfully I am here to tell my story and advocate."
Anonymous
“When I was a mom of an infant and still breastfeeding, I had a very painful outbreak of an infection. The doctor only gave topical meds because they believed it’s not safe for me to take a well known effective drug due to breastfeeding. I later found out that the data states this drug is not carried through to the milk and is safe when breastfeeding. If the research on breastfeeding was more widely known, women would not have to delay lots of treatments and put up with the pain in this particularly vulnerable period of their lives.”
Lidia
Canada
“I began to have what I simply called ‘attacks’. They left me weak and very scared. I had these episodes once or twice a week consistently. I saw the doctor. He didn't seem to hear me. All he saw as an overweight, top-heavy black woman. He told me that I needed a better bra to support my ample breasts. I was dismissed. I immediately bought a new bra. The ‘attacks’ continued. One year later I had to have emergency surgery to remove an extremely perforated and damaged gallbladder. My bile duct was clogged by stones.”
Anonymous
USA
“Every month I knew my period was coming because even generic songs on the radio were enough to send me into tears. I would have cramps that would render me immobile until the cramp had passed. For years I assumed that my emotional responses and severe cramps were normal parts of ‘PMS’ and being a woman. It wasn't until I was being evaluated for anxiety and depression that my clinician (a wonderful woman) suggested I may have PMDD, and that the monthly mental and physical pain was not something I had to live with.”
Roshani
USA
“I had intense stomach pains and other symptoms that pointed toward a stomach ulcer. I had a phone appointment with a GI specialist and after I told her what pills I take for my mental illnesses, she told me: ‘For people like you, this is usually in your head. You should get some psychological support’. I had been seeing a psychiatrist 1-2 times a month for 3-years at that point. I healed my ulcer on my own.”
Dee
“I grew up in a privileged environment; both my parents, medical doctors led me to follow a career in pharmaceutical sciences. At uni, the only meaningful difference was biology between adults and children. While I recall the anecdotal paper on fast metabolization in some populations, it took my mother's heart attack to shake me and make me question our standard of care and education. My mother, a biracial medical doctor was grossly dismissed by her peers. It took hours of advocating for herself until she received lifesaving care.”
Melissa
Canada
“Nine years ago I was diagnosed with a brain tumour. That diagnosis changed everything. In my mind, brain surgery was a death sentence. However, forty-five minutes after the operation, they woke me and much to my surprise, I felt fine. Being faced with your own mortality takes an incredible toll on your confidence. I had to learn to walk, talk, work and live in confidence once again. I am grateful for how far I have come and the world of opportunity that Roche has provided.”
Anonymous
“My periods were very painful from the start. My mom and grandma also had that and doctors also told me it's normal for some women to have painful periods, so I stopped even mentioning it and just stuck through even though I was suffering every month despite painkillers. It was only when I was having trouble getting pregnant in my 30s that I was diagnosed with endometriosis. Even the expert on it told me this condition is hardly known and there is little that can be done.”
Tanja
Austria
“I started taking the contraceptive pill when I was 15 because of some skin problems. As far as I can remember I suffered from awful headaches. My headaches made it even impossible to work. My gynaecologist didn't take me seriously when asking him if there could be a connection and for another opportunity instead of taking the pill. So I changed my gynaecologist, stopped taking the pill and haven't had headaches within the last 4 years! Talking to others let me recognize they suffered from similar symptoms due to taking contraceptive pills.”
Anonymous
Germany
“I am a female doctor. I’ve had a few too many patients ask for ‘a second opinion’ when they really meant a male opinion. On one such occasion, I had a junior doctor explain a diagnosis to a family as I stood behind him and spoke through him, using him as an elaborate megaphone, because they refused to hear it from me.”
Anonymous
“I had struggles with my period since I was 12. My doctor didn't pay attention and told me that my pain was normal. I started to search the symptoms by myself and I found that there was a huge possibility of having endometriosis. I asked my Dr. and said that was impossible and treated me as crazy. 10 years later, I found a Dr. and her staff with different doctors (images, nutrition,surgery, etc) specialising in endometriosis. She heard me, understood me and guided me in the process of detection, surgery (bowel resection) and recovery.”
