Theinterstitial cystitis or painful bladder syndrome is a very disabling rare disease, which greatly limits the lives of patients at all levels. Not todayit can be cured, although in 70% of cases, and thanks to current treatments, you can lead a normal life.

It manifests as achronic pelvic pain, along with a desire for frequent, urgent urination and dysuria(pain when urinating), in the absence of a urinary infection. It affects mainly young and middle-aged women, although men can also suffer it, according to the Spanish Federation of Rare Diseases (FEDER).

The coordinator of the Functional, Feminine and Urodynamic Urology Group of the Spanish Association of Urology (AEU), Dr. Blanca Madurga, defines this syndrome as bladder pain, chronic pelvic pain, accompanied by a desire for frequent, urgent urination , with an unbearable feeling of urination, as well as dysuria or pain when urinating.

The also specialist of the Puerta del Mar Hospital in Cádiz regrets in an interview with Infosalus that todayits cause or origin is unknown, and stresses that it is a very complex syndrome. 75% of people who suffer from it are women. “It consists of areferred pain in the pelvic area, where the bladder is, of variable intensity; Depending on the patient, the pain will have a greater or lesser degree. The pain settles more with the bladder filling, so the patient has to empty it because with a small amount he has a lot of pain. As the bladder empties, pain symptoms improve, they calm down; that’s why the frequency and urgency come from there, “he adds.

As he adds,painful bladder syndrome has many presentations, and for example there are those who have pain in the bladder and anus, or the bladder and the ass when sitting down, or even the bladder and the vagina, or for example they can present intense pain in sexual intercourse, preventing them in the woman; “That is why it is tremendously disabling in all aspects of life, work, sexual and personal,” says the urologist.

Its cause is usually unknown, as previously mentioned, although Dr. Madurga mentions that if she knew it,may be related to gynecological surgeries, or after very complicated deliveries, instrumentalized, where the nerves of the pelvic area can be injured and cause this pain. It also suggests that there may be a certain relationship with autoimmune diseases.

Thediagnosis, he confirms, is by ruling out, since pathologies that can give the same symptoms are studied first, such as bladder cancer, bladder stones, or injuries in previous surgeries. “The patient is first asked what is wrong, what is that pain like, and we are getting closer to the diagnosis of the syndrome. Normally, a cystoscopy is performed, a technique by which a tube with a camera is inserted through the urethra, and you see the mucosa of the bladder inside to check for a stone or a tumor. Also, sometimes we find atypical lesion of interstitial cystitis, Hunner’s ulcer, where it is seen that the mucosa is very damaged. In some cases it is also appropriate to perform a biopsy of the mucosa, “says the expert.

Relationship with diet

What’s more, the member of the Spanish Association of Urology highlights thatthis condition may be related to dietand many people, from the dietary advice provided by the specialist, significantly improve their symptoms.

According to him, the first thing that patients are told is thatthey have a number of prohibited foods like tomato, raw cheese, spicy foods, eating lots of oranges; anything that is excess vitamin C, as well as soft drinks, coffee, tea, or alcohol. “With this syndrome, the bladder is like when we fall and we touch our knees, that if we pour alcohol to disinfect the wound it stings a lot. This is a simile to compare what happens in the bladder if these foods or drinks are ingested. components are irritating and then are eliminated through urine, “says the doctor.

Likewise, the specialist of the Puerta del Mar Hospital in Cádiz highlights thatthe alkaline diet works very well for these patients, removing all acid from meals, while warning that each case must always be individualized because certain foods feel bad for some people, while others others.

The urologist also mentions that there isother diseases associated with bladder pain syndrome, such as fibromyalgia for example or vulvodynia. “People with this syndrome are very frequently previously diagnosed with fibromyalgia, apart from the fact that vulvodynia is very frequent, women unable to have a sexual relationship due to the pain they suffer from only with rubbing,” he adds.

On some occasions, the expert points out thatthe patient’s bladder must be removed because the pain becomes incompatible with lifeand the problems caused by the syndrome. “They are people who can get up to 20 times at night to urinate, even a single drop, to empty the bladder, because if it does not generate much pain. There are people who have fallen asleep in the toilet bowls. There are some very extreme cases, or people who wear diapers to avoid having to get up so much. It is a very hard disease for those who suffer from it, “he regrets.

Now, the coordinator of the Functional, Female and Urodynamic Urology Group of the Spanish Association of Urology wants to send a message of hope to all patients, highlighting that it is a disease that is being investigated by urologists experts in pelvic pain , of which little by little more and more advances are being achieved, and that one day it will be possible to control. “With current treatments, the70% of patients can lead normal lives, free of pain, or with very little pain, “he says.