Personal Stories

I remember exactly my first painful period, it happened already when I was 15 years old. Even right after my first period at the age of 12, I often fainted as I lost too much blood.

Everyone around me said that it could not be that bad and I am just overreacting a normal period every woman is suffering from. There were some days I could barely stand up, let alone going to school. Then I started to use contraceptives, and my pain went away for a while. Then it returned, they changed the pill to another one, it went away, and this cycle was repeated for many years.

Based on all my symptoms and education in biology, I had already suspected that I probably had endometriosis. I shared my concerns with my physicians, but they ignored it every time. This is how I lived during 15 years – undiagnosed and untreated endometriosis was such an important part of my life, that I had to plan everything around the days of my period.

I am a very positive person and I survived all the hardship in my life with endless hope – however, I developed severe anxiety waiting for my periods and all the other symptoms I could never predict. My endometriosis followed me during my high school, bachelor’s, and master’s studies. It got unbearable by the time I was a Ph.D. student (2017), when I moved to Spain from Hungary. I had such painful periods that I seriously thought I was going to die, and no medication was helpful.

I started to have pain around the days of ovulation as well. By this time I lost my faith in medical professionals, so I had severe anxiety about going to check it out (again).

I finally found the courage to give trust to the Spanish healthcare system, and got an appointment in December 2019. The physician who worked in the private system immediately suggested deep-infiltrating endometriosis. I felt so heard and seen, and so sad at the same time. He referred me to an endometriosis specialist in the public healthcare system, whom I visited in February 2020. He immediately confirmed the suspicion of the other physician and referred me to have an MRI. I got the appointment for March 2020. Then we all know what happened: all the medical appointments were canceled due to the COVID-19 pandemic.

I had to wait another six months until September 2020. The MRI undoubtedly showed deep-infiltrating stage 4 endometriosis, which only occurs in 1% of the patients. All my abdominal organs were covered with the disease. At my next appointment, the endometriosis specialist did not understand how it is possible that I did not get diagnosed before.

My endometriosis was so advanced that it was not only visible on an MRI, but also with just eyes. He invited several medical students and residents to the room to show them my disease – he said he has never seen such an advanced case during his practice. This is what 15 years of suffering and lack of diagnosis did to me. They appointed me to urgent surgery which they did in November 2020.

They did an amazing job – they could remove all the endometrial-like tissue, but the surgery was seven hours long and it was followed by a two months long recovery. They had to cut a part of my intestine out, cut my vagina entirely vertically, and remove the tissue on all my other organs in my abdomen.

I had to stay in the hospital for ten days, and due to the pandemic, no one, including my husband, could visit me. I was so hopeless and depressed, and could not see the light at the end of the tunnel.

After I started recovering, I started to be so grateful for the excellent healthcare I received – the majority of women even if they get surgery at the end, often continue to have symptoms as there are very few surgeons in the world who can perform excision surgery. Although endometriosis is a chronic disease and there is no treatment so far, my diagnosis changed my life.

Now my disease is under control, and thanks to the amazing work the surgeons did, I even got pregnant with my baby girl, who is due in November 2023. I decided that this should not happen to anyone else, if it depends on me – no woman should suffer for so many years being ignored and gaslighted.

We EndoWarriors are extremely strong (without asking for it), and we live successful and functional lives despite this cloud hanging over us all the time. I made it my mission to do research on endometriosis, and to avoid such long waiting times to receive diagnosis and treatment.

From menarche at age 12, my period had never been normal. It would either not come at all or be extremely heavy. As a young adolescent, I was often too ashamed to talk about my symptoms to any doctors and when I did I was told that everything was normal and that my cycle would “normalize as I get older.” That could not have been farther from the truth.

One day, during my freshman fall in 2019, I woke up feeling like my organs were wrapped in barbed wire. There was a weird, intense muscle strain in my right, upper abdomen. I thought it was an injury or just a case of extreme bloating. When I brought my concerns to doctors, both at Yale and back home in Austria, I was told there was nothing wrong. But how could that be when my intestines, right rib cage, uterus, and bladder all felt like they were being punctured by thousands of little spikes? 

