lisalau
11-30-2006, 10:21 PM
Hello and Thankyou all soooo much!
I have been reading from the IC network for years but never ventured into the forums before a few days ago
Here I found so many stories similar to mine that I have been reading and crying for days!
Thankyou all so much for sharing your stories and allowing me to finally find some kinship, I am so humbly greatful for your words
My story...
(get a drink, settle down and be comfortable, this may take a while...)
I was blessed with health and 5 children. For almost 40 years, i enjoyed pursuing the kind of life only someone blessed with a pain free existance can imagine. Sure i had occassional UTIs and colds but nothing that got me down. I ran a home, enjoyed part time work (running a baby clinic and a small catering company) and was the typical (if quiet) soccer mum.
One day I noticed what i thought was the beginnings of an UTI. I drunk water and swallowed cranberry tabs, took ural eventually when i realised this wasnt making the difference went to see the doc for some antibiotics.
He happilly gave me some and took a midstream to test the cultures.
No culture found and in fact I has noticed that i WAS lacking the usual burning when i voided, i only had the frequency and urgency
Over the next 3 months, these symptoms worsened...i found the only way i could sit was if i had a block of ice between my legs.
I saw a urologist who schedualed a cystoscopy and put me on a low dose of daily antibiotics assuming i had a diverticulum that was harbouring infection.
Cystoscopy showed no diverticulum. The doc stretched and legnthened my urethra and found an extraordinary (his words) amount of inflammation but he said that it should be causing me burning when i pass urine, not the symptoms i complained of.
The symptoms worsened and i felt as though my bladder and urethra were in constant spasm. My GP gave me some valium to try and control the spasms but this had little effect on them.
The urologist sent me to a gyno who specialised in vulval disorders
she sent me to a physio who did some gentle myo fascial stretching
the pain had me screaming the house down and climbing the walls
but i am getting ahead of myself....
somewhere in there i suffered a huge psychological trauma
i walked in on the murder suicide of my nephew and sister
the pain i suffered was immense and its impact on my urethral/bladder problem can only be guessed at
3 weeks after this tragedy i started getting a temp
i had no other symptoms other than the frequency/urgency
my temp peaked at 42.2, no amount of antipyretic would reduce it, i almost lived in a cold shower
during one night (about 4 days into the illness) i felt as though a house had crashed and landed on my chest and my wonderful man took me to hospital where i was admitted into intensive care and remained there for the following 7 weeks.
noone knew what was wrong with me
they removed my gall bladder but then said there was nothing wrong with it
eventually i got better, noone knew why and was sent home
3 weeks later, i had a terrible pain in my chest
it radiated from my sternum to my right shoulder blade and my body was racked with unbearable pain
i got scared and called an ambulance who immediately diagnosed acute pancreatitis and took me to hospital
My parotid glands were swollen and my face looked like a balloon
i was placed in isolation (in case i had mumps) and in 2/3 days felt much better
only it happened again
and again
eventually they decided i could not keep coming to hospital every week just for pain relief and gave me morphine sulphate injections for home use
the hospital teams of infectious diseases, immunology, urology, gastrointerology and pain management continued to monitor me.
as a wonderful side effect of the narcotic therapy, my urological problems calmed down sufficiantly for me to forget about them.
5 months later and i was diagnosed with FMF (Familial Medeterranean Fever) a genetic disorder best described as an inappropriate inflammatory response. I was put on colchicine to reduce the severety and frequency of my 'flares' and the pancreatitis settled down dramatically (as did the pluerisy, the nephritis, the arthritis and every other 'itis' you can think of)
2 months later I began to wonder whether i continued to require such high doses of injectable narcotics...i was now taking the correct treatment for my disorder and the possibility of the pain i was experiencing being caused by my mind making a justifiable excuse to take the morphine occurred to me.
I spoke with my GP about this and then to my team. They all discouraged my disontinuing the treatment as i was doing well. However 3 month later, they agreed to hospitalise me and allow me to withdraw under their supervision and asess my pain without the morphine
BIG BIG mistake, friends!
Suddenly, it wasnt my CHOICE, I was being treated like a narcotic abuser!
Added to the discomfort of withdrawal was the return (with a vegence!) of my urinary symptoms which were now being treated as an excuse to return to narcotic treatment.
I was narcotic free for 5 terrible months. The pain in my pancreas was overwhelming and the pain in my urethra and bladder was back. I was losing my mind!
