ESSIC Conference 2018- Florence, Italy

The ESSIC annual meeting 2018 was held in the picture-perfect city of Florence, Italy. The Auditorium Al Duomo was thriving with doctors, researchers, patient leaders and patients from all over the world. The dates November 29- December 1, 2018, was packed with presentations on Interstitial Cystitis/Bladder Pain Syndrome. The meeting chair was Giulio Del Popolo and ESSIC coordinator was Mauro Cervini. The local scientific committee included Vincenzo Li Marci, Sergio Serni, Alessandro Giammo, and Stefania Musco.

Dr. Rajesh Taneja represented India. He is a Senior Consultant and Coordinator in the Urology and Robotic Surgery department of Indraprastha Apollo Hospitals, New Delhi. He is also a member of ESSIC Board. He inaugurated the meeting by reading out the highlights of the ESSIC Kyoto meeting that was held in April 2018.

Dr. Rajesh Taneja

The second session focused on the question if Interstitial Cystitis be considered a rare disease or not. In this session, Dr. P Hanno emphasized the importance of phenotyping in diagnosing IC. Prof Reidl from Germany gave the statistics of the prevalence of IC in North America, Asia, and Europe with special emphasis on countries like the Netherlands, USA, Denmark, Japan, China, and Finland. He also gave a race-based statistics about the prevalence of IC among Black, White and Hispanic patients. There were around three presentations on the ERN project and eUROGEN or the European reference network for rare and complex urogenital diseases and conditions. The veteran patient advocate from Netherlands Jane Meijink talked about the problem of non-reimbursement of treatment of IC/BPS patients. She was talking about the pathetic conditions in affluent countries where patients are not able to receive the best treatment. So we can well imagine the condition of third world nations.

Jane Meijink, Patient Advocate, IPBF, Netherlands

Jane Meijink and Balaka Basu

The third session focused on the guidelines that should be followed to diagnose IC/BPS. The fourth session was on IC/BPS and infection. A lot was discussed about microbiota. It was also said that urinary tract infection and IC/BPS can coexist.

The fifth session was about IC and co-morbidities like IBS and hypertonic pelvic floor. The sixth session discussed the role of cystoscopy and bladder wall biopsy in the diagnosis of IC. The seventh session focussed exclusively on endometriosis. The eighth session discussed the role of central sensitization, the role of neurodulation and botox in treating IC.

The ninth session was a free communication session. In this session, Balaka Basu the founder of Interstitial Cystitis India (ICI) spoke about the challenges of running a support group in India. She also spoke about the unique problems that Indian patients face. Dr. Sandor Lovasz from Hungary demonstrated a device for self-instillation and self-catheterization for female patients with IC. Dr. Taneja discussed a patient who came to his tertiary clinic with unique symptoms that could be or could not be IC.

Dr Reidl moderating the ninth session

Balaka Basu, Dr. Rajesh Taneja, and Dr. Sandor Lovasz

On the final day of the conference, Dr. Hanno discussed phenotyping. Dr. Robert Moldwin and Jane Meijink spoke about the role of diet in IC/BPS. Dr. Gori discussed how psychology and sex affects an IC patient. In conclusion, ESSIC president Dr. Wyendale discussed what would ESSIC be developing in the future. With this, the conference of 2018 came to a conclusion. In 2019 ESSIC would take place in Amsterdam.

Patient Leaders Gail Benshabat (Canada), Vicki Ratner (USA) Balaka Basu (India)

Patient leaders from across the world

Journey of an IC Patient- From Hopelessness to Hope

Bharti Kataria is a homemaker from Delhi. She used to be an avid reader and loved to drive but her life changed ever since she was diagnosed with a urinary tract infection in 1993. She was an extrovert but frequent trips to the washroom turned her into an introvert. She became conscious about her condition and stopped socializing.

Bharti Kataria’s main problem began somewhere in 1998 when she was diagnosed with a urine infection. Her gynecologist ruled out routine and culture test and prescribed anti-biotic. The infection was cured but the pain and burning sensation never left. Every time she discussed this with a gynecologist or a physician or an endocrinologist, routine and culture tests were done, antibiotic prescribed but it only provided temporary relief. She was put on anti-allergens like CETRZINE, ATARX , AVIL , allegra , citralka , renalka, but nothing ever helped. Trips to washroom used to be so frequent and painful that she used to deliberately hold for hours and avoided going frequently. Until one fine day when she could not pass urine no matter how hard she tried.