One morning, around 2 weeks after the pain started, I woke up in a pool of sweat. My head hurt and my shoulder felt dislocated. There was blood violently pooling between my legs — more intensely than I had experienced during the seven years that I had been menstruating. This was not a normal period. And yet, when I returned to the doctor, I was told that everything was normal and that I should just follow up within the next few months. But the pain returned  during the second half of my menstrual cycle every month, magically disappearing on the third day of my period and coming back after ovulation. 

Then the COVID-19 pandemic hit. The world stood still but the pain never ceased.

Life with chronic pain is hard. Not having people believe you is harder. Days, weeks, months, and years passed by without any answers. Everyone told me I was okay: my friends joked that I was a hypochondriac, the grumpy doctor in Austria who performed an ultrasound on me assured me that “my pain would be gone with my next menstrual cycle,” my mom assumed my pain was just a product of academic stress at Yale.

I wanted to hold onto the idea of being fine. I put on a smile when I sat in class, when I walked through campus, when I ate lunch with friends. Underneath, I couldn’t help wondering: Did I just permanently tear a few muscles? Am I just extremely bloated? Am I crazy? Am I making this up? I asked myself all of this as I increasingly started to organize my life around my menstrual cycle. Since the world around me seemed to provide no answers to my pain, I found myself turning to the Internet. When I looked up my symptoms online, the Internet told me I might have endometriosis, a chronic disease characterized by the growth of tissue that resembles the lining of the uterus on organs outside of the uterus, causing cyclic and chronic pain, severe digestive and urinary issues, fatigue, pain during sexual intercourse, infertility, and a host of other symptoms. While my symptoms seem to match all those of endometriosis, when I went to the doctor’s office, I was told I was “crazy” and that everything was normal.

For years, I forced myself to believe so. I wanted to trust my doctors and, most importantly, I wanted everything to be okay despite the fact that, for two years, my symptoms never stalled. For two years, I planned my life around my menstrual cycle, doing as much school work as possible during the first half of my cycle, so that I had less to do during the two painful weeks. Life was not easy and I did not have a source to attribute my pain to — apart from what the Internet had told me. Somehow I pushed through first year, sophomore year, and the first half of junior year, putting on a smile when I was in pain and believing the doctors who told me it was all in my head. Multiple times, while I was still at Yale, I had to call the ambulance because I thought I was dying. I knew something was wrong. But when I went to Yale Health, all my tests and scans came back normal. 

After Thanksgiving Break of 2021 the pain intensified dramatically. It felt like someone was stabbing me between my ribs incessantly, tearing up my large intestine, wringing barbed wire around my uterus, and pushing it against my bladder all at once. Even with strong painkillers, the pain didn’t subside. For years, I had always persevered, somehow managing to cover up the pain with a cocktail of smiles and pain-meds. The pain was so bad that I could barely get out of bed, walk, or eat between January and May 2022. By March, I could no longer keep up the façade and ended up taking medical leave.

Even after dozens of blood tests and ultrasounds, no doctor could give me an answer. When I raised my suspicion of endometriosis to doctors, almost none of them knew anything about the condition, with some doctors telling me that “they do not know anything about women’s diseases,” while others were utterly shocked by the fact that I had done my own research. Yale did not offer me any financial assistance with my disease or the chance to go to any provider outside of Yale Health, forcing me to return to Austria. A total of around a dozen doctors, both at Yale Health and back at home in Austria, told me that it was “all just in my head,”  that I was a “drama queen,” that I had a “low pain tolerance,”  that I was not mentally equipped to deal with the stress at Yale. One doctor told me that I was a “psychopath,” adding that “I speak too much for a woman.” Every Yale doctor that I saw either disbelieved or misdiagnosed me. Yale claims to help us out if we ask, but for me that was not the case. 

While I was no longer able to pretend that everything was perfect, I was determined that I would not succumb myself to the pain without a diagnosis. Immediately after I had returned to Austria in March 2022, I found a gynecologist in Vienna who believed my pain and had my first surgery with him in May 2022. Unfortunately, he missed endometriosis lesions on several organs during surgery and my symptoms only improved marginally. I felt defeated and frustrated that my pain was still debilitating most of the time. So I continued to reach out to different doctors. 