Micaela
Argentina
“I'm suffering from Lipedema. This disease affects about 10% of western european women. But this is an estimation, since it just starts to be acknowledged as a disease condition - and women suffering from it are not ‘just fat and lazy’. It is painful, it chronically-progressive inflammation & proliferation, it is hereditary, it is triggered by female hormones. AND, research on it is not very popular - so, your choice is intensive surgery, or lifelong suffering.”
Anonymous
Switzerland
“I was diagnosed with breast cancer and chose to have a double mastectomy, even though it was caught early. I had pre-cancerous formations on the unaffected side and felt it was a matter of time before I faced this battle again. Several providers questioned my ‘radical’ decision and asked if my husband agreed with my choice. I told them it was my choice because it was my body and he knew I would make the choice that was right for me. There needs to be greater sensitivity from providers around bodily autonomy, regardless of one's marital status.”
Natasha
USA
“I was sent home from school, due to my painful period. After that, my mom took me to the gynaecologist, and soon I was taking the birth control pill. The pill will kill the pain, I was told - not for me. More than 10 years later, after a visit to the gastroenterologist, I realised I'm not only feeling excruciating pain during the bleeding phase but as well beforehand during the ovulation period. The unfulfilled desire to have a child made me realise that there's something wrong. I diagnosed myself with endometriosis and got surgery.”
Jessica
Switzerland
“As a young lady, I took the birth control pill. I took it over decades with knowing but ignoring the risk about thrombosis and other side-effects. After 15 years of taking it, I started to realise what I am doing to my body and stopped. I got myself a copper spiral. Since then, I have much stronger pain and cramps throughout the menstrual cycle. The research in that field stopped in the 60s, because it is ‘good enough’ for a woman. Trials on birth control pills for men discontinued because of the exact same side-effects we are suffering from every day.”
Anonymous
Austria
“I am trying for pregnancy for almost 8 years now. Doctors identified some issues and suggested fertility treatments. So far, I finish the ICSI process and I failed and doctors cannot say what went wrong. I wish the science could advance more to find the root cause for the retro. And I notice Roche's focus in this fertility area is not much as well.”
Anonymous
“I have coeliac disease, which I only developed as an adult during my pregnancy. I was very lucky to have good doctors and receive the correct diagnosis after just over half a year. I've heard from so many women who suffered for years, even decades, some of them almost dying, until they knew what was wrong with them.
My daughter was much less lucky. She's been suffering from spondyloarthritis since her teenage years, but the diagnosis was only discovered a couple of years ago. Unfortunately no treatment has yet worked for her.”
Barbara
Switzerland
“I was diagnosed in my teens with PCOS (poly cystic ovary syndrome) due to my lack of periods, excess facial hair. The treatment - lose weight, go on the pill and have hair removal. Fast forward a few years and I was diagnosed with an overactive thyroid, saw a specialist endocrinologist who only focused on the thyroid. From my own research, I have not had my hormonal imbalances reviewed or treated as a whole. I am still struggling with PCOS symptoms and find there is not much support from the health industry to improve women's health.”
Karen
Switzerland
“I had endometriosis that was left undiagnosed for about 5 years - by the time it was found I had a mass twice the size of my uterus. Multiple surgeries and rounds of hormone treatment couldn’t get the condition under control or reverse the damage done. I was perimenopausal at 29 and had a full hysterectomy at 33 which means I’ve been on HRT for more than 10 years now. I didn’t know endometriosis even existed until something was seriously wrong, if I had known maybe I wouldn’t be in this situation, still living with the physical and mental scars.”
Anonymous
UK
“At age 42, in June 2017, I felt a lump in my left breast. Immediately booked an appointment with my doctor. He thought there is no reason to panic but just in case he prescribed me a mammogram... It was then a rollercoaster: biopsy, imaging, surgery, chemotherapy (plus another surgery), radiotherapy, hormonal therapy. Although in the beginning it looked very encouraging (small tumour identified early) I had to survive the mastectomy, the hair loss, periods of being sick... all my life changed, it was not me in control but the disease.”