It was now in December 2008 she met an eminent IC urologist in Delhi. Without wasting any time a cystoscopy was done. She was diagnosed with multiple cysts. The stricture cyst was removed but the stricture meant that now she had to live with weekly dilatations. In 2009 another cystoscopy was done but her condition didn’t improve.

In 2010 helium laser was done. She got rid of weekly dilatations but not the pain or the burning sensation. Her doctor then advised avoiding certain foods & drinks that had artificial sweeteners, colors, preservatives, sauces; exotic fruits. In 2013 again a cyctoscopy was done but this time she could not pass urine after it. A urine bag was attached to her. She went into severe depression, stopped eating and drinking. After seven days she could pass urine on her own and the bag was removed.

After this, she was prescribed Pentosan Polysulphate. The medicine had to be ordered directly through the pharmaceutical company and was delivered at the doorsteps since it was not available in the retail market.  Thankfully, the medicine started showing its effects but she developed side effects like weight gain, hair fall, lack of concentration, and even about bad reflexes

She was asked to continue with this medicine for 6 months at a stretch. In these 6 months, she got rid of all the pain, discomfort, and burning sensation. She is in remission since then and hasn’t faced any major issue. Today she tries to follow the IC diet, exercises and is an active member of the IC Patient Support Group. She also shared her experience in ESSIC 2016 that was held in New Delhi.

YouTube Channel of Interstitial Cystitis India

We are proud to announce that we have started our Youtube Channel. If you are an Indian IC patient then do subscribe to our channel for more information. We have already featured Rajesh Taneja who spoke on Indian diet.

We also invited Dr Sandor Lovasz from Hungary to speak on his pathbreaking instillation technology for IC patients.

Founder of Interstitial Cystitis India Forum Ms. Balaka Basu also delivered a lecture in the recently concluded GIBS on the role of support group.

Journey of an IC Patient from Darkness to Empowerment

Bharathi Shiva is a 43 year old social worker who is suffering from Interstitial Cystitis since 1992. She is associated with Centre for Vocational Training for Special Needs Adults. Her 18 year old son is autistic and she is working with other parents of autistic kids to set up a sheltered employment set up for Adults with Autism. She has masters in Social Work. She has worked with NGO's and organisations in Mumbai, like YUVA and TISS. She lives with her two sons and husband in Mumbai. Her husband is in the shipping industry. Today she talks about her IC journey since 1992 and how she feels empowered now after finding this support group.


IC Journey of Barathi Shiva

I did not have any urinary problems at all as a child. My mother used to tell me I was toilet trained by age two. No bed wetting issues. Growing up, I was actually blessed because I did not have the inconvenience of wanting to go the bathroom often. It was the other way around. I had to remind myself to go. Till 17 years, I would go to the toilet only 3 times a day. On waking up, when I got back from school around 4 pm and night before sleeping. I would be in school or outside the whole day without going to the loo. I had no problems on that front.

But overnight all that changed. It was Nov 1992. I was 17 years old. I remember very clearly, one day feeling a pain in my bladder and feeling of heaviness and fullness. It would go away if I urinate. But sometimes the ache would return almost immediately. This was the beginning of my long battle with IC. I used to have constant bladder pain relieved by Urination. On many days the pain would start immediately again even after passing urine. My bladder felt like a balloon filled with water beyond capacity yet getting filled up more, such was the pain and pressure. And if I did not use the toilet to empty, the pain would turn into a burning pain.

I just could not understand what was going on. I went to several doctors, did various tests. Sugar, urine culture, kidneys, X-ray with a special dye, everything showed normal. But my life was thrown off balance and I was only 17. Doctors started telling me it was psychological. They told me to train my bladder etc.

But none of that would work. Today I understand that training the bladder doesn’t work with pain. It can probably work with frequency or urgency. How do I train my bladder not to be in pain?? If I knew that I would be celebrating like I won the lottery!

Anyways back to 1992-1993. It was established that there was nothing medically wrong with me. I felt all alone. Nobody seemed to understand what was going on with me including myself. My parents were relieved that it was not a major illness. They said at least the reports are normal. Doctors told me to take it easy. But my life was hell. Not just the physical pain but the emotional pain was even more.

Firstly it was highly embarrassing. At 17-18, the last thing you want talk about is the toilet. It was just so unattractive. I hid it from my friends. I did not want them to know or find out. I would wait till no one was around in college to use the toilet. I did not want anyone see me go to the toilet. That age is such. You don't want anyone to know there is something wrong with your body.

