Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) –
Frequently Asked Questions and Often Misunderstood Things
We must face the fact: plenty of people have never heard of IC/BPS. In spite of this, there are a lot of false assumption and incorrect information on the Internet about this condition. Actually, a lot of things are still not known about IC/BPS. Luckily, it has been studied enthusiastically, so there have been more and more studies published, more and more up-to-date diagnostic methods and treatments have been tried out.
Unfortunately, the new facts spread on the Internet and people become aware of them with a significant delay. Obsolete views, hypotheses that were never proved, assumptions rejected later may be more known than the modern results and achievements. This is why popular misbeliefs can spread from website to website or among patients, too. In other words, even if a piece of information is available on plenty of webpages, it does not mean that it is correct, too. Social media is an especially “dangerous” platform, from this point of view. Every now and then it can happen that some farfetched assumption becomes considered a fact – misleading the visitors, and, eventually, the patients, too.
This is why we would like to make a couple of things clear about this condition.
1. IC/BPS is a sparse disease, isn’t it?
Considering the number of diagnosed cases, indeed, it appears so. Depending on the way how the estimations are made, up to 2–5% of the adult people may be affected. However, the diagnose rate of the disease is very low: even in countries of most advanced healthcare it is below 10%. (In most countries it is between 1–5%.)
There are several factors behind the low diagnose rate. The disease itself is not known by most people; there are even doctors, gynecologists and urologists (!) who have never heard of it. Most who suffer from IC/BPS do not dare talk honestly about their symptoms, which greatly hinders the publicity of the disease.
This is why we are dedicated to inform the society: IC/BPS is a severe disease, which affects many people.
If it is assumed that you have 250 acquaintance, it is likely that there is someone among them who suffers from IC/BPS. Even if he/she never talks about it.
2. So what. If someone is ill, they have to see the doctor. IC/BPS is not an exception, isn’t it?
The most typical symptoms of IC/BPS are the bladder (and urethral) pain and frequent urination. Unfortunately, these symptoms can be present because of other conditions, too: for example, malignant transformations (cancer) or bacterial urinary tract infections. However, these diseases usually have definite markers, such as pus in the urine.
IC/BPS has no similar markers, since it has no pathogen and there is no tumorous transformation either.
Therefore, to diagnose IC/BPS all the other conditions may cause similar symptoms must be excluded.
If it gets diagnosed at all… Since most of the GPs and gynecologists do not know this disease, they cannot treat it either. They often set up a false diagnosis, which results in false and/or unnecessary treatments. Sadly, there are even urologists who do not have proper knowledge on IC/BPS. Often times, they do know the disease but they simply do not consider it – or if they do, they do not apply the up-to-date treatment methods since they are not aware of those.
Without a proper diagnosis, things can go wrong easily. Seriously wrong.
Patients may run from doctor to doctor, hoping that someone may be able to find out what the problem is and how to treat it. Which is far not the worst case. There have been plenty of patients who were mis-treated (for example, with some gynecological problem) since their doctor set up an entirely wrong diagnosis. Some patients stick to their therapists for long years, even a decade – and get a treatment which does not help at all or makes everything even worse. Antibiotics, for example.
Sometimes the most terrible happens. Since there is noting to identify as the cause of the pain, the doctor assumes it is only in the patient’s mind – and redirects him/her to a psychologist or a psychiatrist.
Meanwhile, the condition progresses. In case of a severe form of IC/BPS, the patient has to urinate in every hour. Or twice, three times an hour. Which, no surprise, hinders work, too. Pain can wreck the private life. Night becomes a nightmare because of the symptoms, which leads to sleep deprivation.
There have already been patients who, having seen no other way out, committed suicide.
Because of all these things, it is essential to diagnose IC/BPS quickly so that the proper treatment can start as soon as it is possible.
3. I have already checked it on the Internet: if my bladder hurts and I have to urinate a lot, then I have IC/BPS…
Let’s make it clear: even much more known diseases or conditions with much more definite symptoms can never be diagnosed by reading articles on the Internet. No one should every self-diagnose themselves with the help of the Internet.
As we said before, there are quite a lot of other conditions which may have similar symptoms. These, however, can be diagnosed by a urologist with routine tests. (For example, a simple urine test.) When it has happened, the proper treatment can start instantly.
It is worth knowing, on the other hand, that finding an “easily diagnosable” disease does not essentially rule out IC/BPS. It is also possible that the symptoms indeed refer to IC/BPS.
But it is not you who can find out what the problem is. Not even this webpage. You have to see a urologist, who can perform all the necessary examinations to diagnose you – who can confirm or deny IC/BPS.
4. Can IC/BPS be diagnosed then?
Although there is no 100% method for diagnosing this disease, nowadays it is possible to do so with high accuracy.
