IC Conferences in India- 2016

2016 is going to be a landmark year in India for Interstitial Cystitis patients. IC which was comparatively a neglected disease in India suddenly gained importance with quite a few seminars and conferences taking place. The biggest event ESSIC 2016 is going to take place in Delhi from 17-19 November 2016. The conference venue of the ESSIC 2016 annual meeting is Four Points by Sheraton in New Delhi. Swati Spentose the manufacturer of Pentosan Polysulphate drug under the brand name Comfora is the exclusive partner of ESSIC 2016.

ESSIC 2016

As a prelude to the ESSIC annual meeting Swati Spenstose organized the first congress of IC/BPS in Mumbai on 27-28 August, where they successfully launched Global Interstitial Cystitis Bladder Pain Society (GIBS), a global platform for IC/BPS. In a first of its kind initiative in the country, GIBS has undertaken an initiative to develop guidelines for diagnosis and treatment of interstitial cystitis/bladder pain syndrome (IC/BPS). The guidelines will streamline the diagnosis process in order to shorten assessment time for the disease and subsequently avoid delay in treatment.The guidelines, being developed by a panel of eight doctors comprising of urologists and gynecologists led by Dr Rajesh Taneja, noted urologist at Indraprastha Apollo Hospital, New Delhi and GIBS 2016 chairperson, are likely to be released by GIBS in a couple of months.

Mr. Vishal Jajodia, MD, Swati Spentose delivering his speech at GIBS 2016

The GIBS conference was attended by 140 doctors from various faculties including urology, gynecology, and pain therapy. GIBS will be held next in August 2017. Various aspects of the disease were discussed in detail during the congress. Unlike depending on cystoscopy and hydro-distension as the only diagnosis and treatment various alternative methods were discussed which is definitely a blessing for the patients.

Dr. Rajesh Taneja, Dr Sanjay Pandey and Mr Vishal Jajodia

Dr Rajesh Taneja, in his presentation spoke elaborately on the role of elimination diet, mast cells, role of probiotics, role of pelvic floor therapy and also the usage of baking soda in getting relief. Dr. Apul Goel noted urologist spoke on pelvic floor therapy and the role of Thiel massage to alleviate IC pain. Dr. Navita Purohit, pain therapist from Kokilaben Dhirubhai Ambani Hospital, Mumbai, also emphasized on the role of pain therapy in treating IC. It is good to see that finally the medical fraternity is giving serious thoughts to IC which was so far dealt as an orphan disease.

The GIBS team

GIBS gave a platform to IC patients and this will raise the much needed awareness about this disease among patients and doctors. GIBS will give a new dimension to the diagnosis and treatment of IC. New procedures along with traditional approach towards this disease will definitely bring relief to numerous IC patients.

Delegates who participated in GIBS 2016

In the month of August, Dr Nagendra Mishra, eminent IC specialist in India also organized a conference on IC/BPS in Ahmedabad. The session was also attended by few of Dr. Mishra’s patients who shared their experiences on dealing with the disease. In this conference cystoscopy was discussed in detail. Most doctors attending this conference emphasized on the use of cystoscopy in diagnosing and treating IC. Dr. Mishra also shared quite a few videos of cystoscopies of IC patients and few videos of cystoscopies done on patients with Hunner’s lesions.

Dr. Nagendra Mishra with one of his patients

Balaka Basu addressing the patient's meet at Ahmedabad

Baking Soda for instant relief from IC flare

During one of my worst flares I was searching online for some remedies, and precisely then I came across the usage of baking soda to control IC flares. Let me confess, so far baking soda is the only thing that gives me instant relief from a flare. It works better than pyridium for me. 

Many patients in various IC forums vouch for baking soda. However many doctors debate it. Many doctors believe that it unnecessarily increases the sodium content in the body. If a patient has high blood pressure, or has to follow a salt restricted diet then usage of baking soda is not recommended at all.

