gwyn
05-02-2004, 12:57 AM
Hi all,
i am back and there are so many things i want to tell u all ,firstly i'd like to indulge myself in a moment of silence in memory of AUNT DEB. she is truly an IC angel to me and i really appreciate all she has done for me.next, i would like to share my story:::
i am going to be 24 years old on 9may2004.i am from singapore. i have had ic for 2 years now and i was diagnosed in singapore but the treatments were not available in singapore i was even interviewed by the news reporter:(below is the copy of the article)
---------------------------------------------------------------------------------
The pain was like daggers stabbing me
She has to go to toilet every 15 mins because of rare bladder disorder.
By Bian Yu Wei
THIS former air stewardess and model has a painful story to tell.
Of how a rare disease has made life hell for her over the last two years.
It attacks a very private part of the body. Yet she wants everyone to hear of it. Because she feels no one else should suffer as she did.
The disease, called Interstitial Cystitis (IC), is not easy to diagnose, and if there is more awareness of it, she hopes, others may get help earlier.
This is the story of Gwyn Ngan, 23, who is now a shadow of her former self:
I am an ex-Singapore Girl and model but now I lie in a hospital bed.
I used to weigh a healthy 47kg for my 1.7 m frame.
Today, I'm a gaunt 39kg.
I'm a victim of a disorder that leaves me in too much pain to walk, talk, or sleep.
Bit by bit, it robbed me of my life.
And I was in the prime of my life.
After graduating from Temasek Polytechnic with a Diploma in Marketing, I was an air stewardess with Singapore Airlines for nine months, before joining an advertising firm.
I had also been a freelance model since I was 16, and was most recently the face for a newly-launched drink.
Now, I can't even go to the movies without checking where the toilets are first. And I can't remember the last time I sat down for an entire movie, without frequent breaks.
I can't have a normal chat over coffee, without interrupting my friends every 15 minutes or so, to go to the toilet.
Some friends thought I was weird and imagining everything.
But others have stood by me, and I am thankful for that.
It wasn't just my friends who thought I was imagining things. The first few doctors I saw suggested it was all in my head.
All those months, nobody knew what was wrong.
Now my doctor believes that I may have contracted IC, a rare and mostly incurable disorder that affects the bladder.
It was a diagnosis by exclusion, meaning I was tested for everything from stones to cancer.
IC is the only thing left.
Its causes are not known, its symptoms are very similar to that of other urinary disorders, and there is no definitive test to diagnose it. (See other report.)
That's what makes it so scary.
My suffering began two years ago when I started experiencing pain whenever I passed urine. Controlling my urge to urinate also became harder.
The numerous general practitioners I saw diagnosed me as having contracted urinary tract infection (UTI), something doctors say is fairly easy to treat with one course of antibiotics.
However, even after three courses of antibiotics, I kept getting the severe pain.
In fact, it became more frequent, and eight months ago, it developed into an everyday occurrence.
To make matters worse, I began to feel a sharp pain in my vagina even when I was not passing urine.
Finally I began getting sudden severe attacks of pain in my entire lower body.
That scared my family members, and left me feeling that there was little hope.
The immense pain that tortured me was like daggers stabbing me. I really felt like dying.
And each time it lasted for four to six unbearable hours.
I have been in and out of hospitals. And I am getting some help now.
The interval between each acute attack has lengthened, but there still seems to be nothing that can stop the gnawing pain.
Or stop the need to go to the toilet every quarter of an hour.
Not even the stacks of pills I have to swallow every day.
On top of that, I may also have an infection.
The most important thing on my mind now is public awareness.
I want to tell people about this disorder, that it affects not only women, but some men as well.
I want awareness, especially for those 1,000 or so women out there who may not know what is affecting them, who may be suffering in silence.
And they may be delaying seeking specialist treatment, thinking that they have simple UTI.
I hope that sharing my story will encourage people, especially women, who form 90 per cent of all those who suffer from IC, to seek immediate treatment from a uro-gynaecologist, if they have symptoms like mine.
This is especially because urine culture tests may show up clear, but IC may still be there.
I really hope that my situation, my two years of GP-hopping, will not repeat itself.
I still look forward to going back to teaching.
I was giving tuition at a Residents' Committee in Seng Kang for about a month, but I had to let the students down many times due to sudden attacks.
I hope I can be well enough just to teach, because I love children so much.
The doctors say the disease need not stop me from having children of my own.
But I dare not hope for so much right now.
