Florencia Genovart this Tuesday will go through her eighth operation, within a three-year journey that is becoming eternal. Suffers deep endometriosis, the little studied “nutcracker syndrome” and suffers from unbearable pain that does not stop and has been bedridden since September 2018.
His only hope is in Germany, but he needs a large amount of money with which it does not have and that it is impossible to reunite.
In an hour of dialogue with Clarion, the 27-year-old young woman from San Juan who until she was 24 “danced and did not stop for a minute” while preparing the still unfinished thesis to become a geologist, told her story.
“It doesn’t allow me to walk, or study, or anything, because the pain is there. I can’t sit down. No one imagines what it is. live 24 hours in pain for three years, “she said from her home in the City of Buenos Aires, where she is accompanied by her mother and an aunt.
Within hours of re-entering the operating room, she explained her state of mind, almost resigned: “The seven previous times I entered believing that it was healing. I entered the operating room smiling. believing that it was the last“.
“I tried every pain medication out there. Morphine does nothing to me. I live in bed, with heat and electrodes now, because I cannot sit or stand. If I do, obviously the pain shoots me terribly, “he clarified.
Florence in her happy years, before the pain, when she danced
Pain, zero hour
Better to start with zero day of pain. It was in San Juan, where Florencia wants to return to hug her loved ones, but when she can stay upright.
“My menstruation came on a Monday with a lot of pain, as always. But that time my belly swelled after five days, with indescribable pain. I endured three days, I went to the guard and they told me I had nothing. The following Monday I came in crying and they admitted me, but they told me again that I had nothing, “began his story.
It was in September 2018. The following month, after several more rudeness, decided to operate it for the first time. “They found two ruptured cysts, a strangulated tube, pelvic varices and two ‘mild’ foci of endometriosis,” he listed.
“After 15 days I was fine, but my period came again and to this day the pain never went away“she recalled, leaning back, in her testimony.
No medication could calm her. It was not until May 2019 that a doctor from San Juan was the first to have a first hit: the picture was compatible with a deep endometriosis which was finally proven on a first trip to Buenos Aires.
Endometriosis is a condition in which the tissue that normally lines the inside of the uterus grows outside the uterus, in places where it shouldn’t be. There is no cure for endometriosis, but treatment, well done, can help relieve symptoms.
In fact, Florence has militated in San Juan for a national endometriosis law, “to be taken as a chronic disease.”
“Doctors do not know, they tell you that the pain is normal, they treat you crazy. They get you off your feet, there are very few doctors who want to specialize in this. It does not enter my head that we have to fight for the law on a disease, “he was outraged.
Florencia campaigned for a national endiometriosis law
And he continued his story of ailments: “On August 20 I had surgery at the Italian Hospital, the doctor was terrible. I never recovered again“.
There was a third operation, on October 24, a neurosurgery: hypogastric plexus thermal injury. “It was a nerve block to help the pain, but the pain increased“.
Already in January 2020 she felt that no one at the Italian Hospital could help her: “They even told me that I had irritable bowel, and I I was dying“.
Two months later a specialist from the Naval Hospital, “the one who knows the most about endiometrosis”, hit the key and sent him back from San Juan to Florence.
“He told me ‘Flor, for me what you have is vascular, you have to do a flebotac (phlebotomography) ‘. I came by taxi because of the pandemic, 18 hours, doubled with pain, ”he recalled.
Florence’s swollen abdomen and the marks made by the electrodes to fight the pain
Rare and poorly studied disease
The problem is that whoever operated on her reported that the problem consisted of a double vena cava, when what Florence had (and has) is the strange and little studied “nutcracker syndrome”.
Having erred in the diagnosis, led to a new intervention that it didn’t pay off either.
“They gave me botox experimentally, but it paralyzed my bladder and bowel. I could not urinate. I had a tear in the vagina, it is not known if due to the force that I used to urinate or the surgery, I had catheterization, even today I have it intermittently. The pain never went away, “he explained his daily ailment.
The “nutcracker syndrome” is caused by a compression of the renal vein between the aorta and the superior mesenteric artery. This phenomenon results in hypertension of the left renal vein, varices in the left gonadal vein, and unilateral hematuria.
Once the real problem was detected, they changed their minds. Instead of embolizing her, they placed a stent in April of this year. And from there, a new mystery.
Despite the fact that Florencia did everything she could for her endometriosis and continues to be treated, and despite having taken the necessary step to improve the condition of her “nutcracker syndrome”, the pain keeps increasing day by day.
This Tuesday, the new intervention it will only be a test: “They are going to embolize my pelvic veins and they are going to look for some other pelvic leaks to see if it is the cause of the pain or the companion of the ‘nutcracker syndrome’. But it is proof.”
“Vascular compression syndromes are hardly studied, because there are very few cases in the world“he regrets every day.
He also told what the next step might have been: “What followed was a neurostimulator, but I don’t want a device to cover the painbut to know the cause of the pain. It is something complex, it goes behind the bone. “
That option ruled out, and with the inexhaustible strength of her 27 years, Florence only has her head in His only hope. And that light that you observe from afar is in Germany.
Florence’s dream is to be back on her feet and without pain
The expensive treatment and how to help
With no possibility of answers to what is happening to her, Florencia Genovart depends on only one option: traveling to Germany to undergo a study with the renowned doctor Thomas Scholbach, who “has created special software to diagnose all vascular compression syndromes. “
“He does a study of a minimum of two hours, from head to toe and in all positions. Has the answer to everything in vascular syndromes. Every day I write to him, “he praised the man who can reveal the mystery.
After a long struggle in which she did not always have the support of her prepaid, plus the constant trips from San Juan to Buenos Aires, the forced stay in the capital and the impossibility of working, now the young woman is faced with the need to ask for help to meet much larger expenses.
Through raffles and raffles in his hometown, plus a social media campaign that Santiago Maratea dreams of joining, the latest good news is that at least the money that Florencia needs to carry out the study has already been raised, almost 2,700 euros.
But the most important part is still missing, which are tickets for her and her companion (for her in first class, since she needs to travel lying down), the stay for the days that are needed and the operation to which she should undergo once the results have been achieved, which has a value of 38,000 euros and would be carried out by Dr. Wilhelm Sandmann in Dusseldorf.
The estimated total necessary is 80,000 euros, an impossible figure for her alone, but which can be reached with the collaboration of many.
“I need to travel now, I can’t give any more, My body and my mind can’t cope. I can’t work. You don’t know what goes through the head of someone who can’t do anything, who is incapacitated for everything. I hope they help me and I can come back healthy For me it is a dream to be able to be up for a little while. I lost three years of my lifeHopefully this is the end, “he concluded.
To learn more about the history of Florence you can follow her Instagram account, which is @florgenovart.
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