Patient
Experiences

My name is Constança, I’m from Barcelona, and I’m 23 years old. I was diagnosed with PCOS at 16, after years of showing what I now recognize as clear symptoms —mainly hirsutism and irregular cycles—.

The doctors that diagnosed me never bothered to explain what PCOS was: they only said that I might have difficulty getting pregnant in the future, and prescribed me the contraceptive pill. They didn’t give my PCOS any importance, so why would I? As a teenager, I trusted that my doctors knew better. Even when my symptoms didn’t completely go away after years of taking the pill, I trusted their professional advice, and I kept on taking it.

Coincidentally, I decided to study a double Bachelor’s degree in Pharmacy and Human Nutrition and Dietetics. My studies were the catalyzer through which I realized the poor quality of the medical care I received. I understood that PCOS was much more than a “difficulty getting pregnant”. PCOS impacts our physical and mental health in a myriad of ways, and the only “treatment” option that we are given is the contraceptive pill.

I found this unacceptable.

But… what could I do? I was only 21.

A hot autumn day, I came across a blue and pink leaflet that caught my attention among many others in the same stand. I could not believe my eyes as I quickly read through it: Spiomet4Health was looking for volunteer participants, and I immediately knew that I wanted to be part of it. I was immensely happy to see that someone was trying to give us an effective, evidence-based alternative treatment. Now that I have finished my journey in the study, I see Spiomet4Health as a contribution I made as a PCOS patient towards advancing research in this field.

However, women’s health is still not given the attention it deserves, not even by healthcare professionals. I have wanted to change this for years. Finally, I decided to speak up, and I joined my voice to that of one of my closest friends, who is also a pharmacist and an adenomyosis patient.

Together, we created Period Dramas Podcast (@perioddramaspod), a feminist health dissemination platform in which we talk about women’s health in an approachable manner —we like to say it is a “girl talk”—, so that all women feel empowered to learn about their health and to demand better treatment for themselves.

Because women’s health matters.

My name is Emelyne, I am French and I am 33 years old.
My story with PCOS started early, as I was lucky enough to be diagnosed when I was 17 years old.

Besides not having my period, I had a myriad of symptoms such as weight gain, hair loss, and hirsutism (which was the start of a long battle). At first, I was blamed like many patients to secretly snack, and told that it was nothing and I just had to take the pill to regulate my symptoms.

PCOS had an effect on my life at an early age: unable to cope with all these symptoms, I stopped dancing and competing in gymnastics, which I loved very much. The thing is, back in 2005 there were not much resources and young patients like me were lost with the whole diagnosis.

It’s not until later in life that I understood I had to fully accept that PCOS was something to be taken seriously and, most importantly, I had to adjust to live with it.
Back in 2012, after another cycle of weight loss and gain, and another massive hair loss episode, I realized I had to make changes in my lifestyle to thrive with PCOS: reduce stress, sleep better, eat whole foods, exercise again (my love story with running started right there!) and accept that this was a part of me that I could not choose to ignore.

Today, I can say I am in a much better place and living my best life despite my PCOS. First, I discovered that I love running and completed 3 marathons; some of the best memories of my life. Back when I was diagnosed I promised myself that I would do something to help the other patients one day and I do now as Vice President of Esp’Opk, a French association for women diagnosed with PCOS. I get many opportunities to meet other patients, provide them support, create content to help them live with PCOS through the association’s blog or Instagram account and organize events to get more people to know about PCOS. It’s most definitely my legacy and I find it to be incredibly rewarding.

I am also very proud to be taking part into the SPIOMET4HEALTH study this year, as I get to help further by being an advocate and contributing to a better life with this disease.

I’m Alexandra, I’m 20 years old and I was diagnosed with PCOS at 14/15 years old.
It all started because I had very irregular menstruations and, whenever I had them, on the first day my ovaries would hurt a lot and my abdomen would swell. After some tests and analysis I was diagnosed with PCOS.

The most shocking thing for me was when the doctor told me that I might had trouble getting pregnant in the future. Throughout the visit I thought I was getting along…But when I got out of the car and arrived home I immediately started crying. It wasn’t only the problem of infertility, but also everything that living with this syndrome entailed: controlling weight, hair growth, my mood, etc.

Being a teenager and living with this syndrome can be a bit difficult at first. In my case, I’m a very insecure person and I lived for many years worried about my image, my physique and how everything I ate or everything I did affected this.

It’s been about 5/6 years and during this time I’ve realized that I can’t change the fact that I have this syndrome. You have to learn to accept it and move on, as long as you are well.
Before I thought it would affect me more in my daily life, but in the end I saw that it didn’t. I have my low days and my high days, like anyone else who is healthy or living with another illness.

To this day my menstruation comes every month, the hair growth is not excessive and I’m fine, with my body, my mind and I know that what happens to me has a name and a surname.

“Since I was diagnosed with PCOS, I’ve never felt as well cared for as I do now, thanks to the Spiomet4health clinical trial”

Paula Romero is participating in the Spiomet4health clinical trial on Polycystic Ovary Syndrome (PCOS) at the Hospital Sant Joan de Déu (Barcelona, Spain).

She talks about her experience in the Spiomet4health clinical trial, in which she says she feels listened to and accompanied at all times by the professionals leading the study.

(ES) “Desde que me diagnosticaron SOP, nunca me había sentido tan bien atendida como ahora, gracias al ensayo clínico Spiomet4health”

Paula Romero participa en el ensayo clínico Spiomet4health sobre el Síndrome de Ovario Poliquístico (SOP) en el Hospital Sant Joan de Déu (Barcelona, España).

La joven cuenta su experiencia en el ensayo clínico Spiomet4health, en el que comenta que se siente muy escuchada y acompañada en todo momento por parte de las profesionales que lideran el estudio.