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sharing my story...finally
Last Thanksgiving I left the hospital after a successfull abdominal hysterectomy ovaries intact due to fybroids. my really wounderfull hubby. brought a turkey dinner and we rejoiced Even though I was missing Thanks giving with my family. and i forgot about my complaint abouth the catherter and the pain that felt like a uti. even though i only had maybe 5 uti's my whole life.. i'm 43.. anyway that was the beginning.
I went back for my 2 week check up complaining of pain and my ob checked for a uti, thought it was bladder spasms, the same at my 4 week check up, then sent me to a urologist who for some odd reason kept sending me back to my ob and stubbornly refused to do the hydrodistension(SP?)
even though my ob kept sending me back to him.. this urologist went so far as to have me get a cat scan????
Well thanx to multi web search starting with the pelvic pain site ( at the time my main symptom was pain though later i was to get the works -pain, urgency and frequency,)i found a group of doctors that are fabulous ( I'm in Western PA so if any one is near here and in need RandySarner @AOL.com) and was tested and found that i have quite an ugly looking bladder indeed!!! yes.. not only do i have ic but i am one of the lucy icers with a heavy dose of hunners ulcers. Explains the severe pain. But Im ahead of myself At first I found a doctor who put me on Emelron and the amytriptylene but never bothered to check my bladder telling me i had ic
My reaction to Ic.. Was denial for 4 months so I was taking the meds but not watching my diet. not taking the meds with water or on an empty stomach... than I started getting horred flare ups... crying, screaming.. ice packs in the crotch flare ups... found the best urologist in the world.. showed me the ugliest picture my bladder::: got mayor depressed went to pain management: pain therapy: pain psyc:more drugs:
FLARE !!!!FLARE!!!!FLARE!!!!FLARE!!!!
The worse of it the last couple of weeks. I had a flare that i really can not even write about except to say that I was in a really bad place physically and emotionally due to the pain. Of cause I was totally bedridden. I called my mother to say that there was just no possible way i could make thanksgiving again this year. I was despondent. In truth I have been probably all year but this last flare was the worst of it.
Anyway on about the 11th night when i was feeling a bit better and able to lie there and sleep but not sleep .. well you know between the bathroom runs and the pain. Im on Elmiron, atarax,and topamax,(Vicadan if really needed, but not that night ) so the dreams and the sleep come and go.. a big help..as you can tell i'm a bit embarished to say this last part...blushing..cause this never happened to me before..and i'm well..kind of shy... anyway.. take it at face value.. i was lying there, not sleeping,..or sleeping... and a voice told me that i could feel joy and pain at the same time. I thought about that and a smile came to my face and the voice said "see you feel pain know don't you" and I answered "yes" and the voice said and "yet you smile with joy "and i said "yes" and felt my smile widen and my pain grow just a bit less.
I woke the next day( at 2 pm) and I still had pain though it was less and with my pain I took my shower, and with my pain I got dressed and with my pain I felt felt happier than I have in a year and I pray to god that i can some how keep this going from day to day.
I don't know if it was a dream or not. I do know one thing. I know i am going to be with my family this thanksgiving
I went back for my 2 week check up complaining of pain and my ob checked for a uti, thought it was bladder spasms, the same at my 4 week check up, then sent me to a urologist who for some odd reason kept sending me back to my ob and stubbornly refused to do the hydrodistension(SP?)
even though my ob kept sending me back to him.. this urologist went so far as to have me get a cat scan????
Well thanx to multi web search starting with the pelvic pain site ( at the time my main symptom was pain though later i was to get the works -pain, urgency and frequency,)i found a group of doctors that are fabulous ( I'm in Western PA so if any one is near here and in need RandySarner @AOL.com) and was tested and found that i have quite an ugly looking bladder indeed!!! yes.. not only do i have ic but i am one of the lucy icers with a heavy dose of hunners ulcers. Explains the severe pain. But Im ahead of myself At first I found a doctor who put me on Emelron and the amytriptylene but never bothered to check my bladder telling me i had ic
My reaction to Ic.. Was denial for 4 months so I was taking the meds but not watching my diet. not taking the meds with water or on an empty stomach... than I started getting horred flare ups... crying, screaming.. ice packs in the crotch flare ups... found the best urologist in the world.. showed me the ugliest picture my bladder::: got mayor depressed went to pain management: pain therapy: pain psyc:more drugs:
FLARE !!!!FLARE!!!!FLARE!!!!FLARE!!!!
The worse of it the last couple of weeks. I had a flare that i really can not even write about except to say that I was in a really bad place physically and emotionally due to the pain. Of cause I was totally bedridden. I called my mother to say that there was just no possible way i could make thanksgiving again this year. I was despondent. In truth I have been probably all year but this last flare was the worst of it.
Anyway on about the 11th night when i was feeling a bit better and able to lie there and sleep but not sleep .. well you know between the bathroom runs and the pain. Im on Elmiron, atarax,and topamax,(Vicadan if really needed, but not that night ) so the dreams and the sleep come and go.. a big help..as you can tell i'm a bit embarished to say this last part...blushing..cause this never happened to me before..and i'm well..kind of shy... anyway.. take it at face value.. i was lying there, not sleeping,..or sleeping... and a voice told me that i could feel joy and pain at the same time. I thought about that and a smile came to my face and the voice said "see you feel pain know don't you" and I answered "yes" and the voice said and "yet you smile with joy "and i said "yes" and felt my smile widen and my pain grow just a bit less.
I woke the next day( at 2 pm) and I still had pain though it was less and with my pain I took my shower, and with my pain I got dressed and with my pain I felt felt happier than I have in a year and I pray to god that i can some how keep this going from day to day.
I don't know if it was a dream or not. I do know one thing. I know i am going to be with my family this thanksgiving
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