Introduction
LEA, the Essential Levels of Care, are the benefits and services that the National Health Service is required to provide to all citizens, free of charge or by means of a co-payment, as a public service. However, this type of assistance is not guaranteed for all illnesses. There are many and often purely female diseases that have been defined, many times, as invisible. These are diseases that show no obvious external signs and are often difficult to recognise. Some of them, in fact, are discovered by exclusion, after a long list of other negative tests.
The invisible disease that we will make visible today, through Julia’s grande storiella, is really little known. You may have heard of endometriosis and vulvodynia. You are likely unfamiliar with vestibulodynia: a form of vulvodynia that does not, however, affect the entire vulva area, but concentrates a sharp, burning pain in the area of the vestibule, the area surrounding the vagina.
The fact that there is no certain data on how many women in Italy suffer from makes one realise how far behind we are in researching and mapping the phenomenon. One thing is certain, however, and this concerns all invisible diseases: the very high cost, in economic terms, of their treatment: https://www.lasvolta.it/11646/malattie-invisibili-il-costo-di-curarsi.
Lastly, another element must be made explicit: these are diseases that until now have not only been considered invisible but often imaginary. The impossibility of diagnosis has always been understood more as the fault of the patient and not of a deficiency on the part of traditional medicine. Julia’s grande storiella is a demonstration of how this has been the case, wrongly, for a long time and how it still persists today.
Julia’s grande storiella
This grande storiella was recorded on the 9th of March 2024
My name is Julia Magrone, I am 23 years old and I live in Milan. I am a model and influencer. My grande storiella stems from a somewhat gynecologically complex situation that emerged about three years ago. After a few months, almost a year, I got the diagnosis: I have vestibulodynia. It is a disease that affects the nerve endings of the vulva: it can therefore only affect women. I discovered I had it after several months of research and seemingly unmotivated pain, especially during sexual relations.
The first signal
The sign that something in my body was not working so well manifested itself, for the first time, with a new and never before experienced pain during sexual intercourse. It was the summer of 2021, I was on holiday with my boyfriend when, from one day to the next, I started to have very strong pains. At first, I thought they were due to cystitis: I was in Greece, I was eating slightly spicy food and it seemed natural to think it was an infection. Even the doctors I consulted, both in Greece and Italy, once I was back, advised me to take various supplements and antibiotics. So, for over six months, I took these antibiotics locally.
During that time, I hoped that these pains and discomforts would disappear. Yet, I noticed that the more I followed the therapy I was given, the more these pains increased. I could not understand why they were having the opposite effect to the one I wanted. More time passed and nothing changed. After a few months, in December, the pains were really excruciating during intercourse: I remember I was on holiday in France, with my fiancé, we had been engaged for six months, and that was really the most difficult and painful time. And I started, from those days, to be afraid of the sexual act itself because I associated it with these terrible pains: as if they were cuts, which caused a shooting burning.
Misunderstandings
The bad thing is that many doctors at that stage, so before the diagnosis, gave me advice that was embarrassing and only made me nervous: “Relax. Have a glass of wine. Try to live in a more carefree way”. Once, in front of my then boyfriend, a doctor told me that maybe the problem was the partner and that I should try to change him….
The more time passed, the more nervous I became and I lost all trust in them. I was the one who felt those pains, I was the one who demanded an accurate diagnosis and I was the one who was not satisfied with what they had told me up to then. Those pains were not psychological or attributable to an unhealthy relationship with a partner. I knew I had a problem that no one seemed to take seriously. On the contrary, once I discovered the diagnosis, I would later learn that not only could antibiotics have no effect, but taking them had only caused me more pain. It was the same doctor who told me that the antibiotic contained substances that further inflamed the pudendal nerve, which was the part that was already inflamed. So, at the very time I was taking the antibiotic, I was making my situation worse.
The importance of grandi storielle
We still have to get to the diagnosis. We have now reached the point in the story where I am taking medication, including antibiotics, not knowing that I am hurting myself. After a few months, I was lucky enough to meet a girl who worked in the fashion industry. We introduced ourselves, got to know each other and each told her own story. Amazingly, she had also experienced something very similar to what I went through. She was the one who referred me to a specialised centre, here in Milan, simply after listening to my story and realising that there were points in common with hers.
So, I was diagnosed with vestibulodynia.
I was very lucky because I was diagnosed around March 2022, despite the average diagnostic delay being 7-8 years in Italy. I will always be grateful to the girl I met who, without knowing it, changed my life. It is also for this reason that I try in every way to spread the word, to make my story known.
Some women, some young, some adults and already mothers, have discovered they have the disease, also thanks to my testimony. I try to raise a lot of awareness on social media and there have been occasions when people who followed me have decided to go to a specialised centre to finally get a diagnosis. The fact, however, that in 2024 the best method for receiving this diagnosis is still word of mouth seems crazy to me.
The illness
As far as the physical difficulties are concerned, I was more or less lucky as I identified the problem early on. Since I did not have a ten-year diagnostic delay and since there is no recognised treatment for all women by the health system, I simply started to take some measures under the advice of my doctor. The treatments, especially the first ones, were not always effective: I had been advised to take antidepressants, which generally act both orally and locally. However, these are very subjective in their reaction, depending on one’s body’s reaction. In my case, my body had a lot of side effects, mainly drowsiness and bloating.