Baking soda gives instant relief from acidic food induced flares. It alkalizes the pH balance of urine and gives relief. However baking soda should not be used frequently. Within a day not more than three times.

Take a large glass of water and add ½ teaspoon of baking soda. Dissolve it well by stirring and then drink it. You will get relief from burning and pain within half an hour. 

Tips for Sexual Intercourse for Interstitial Cystitis Patients

One of the major triggers for flare up of Interstitial Cystitis (IC) symptoms is sexual intercourse. IC can have a disruptive effect on sexuality and relationships. In a recent survey it was found that at least 90% of patients reported that their IC has kept them from sharing intimacy with their partner. Many have pain with intercourse or orgasm, or sexual activity may prompt IC flares later on. Pain can set up a cycle of low desire, tension in the relationship, depression, avoidance, and guilt. From 50-85% of women with IC also have vulvodynia. Men with IC can have genital and perineum pain similar to vulvodynia, pain with intercourse, low desire, and relationship difficulties as well as erectile dysfunction and pain with ejaculation and after ejaculation.

The impact of IC on relationships and psychological well-being is great. In fact, impaired sexual function has been shown to be one of the strongest predictors of poorer quality of life in IC patients. Despite the magnitude of the problem for IC patients, it often is not addressed. Doctors often do not discuss sex with their patients. In addition, it can be difficult to talk to your partner about intimacy.

The condition in India is even worse. In India female sexuality is already a taboo, therefore this issue never gets addressed. Urologists and gynecologists are often clueless about how to resolve this problem and often prescribe pain medication to get rid of the pain. However pain medication alone is not enough to solve this.

A female patient suffering from IC is not frigid. Unlike a frigid woman they enjoy sex however due to their condition they are neither able to satisfy their partners nor themselves making it a major psychological problem. Young IC patients are often eager to conceive yet this condition majorly affects their conception. Pregnancy on the contrary can often put an IC patient into complete remission. Many women with IC experience increased pain, urethral burning, urinary frequency, soreness of the vaginal area after having sexual intercourse. And this condition can last for days or weeks. Therefore many women completely stop having sex even though they feel the desire, making it frustrating for both the patient and her partner.

There are however few tips to improve the sexual life for IC patients:

• The first and foremost is to have an understanding partner who would empathise with you. Talk to your partner. Communicating about sex could be the most important element in having a healthy and fulfilling sexual relationship.
• Avoid sex during flare-up.
• Try to be relaxed during sex. 
• Empty the bladder before and after having sex.
• Drink plenty of water before and after sexual intercourse and urinate shortly afterward to clean out the urethra and avoid infection.
• Take any prescribed medication before engaging in sexual intercourse (pain medication, muscle relaxants or any other prescribed medicine) to ensure maximum comfort.
• Lubricate properly.
• Test out any new lubricant or contraceptive product before using to ensure that it does not cause flare. Natural products like coconut oil are safe lubricants. Avoid ribbed or flavoured condoms.
• Ask your partner to penetrate only when you are completely aroused and ask him to do it slowly. Please do not rush as it may cause severe pain. Use proper additional lubricants.
• Find sexual positions that reduce pressure on the bladder and/or friction near the urethra depending on where you experience most of your pain. Side-facing positions are recommended because there is less pressure applied on the urethra and the bladder.
• "Women on top" position can also be tried.
• When penetration is too painful for women use “outer-course” techniques. Often, that means joining either in a “spoon” position or with the partner’s genitals resting on top of the pubic area or between a woman’s thighs, breasts, or buttocks and rubbing bodies in a way to experience high levels of arousal and even orgasm (for one or both partners). Partners can also bring each other to orgasm, if that is comfortable, orally or manually or masturbate mutually. 
• Use a cool icepack on the vulva or perineum to reduce the burning sensation that may accompany sexual intercourse. Internal cooling packs (ice packs that may be placed inside the vagina) may also be used as recommended by a physician.
• Take a hot bath and use a heating pad to provide some comfort from pain both before and after sex.
• If your pain is related to tight pelvic floor muscles, consider using a vibrator or series of vaginal dilators, to exercise and relax the muscles. Vibrators may be better because the vibration can encourage a relaxing of the muscles.
• last but not the least, experiment and find your own comfortable position. Sex isn’t all about orgasm. You and your partner may be able to maintain your sexual connection with sex talk, sharing fantasies, cuddling, reading erotica, watching sexy videos, kissing from head to toe, bathing together, or sensuous massage.