So outwardly I would to lead a normal life masking my pain. I would, laugh, act normal, go out etc, but all the time bearing the pain and of course disturbed sleep. The first year and a half were the worst. Then by the third year the intensity lessened. There used be days when I would feel pain, go to the toilet to get relief, find no relief, go to the toilet again and yet no relief. Like in an hour I would be up every 5 minutes running to the toilet in a desperate attempt to lessen the pain. Then it would naturally subside after a day or two. Other days too pain would be there but it would give me relief or I would be pain free for about an hour or even two. Then again the pain would start and I would empty my bladder and be pain free for another hour or you. Then in 1996, after 4 years my condition improved tremendously. It seemed the worst was behind me. While it never went back to being what it was till I was 17, it was at least manageable. On good days I would be able to have 4 hours without pain. But nights were always worse than mornings (even now). That’s because when it’s time to rest we have to get up often.

So while after four years it subsided, for two years, it did come back again. It would fluctuate between good days, terrible days, bad days, ok days. Yet nobody could tell me what’s wrong with me. I tried Ayurveda, homeopathy. No luck. Life went on. Got married, had kids. Pregnancy did not increase or decrease my condition.

All this while nobody knew what was going on with me. Because even I did not know what it was. What do I tell others? Outwardly I was leading a normal life. Pain, going to the toilet to relieve it became a part of my everyday life. It was good as long as I had access to toilets. It was annoying but at least I could get immediate relief. But while travelling, long distance bus or car travel, even watching movies on theatres, many a times i would be in pain for long hours.

One thing I kept doing in between all this was that I never stopped trying to find out what my condition was. Then in the year 2011, while I was Googling again I found the term Interstitial Cystitis. Hurray, I shouted finally!!!! My condition has a name! It was a euphoric moment. Only to end in DEEP DISAPPOINTMENT- No cure. I remember crying bitterly that night and getting so depressed.

But internet was my saviour. Slowly I found a few others with similar conditions, all outside India. I got in touch with them. Read their blogs. Then with FB and Twitter I joined IC groups and followed them on Twitter.

Once I knew I had IC I also went to Urologists in Singapore. The first time I went the doctor looked at me and said you can’t have IC. If you had you wouldn’t be able to sit and talk. For one month he treated me for overactive bladder. Then he said yes looks like you have IC.

But the diagnosis did not translate to cure. Life with pain continued like before. I used to think I was the only Indian with IC. None of the groups I was in had Indians. They were either US or Europe based.

Then in Nov 2017 I stumbled upon IC India Forum. It was truly a jaw dropping moment. I couldn’t believe my eyes. From then on I have come a long way. With the forum I see more and more Indians facing the same issues. Now I feel connected and relieved. I have found a new family. Finally there are people who understand what we are saying. Believe us and support us with compassion. We have faced so much flak from doctors. Many don’t take us seriously. They cut us off. They are condescending. They dismiss us. So this support group is very empowering.

Interview of Pain Specialist Dr Mahesh Menon

Pain is an integral part of interstitial cystitis however it is grossly overlooked in India. An IC patient can benefit a lot from pain therapy. Today we bring an interview with Dr Mahesh Menon, eminent pain therapist from Mumbai on what role pain management plays in treating IC.

Dr Mahesh Menon treats patients suffering from any chronic pain (pain lasting longer than 3 months). He has trained in Mumbai, and has a fellowship from Singapore and is the first Indian physician to be awarded a European diploma in pain medicine. He currently practises at Kokilaben Dhirubhai Ambani Hospital and medical research institute and handles the Pain and Palliative Care Centre. 

1.       What is Interstitial Cystitis from the perspective of a pain therapist?

Interstitial cystitis is a poorly understood medical condition which causes pain and difficulty while passing urine. 

2.       What kind of pain affect IC patients?

Patients suffering from IC have pain during passing urine, the flow of urine may be very poor and they may take a long time to completely pass urine. In addition, there is an increase in the number of times they may have to visit the toilet to pass urine and there may be a severe pelvic pain.

3.       What role does a pain specialist play in treating IC?

Pain is a central theme in this poorly understood disease. Pain causes a significant impact on the patient's quality of life.  This condition responds poorly to treatment and not much is known about it. Even the American Urological Association (AUA) guidelines mention the role of pain management.  It is very important to keep the pain in check so that these patients may have a good quality of life. Pain specialists with an expertise and aptitude in treating chronic pelvic pain may contribute to this neglected aspect of patient care, so that these patients may suffer less.