Anonymous
“Lean suffered from chronic gut health problems for over 15 years and has exploited all possible diet plans, medicines, and advice from inline support communities, with little real improvement. Hundreds of thousands of similar stories she has heard after communicating with other patients about IBS and SIBO management.
It was until she reshaped her understanding of the issue and built the system on her own that she gradually reversed 80% of her symptoms successfully.”
Anonymous
Singapore
“When I started at Genentech the first product I worked on was a medicine for acute stroke. I made sure my family/friends learned about the signs/symptoms of stroke and the importance of early diagnosis/treatment. Last year, I was devastated when my aunt suffered a stroke while in the hospital that went undiagnosed for over 24 hours - far too late for treatment. Today she is still disabled. After learning how different the symptoms of stroke are for women vs. men and that women are often diagnosed late, I am passionate about changing these facts.”
Stephanie
USA
“I went through the process of egg freezing and I found it unnecessarily difficult. There is a lot of noise around this procedure, the reality of the facts is that as a woman, I want to know that if I ever need help in conceiving, I have done everything in my power to have options.”
Sarita
UK
“I lost a maternal aunt to cervical cancer that was discovered late. Because I was around 14 years old, it did not occur to me until my 20s that she was very young when she died - around 32 years old. I also did not think that she would die. I did my first Pap in my early 20s, and I am now strict about doing so regularly, or (preferably) a HPV test. The reality is that still in Africa thousands of women of all ages die from this. Education about screening tends to end in urban areas or online, and many are not familiar with the latter.”
Anonymous
South Africa
“I received a Stage 3, triple positive breast cancer diagnosis in 2017, Valentine's Day. I am not the type to joke with my health. My body was giving signals. Unfortunately, my doctors did not know what to do prior to the diagnosis. According to them, I was too young, my OB-doctor's SBE 6 months prior ruled out any lumps.
6 months later I was receiving a diagnosis. Stage 3, metastatic to the lymph nodes. Today I am 6 years free. However, I choose to be an advocate. I encourage others to be body aware, and know how to advocate for themselves."
Oluwatoyin
USA
“I have always had problematic periods… irregular, painful cramps. I went on birth control around age 21 to alleviate symptoms. I had to switch pills several times to avoid side effects. I finally found a pill that was ok and it was discontinued. Now over 20 years later, I am still on the pill even though I don’t want to be because I feel it’s the least worst option. I’m starting perimenopause but have been told I can’t test hormones accurately while on the pill. Do I just have to put up with feeling hot, lack of sleep for 10 more years!?”
Anonymous
“I feel ill (bad cold/ sore throat/ headache) for the week before my period every month and I have painful stabbing pains before and during it which are sometimes so bad I can hardly stand/ sometimes vomit. I feel unwell for two weeks every month. That’s half my adult life. Doctors don’t care. ‘Everyone has period pains. Take some paracetamol. At least your periods aren’t heavy.’”
Catherine
"My father always told me I could be and do whatever I wanted to. I turned out to study medicine and chose surgery as my specialty.
Nowadays it is still difficult to find a female role model that manages to be a successful surgeon and a mother.
Another aspect is realising how medicine has been tailored from men to men.
From instrument grips being too big for our hands, from being often mistaken for the nurse by the patients.
Many patients also shared with me how often they had their symptoms been neglected or referred to as not real. Our voices matter."
Sofia
Switzerland
“I was 11 when I was diagnosed with Juvenile Rheumatoid Arthritis. From a young age, I have been on strong medicines to manage my symptoms and preserve my joint health. When I was ready to start a family, there was very limited research on medication protocols for pregnant women and their safety profiles for both the woman and for the foetus. My doctors and I found a way through and made choices to protect the health of the baby. I went 2 years without medication before delivering my first child. The repercussions took time to resolve.”
Francesca
USA
“I have had dozens and dozens of bladder infections in my adult life. There is no pattern, sometimes it is associated with intercourse but more often than not, it isn't. I have been on antibiotics on and off for a very long time. Each incident is treated as if it is the first time I've had one, and no doctor has suggested a diagnostic workup. It is very frustrating. Multiple courses of antibiotics can lead to antimicrobial resistance and there doesn't seem to be an end game in sight.”