               

Indian Diet Chart for Interstitial Cystitis

In India often the role of diet in managing Interstitial Cystitis is not emphasize, however,r diet plays an important role in healing Interstitial Cystitis (IC). It is popularly believed that IC is incurable however with the knowledge of proper diet IC can be managed to a large extent. An IC patient can take a cue from online and offline resources to chalk out a diet plan. The best way is to start an elimination diet by identifying and eliminating the foods that trigger flare-ups.

The common trigger foods are:

Tea

Coffee

Alcohol

Tomato

Citrus Fruits

Chocolates

Sweets and Sugar

Onions

Processed Food

Capsicum

Chillies

Spicy Food

Sauces

Pickles

My Diet Plan

Here I am sharing the diet plan that I followed to heal IC. First I eliminated all the above mentioned foods from my diet. If you have severe IC it is best to avoid gluten and diary in addition. In the first month,h I had mainly boiled/steamed/raw food. I was having fruits like banana, pears and apple. In the first month,h my breakfast used to be idli or dosa with curd. I avoided the chutney and sambhar. My mid morning snack used to be cucumber or carrots. In the afternoon I used to have boiled rice with boiled vegetables and curd. In the evening I usually had an apple and carrot smoothie. Dinner used to be rice and boiled vegetables. After diligently following this diet for a month my pain and frequency reduced considerably. Slowly I started including foods to my diet however till now I do not eat many things. I try to stick to an alkaline diet.  I avoid eating outside and mostly stick to home cooked non spicy foods.

IC Food Chart

Foods	Friendly Foods	Foods to Avoid
Vegetables	Potatoes, beans, carrots, cauliflower, cabbage, peas, radish	Raw onion, chillies, capsicum, bell papers, tomatoes
Fruits	Banana, melons, pears, apples	Grapes, lime, lemons, oranges, pineapple, cranberry, strawberry
Dairy	Skimmed milk, curd, paneer, natural vanilla ice cream	Flavoured yogurt, ice cream, processed cheese
Grains	Rice, millets (bajra, jowar, ragi) oats, lentils	White flour (maida)
Meats/ fish	Chicken, fish	Salaami, sausages, mutton
Nuts/ dryfruits	Almonds, cashew, peanuts, walnuts, raisins	Pistachio
Beverage	Herbal tea, ginger tea	Tea, coffee, alcohol, aerated drinks, fizzy drinks
Spices	Ginger, garlic, coriander, cumin	Red chilli, cardamom, clove

The above-mentioned list will help you plan meals initially. Once you start to feel better you can add foods back to your meals. We all are different and all of us have different trigger foods. So through a process of trial and errors, you will have to find your own trigger foods. It will take some time but eventually, you will find your trigger foods. Follow this chart along with the bladder diary to identify your trigger foods.

Do watch this video for more info. 

Tips to Cope with Interstitial Cystitis

It is believed that Interstitial Cystitis (IC) is a chronic disease with no treatment or cure. However do not get disheartened. There are many who go into remission, and often with proper treatment and care the patient can remain symptom free for years. Here are the things you need to do after getting diagnosed with IC. The list has been prepared on the basis of my personal experience and should not be considered a medical theory.  This is what I did after I was diagnosed with IC.

Attitude: IC is incurable they say but do not get disheartened. Change your attitude and say “I Can” loudly. This will help you go a long way. The moment you send signals to your brain that you can heal yourself; your body also reacts positively.