All the symptoms of IC/BPS occur because of the deficiency of the mucus layer of the bladder – this layer is called GAG-layer. The GAG-layer insufficiency does not essentially mean the lack of it. Often times, the deficiency can be observed only in distinct regions or patches, or the permeability of the GAG-layer is increased. Moreover, this is not the same condition as IC/BPS (which is, per definition, the non-bacterial inflammation of the bladder wall), but with time the deficiency may lead to the development of IC/BPS.
The changes of the GAG-layer, on the other hand, can be identified. One of the newest methods how it can be performed is the GAG-layer integrity test. During this test, the patients have to log for two days the frequency and the volumes of their voidings. Further information can be found here.
For the accurate diagnosis the doctors regularly apply further methods, too. They investigate the anamnesis of the patient, have them fill out questionnaires to evaluate their general condition, and, if needed, they confirm the diagnosis with other examinations, for example, cystoscopy.
5. My therapist wants me to see a psychologist. This is totally unacceptable! I have problems in my bladder, not in my mind!
As a matter of fact, if you are sent to a psychologist, that does not mean that your therapist wants to get rid of you. Psychical stress can often be a side-effect of a long-lasting condition of severe pain. IC/BPS is not an exception. Psychical symptoms can make everything worse, which may lead to suicidal thoughts. Unfortunately, these thoughts may be translated to acts, too – as it has already happened to a couple of patients.
A psychologist can give important help to cope with the disease, improve the patient’s self-assessment – thus, may be an important part of the IC/BSP therapy.
Certainly, it should never be forgotten that any psychological treatment may complement, but never replace the therapy of a professional urologist!
6. I got diagnosed with IC/BPS, but my therapist hadn’t done cystoscopy, biopsy or urodynamics!
As it was explained above, diagnosing IC/BPS is a complicated task. It does not essentially involve all the possible diagnostic methods. Indeed, cystoscopy is frequently done by urologists. It is an effective way to identify some abnormalities that may refer to certain forms of IC/BPS. Nowadays, cystoscopy is a “mild” diagnostic tool, which can be totally pain-free. However, it is still an invasive tool; complications or side-effects might occur in a small percentage of cases. So, without proper professional reasons, it is not recommended. Especially, since there are forms of IC/BPS without any characteristic signs on the cystoscopy image.
The biopsy of the bladder mucosa is not the part of diagnosing IC/BPS anymore, because the biopsy image does not give any relevant information. On the other hand, signs of a malignant transformation can be discovered by biopsy – but urine cytology examination is considered to be a more effective tool, which is less invasive, as well.
Urodynamics are not only incapable of diagnosing IC/BPS, but also time-consuming, expensive and invasive. They are not recommended for this purpose anymore.
6. Wouldn’t it be easier to identify what causes IC/BPS and treat causes themselves?
Indeed, a major part of the IC/BPS researches focus on the cause why IC/BPS develops – why the GAG-layer gets defective – so that a casual treatment could be applied.
There have been several theories introduced, but none of them have been proven so far. So, the real cause of IC/BPS is still not known, current therapies must focus on treating the symptoms: replenishing the GAG-layer or mitigating the symptoms.
7. Can IC/BPS be cured permanently?
Unfortunately, there is no treatment known which can cure IC/BPS for good. However, if an effective treatment is applied, patients can be symptom-free for long years. The sooner the condition is diagnosed, the bigger the chance for this.
It must be noted that for achieving a good result the patient must work hard, too. The effective treatment includes lifestyle changes, abundant fluid intake, dietary changes and medical advice – these are to be obeyed for the best result.
8. Are lifestyle changes enough?
If only it were so!
Don’t put it in the wrong way, though: lifestyle changes – especially diet and abundant fluid intake – help a lot in mitigating the symptoms. They may be enough for being symptom-free in case of an early-phase IC/BPS.
Unfortunately, in most cases, by the time the treatment starts, lifestyle changes are not enough anymore. Even if there are certain guides used in several countries which say the treatment is to start with the least invasive method and the steps should follow each other in the order of increasing invasiveness.
In theory, this guideline is correct. In practice, on the other hand, the non-invasive methods (such as lifestyle changes, diet, oral medication etc.) may make the time elapsed until the effective treatment last longer. In order to focus on the patients’ interest, starting with a combined therapy seems to be the most effective. This means, administering anti-inflammatory, analgesic and GAG-layer strengthening medication orally and instilling GAG-layer replenishers simultaneously.
9. I read that vegan diet would heal IC/BPS. Is that true?
There are certain people who admit by cutting out food of animal origin they managed to heal their IC/BPS. It is not our task to decide whether vegan diet is healthier, but there is something that needs to be cleared. No research has shown any correlation between the symptoms and having food of animal origin. It is proven, on the other hand, that any food or drink makes the urine more acidic (such as tomato or fruit juices) can irritate the bladder and worsen the symptoms. Most sorts of meat can be had without any problems if prepared well (e.g. without using irritative spices).
10. Why to take medicine? Herbal products or teas can be more effective, can’t they?
There are not enough data available on herbal products available on the market to decide whether they are effective or not. However, most herbal teas and extracts contain substances which can irritate the damaged bladder. Because of this, even if they are or may be effective, they can do more harm than good.