Anonymous
“It took years to get a barlow diagnosis. I was told my symptoms were in my head or due to being a new mum or work stress. I went to my usual doctor with extreme palpitations and was seen by a student, he read my notes and asked me if I had ‘maybe had too much to drink on New Years Eve’!!! Then he listened to my heart and his face dropped. I was at a cardiologist the next day who happened to take a look at my thyroid whilst scanning me. Then to an Endocrinologist and a diagnosis. It took YEARS.”
Anonymous
“I've always had painful periods and had to start taking the pill because of it. My gynaecologist kept saying it was normal to feel pain, even after I had learnt what endometriosis is and asking him if that could be it. Years later I went to a specialist and turns out I do have endometriosis and a big cyst grew in the 2 years since I stopped taking the pill. I'm now on hormonal therapy, hoping I won't need surgery as well.”
Anonymous
Switzerland
“After being diagnosed with endometriosis my only options were hormonal therapy or getting pregnant (not naturally but through IVF). I looked into ongoing trials on clinicaltrials.gov and there were only around 600 trials. Minority was with investigational drugs and most of these drugs were old hormonal therapies. How can a disease that affects 1 in 10 women not attract more and innovative research!?”
Anonymous
Switzerland
“My mom passed away when she was 42 from ovarian cancer and she had had breast cancer too. I was told I had to get tested for the BRCA gene mutation, which my mom carried, as it increased my chances of developing the same disease. I finally got the courage to do the test 2 years ago, and when I came out positive I knew I had to take action. I had my ovaries removed a year ago and am now navigating a sudden menopause at the age of 42. I am on HRT but more often than not I have to advocate for myself, as many doctors are clueless about menopause.”
Cynt
Argentina
“The period!!! Without pills : extremely painful – fainted from pain 2 times – cramps, spending the whole night in the bathroom suffering, +3-4 kgs of water retention, herpes recurring 10 days before, or tonsillitis.
With pills : no libido, emotional downs, vitamin depletion, but significantly less problems.
It is time to get significant data on periods to understand it, hormonal and immune fluctuations and find real solutions. And also educate women and health providers on what is normal."
Xenia
Switzerland
“On December 26 2011, at 35 years of age, I survived emergency brain surgery which nearly took my life. I had never experienced headaches before so there was no way to know if I had a brain tumour. I woke up the morning of- and started having back to back seizures but not understanding what was happening to me. Paramedics rushed me to emergency. Hours later I was rushed to another hospital for surgery. 2 weeks later, the neurologist said, ‘You’ve had this tumour for over 20-25 years.’ My brain surgery scared me back to life.”
Elizabeth
Canada
“My child was often tired and pale. I insisted there was something wrong but was disregarded in my concerns for being an over-anxious mother. Turns out she had celiac and we had not discovered it until almost 6 years of life.”
Anonymous
Switzerland
“I am celebrating 20 years of life after my oncological surgery. Living with one kidney, part of the stomach, without part of the pancreas… And in 2021 I developed diabetes as well. But … life is too beautiful to not live it to the fullest. I have a wheel in my hand.”
Mateja
Slovenia
“Did you know that pregnant women with type-1 diabetes need to keep their blood sugar levels at the same level like a healthy person? It’s literally like a person with two broken legs having to walk like a person with no broken legs - for 10 months! This is not talked about enough, yet it’s so important to drive awareness that it’s normal and ok to not be able to reach perfect levels every day. I know that many women are stressed about this fact, but we need to support them and make sure they are not shamed for having bad days.”
Anonymous
"I have always felt pain in my body; joints, muscles, and tiredness have always been part of my days since I was very young. At age of 34 I had my first hip prosthesis; later on disc hernias, bones necroses, arthritic joints, and the only diagnoses is the age and genetic heritage and the treatment is to stop sports and go for a quiet life style
I am now 49 and the last day I remember without pain was when I got my surgery and was under anaesthesia. I reject the idea to live without moving.”