      Research, Research, Research: This is what I did. I researched extensively both online and offline. I read as much as possible regarding this disease. It helped me get a very clear perspective regarding what I was going through. I read about the symptoms, precautions, treatment and even alternative ways to treat IC. I would be sharing all those eventually in this blog.

      Find a Good Urologist: It is very important to find a good doctor. A doctor who is compassionate and empathetic. One who is ready to listen to you and considers you a priority. I personally do not like doctors who are dismissive and doesn’t encourage the patient to ask questions.

         

          Identify your triggers:  It is very important to identify your triggers. I will discuss more elaborately about triggers later on. The few common triggers are stress, certain foods, hormonal changes, intercourse and strenuous physical activity.  Once you identify what aggravates your symptoms try and avoid them.

      

      Avoid: Citrus fruits, Coffee, tea, alcohol, tomatoes, raw onions, sugar, processed foods, sauces and pickles. But this list is not exhaustive. Every individual has his/her unique trigger food that you need to identify. Your doctor may not give you an exhaustive list of foods to avoid. Therefore it is very important that you start avoiding food that you think are escalating your symptoms. Follow this chart to identify your trigger food. Try eating an alkaline diet.

      

       Medicine: Take your medicines, however IC being a difficult disease not all medicine will suit you. Therefore you and your doctor will have to work hard to pinpoint the medicine that work for you. For example I responded well to pentosan but many don’t. So keep tracking.

            Try home remedies: I try quite a few home remedies to soothe my IC along with taking regular medicines. One is baking soda. Avoid it if you have high blood pressure. You can try half teaspoon of baking soda (sodium bicarbonate) in a glass of water whenever you feel your symptoms are flaring up. It gives immediate relief.

Exercise: If you are in pain it is difficult to think of exercising but try doing low intensity exercises like walking, yoga and stretching.

Meditate: Try breathing exercises and prayers to help calm down. This will help control your stress level.

 Sunshine: One day when I was crying in pain my mom-in-law advised me to go and soak in the sun. It helped to soothe me. Now I have made it a habit to sit in the sun for half an hour each day. It helps to balance my vitamin D level and also soothes me.

Join a Support Group: In India there are no proper registered support group. However there are numerous online support groups that you can join. The Facebook support group that I joined helped me tremendously in this lonely battle. So search for a group that suits you and join. 

Diagnosing Interstitial Cystitis in India

The biggest hurdle for any IC patient in India is to get diagnosed. In most cases patients remain un-diagnosed or misdiagnosed. Therefore if you have symptoms like lower abdominal pain for more than few weeks which increases when your bladder is full, pelvic pain, frequent urination often as many as 20 times and urgency to pass urine. You might be suffering from interstitial cystitis. You might have associated symptoms like constant pressure in the pelvic region, burning sensation, burning while passing urine, painful intercourse, back pain and burning feet. If you have been suffering from the above mentioned symptoms then the best way is to visit an Urologist.

Unlike a urinary tract infection, interstitial cystitis cannot be diagnosed with a simple urinalysis or urine culture. Rather, it’s a diagnosis of exclusion, which means that the urologist will first take a thorough history and then perform tests designed to rule out other diseases. These include infection, bladder stones, bladder cancer, kidney disease, multiple sclerosis, endometriosis, and sexually transmitted diseases. As IC has overlapping symptoms with other diseases the doctor would follow a process of elimination to establish IC.

Pelvic Exam: First the doctor would do a pelvic exam. During a pelvic exam, the doctor examines external genitals, vagina and cervix and feels the abdomen to assess internal pelvic organs.

Urine Tests: The urologist would initially ask you to do urine routine test and urine culture. This would help them to rule out Urinary Tract Infection.

USG of KUB: Ultrasonography (USG) of the KUB (Kidney, urethras, bladders) helps them to rule out any abnormality in the KUB. It would also help the doctor see the post void urine volume.

