Esmeralda, 24
She decided to bare her experience with vulvodinia to break the silence and testify that a path to cure is possible. Esmeralda Moretti, aphilosophy student is known to the vast TikTok and Instagram audience as a philosophy, social ethics, and bioethics influencer under the nickname @esme_psithurisma.
What convinced you to “voice your pain”?
There are several reasons. The first and most urgent is the realization that my pain is also that of so many other women. Speaking out serves to keep attention on a disease that, in Italy, afflicts one in seven women, yet is too often neglected or even denied by the health care system. Intervention is almost always left to the personal, even financial, management of the patient, despite the fact that theWorld Health Organization recognizes it as a chronic disabling condition and should be included in the Essential Levels of Care (LEA).
And the other, more personal reason?
I wanted to testify with my story that it is possible to get out of this suffering. The path is long and difficult, but the results are concrete. Sharing my experience offers insights not only for reflection, but more importantly for action for those who are still searching for a diagnosis and a cure.
Your story is unfortunately the story of many women who come to diagnosis late. How did your ordeal begin?
It all started in the summer of 2021. I began to have burning and discomfort in the intimate area that lingered. The gynecologist at the time simply treated the problem with antibiotics. And she was not the only one, as no less than three other gynecologists, while having me swabbed, kept offering me the same treatment.
And when did you begin to feel that your suffering was being minimized or attributed to something else?
In many cases, the professionals suggested in a direct way that it was all about an anxiety problem. The physical pain I was experiencing was so intense that it prevented me from sitting, wearing certain items of clothing, and, of course, having sexual intercourse.
One of the most burning points of vulvodinia is precisely the attribution of physical suffering to a purely psychological issue. What impact did it have on you to be told that it was “all in your head”?
A huge impact. The gynecologist on duty attributed my pain and difficulties in relationships to my agitation or my relationship with my boyfriend. To be told these things, repeated by multiple specialists by the way, when the pain was getting worse all the time and limiting your life, well, to feel crazy is to say the least.
When and how did you finally come to name this suffering?
During the period when I was still navigating in the dark, I found an affinity with my suffering in the stories that many women were posting on Instagram. Finally, a year after the first manifestations, I was able to locate a specialized center. There, a team of professionals named my pain: vulvodinia and pelvic floor hypertone. And naming the pain is the necessary step to be able to overcome it.
Once you got the diagnosis, what was the path you had to take?
It was a long and very difficult treatment path. I had to take medication, have pelvic floor rehabilitation sessions, and follow a targeted diet. I also had to give up, or limit, many of my habits, such as sports. It cost me a lot of effort, but the strength to continue came from the fact that after so much pain-so bad that some days I couldn’t even get out of bed-I was beginning to feel better.
Preciselybecause the pain was becoming less all-consuming, you decided to share your story. What is the most important message you want to send to other women and, most importantly, to institutions?
To women I want to say that from a seemingly endless spiral of suffering you can get out. vulvodinia is not an invisible disease, but a real and true suffering that deserves to be embraced. I was lucky to have those who stood by me, but institutions must do their part.
Are you referring to the bill to recognize vulvodinia?
Exactly. The bill that aims to recognize it as a disabling disease cannot be forgotten. It needs to regain strength to become not only hope, but certainty of cure for all those women who cannot cope with prolonged treatments that impose an exorbitant economic outlay.
Esmeralda, what is the action each person can take right now?
Continue to talk about vulvodinia and make noise. Everyone can give voice through their story to those still living in silence and suffering.