-------------------------------------------------------------------------------------end of article
So i came to new york, hoping that i can find better doctors and treatments or help. now i rented a room in flushing, nyc. and i began my search . i went to the ER so many times and i just cant stand it anymore. 1- i am not a us citizen, 2- i have no insurance 3- i think i am dying 4 - the doctors are too mean n they dont understand anything!
on 30th april, i was in so much pain that i could not even walk at all and the ambulance sent me to New york queens hospital ER dept. the people at the triage were like ---its YOU AGAIN???? i was in so much pain i did not care about the looks they were giving to each other .
i was put onto the bed and i waited for like 45min before the doc came to see me n i was in sooo much pain i could not even leave the toilet i pulled the emergency string and waited 10 MINUTES before a nurse, cynthia came to me when she heard me shouting for help and i was given morphine injection and helped out of the toilet in a wheelchair to my bed .
i stayed there tearing all the way because i was in soooo much pain the tears just flow out and i was in this curled up position on the bed hugging my legs, twisting and turning and the pain was so bad that i wanted to bang my head on the wall so that i can knock out and i wont feel the pain..i kept asking for the doctor who never came, n i was in soo much pain in the toilet the nurse gave me a pain killler to eat and when i was barely walking to the bed , the doctor told me:
You HAVE to go now.. there is nothing we can do for you and you HAVE to go now.here is the presciption for the medicine and you can get dressed and GO NOW!!!!
i was like----i am in SOOOO much pain that i can barely walk and they are forcing me to leave??? i asked them for more pain killers but they told me i had enough n to ask me to get it from the prescription!!! so i just stayed at my bed for a while ,trying to pack my stuff (WHILE IN PAIN)
n this nice nurse-cynthia came along and offered me some food in a tray -which i gladly took --i was in there for quite a while n i was HUNGRY--alhtough i was in pain. so, i started eating and halfway through.....the doc SCOLDED the nurse cynthia : why did u feed her ?? we just asked her to go !!! she has to leave now , we need the bed for another paitent!!! OH MY GOD !!!!!!! i overheard that and i was FURIOUS!!!!!!!!!i stopped eating n changed out of my dress and i wrote a thank you note to cynthia , took down all the doc's names and left the hospital . and then i went to another hospital -elmhurst hospital-ER dept...
i am sooooo upset!!!! i cant stand this anymore!!!!!!!!!! what is going on here?? can i sue these people???what am i going to do?? how can i get help i am in so much pain most of the time i just CANT do anything!!!!!!!!!!!!!
please help me and if you can , please CALL me-1-646-637-4905
thank you!!!!!!!!!:love: ;) ;) ;)
i am back and there are so many things i want to tell u all ,firstly i'd like to indulge myself in a moment of silence in memory of AUNT DEB. she is truly an IC angel to me and i really appreciate all she has done for me.next, i would like to share my story:::
i am going to be 24 years old on 9may2004.i am from singapore. i have had ic for 2 years now and i was diagnosed in singapore but the treatments were not available in singapore i was even interviewed by the news reporter:(below is the copy of the article)
---------------------------------------------------------------------------------
The pain was like daggers stabbing me
She has to go to toilet every 15 mins because of rare bladder disorder.
By Bian Yu Wei
THIS former air stewardess and model has a painful story to tell.
Of how a rare disease has made life hell for her over the last two years.
It attacks a very private part of the body. Yet she wants everyone to hear of it. Because she feels no one else should suffer as she did.
The disease, called Interstitial Cystitis (IC), is not easy to diagnose, and if there is more awareness of it, she hopes, others may get help earlier.
This is the story of Gwyn Ngan, 23, who is now a shadow of her former self:
I am an ex-Singapore Girl and model but now I lie in a hospital bed.
I used to weigh a healthy 47kg for my 1.7 m frame.
Today, I'm a gaunt 39kg.
I'm a victim of a disorder that leaves me in too much pain to walk, talk, or sleep.
Bit by bit, it robbed me of my life.
And I was in the prime of my life.
After graduating from Temasek Polytechnic with a Diploma in Marketing, I was an air stewardess with Singapore Airlines for nine months, before joining an advertising firm.
I had also been a freelance model since I was 16, and was most recently the face for a newly-launched drink.
Now, I can't even go to the movies without checking where the toilets are first. And I can't remember the last time I sat down for an entire movie, without frequent breaks.
I can't have a normal chat over coffee, without interrupting my friends every 15 minutes or so, to go to the toilet.
Some friends thought I was weird and imagining everything.
But others have stood by me, and I am thankful for that.
It wasn't just my friends who thought I was imagining things. The first few doctors I saw suggested it was all in my head.
All those months, nobody knew what was wrong.
Now my doctor believes that I may have contracted IC, a rare and mostly incurable disorder that affects the bladder.
It was a diagnosis by exclusion, meaning I was tested for everything from stones to cancer.
IC is the only thing left.