Cystoscopy with hydrodistension: The doctor may possibly do a procedure called cystoscopy with hydrodistension, which is performed under general anesthesia. In cystoscopy, the doctor inserts a thin tube with a tiny camera (cystoscope) through the urethra, which allows the doctor to see the lining of bladder. Along with cystoscopy, your doctor may inject liquid into your bladder to measure your bladder capacity. Your doctor may perform this procedure, known as hydrodistention, after you've been numbed with an anesthetic medication to make you more comfortable. Interestingly, distending the bladder can itself be therapeutic. About half of patients get some relief for about three months after the procedure. The most common sign of interstitial cystitis is red pinpoint spots of blood (glomerulations) covering much of the bladder wall surface. Sometimes there are scars or lesions called Hunner’s ulcers, accompanied by low bladder capacity due to tissue stiffening (fibrosis).

Biopsy: During cystoscopy, the doctor may take a biopsy (tissue sample) of the bladder to rule out bladder cancer and look for evidence of the mast cells that indicate an allergic reaction or autoimmune response.

Urodynamic Studies: An urodynamic study is not essential to diagnose IC, however it remains important for the confirmation of the clinical symptoms of IC. An urodynamic study may also be useful in selecting the therapeutic modalities for IC.

Potassium Chloride Sensitivity Test: Few doctors may also want to do a potassium chloride sensitivity test. In this test, your doctor places two solutions — water and potassium chloride — into your bladder, one at a time. You're asked to rate on a scale of 0 to 5 the pain and urgency you feel after each solution is instilled. If you feel noticeably more pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis. People with normal bladders can't tell the difference between the two solutions.

Why diagnosing Interstitial Cystitis is difficult

Interstitial Cystitis (IC) is often considered a rare disease. However IC is not really a rare disease but a neglected disease which doesn’t get diagnosed easily or worse gets misdiagnosed. In India as the awareness is very low many people just live with it without ever getting diagnosed. Many patients start believing that IC is part of the normal progression of life.

About 90% of IC patients are female. Most women go to a gynaecologist whenever they have any issue “down under” and as the awareness of IC among gynaecologists are abysmal in maximum cases the patient gets misdiagnosed. Even general practitioners are not able to diagnose it properly and often confuse it with some other disease.

Clinically it is very difficult to ascertain IC. Even for an urologist it is not an easy task and often they have to conclude IC through a process of elimination. Once they eliminate other diseases they can confirm it as IC. The diseases with which IC is commonly confused or rather the diseases which should be ruled out to confirm IC are as follows:

Urinary Tract Infection (UTI) – This is the commonest disease that IC is confused with. The patients of IC suffer from ALL the symptoms of UTI like frequency, urgency, burning sensation while passing urine and lower abdominal pain. Therefore in most cases when an IC patient goes to a doctor he/she is prescribed medicines of UTI especially antibiotics.

Endometriosis- IC is also commonly confused with endometriosis. In Endometriosis a patient suffers from chronic pelvic pain which increases during menstruation. Similarly an IC patient also suffers from pelvic pain which flares up during menstruation. Patients of endometriosis feel pain during sex; similarly IC patients also feel pain.

Urogenital Tuberculosis- The symptoms of this disease include urinary frequency, painful urination or dysuria and loin discomfort. All symptoms are similar to IC symptoms. In India tuberculosis is more common therefore earlier IC patients were treated as TB patients.

Urethritis- Here the symptoms again include painful or difficult urination, burning urethra and sore urethra.

Vaginitis or vulvovaginitis - Many symptoms of Vaginitis overlaps with IC like vaginal irritation and inflammation, painful sexual intercourse and painful urination.

Vulvodynia- Pain is the most notable symptom of vulvodynia, and can be characterized as a burning, stinging, irritation or sharp pain that occurs in the vulva and entrance to the vagina. It may be constant, intermittent or happen only when the vulva is touched. It can occur during or after sexual activity, when tampons are inserted, or when prolonged pressure is applied to the vulva, such as during sitting, bike riding, or horseback riding. Even an IC patient suffers from these symptoms.

