Giorgia Soleri speech made on the 13th of November 2021 in Rome about vulvodinia in a convention named "Vulvodinia e Neuropatia del pudendo: un dolore senza voce"
(video of the speech with Brazilian subtitles)
Translation of the speech in english:
"The year in which I started feeling pain was important for me. It coincided in a terrifying way with some of the experiences that changed who I am.
It was the year in which I started working, the year of my first tattoo, the year of my first love and the discovery of sex. I was 16 years old and everything was new and incomprehensible.
From then, making the first unsure steps of a teenager to discover the world that was distant from the familiar dimensions, I was always accompanied by pain that acted like a shadow. There were years where I woke up in pain, I ate in pain, I went to school (when I could go) in pain, I worked in pain, I went to bed in pain.
Most nights I could not sleep due to the pain. It was my most devoted partner. Quiet but constantly present, obsessive and possessive. It was enough to distance everything and everyone, just like a classic toxic relationship.
I was told everything, that I was crazy, that I was anxious, that I was stressed, that I was a liar, that I invented symptoms so as to not have sex most times, that I whined about everything and anything.
Many times I started believing it and to reconsider the pain, that had no name and so solution, and that was and indistinguishable part of me: Giorgia and the pain, the pain and Giorgia, one united thing.
In the meantime, it got worse and it became unbearable. I spent nights sitting on the bidet, spilling a drop of urine soaked in blood, that tore me apart up to my stomach. I used to go to bed exhausted, hoping not to wake up in the morning because that was not a life worth living.
I opted out of walks, of going out, of clubs and of nights out, frequently declining going out at the last minute due to the desperation. I can't recall how many things I have lost due to pain. I was seen by dozens of specialists. And was recovered in dozens of hospitals. I passed out on the streets and vomited, hoping to throw up the pain away. 8 long years have passed since that day. I have grown, I have changed, I have solved many things about me and have messed up some things even more. I moved through 3 houses and 2 cities.
In my life numerous people have come and gone. Some of them are still present today, but the pain was always there, mute, stubborn, tenacious.. I had to constantly face the pain, without being able to distract myself with anything, so I decided it was enough. Three days ago, after long months of waiting, this pain has taken a name. Mote than one actually, Vulvodinia, contracture of the pelvic floor and prudencial neuralgia (also known as chronic pelvic pain). For many, the diagnosis is a condemnation. For me it was inexplicably liberating.
Knowing that this suffering not only has a name, but also therapy, and knowing that other people suffered just like me and could understand me, has thrown me out of the glass box made of solitude and disillusions in which I lived for quite some time. I cried tears of happiness. I cannot remember anything so powerful in my life.
I left the medical office with a very heavy diagnosis, but I was as light as a feather.
I know this will not be an easy path, that some days will be worse, that I will want to give up. I will ask myself, "who made me do it?", "why me?".
And will only want to bash my head againt the wall. But this path is not a place to settle for what happens by ignoring my potential shadowed by the suffering. Now I know where to go, I have the instruments to get there, and finally, I am not alone anymore. I do not know if I'll ever heal, but something is sure. When you look the monster in the eyes it becomes a lot less scary.
I wrote those words in the end of September of 2020, a few days after receiving my first diagnosis. I think this indicates the suffering, the solitude I was catapulted into for 8 long years.
Although the experiences are subjective and personal, those related to vulvodinia and chronic pelvic pain have common points with each other: the obstacles one faces before receiving a diagnosis, the years lost, the forced abandonment and isolation, the difficulty (most times impossibility) to economically sustain the cures, the lack of empathy from most of the medical staff in understanding the pain that caused a great social taboo, and the burning, tearing and ferocious pain.
These words indicate the importance of a diagnosis for this invisible pain. Even though for those who have it, it isn't invisible at all but a turning point for those who suffer from it.
Due to this, many of us have choose to lose out privacy, putting ones pain at the mercy of anyone to ask for a loud voice and social, political, medical and economical recognition of a disease that is still undervalued, highly disabling, present and real.
Article 23 of the Constituition says that every individual has the right to good health.
For these reason, I am here asking why is our government not recognizing us as individuals? "
If you want to see the post and the speech go to Giorgias Instagram.
Leave a like and a comforting comment on her post if you can, it's hard to speak about such personal issues and traumas publicly but she is doing for the sake of bringing visibility to an under researched illness that a lot of women have and are not believed and/or humiliated by doctors and people around them.
