Monday, 5 October 2015

My story and struggle with Urethral Stricture

I am sure there are a lot of people who are struggling to find some cure or resolution of urethral stricture problem. I was one of you one year back.

I am a woman and last I checked I celebrated by 33rd birthday. I don't remember when it really started but i was kind of prone to Urinary infections. I am not very good with completing the whole english medicine cycle/course and the moment i get better i would skip the medicines. One more good practice is to test for urinary infection again for any residue after completing the course. You can again imagine i never did that.

So you can now imagine me as a careless person as a younster. I remember my first major infection when i was about 22 years. Doctor diagnosed it incorrectly and treated with a complete different set of antibiotic because he did not perform urine culture test.

After that although i took the right treatment but i guess damage was done. The problem resurfaced around 7 years back. I was getting frequent urinary infections for which I took english medicine or allopathic treatment judiciously however after some time i started to go to washroom more and more often.Urination frequency increased to around every 10 mins, that's when i visited the Doctor. Doctor gave me "Urivoid" which basically helps to induce bladder to void urine. It was a long course but i was ok after taking it for 3 months or so.

We moved to Dubai and after around 1 year or so I again started feeling it. I had to travel to office for around 1.5 hours and it was too much for me to sustain for that long. I would time it perfectly to use the washroom just before i leave and seconds after i arrive. It's not a good feeling to be concious all the time that anytime anywhere you might feel the urge and there wont be anyway around it. Also the problem is that when you have that urge you can't stop it. It could even get embarrassing. Believe me It has happened not so obvious to anyone but I know..

Next time I went to doctor he prescribed catheter dilation. It was starting of another nightmare as i can recall. First time it was a complete procedure and anaesthesia was administered. I dont know what really happened and doctor never told me except for asking to me to trust him and mumbled some jargons which i never understood.

I felt ok and relieved for one full year and then the symptoms started appearing again. I recall i was furious, disappointed and frustrated with these recurrences and  then i went to see another doctor. This doctor however took time and explained me that it's normally a men's disease and old woman's disease. It normally doesn't happen in girls of my age. He did try a couple of options like doing catheter dilatation every week and slowly increasing frequency to once in 4 weeks. He told me i need to maintain at 4 weeks duration as that was the time i would start feeling the symptoms again.  It was definitely inconvenient to go to the hospital and do the procedure every month but looked like I didn't have any options.

I am boring you with my story because I want to give you a clear picture of what i underwent, what  my medical condition was and what i did in last 10 years struggling with this problem. Sometimes i think may be problem was stricture all along and because of which i was prone to infections but that can't be tested now as i never underwent any test for that.

We moved to Singapore and there i saw a urologist in one of the prestigious hospital. First time she conducted the test to see how bad is my stricture. It was by entering a small camera through urethra. Result of the test was that i have stricture just at the neck of bladder and urethra. She also told me that my bladder looks old like a 70 year old lady. Bladder walls are week and we can only try to keep it at this stage and there's NO CURE.

My heart sank. I can imagine what people with incurable disease feel like. The whole life spins around you and you feel you haven't done anything yet. There's so much more to do. I didnt tell the whole story to my parents also as i dont have it in me to say it out loud. Only my husband was with me constantly encouraging me, assuring me at all times. Even till today my husband talk about it with my family and his. I still dont have it in me.

Anyways Doctor taught us self catheter dilatation. My husband learned it and he would do it for me. Doctor again started incremental cycle to do it every 3 days and then move on to two weeks. She asked us to continue doing it every fortnight. Period wasn't chosen by doctor but she told me to follow your body. I myself identified that 2 weeks was a sustainable period. If I leave it for more time i wasn't comfortable with frequency. In Singapore also you have to travel a lot but good thing was, in case of emergency you could get down at any station and use the washroom. Life was liveable for 2 years after which my dilatation frequency started to reduce to around 3 days. 2 weeks time was short enough. Its a painful procedure and it takes around a day to recover with all the pain killers, 3 days was too much for me. I was thoroughly depressed everyday, scared of every third day when i have to do the procedure. We consulted doctor again but there's NO CURE as we were told earlier.

I started to do my research on internet about permanent cures. Not that i hadn't done it before but results were all the more depressing so i never got the heart to do a proper research. I again got a lot of depressing results from surgically planting a tube in bladder and a lot more. Cures were more frighting then the situation I was in at that time.

I also started looking at alternative therapies for this issue. I came across a lot of sites and contacted a couple of doctors. Based on their responses i selected two doctors. One was Ayurvedic Doctor and another one was Homeopathic. Well these two are quite established alternative therapies atleast in India. We rely on these two from simple cold cough to major illnesses but they are slower than english medicines that's why not as popular as allopathic medicines.
I contacted Dr Rohit Jain in Delhi over email and phone. He took my whole history and profile and sent me medicines in Singapore. After around 2 to 3 weeks of taking medicine my duration of dilatation became around 1 week from 3 days. That time i felt a small ray of hope to be Normal one day however one week was maximum i could sustain.