My doctors kept telling me that as i was not having acute pancreatic attacks, i was imagining the pain (perhaps as a way to get more drugs?) and that the urinary pain was also impossible, what i was describing, simply does not exist!
eventually i found a gastrointerologist who did not know of my FMF diagnosis (and therfore was not convinced that my 17 acute pancreatic attacks in 3 months could NOT have left any damage) who performed a colonoscopy and diagnosed chronic pancreatitis....thankfully i was now once again offered some pain relief!
This was about the time i had the myofascial stretching. When i rang the physio, hysterical with pain, she suggested i (quietly, she never reffered me as she didnt want to lose the refferals the other doc sent her) I make an appointment with Prof V C at the Royal Women's Hospital (Syd Australia)
This was quickly arranged and he has been my angel!
He was determined to prove I was experiencing what I said, not dismissed me as impossible.
He set up a urodynamic study which proved all the muscles WERE in continuous contraction. He has set up endo gynae and urogynae wards asnd clinics all over the world and said he has never seen a result like this
He posted the results on the internet and asked anyone who has seen and treated anything similar to please contct him.
He set up a cystoscopy/laproscopy and asked another Prof M to join him.
He found ulcers and amalaise deposits but nothing to explain the unusual action of my muscles. The 2 Profs decided that perhaps the protein deposits were responsible and that instead of shutting down, my muscles just began to function in a very primitive manner.
By this time relaxing them to void was beginning to take up to 1/2 hr each time i used the bathroom.
The only person to respond to the Profs internet query was a vet who has seen this condition in cats. His treatment was to put them down as living with this was too cruel but my Prof wouldnt consider this treatment for me (giggle)
At this point I began to use intermittant catheterisation. I still always tried to void in the usual manner but only waited 5 min, then i would catheterise. The Prof made me up a 9.7% lignocaine gel to use to numb the urethra as invading it with the catheter irriated it so much, it made me cry and scream.
He suggested we use botox to paralise the muscles and though it may make me incontinent, wanted me to consider it. It didnt take me long, incontinence i can live with, this pain i could not tolerate!
4 units and $4000.00 later (botox in Aus is subsidised for facial wrinkles but not for what i needed it for...I asked Prof, couldnt he say i wanted a really pretty urethra and bladder but he said it wouldnt work so i took out a mortgage to begin to pay for all these medical expenses)
Unfortunantly, the botox didnt make any difference at all!
By this time I had tried
medications:
antibiotics (short strong treatments and long, low dose ones)
valium
baclofen
morphine
oxycontin
mscontin
ordine
B&O Suppositories
silver nitrate
lignocaine
botox
procedures:
cystoscopy (3X)
laporoscopy
stretching and dilation of my urethra and bladder
alternative treatments:
cognitive therapy
meditation
visualisation
music and colour therapy
TENS
myofascial stretching
accupuncture
accupressure
moxibustion
Chinese herbs
homeopathy
naturapathy
massage
diet modification (both oxylate reduced and candida)
and so many more i dont think i even remember, some with some positive effect, many with none. I continue to use many of these skills on a daily basis and to these I attribute still being here as the pain is often so soul destroying that i get a compulsion to cut myself, not as a way to cause self harm but, and its so difficult to explain, to feel some 'release'..does that make any sense to anyone???
B&O Suppositories are not available in Aus, but when i read about them on this site, they made so much SENSE!!! To dissolve both a narcotic and an antispasmodic within the pelvis would achive both a systemic and proximal relief! I asked the Prof about them and he asked a friend in the States to send him some. They worked so well!!! however a compound pharmacist couldnt make them for me and we have not yet found a way to get a supply here. I was so disappointed I cried like a baby.
Fast forward a year later and here I am. I now have ulcers all over my urethra too and catheterising became a nightmare! So my 2 Profs have installed a suprapubic cath to give my urethra and bladder a rest for a while. Its been in for 8 days and i hate it!
I am now in agony all the time! I also have a UTI which I am sure isnt helping matters. I am almost finished a3rd dose of antibiotics (they gave me one while in hospital) and my bag is still full of blood and each time i open my bowels, a trickle of urine runs down my urethra and i almost pass out from the excruciating pain.
Tomorrow I will having an MSU to find out why the antiBs are not working, my last MSU indicated it would respond to these so maybe i have cultured another bacteria, who knows?
Sorry about the loooooong post, its my story and i thank you for reading it.