Bladder Cancer- Even though the most common symptom for bladder cancer is blood in the urine however there are other symptoms which mimic IC like  pain during urination, frequent urination, or feeling the need to urinate without being able to do so and pelvic pain.

Neurogenic Bladder- IC is also confused with neurogenic bladder as patients are unable to void properly and often have difficulty in urination.

Fibromyalgia- Patients suffering from this disease also suffer from chronic pain, bladder disorder, sleep disturbance and nerve pain.

Vitamin B12 deficiency- IC patients often suffer from burning sensation in the feet. A person who has Vitamin B12 deficiency also suffer from this therefore often an IC patient is given vitamin B12.

Psychological problem- In extreme cases when medical practitioners are unable to find any disease they consider the patient is merely imagining the pain and treat them as psychiatric patients.

The symptoms of interstitial cystitis overlap with many other diseases. So it is not easy to pinpoint IC so easily. A patient can therefore suffer from any other disease from the above mentioned instead of IC, or a patient can suffer from IC and none of the above, or a patient can suffer from IC and any or few of the above. A doctor has to take into cognizance a proper algorithm to ascertain IC. So even for a doctor confirming IC is not easy.

Interview with Dr. Nagendra Mishra- Leading IC Specialist in India

Dr. Nagendra Mishra is considered an international expert and a pioneer in India in treating Interstitial Cystitis(IC). He has treated patients and has dedicated years of research in understanding IC. Numerous research papers were published under his credit. He is the founder member of International Painful Bladder Society (IPBS) based in Amsterdam. In 2002 he conducted an international survey on IC along with Jane Meijlink from Netherlands. In this interview he speaks on a wide range of issues involving IC. Dr. Mishra is based in Ahmedabad and also runs an IC support group from his centre in Ahmedabad.

Q) Do you think the awareness about IC is increasing in India?

A) When I was trained in urology some 25 years back it was believed that IC is a disease of western world and does not exist in INDIA. The symptoms of IC are very much similar to tuberculosis and all the patients of IC were being treated as tuberculosis of genitourinary symptoms. However, now the awareness about IC is increasing in INDIA. Awareness amongst Urologists is good but poor amongst Family Physicians, Gynaecologists, General Physicians and Surgeons who see most of these patients first.

Q) When did you first diagnose IC?

A) My tryst with IC started when some of the patients diagnosed as tuberculosis and adequately treated did not respond. I did augmentation cystoplasy in one of these patients for thimble bladder and realized that the patient did not have thick fibrous thimble bladder but some other pathology. This is how I made my first diagnosis of interstitial cystitis I have treated around 900 patients of IC till 2015. In India male to female patient ratio is 2:3. 

Q) What are the symptoms of IC?

A) The symptoms of IC patients are by no means uniform. These symptoms are related to urological, gynecological, gastrointestinal and pelvic floor organs. The hallmark of IC is a triad of pain, frequency and urgency. Pain is the most important symptom. Pain is felt in urethral, genital and /or rectal regions.  Pain may be continuous or related to the micturition cycle. Sometimes patients cannot define the exact location of pain and feel it is situated deep in the pelvis. Some patients mention burning, pressure sensation of urinary discomfort instead of pain. Males may complain of painful ejaculation while women present with dyspareunia.

Frequency more than eight times is considered abnormal. While most of the patients with IC have frequency and urgency, it is not a must. Patients with normal frequency and without urgency can also have IC. Nocturia may or may not be present. In other words, patients can have a variety of different symptom combinations.

Initially a patient may have only one symptom and develop the fully-fledged syndrome over a span of 5 years. IC is a chronic disease, so the above-mentioned symptoms must be present for more than 4 weeks to diagnose IC.

Q) IC is often confused with UTI- your thoughts.