4.       Is the pain related to Interstitial Cystitis acute or chronic?

There are acute episodes of pain in patients with interstitial cystitis, and there are different ways in which patients experience symptoms. Some patients may get episodes of pain (acute, and lasting for brief periods with flare-ups). Some patients may continue to keep getting the pain, and if the pain duration crosses three months, it is labelled as chronic pain. In addition, chronic pain has other features like impact on mood, function and activity. 

5.       What kind of pain therapy works for IC patients?

There is no definite "pain therapy" for IC patients because every patient is different when it comes to pain. For some patients, medicines work well. For some patients, physical therapy may be advised. For some patients, specialised injections called 'pain blocks' may have to be tried to relieve the pain. Usually, a combination of these modalities is used to help the patients in pain. This is in addition to the role of professionals to help with the psychological distress caused by these pains.

6.       Are there any OTC medicines for IC patients for immediate relief?

Paracetamol is a simple OTC medicine, and it may be taken three to four times a day- preferably after speaking with the doctor. However, OTC medicines do not impact pain in IC because of the severity of the nature of IC pain.

7.       What could be the possible side-effects of OTC medicines?

Liver failure, acidity and kidney failure (since some of the NSAID group of painkillers are also available as OTC in India).

8.       Is there any non-opioid medicine currently available that are used to relieve symptoms caused by irritation of the urinary tract such as pain, burning, the feeling of needing to urinate urgently or frequently, and bladder spasms?

Certain antispasmodic medicines work in IC and may be prescribed by the Urologist. There is a specific medicine for patients with IC which has been studied in trials, called Pentosan Polysulfate which helps with symptoms of IC.

9.       Medicines that are applied topically as gels, creams, suppositories, and patches, often cause fewer systemic side effects. Could an IC patient use a combination of topical medicines to get relief?

Not for the superfical pain. Intravesical application (applying lignocaine and topical agents inside the bladder) helps in some patients in pain relief. There are patients who instil agents by putting a catheter inside their urinary bladder themselves (self-catheterisation). This would require a high level of coordination between the patient and the treating team to facilitate education and empowerment of the patient.

10.   Are Lidocaine and topical amitriptyline useful and available in India?

Lidocaine and topical amitriptyline are available in India, but may not be useful for IC. However, intravesical (applying lignocaine and topical agents inside the bladder help in some patients in pain relief)

11.   Are narcotic pain medicines advisable for severe IC patients?

In select cases, yes.

12.   What could be the pros and cons of using narcotic pain medicines?

Pros: If the medicine works, there is one useful tool to help patients get back to a good quality of life.

Cons: The biggest fear is dependence on the medicine and thus causing a new problem altogether in addition to the existing problems of IC. The other problems include constipation, nausea and sedation and an impact on breathing, called respiratory depression.

13.   Could you suggest some home remedies to get pain relief for IC patients?

NO.

14.   What is Pelvic Floor Dysfunction (PFD)? What are the signs and symptoms?

Pelvic floor dysfunction is a broad term to involve conditions affecting the activity of the pelvic floor. Simply speaking, it refers to conditions with overactive bladders, poor control over the evacuation of urine or stools, or sexual problems.

15.   What is the relation between IC and PFD?

Patients with IC may have an underlying PFD in addition to their IC.

16.   What are the external physical therapies that can be used for IC patients?

TENS is a modality that can help with IC. In addition, pelvic floor exercises can help patients with IC.

17.   What are the internal therapies that can be used?

Intravaginal electrical stimulation can be used as a part of the treatment of chronic pelvic pain. In addition, some physical therapists do pelvic floor manual therapy to release trigger points, help reduce pelvic floor muscle spasm etc.

18.   What kinds of devices are used by physical therapists for IC patients?

In India, TENS units.

19.   Would you advise Neuromodulation for IC patients?

For refractory patients, yes.

20.   Could you suggest any Physical Therapist in India who is skilled in treating IC patients?

NO.

Why India Needs A Support Group for Interstitial Cystitis Patients

In 2015,  when I was diagnosed with Interstitial Cystitis my first reaction was to find another patient who suffered from the same disease. The name Interstitial Cystitis was so alien that I almost felt I was the only person suffering from this disease.

I randomly started searching the internet to look about the disease and also find fellow sufferers. I started sending random e-mails to whatever email ids I came across that were even remotely associated with IC. I started sending emails to doctors, pharmaceutical companies, and IC support groups abroad. Thankfully, I received replies from most of them.

I also joined quite a few groups on IC on Facebook. I used to search for Indian patients in those groups but hardly could find one. But luck struck one day and I found two Indian patients in one of the Facebook IC group. This was the informal beginning of Interstitial Cystitis Patient Forum. Three of us formed a Whatsapp group and started this blog. Gradually more patients got added to our group and today there are almost 350 members in our group.