11. Which sort of antibiotics is the best for treating IC/BPS?
Let’s make it clear: antibiotics are used for treating bacterial infections, and IC/BPS has no pathogen. So, none of them are effective for treating IC/BPS.
If your urologist happens to have prescribed some antibiotics, it must have happened because you have a bacterial urinary tract infection. In this case, antibiotics are effective, but choosing the most effective one should happen only after a bacterial culture has been made (to decide what sort of bacteria are to be fought off).
In case an IC/BPS starts taking antibiotics – because of any condition or infection besides IC/BPS –, they should ask for advice from their urologist, since most antibiotics can irritate the damaged bladder – just in the same way as herbal products do!
12. Which one is the best analgesic for IC/BPS?
The cause of the pain is the increased permeability of the protective bladder of the mucus. So, pain shows up because there are irritative substances present in the urine. Therefore, the most effective way to mitigate the pain is to drink a lot, which lowers the concentration of these irritative substances in the urine. Also, a strict IC/BPS diet must be followed (to lessen the intake of everything that makes the urine more acidic), complemented with urine alkalization (with alkalizing pills, alkalic mineral water, or lemon juice).
Besides everything detailed so far has been applied, any general analgesic can be administered (such as Advil, Diclofenac, Algopyrin etc.).
13. What sort of food supplement or vitamin should be taken?
Generally said, vitamin products do not help mitigate the symptoms. Regardless of the plenty of pages on the Internet advertising “magical products” good for everyone! Always be cautious – especially if there is nothing said about contraindications. The best thing you can do is to ask your therapist before you start taking a new medicine or food supplement.
Also, it is worth knowing that vitamin B and C taken in big doses can worsen the symptoms – just like antibiotics and herbal products can.
14. Is oral medication better than intravesical?
The opposite is true. Local administration – instilling the medication directly into the bladder – enables much bigger concentration of the active agent in the target organ (in this case: the surface of the bladder) than oral administration. Moreover, if a medicine is instilled into the bladder, it does not enter the blood circulation, which means, no systematic side-effects occur.
That said, intravesical instillation is more effective than oral medication.
15. But… intravesical instillation is done with a catheter!
Indeed, for a long time, applying a catheter used to be the only way of bladder instillation. Even if the procedure is painful, uncomfortable, and infections often occurred after the treatment. To overcome these problems have UroDapter® been developed, an urological adapter which replaces catheter. You can read more about UroDapter® on this page.
Also, there is another medical device, UroStill®, which helps patients perform a self-treatment. With UroStill®, the bladder instillation through the urethra can be done without external help. More information can be found on this page.
16. Not only has the treatment help, but also it has made everything worse! I must have received the wrong treatment!
There are a couple of things to be cleared.
Firstly, it is not possible to achieve any improvement of a condition which has developed for long years, with one or very few treatments.
Secondly, there is no treatment that is effective for the 100% of the patients. That said, 20% of the patients do not respond to the usual ways of treatment. In their case, further examinations may be necessary; for example, (another) cystoscopy may confirm damaged areas in the bladder mucosa that are not responding to the local therapy anymore. In this case, fulguration of the affected areas may be necessary. Administering substances affecting the nerve system (antidepressants, nerval anti-inflammatories), anti-allergic compounds or strong, even dazing analgesics may help, as complementary forms of the treatment.
Thirdly, solutions used for bladder instillation usually contain more components; including anti-inflammatories, anesthetics, analgesics, and GAG-layer replenishers. It’s rare, but not impossible that someone is allergic to one of these components – e.g. to lidocaine. However, this does not trigger pain, in most cases. It is much more likely that the symptoms are getting worse because the medicine is too concentrated or too acidic – these factors can indeed be irritative.
Finally, the GAG-layer consists of more compounds; the bladder instillation solutions (or cocktails) usually contain one or some of them. Generally said, a patient responds with a bigger chance if the instilled cocktail contains more GAG-layer replenishment elements.
17. It feels as if the doctors were experimenting on the patients…
It must be pointed out that every medicine or pharmaceutical composition has to undergo serious experiments and clinical trials before they are allowed to be used in practice. In case of lesser-known diseases like IC/BPS, it is a big achievement that medicine the majority of the patients can be treated successfully with do exist!
If your therapist alters the ingredients of the cocktail administered, the frequency of the treatments, it indeed looks like “experimenting”. In fact, these decisions are based on the professional’s experience – which is based on hard work of long years, and feedback of hundreds of patients.
18. I feel alone and isolated with my condition…
In most countries there are IC/BPS Patient Associations (since 2019, there has been a Hungarian organization, too). These associations dedicate themselves to help those who are suffering from this disease, and are open to the relatives of the patients, the doctors and everyone who would like to know more about this serious condition.
These associations are co-operating with each other, asking for help and guidance from those who may have collected more knowledge and built more relationships. They even consult with professionals about the future of research and therapy of IC/BPS.