A) As the symptoms are same IC always looks like UTI. Infection gets treated with antibiotics but IC persists. IC should be considered if symptoms of Urinary Infection continue for more than a month. IC should also be considered in those patients of urinary tract infection who do not improve after adequate therapy.

A typical patient of IC may present with triad of pain frequency and urgency but few patients may present with unusual symptoms like incomplete evacuation, dribbling, desire to pass urine immediately after micturition, difficulty in sitting and walling with urinary symptoms, anal discomfort. These symptoms are not mentioned in the standard textbooks but patients commonly complain like that. I feel that these symptoms must be included in the textbooks. These symptoms are not due to obstruction but they are felt by the patients as they pass little amount of urine every void and have problems of increased sensation. 

Q) What are the investigations required to ascertain IC?

A) On examination, the patient is essentially normal except for suprapubic tenderness or anterior vaginal wall tenderness in females and prostatic tenderness in males.

Urine analysis, urine culture, and sonography of kidney, ureter and bladder are important investigations for the exclusion of other diseases with similar symptoms. On ultrasonography, presence of a small capacity bladder (normal bladder wall thickness) with normal upper tracts should raise the suspicion of IC. I do urine routine, urine culture and sonography in all the patients and if they all are normal I subject the patient to cystoscopy and hydrodistension. 

Voiding diary, urodynamics, potassium test and symptom scales are not routinely done in all the patients. Voiding diary can be helpful  in a patient where there is doubt about the voiding pattern as it shows that patients void small quantities every time. Some of severe cases of IC may void 50 times in the day. 

In my practice I never do Urodynamics and PST. There is no role of CT Scan or MRI and should not be done. Urodynamics and potassium tests are not very important and are considered optional tests. It is believed that urodynamics does not give any additional information and should be reserved for those patients where OAB is also suspected. Intravesical PST (Potassium Sensitivity test) detects the permeability of bladder epithelium.  This test has been shown to be positive in 75% of patients with IC and is also positive in patients with detrusor instability, radiation cystitis and bacterial cystitis.  This test is not diagnostic of IC. It has its own drawbacks and is painful. PST is therefore not recommended.

 

Q) How important is Cystoscopy and hydrodistension for IC?

A) I am a strong supporter of Cystoscopy and therapeutic Hydrodistension.

Cystoscopy with or without hydrodistension is a very controversial investigation. While Europeans feel that cystoscopy with bladder biopsy is essential to diagnose IC, others feel that there is no need to perform cystoscopy.  In the presence of hematuria, cystoscopy becomes mandatory to rule out malignancy in patients over the age of 40 years. Glomerulations are present in around 80 percent cases of IC.

 I use a protocol of staged treatment. All the patients are subjected to cystoscopy and therapeutic hydrodistension after their urine culture, urine routine and sonography are normal. Hydrodistension is a very controversial modality of treatment but gives immediate relief in most of the patients. A few patients also enjoy long-lasting benefit. If a patient remains symptom-free after hydrodistension for more than a year, it can be repeated when the symptoms develop again. On cystoscopy under anasthesia if patient has less than 150 ml capacity he is advised for surgical therapy.

Only Cystoscopy can detect Hunner's lesion . Hunners lesion can be treated. 

Q) What is the standard treatment for IC?

A) As the etiopathology is multifactorial, it is logical to treat the patients with multimodal therapy. Treatment options available are hydrodistension, oral therapy, intravesical therapy, intravesical botox injection, interstim, fulguration and resection of Hunner’s lesion, behavioural and physical therapy. In India botox has not been found effective and there has been no experience of interstim.

The problem with BPS/IC is its uncertainty in responding to treatment. There is no way to know which patient will respond to which treatment.  A staged treatment policy has been our standard approach with all patients treated with the same protocol. Staged therapy has been followed over the last 15 years and minor changes are made depending on advances in understanding the disease, the response of the patient and the availability of the therapeutic agent. The AUA guideline 2011 recommended staged therapy as the preferred way to manage BPS/IC. We have no experience of physical therapy behavioural therapy and interstim so it is not included in our protocol. Similarly we have not found intravesical botox injection effective so have removed it from our protocol and do not offer it to the patients. Behaviour modification and stress management are first line treatments as per AUA guidelines. Physical therapy is mentioned as 2nd line therapy in the same guidelines.