Thankyou so much for this site, I feel so sad to know that so many of you suffer as I do (but selfishly glad to not share this only with cats!)
warmest hugs
lisa
I have been reading from the IC network for years but never ventured into the forums before a few days ago
Here I found so many stories similar to mine that I have been reading and crying for days!
Thankyou all so much for sharing your stories and allowing me to finally find some kinship, I am so humbly greatful for your words
My story...
(get a drink, settle down and be comfortable, this may take a while...)
I was blessed with health and 5 children. For almost 40 years, i enjoyed pursuing the kind of life only someone blessed with a pain free existance can imagine. Sure i had occassional UTIs and colds but nothing that got me down. I ran a home, enjoyed part time work (running a baby clinic and a small catering company) and was the typical (if quiet) soccer mum.
One day I noticed what i thought was the beginnings of an UTI. I drunk water and swallowed cranberry tabs, took ural eventually when i realised this wasnt making the difference went to see the doc for some antibiotics.
He happilly gave me some and took a midstream to test the cultures.
No culture found and in fact I has noticed that i WAS lacking the usual burning when i voided, i only had the frequency and urgency
Over the next 3 months, these symptoms worsened...i found the only way i could sit was if i had a block of ice between my legs.
I saw a urologist who schedualed a cystoscopy and put me on a low dose of daily antibiotics assuming i had a diverticulum that was harbouring infection.
Cystoscopy showed no diverticulum. The doc stretched and legnthened my urethra and found an extraordinary (his words) amount of inflammation but he said that it should be causing me burning when i pass urine, not the symptoms i complained of.
The symptoms worsened and i felt as though my bladder and urethra were in constant spasm. My GP gave me some valium to try and control the spasms but this had little effect on them.
The urologist sent me to a gyno who specialised in vulval disorders
she sent me to a physio who did some gentle myo fascial stretching
the pain had me screaming the house down and climbing the walls
but i am getting ahead of myself....
somewhere in there i suffered a huge psychological trauma
i walked in on the murder suicide of my nephew and sister
the pain i suffered was immense and its impact on my urethral/bladder problem can only be guessed at
3 weeks after this tragedy i started getting a temp
i had no other symptoms other than the frequency/urgency
my temp peaked at 42.2, no amount of antipyretic would reduce it, i almost lived in a cold shower
during one night (about 4 days into the illness) i felt as though a house had crashed and landed on my chest and my wonderful man took me to hospital where i was admitted into intensive care and remained there for the following 7 weeks.
noone knew what was wrong with me
they removed my gall bladder but then said there was nothing wrong with it
eventually i got better, noone knew why and was sent home
3 weeks later, i had a terrible pain in my chest
it radiated from my sternum to my right shoulder blade and my body was racked with unbearable pain
i got scared and called an ambulance who immediately diagnosed acute pancreatitis and took me to hospital
My parotid glands were swollen and my face looked like a balloon
i was placed in isolation (in case i had mumps) and in 2/3 days felt much better
only it happened again
and again
eventually they decided i could not keep coming to hospital every week just for pain relief and gave me morphine sulphate injections for home use
the hospital teams of infectious diseases, immunology, urology, gastrointerology and pain management continued to monitor me.
as a wonderful side effect of the narcotic therapy, my urological problems calmed down sufficiantly for me to forget about them.
5 months later and i was diagnosed with FMF (Familial Medeterranean Fever) a genetic disorder best described as an inappropriate inflammatory response. I was put on colchicine to reduce the severety and frequency of my 'flares' and the pancreatitis settled down dramatically (as did the pluerisy, the nephritis, the arthritis and every other 'itis' you can think of)
2 months later I began to wonder whether i continued to require such high doses of injectable narcotics...i was now taking the correct treatment for my disorder and the possibility of the pain i was experiencing being caused by my mind making a justifiable excuse to take the morphine occurred to me.
I spoke with my GP about this and then to my team. They all discouraged my disontinuing the treatment as i was doing well. However 3 month later, they agreed to hospitalise me and allow me to withdraw under their supervision and asess my pain without the morphine
BIG BIG mistake, friends!
Suddenly, it wasnt my CHOICE, I was being treated like a narcotic abuser!
Added to the discomfort of withdrawal was the return (with a vegence!) of my urinary symptoms which were now being treated as an excuse to return to narcotic treatment.
I was narcotic free for 5 terrible months. The pain in my pancreas was overwhelming and the pain in my urethra and bladder was back. I was losing my mind!