Things then changed in the last six months, where I started to have other discomforts even during daily life. The pain was no longer a consequence of the sexual act but could occur every day, with those very strong twinges, as if I were being pierced by several pins. For example, I used to be able to stand on my heels a lot, which was often required for my work, without it having any effect, whereas now standing on them even for a short time causes me pain. Or it is highly inadvisable to drink wine: when I decide to take a glass, I know that the next day I will have burns and pains. So it is certainly a condition that influences the way you live. Another example: I am a great sportswoman, some things, like doing the exercise bike, are now totally excluded from my workouts. I have had testimony from women who can no longer do long walks. It is very subjective; it depends on your medical history and how your body reacts.
Compromises
As far as I can, I try not to limit myself and change my lifestyle, also to avoid stopping living. So many things I do anyway, knowing that they will have repercussions on my body. On the other hand, I know that many women prefer not to do them and limit themselves, and it may even be right that way.
As we are talking now, I am doing it wrong: I should not, for example, keep my legs crossed. Every now and then, however, I like to be carefree even though I am always aware of the possible consequences.
Other people’s grandi storielle
One of the main issues is that it receives little attention, almost not at all. I have known storiesof women who experienced severe pain during intercourse, gave birth in terrible pain without ever having been diagnosed, without knowing that they could get help: without knowing that this condition is not normal.
However, it was not their fault. They were probably never referred to a specialist or, even worse, could not afford such treatment. I paid hundreds and hundreds of euros between visits and treatment. For the first year and a half I had a very expensive therapy of about 80 eurosper session three times a week: we are talking about a thousand euros a month.
Many choose not to treat themselves. There is the case of a girl I spoke to recently, who decided to procrastinate her start of studies at university because she had to choose between starting treatment or using that money to pay her fees and academic books.
The mind
I was probably very frustrated because I could not give myself answers and nobody fully believed my pain. If a doctor tells you that it is all a mental issue, you also start to convince yourself that you are “strange”, as do the people around you. I became very frustrated because I could not understand what, in my brain, was not working in relation to sexuality.
At an early stage I really sought support from my partner. I was perhaps mistaken in clinging more to him than how I felt. Suddenly I felt very fragile, very weakened even psychologically. This started to undermine my whole relationship with sexuality in general, leading me into that long period of “non-answers”. Then came the diagnosis: I think that was one of the best days of my life.
That day was memorable: I knew I was sick and now there was someone to prove me right. My problem had a name and it was not related to my head: vestibulodynia. Perfect. I thought, then, that everything would be downhill from then on. But no, it was not. A long phase of looking for cures began, where I was wrong to look for immediate answers. I thought that after the first few prescriptions I would have solved it. I thought that in no time the problem would be gone. Instead, the process was very long. And the fact that I had such high expectations led me to worsen my psychological situation. I was investing money to treat myself; I knew exactly what the problem was, and yet things kept not changing. Antidepressants and antibiotics had major effects on my body, including perennial drowsiness and tiredness. At such a delicate stage of life, such as the end of university and graduation, I lived sleepy and unnerved towards life. I was completely different, dull and very touchy: at times almost mean and at times very fragile.
A new phase
I got my own house, ended a relationship with my boyfriend of the time. I therefore embraced the significant challenge of living independently and from there I somewhat rebuilt my life. I started to feel slightly better: towards the middle of the year, I stopped taking antidepressants and it took me a few months to get back to the person I used to be. But I can say that this is the turning point: 2024.
I am finally taking my life back in my hands: in terms of mood, I am back to my old self and I have started going to therapy, to a psychologist. This choice has totally changed my life, for the better. I am really finding the right balance: accepting the disease and also trying to live despite it. One has to find an approach that gives the right serenity. In this sense, going to therapy is helping me a lot, to have the tools so that I can find my balance on my own. I have only been going for a few months but I feel I have already changed for the better some of the ways I approach situations, anxiety, pain, and so many situations that are compromised or in any case related to the illness.
Train strike and a surprise
This story will be particularly interesting: for the first time, it is based on actual events.
I was in the pedestrian area between the Regina Margherita bridge and Piazza Vittorio, in Turin, when I realised that I would not be able to go to Milan the next day. The train strike did not allow me to finally meet up with Julia, with whom I had been in touch and whose messages made me think she could really tell me a grande storiella.
I left the next day. It was raining and my flowered umbrella was resting comfortably on a seat on the regional train, where I had forgotten it. I looked for a bar and waited for Julia. The waiters kept staring at me, they must have thought: “Is she going in or not?”. Time passed, yet there was no sign of Julia—only an ambiguous message. Ironically, her delay marked the end of another, a contradiction you will soon come to understand.
When Julia arrives, she has a beaming smile, she is overjoyed and also a little bit on edge. Still breathing heavily, not sure whether from the rush to catch the metro or from excitement, she immediately makes an announcement: “Today, after seven fucking years of amenorrhoea, my period is back! I swear, I can’t believe it. For me it was the best news, I think, in the last ten years! I always had a very irregular cycle in my teens. Since I started suffering from a major eating disorder, it had disappeared completely. And it hasn’t returned since then. It didn’t return even when I gained weight again, not even when I regained my balance. Surely the situation was psyche-related: there was something stuck in my brain and stressful situations, heavy situations and of course part of what I told you. I said that this is my year. Taking my life back in my hands, and also with the help of therapy, I am more serene and also determined in my work. This news shocked me and so my delay was due to my being totally immobilized, incredulous, stunned with emotion: this is a day I will not forget”. I do not believe much in chance. The fact that the telling of the grande storiella should have happened yesterday and instead happens today, with this news, carries within it something that I have decided not to define. I leave this feeling as the only thing that must remain invisible and undefined in this whole story.
Morena Bergia
Grandi Storielle 🖌📚 