Q) What are the oral drugs recommended for IC?

A) As there is no cure for patients of BPS/IC, the aim of management is to decrease the symptoms and make the patient comfortable. Oral drugs include:

 Amitriptyline hydrochloride, Hydroxyzine hydrochloride, Gabapantin , Pentosan Polysulphate and Cyclosporin are important oral agents. Recently doubts have been raised about effectiveness of PPS.

Q) What are the dietary changes advised?

A) In India some patients get flare up with very spicy and hot food. No diet related cause is found in most of the patients. Normally all patients are advised to drink less fluid and it helps them but some patients can’t tolerate concentrated urine due to less water intake and forced to drink more water.

Q) Tell us about your experience at your Centre.

A) From 1993 to December 2014, we have seen around 900 IC patients and performed cystoscopy in 316 patients (196 women and 120 men). Female to male ratio is 3:2. Recently 133 patients seen from 2001 onwards were contacted and asked about their present disease compared to initial presentation. Mean follow-up was 6.8 years. Four patients had died so we have follow-up details of 129 (79 women and 50 men) patients over a period of 14 years. The response was evaluated using a Global Response Assessment (GRA) scale. A total of 58% had excellent improvement, 22% patients had no improvement or worsened, 9% had mild improvement and 13% moderate improvement. These patients were treated with modalities of treatment which were available at the time of presentation. PPS only became available in India in 2010.

The patients are subjected to re-hydrodistension if they have done well for more than a year on previous hydrodistension and other therapies are not working. Experience with botox injection is not good. We have not seen typical Hunner’s lesion in our patients but have seen red patches in three cases. Interstim (neuromodulation) has not been performed in any patient. Around 8% of patients had less than 200 cc capacity bladder on distension under anaesthesia and have been advised surgery. We have done augmentation cystoplasty in five patients with refractory BPS/IC with excellent results.

Q) Being a pioneer in IC treatment in India what would be your advice to other doctors dealing with IC patients.

A) My first advice would be to be empathetic towards the patients and follow these guidelines:

·     Suspect IC if patient prefers to move by train over road transport as toilet facility is available in train.

·     Patient goes to toilet during consultation with physician.

·    IC can be present even if cystoscopic findings are normal.

·    IC can be present in normal capacity bladder.

·    Do not say to the patient that he/she does not have any disease as all the reports are normal.

·    Do not send the patient to psychiatrist.

·    Do not do anything which causes pain to the patient.

·    Do not do hysterectomy for urinary symptoms.

·    Do not follow NIH 1987-88 guidelines.

·    Do not do cystoscopy without anesthesia.

·    Do not hydrodilate bladder at the time of cystoscopy by increasing the height of the reservoir.

 

Q) What else do you think is required for IC? 

A) A big change is needed in the IC world. There is a need to draw up a definition and establish criteria for the disease. It is also believed that the new definition and criteria should be evidence-based and should not be only opinion-based. All the researchers agree that it is very difficult task but that a start has to be made. Until the final diagnostic criteria are established, there is a need to work together. There is a need to follow a common algorithm so that a large amount of data can be collected and compared. There should be a working algorithm for history-taking, physical examination, investigations, cystoscopy, biopsy and treatment. Furthermore, basic research has to be done to find cure for this debilitating condition. Even in mid of 2015, no consensus on name, definition, etiopathology and management of BPS/IC exists. Advances in molecular biology point to inflammation as one of the etiologies. It is hoped that these advances will lead to the development of novel therapies and delivery methods to treat BPS/IC. It appears that a lot of research has been covered, but a great deal is still needed to reach the ultimate goal.