My doctors kept telling me that as i was not having acute pancreatic attacks, i was imagining the pain (perhaps as a way to get more drugs?) and that the urinary pain was also impossible, what i was describing, simply does not exist!
eventually i found a gastrointerologist who did not know of my FMF diagnosis (and therfore was not convinced that my 17 acute pancreatic attacks in 3 months could NOT have left any damage) who performed a colonoscopy and diagnosed chronic pancreatitis....thankfully i was now once again offered some pain relief!
This was about the time i had the myofascial stretching. When i rang the physio, hysterical with pain, she suggested i (quietly, she never reffered me as she didnt want to lose the refferals the other doc sent her) I make an appointment with Prof V C at the Royal Women's Hospital (Syd Australia)
This was quickly arranged and he has been my angel!
He was determined to prove I was experiencing what I said, not dismissed me as impossible.
He set up a urodynamic study which proved all the muscles WERE in continuous contraction. He has set up endo gynae and urogynae wards asnd clinics all over the world and said he has never seen a result like this
He posted the results on the internet and asked anyone who has seen and treated anything similar to please contct him.
He set up a cystoscopy/laproscopy and asked another Prof M to join him.
He found ulcers and amalaise deposits but nothing to explain the unusual action of my muscles. The 2 Profs decided that perhaps the protein deposits were responsible and that instead of shutting down, my muscles just began to function in a very primitive manner.
By this time relaxing them to void was beginning to take up to 1/2 hr each time i used the bathroom.
The only person to respond to the Profs internet query was a vet who has seen this condition in cats. His treatment was to put them down as living with this was too cruel but my Prof wouldnt consider this treatment for me (giggle)
At this point I began to use intermittant catheterisation. I still always tried to void in the usual manner but only waited 5 min, then i would catheterise. The Prof made me up a 9.7% lignocaine gel to use to numb the urethra as invading it with the catheter irriated it so much, it made me cry and scream.
He suggested we use botox to paralise the muscles and though it may make me incontinent, wanted me to consider it. It didnt take me long, incontinence i can live with, this pain i could not tolerate!
4 units and $4000.00 later (botox in Aus is subsidised for facial wrinkles but not for what i needed it for...I asked Prof, couldnt he say i wanted a really pretty urethra and bladder but he said it wouldnt work so i took out a mortgage to begin to pay for all these medical expenses)
Unfortunantly, the botox didnt make any difference at all!
By this time I had tried
medications:
antibiotics (short strong treatments and long, low dose ones)
valium
baclofen
morphine
oxycontin
mscontin
ordine
B&O Suppositories
silver nitrate
lignocaine
botox
procedures:
cystoscopy (3X)
laporoscopy
stretching and dilation of my urethra and bladder
alternative treatments:
cognitive therapy
meditation
visualisation
music and colour therapy
TENS
myofascial stretching
accupuncture
accupressure
moxibustion
Chinese herbs
homeopathy
naturapathy
massage
diet modification (both oxylate reduced and candida)
and so many more i dont think i even remember, some with some positive effect, many with none. I continue to use many of these skills on a daily basis and to these I attribute still being here as the pain is often so soul destroying that i get a compulsion to cut myself, not as a way to cause self harm but, and its so difficult to explain, to feel some 'release'..does that make any sense to anyone???
B&O Suppositories are not available in Aus, but when i read about them on this site, they made so much SENSE!!! To dissolve both a narcotic and an antispasmodic within the pelvis would achive both a systemic and proximal relief! I asked the Prof about them and he asked a friend in the States to send him some. They worked so well!!! however a compound pharmacist couldnt make them for me and we have not yet found a way to get a supply here. I was so disappointed I cried like a baby.
Fast forward a year later and here I am. I now have ulcers all over my urethra too and catheterising became a nightmare! So my 2 Profs have installed a suprapubic cath to give my urethra and bladder a rest for a while. Its been in for 8 days and i hate it!
I am now in agony all the time! I also have a UTI which I am sure isnt helping matters. I am almost finished a3rd dose of antibiotics (they gave me one while in hospital) and my bag is still full of blood and each time i open my bowels, a trickle of urine runs down my urethra and i almost pass out from the excruciating pain.
Tomorrow I will having an MSU to find out why the antiBs are not working, my last MSU indicated it would respond to these so maybe i have cultured another bacteria, who knows?
Sorry about the loooooong post, its my story and i thank you for reading it.
Thankyou so much for this site, I feel so sad to know that so many of you suffer as I do (but selfishly glad to not share this only with cats!)
warmest hugs
lisa