Lthe actress has written a book in which she also talks about the pathology that struck her and strongly influenced her life. Claudio Amendola, her husband, had anticipated it on TV. We now know that it is intestinal cystitis, very often linked to fibromyalgia
Actress Francesca Neri revealed to the Run of the Evening to suffer from a chronic and rare disease, interstitial cystitis. She tells it after Claudio Amendola, her husband, by her side for 25 years, had anticipated the release of her book on TV Like living flesh, a sort of intimate diary in which cinema remains in the background because the relationship with the mother and illness are at the fore. Disease that until a few days ago was believed to be fibromyalgia. We also told you about it. In reality it is not about this but the pathology from which the actress suffers is very often accompanied by fibromyalgia, in addition to irritable bowel syndrome and food intolerance: those who suffer from one, in short, are likely to have others because these are inflammatory diseases often – it seems – with an autoimmune cause.
Interstitial cystitis: affects women more than men
There is little talk of interstitial cystitis because it concerns one small slice of people, mostly women. Estimates (the latest are from 2017) speak of 1.9 people out of 10 thousand, far below the maximum threshold beyond which a disease is no longer rare (which is 5 cases out of 10 thousand). Interstitial cystitis, therefore, among the rare pathologies, it is very. However, the estimates – as always in the case of these pathologies – are not certain due to the difficulty of the diagnosis.
As it is recognized: bladder pain is the first symptom
Diagnosis is difficult because it is very often confused with other urological or gynecological diseases. The reference expert is theurogynecologist. One of these is Professor Stefano Salvatore, who is also responsible for the Urogynecology Functional Unit at the San Raffaele Hospital in Milan. «The symptoms of interstitial cystitis are not the same for all patients and they are not all present at the same time. However, it is distinguished from the more common cystitis because the pain is not a normal burning and is almost exclusively at the level of the bladder, both when it is full and when it is empty. So much so that in international terminology it is also defined as “Painful bladder syndrome”. This pain is also felt by simply touching the bladder. In vulvodynia, for example, another complex disease to recognize, the pain is at the height of the vulva ».
The urge to empty the bladder
The most typical symptom, however, in addition to constant pain in the bladder, is the very strong urge to empty it, many times a day, in extreme cases even 80. Day and night. “But it is not certain: many women, for example, do not urinate at night, which is why it is difficult to frame the disease and trace it back to a series of universal symptoms” explains Professor Salvatore.
Other symptoms (also for men)
Among the signs, too migraine, muscle and joint pain, gastrointestinal problems and allergies. Men can suffer from pain in the testicles, scrotum and perineum and have painful ejaculations.
The diagnosis
The first step isanamnesis, that is, the collection of all information that may relate to the symptoms. “The specialist asks for a real daily diary in which to leave a trace of everything: number of urinations, type of pain, sensations, diet, rest, physical activity” explains the expert. «The next step is urine culture, which gives the doctor the first certainty. In fact, the only evidence that must guide him in the first place is thereabsence of bacteria: if the urinalysis does not find any, it means that it is not simple cystitis but something else. It is therefore useless to resort to antibiotics, as often happens, however, with a persistence that only causes other problems. From there then we proceed by exclusion. It makes one biopsy of the bladder tissue to understand if malignant cells are present, then a ‘ultrasound of the bladder wall and a cystoscopy: these tests help to evaluate the level of inflammation of the organ, evident from small ulcers that bleed ».
The cause
At the origin of the disease there is one severe inflammation causing an alteration of the bladder wall. “The causes of this inflammation, however, are not known even if one thinks of infectious (unknown and undetectable), hormonal, vascular, neurological origins” explains the expert. “It can also be about the consequences of an immune pathology, in which it certainly is stress has a very strong part ».
The cure
This disease does not regress, it can be kept at bay but in any case not with a single treatment. «In wax situations they work anti-inflammatories and antidepressants. More often effective are those drugs – to be instilled directly into the bladder – that restore the protein and sugar barrier to protect the bladder itself. They can help too electrical stimulation and local and sacral neuromodulation and certainly the anti-stress techniques (from yoga to watsu or any other activity that can help reduce tension). However, rehabilitation therapy must take into account the health of the pelvic floor as a whole: who has pain defends the pelvic floor by contracting it, but this in turn creates more pain».
Food, smoking and alcohol
As in all inflammatory diseases, nutrition plays an important role. «Spices and anything that can cause inflammation should be avoided, like even smoking and alcohol»Continues Professor Salvatore. “But it is also very important sharing pain. This disease has serious repercussions on everyday life, work, relationship life, sexuality. Whoever stands by the side of people who suffer from it, mostly women, must be available to help and listen ».
Diagnosis even 10 years late
Listening that is often lacking in the first place among doctors. There are women who are diagnosed after more than 10 years, precisely because of the difficulty in recognizing the disease. Loredana Nasta, president of Here, the Italian Interstitial Cystitis Association, which in 25 years of battles has managed to recognize the disease among the rare ones, therefore with exemptions and support for those who suffer from it. «Very often gynecologists struggle to make the diagnosis due to lack of information and preparation and so, from antibiotic to antibiotic, years go by. Instead, it would be enough to listen to people better: medical history, symptoms, are essential to reconstruct this complex puzzle. From a study we carried out, 94 percent of diagnoses are made by the patients themselves».
The upcoming short film
It can only help to talk about it more and more. Francesca Neri’s book will play its part, but at the Rome Film Festival which begins on October 16th the short film is presented And then she came along, made by Nove Produzioni in collaboration with Fabbrica Artistica.