In September 2022, I flew to Romania for surgery with an excision expert, who found endometriosis in eight different organs: on both my ovaries, my ureters, my rectum, my vagina, my cervix, my utero-sacral ligaments, and my pouch of Douglas. While the surgery was quite extensive, it went smoothly and I was released from hospital after two days, allowing me to spend time with my best friend, who had accompanied me to Romania and whose family lives in Bucharest.

Since the surgery, my quality of life has dramatically increased, but, unfortunately, even this surgeon missed some of the endometriosis on my diaphragm, causing me to still have pain between my ribs. Ironically enough, I had become so well-versed in endometriosis that I was the one who spotted the lesion that he missed on the footage of my surgery. Contrary to most doctors, he admitted his mistakes after looking at the footage himself, but I did not have the time, money, or willpower to go through yet another surgery before my return to Yale in January 2023. 

Although I am now back at Yale and no longer in debilitating pain, my struggle with endometriosis is far from over. Endometriosis may not have taken my life, but it took most of the things that I deeply cherished: my studies at Yale, my hobbies, my relationship, and all my savings, among a host of other things. The medical system failed me, but I am determined to help fix it. 

I remember my first period very clearly, because I got very scared, but not because of blood. The excruciating pain came out of nowhere and I fainted.

After my first period this happened every single month, I would pass out from pain in school, on the way to school, later in university, work. My mom took me to many different doctors, but they all said that period pain even if it’s that intense is very normal, some said that after I’ll give birth I’ll get better.

I was 14 years old. I normalized my pain, lived with it and just thought every woman goes through this experience every month or maybe I’m just too sensitive.

Fast forward to now and my wonderful gynecologist asked me a simple question during yearly checkup ‘how are you?’. I said I’m fine, obviously it hurts a lot every month and I just don’t leave home for 3 days, but it’s very normal. And she said it’s not normal and for the first time I heard the word ‘endometriosis’.

She sent me to an endometriosis specialist who confirmed my diagnosis, but unfortunately didn’t really explain anything to me. I went to get a second opinion from a famous doctor, who took one hour to explain what endometriosis is, and what it does to my body, also he diagnosed me with adenomyosis.

For the first time after 20 years of suffering and countless doctor visits I felt relieved and heard. I know there is no treatment, but there are various options on how to treat the symptoms and now I can  be in charge of my body without others dismissing my pain.

How old were you when you first experienced symptoms of endometriosis?

32 years old.

What were your initial symptoms, and how did they progress over time?

Sharp abdominal pain at a single point, later frequent mild, varied pain on the entire right side, with two more severe flare-ups over ten months that required emergency room visits due to suspected appendicitis.

How long did it take for you to receive a formal diagnosis of endometriosis?

11 months.

Can you describe your experience with different diagnostic methods or tests for endometriosis?

Two different MRI scans were performed, but they did not recognize the condition. Instead, a misdiagnosis of subacute adnexitis was made. Numerous ultrasound examinations were done, and only one doctor identified my two DIE nodules using ultrasound.

How has endometriosis impacted your daily life, relationships, and overall well-being?

The frequent pain, which was often mild but caused constant anxiety, especially alongside the series of negative tests. Fatigue, likely a symptom, affected my relationship life, and the persistent awareness of pain negatively impacted my mental state.

How do you cope with the emotional and mental challenges that come with living with endometriosis?

So far, I have not taken any specific steps in this direction. The daily demands give me less opportunity to address this separately at the moment.

Have you faced any stigma surrounding endometriosis, and if so, how do you address them?

I had negative experiences with doctors; often, they treated endometriosis as a rare, exotic disease, making me feel it was unlikely I had it and that my pain wasn’t severe enough to truly suffer from this condition. One endometriosis specialist even tried to attribute my complaints to psychosomatic pain.

What specific improvements or advancements would you like to see from researchers and healthcare professionals to better support and treat women living with endometriosis?

Doctors could consider this disease sooner in cases of abdominal pain. Those evaluating MRI images could have better awareness of the signs of endometriosis (in hindsight, it was clear on my MRI that the uterus and colon were fused, and adenomyosis was also visible, though the diagnostician mistakenly thought they were small fibroids).