Its causes are not known, its symptoms are very similar to that of other urinary disorders, and there is no definitive test to diagnose it. (See other report.)
That's what makes it so scary.
My suffering began two years ago when I started experiencing pain whenever I passed urine. Controlling my urge to urinate also became harder.
The numerous general practitioners I saw diagnosed me as having contracted urinary tract infection (UTI), something doctors say is fairly easy to treat with one course of antibiotics.
However, even after three courses of antibiotics, I kept getting the severe pain.
In fact, it became more frequent, and eight months ago, it developed into an everyday occurrence.
To make matters worse, I began to feel a sharp pain in my vagina even when I was not passing urine.
Finally I began getting sudden severe attacks of pain in my entire lower body.
That scared my family members, and left me feeling that there was little hope.
The immense pain that tortured me was like daggers stabbing me. I really felt like dying.
And each time it lasted for four to six unbearable hours.
I have been in and out of hospitals. And I am getting some help now.
The interval between each acute attack has lengthened, but there still seems to be nothing that can stop the gnawing pain.
Or stop the need to go to the toilet every quarter of an hour.
Not even the stacks of pills I have to swallow every day.
On top of that, I may also have an infection.
The most important thing on my mind now is public awareness.
I want to tell people about this disorder, that it affects not only women, but some men as well.
I want awareness, especially for those 1,000 or so women out there who may not know what is affecting them, who may be suffering in silence.
And they may be delaying seeking specialist treatment, thinking that they have simple UTI.
I hope that sharing my story will encourage people, especially women, who form 90 per cent of all those who suffer from IC, to seek immediate treatment from a uro-gynaecologist, if they have symptoms like mine.
This is especially because urine culture tests may show up clear, but IC may still be there.
I really hope that my situation, my two years of GP-hopping, will not repeat itself.
I still look forward to going back to teaching.
I was giving tuition at a Residents' Committee in Seng Kang for about a month, but I had to let the students down many times due to sudden attacks.
I hope I can be well enough just to teach, because I love children so much.
The doctors say the disease need not stop me from having children of my own.
But I dare not hope for so much right now.
-------------------------------------------------------------------------------------end of article
So i came to new york, hoping that i can find better doctors and treatments or help. now i rented a room in flushing, nyc. and i began my search . i went to the ER so many times and i just cant stand it anymore. 1- i am not a us citizen, 2- i have no insurance 3- i think i am dying 4 - the doctors are too mean n they dont understand anything!
on 30th april, i was in so much pain that i could not even walk at all and the ambulance sent me to New york queens hospital ER dept. the people at the triage were like ---its YOU AGAIN???? i was in so much pain i did not care about the looks they were giving to each other .
i was put onto the bed and i waited for like 45min before the doc came to see me n i was in sooo much pain i could not even leave the toilet i pulled the emergency string and waited 10 MINUTES before a nurse, cynthia came to me when she heard me shouting for help and i was given morphine injection and helped out of the toilet in a wheelchair to my bed .
i stayed there tearing all the way because i was in soooo much pain the tears just flow out and i was in this curled up position on the bed hugging my legs, twisting and turning and the pain was so bad that i wanted to bang my head on the wall so that i can knock out and i wont feel the pain..i kept asking for the doctor who never came, n i was in soo much pain in the toilet the nurse gave me a pain killler to eat and when i was barely walking to the bed , the doctor told me:
You HAVE to go now.. there is nothing we can do for you and you HAVE to go now.here is the presciption for the medicine and you can get dressed and GO NOW!!!!
i was like----i am in SOOOO much pain that i can barely walk and they are forcing me to leave??? i asked them for more pain killers but they told me i had enough n to ask me to get it from the prescription!!! so i just stayed at my bed for a while ,trying to pack my stuff (WHILE IN PAIN)
n this nice nurse-cynthia came along and offered me some food in a tray -which i gladly took --i was in there for quite a while n i was HUNGRY--alhtough i was in pain. so, i started eating and halfway through.....the doc SCOLDED the nurse cynthia : why did u feed her ?? we just asked her to go !!! she has to leave now , we need the bed for another paitent!!! OH MY GOD !!!!!!! i overheard that and i was FURIOUS!!!!!!!!!i stopped eating n changed out of my dress and i wrote a thank you note to cynthia , took down all the doc's names and left the hospital . and then i went to another hospital -elmhurst hospital-ER dept...
i am sooooo upset!!!! i cant stand this anymore!!!!!!!!!! what is going on here?? can i sue these people???what am i going to do?? how can i get help i am in so much pain most of the time i just CANT do anything!!!!!!!!!!!!!
please help me and if you can , please CALL me-1-646-637-4905
thank you!!!!!!!!!:love: ;) ;) ;)