Why do Indian IC patients need a Support Group?

 Interstitial Cystitis is a relatively rare disease in India. Apart from Urologists, other doctors are unaware of this disease and patients often waste months and years looking for a good doctor, proper treatment and therapy. This is precisely where support groups come into action.

1)     Get in touch with Doctors: A support group can help patients get in touch with the right doctor with proper knowledge of the disease.

2)     Understand Medical Tests: A support group can help you in understanding the various tests like Cystoscopy, Hydrodistension or Urodynamics studies. Often doctors do not have the the time or patience to explain all these to the patients. Searching on the internet can often be complicated and confusing. However, Support group members can explain this nicely.

3)      Dietary Advice: Diet plays an important role in treating IC. Most patients are confused about the elimination diet and feel frustrated. But, Support group members can guide you in the proper diet through their tried and tested experiences.

4)      Exercise Tips: Exercise also plays an important role in treating IC. The support group can help you with proper exercise methods.

5)      Home remedies: I believe the best thing that support groups do is help you with the alternate method of treatment. Here you can get nice tips on home remedies and also learn from other members what works for whom.

6)      Depression and Anxiety: By talking to another fellow sufferer a patient always feels better. The patient feels good to know that there are other people suffering in the same way. Talking is the best way to deal with depression and anxiety and Support Group helps you with that.

7)      A Friend to talk to: Patients often feel extremely lonely, because they often feel that their family, friends and doctors are not understanding their problems. Often there are times when a patient just needs to talk to someone who would listen to him/her with compassion and empathy. In a support group, there are always people to hear you and empathise you often making you feel better and relaxed.

8)     Support to Family Members:  In many cases support groups even extend their support to the family members of the patient. They often talk to the family members and explain to them the disease and how to deal with the patients.

9)     Acquire Medicine:  Often IC medicines are not easily available in retail. A support group can help you in contacting the proper dealer for the medicine

10)   Stay Abreast with latest in IC: Seminars, webinars, Facebook live organised by IC support groups are often the best platform to share your experience and learn about the disease and how to deal with it. Here the patient can also learn about the latest research inferences on IC.

If you are suffering from Interstitial Cystitis or suspect that you have interstitial cystitis then please feel free to join us. 

ESSIC 2017- Budapest

ESSIC 2017 was held in the Hungarian Capital of Budapest.  The highlights of the meeting were to decide the right nomenclature for Interstitial Cystitis/Bladder Pain Syndrome. While a part of the medical researchers insists on naming it Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) the other half want it to be called Chronic Pain/Chronic Pelvic Pain Syndrome. Refer to the following screenshots for better understanding:

In this meeting, a step by step guideline was also given to diagnose IC/BPS. Often diagnosing the disease becomes a challenge for the medical practitioner. But hopefully the following slide would prove helpful:

Often men are neglected as IC patients because it is believed that 80% of the IC patients are female. The following slide would explain the prevalence of IC in men.

The meeting was represented by Dr.Rajesh Taneja from India and Ms. Balaka Basu represented the patient forum of India. It was a great opportunity to meet medical practitioners, researchers and patient's representatives from all across the world. Dr. Taneja spoke about the importance of diet is managing IC/BPS. He corroborated his research with case studies.

Dr. Taneja delivering his speech

ESSIC 2018 was a brilliant opportunity for patient forums from all over the world to meet. There was a dedicated session for patient advocacy. Jane Meijink, the patient representative from the Netherlands, presided over the session. Gail Benshabat from Canada shared a heart-wrenching story of she lost her daughter Liza to IC. The entire auditorium was in tears after her speech. Representatives from Italy, Spain, Israel, and India also share their experiences.

Jane Meijink, Dr. Robert Moldwin and Dr. Rajesh Taneja moderating the patient's session.

Gail Benshabat 

The ESSIC 2018 meeting was held at the prestigious Hungarian Institute of Sciences. It was a grand building overlooking the Danube.

Hungarian Institute of Science

Here are few photos of the delegates from the meeting.

L-R- Balaka Basu, Jane Meijink, Gail Benshabat, Dr. Lovaz Sandor, Dr. Robert Moldwin, Dr. Rajesh Taneja

Jane Meijink and Balaka Basu

Prof. Lovaz Sandor

The patient representatives from India, Israel and Canada

Some entertainment with Hungarian folk performers

ESSIC 2019 will be held in Florence from Nov 29- Dec 1.