Marta
Switzerland
“I had been having severe cramps and sometimes pain even when I wasn't on my period but it was the worst on my period. My GP thought it was endometriosis but she was not allowed to diagnose me and could just help and push for me to see a specialist. I saw my first OBGYN, got a biopsy, and he hardly even acknowledged me when discussing the results and just said they were normal. He put me through this 3 times and after said the pain was all in the head nothing was wrong with me. A friend referred me to another OBGYN who diagnosed me after 15 years of pain.”
Carissa
Canada
“I have been living with sinus congestion, post nasal drips and excess mucus for years and years. So many Dr. visits and so many wrong diagnoses, I had to insist on seeing an ENT doctor.
Not taking my concerns seriously and blaming it all on nerves was the path every Dr. took. Finally at an ENT doctor taking a guess he diagnosed my acid reflux, which I had myself mentioned to my GP as I had researched my symptoms. After acupuncture and allergy specialist in different hospitals, now the new path took me to esophagoscopy, diet changes, different meds.”
Anonymous
“It’s been 8 years since I started to feel like something was wrong and I needed to look into it. After many years of being poked and prodded, tons of tests and medications, seeing specialists and multiple doctors, I still have yet to figure out what's going on and feel better. I have spent thousands of dollars and am past the point of being discouraged by the healthcare system.”
Kristen
Canada
“I went through menopause quite early, when I was 40. I had no idea what was wrong with me, hot flushes, not sleeping, violent rages, etc. Having 3 young children and working full time, it was pretty grim. After a battle with the GP my test results showed I was in the menopause but I was refused any treatment, I was considered too young. I ended up seeing a private specialist and received excellent treatment. I am very passionate about increasing awareness of menopause at work, at home and in the healthcare community.”
Lindsey
UK
“Kaboom, fear!! A small pinching in my underbelly meant it started again. If I were mountaineering, travelling, sleeping over at a friend after a party, I dreaded forgetting or losing my pain killers - all my life since youth. If I missed the timing to take them it would be too late, laying in child pose with unbearable cramping pain at home or on any toilet seat waiting 30 mins until the pain killers would kick in. Every - single - month. Meaning I would take too many pain killers too early for my whole life. Treatment for adenomyosis anyone?”
Anonymous
“After a year of trying for our first baby I was referred to our child hospital in fertility. I was told, ‘I will not help you if you don’t lose 50 lbs’. I was not referred to a nutritionist or dietician. I was not given any type of support. I was told to lose weight by stopping to eat cake and drink juice. I have gone through this process twice now and no one has ever asked me about my eating habits, my workouts or my past related to my weight. No doctor has ever looked past my weight because this requirement is not for me, it’s for them.”
Anonymous
Canada
“Growing up , my family and health professionals would tell me that great pain is part of being a woman. That painful periods, births and pregnancies are normal. I would hear of C-sections being performed while women were awake and how it is traumatising but encouraged to stay awake through the wonder of birth; how I would regret not staying awake during. When I got my IUD it was one of the most painful things I experienced. Painkillers did not help and I had to pay myself for anaesthesia. Pain traumatised me for life and into not wanting children”
Jelena
Switzerland
“At 41 years old I was diagnosed with ADHD. During my whole life I had serious struggles with my emotions, intrusive thoughts and social failures. During my childhood my mind was half present, and because of that I suffered bullying and loneliness. But I was a girl, and girls didn’t have ADHD, just boys. I look back and I feel sadness for my younger self. If I had received medication before, my life could be better. But now, my fight to reach treatment still goes on, but my head is quiet and my heart calm. It is another level of happiness.”
Lorena
Chile
A note to our readers
This website contains personal views of healthcare experiences encountered by women. The stories collected by Roche in relation to My Story For Change are intended to bring awareness to women’s healthcare experiences. The views and opinions expressed by the authors of the stories are their own and do not represent the views or opinions of Roche. Roche does not make any representation or warranty with respect to the accuracy of the stories displayed on this website. The stories shared are not intended to be a substitute for professional medical advice, diagnosis or treatment. If you have concerns or questions regarding your health and wellbeing, please get in touch with a healthcare professional and do not disregard professional medical advice or delay in accessing it because of the content of this website. Moreover, some of the personal stories may be upsetting or triggering. Some of the content includes mentions of childbirth, miscarriage, abortion, death, illness, mental health, and/or abuse.
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