I left my job in Singapore and my husband took a long leave to travel to Nanded where Dr Sunil Kahalekar is based. We met him and explained the issue. He prescribed some regular tests for infection and conducted uroflow test himself. Uroflow test is to check urinary stream and volume.
He normally treats men for this problem but I was one of the rare female patients he gets only once in a while. He is a very learned man. Before coming to Nanded, i did my research on him. He has written a research paper on stricture with around 100 test subjects he has treated.

He did not perform any intrusive dilatation on me and only  injected oil and herb medicines through urethra. He basically used a syringe without needle and inserted inside urethra about 1 or 2 cms. After that he would push the whole concoction inside with force. I was supposed to lie down for 1 to 2 hours so that the medicine remains inside and only after that i could use the washroom. It is called Oil dilatation. Herbal concoction will slowly remove the stricture. As it is forced inside the bladder, everytime i urinate, the concoction will work. Doctor explained me that catheter dilatation is an intrusive process which scars the tissue more everytime we do it. As it is used with force, tissue also grows back more forcefully however oil dilation is a slow process and tissue takes time to grow back.

I took around 10 sessions, one session a day. One session takes only 10 mins. It's a painless procedure and with doctor's medicines it does not pain afterwards as well. Uroflow at the end of 10 days was much better than before. It wasnt perfect ofcourse but it was quite ok. I did that procedure on 19th December 2014. After that I was NORMAL untill June 2015. I did not perform any cathethral dilatation. June 2015 i started to feel that things are slightly getting worse. It wasnt very bad but i got paranoid from my past experience and straight away went to Nanded again. I took 10 more sessions of same procedure and since then i don't have much problem. Somedays i do feel that bladder is not voiding properly but after a while it becomes ok so I am not counting on that.

Doctor told me I am maintaining well as he was expecting us after 3 months or so. He said initially we might need to do procedures once in 3 months or 6 months and slowly it will either be cured permanently or an yearly visit may suffice depending on person to person.

Based on what i have gathered from talking to staff is few people are cured in first time itself ( one full set of 10 to 15 sessions ), Some people return in 3 months 6 months or so.. After that they never return.

It's been three months since my last procedure in June and I am doing ok. I haven't gone back to working though, but i am planning to go back soon. It's not perfect as of now but probably it will never be but I am happy as far as it is bearable and does not impact my normal life.

Apart from ayurvedic procedures, I have continued with Dr Rohit's medicine and give him a regular feedback on my report. He sends medicines based on that. Well to be frank I am not sure what has helped me more but i dont want to leave anything to chance.

In last one year I learned pranic healing from Master Chua Kok Sui foundation in India. I completely believe in it and whenever i feel bladder is behaving strangely, i do self healing. Infact most of the time i ask my husband to do so as he has also learned it with me ;) (being a lazy person) .
It helps instantly, infact you can see results the next day itself however we have to do it regularly for a year or two i guess to get some permanent relief. I am trying to make it my daily routine without any interruptions. Half an hour of pranic healing is much better than catheter dilatation.

So you can see I am doing three alternative therapies in parallel currently. I am sure ayurvedic procedure could be enough but from my experiences, i dont want to leave out anything which can help. My last catheter dilatation was on 20th November and I am going to celebrate this day this year.
Well I am not sure, if it will last long or will I go back to same situation one day but that day is not today and I am positive I will maintain and keep it. I will keep seeing doctor Sunil once in a while and keep updating this blog in case there's any update.

Yes, I have used an alias as i still dont have any heart to talk about it but i could gather courage to write about it because I want to tell my story to people who are as disheartened and as dejected as I once was when doctors told me THERE'S NO CURE.

I would love to be of any help in case you need. You can send me an email and I will respond to your queries. I am providing details of Doctors below in case you want to contact them.

Dr Sunil kahalekar
He visits Pune, Mumbai and Aurangabad quite frequently. You can get all other details from the website. It's a small clinic not a super speciality hospital however doctors and staff take care of required hygiene for the procedure. Please don't expect 5 star facilities.

If you want to visit Nanded then check this link
 I can recommend two hotels City Pride ( quite good ) , Ramakrishna International ( Reasonable ) . Ramakrishna hotel is reasonable in terms of tariff but I am recommending it for location. After the procedure you have to lie down for around 2 hours. Ramakrishna hotel is next to Doctors clinic and you can easily walk down and lie down in your hotel. City pride is slightly far away and it may take around 15 mins to reach there by car. If you have your own vehicle then City pride is quite ok for a place like Nanded.
 Nanded is a famous Sikh holy place. Cheaper accommodation options  are available with gurudwaras (Sikh Temple ) called Yatri Niwas ( Traveller's accomodation ).

Dr Rohit Jain
He is in Delhi and consults online. He can send medicines worldwide.

Pranic Healing
Pranic Healing Basic and Advanced courses will be required to be able to treat yourself properly. These courses are conducted at different location  at different times. Select your location in website and join accordingly.
This is a tool which your can use yourself without any aid. With practice you can get better at it.
If you want you can also take healing session from a trained healer. It will be faster that way but do remember it may take very long to heal completely so better option is to learn yourself.

Note :- Please ignore any grammatical / spelling mistakes as I was overwhelmed with emotions and tears, a couple of times while writing this blog and  have no heart to go back and review. :)

Tags : Urethral Stricture, Cure, Alternative therapies for Urethral stricture