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My name is Kathie, I'm sharing my story, so far...
Hi, My name is Kathie. *I am a 56 year old woman, diagnosed with IC,*vulvodynia,urethral pain, and pelvic floor disorder. *It has taken me a long time to post, party due to "operator error" ( ie "me", unable to get site permission to post) and partly because I was afraid to post my story. *My emotions were too raw and the emotional pain of writing was more than I could bare, with the physical pain. *My life has been about hope, and I was fearful to say, that I was losing it.
So six months has past, since I began the IC journey. *It began with painful sex in January. Then the familiar UTI after. *Looking back, I had many "Earlier"signs. *The UtI proved positive for infection and I was treated for months with antibiotics from my GP, Gynochologist, and Urologist. *Despite negative results after the first round. It was a very bad UTI was the theory. *Three months of antibiotics will tear your digestive system up!
The pain and frequency increased over the many days, exacerbated by 100% cranberry juice, coconut water with vitamin C, aloe juice with citrus, pomegranate juice and occasional bowls of authentic spicy tonkutsu ramen noodle soup!
*I loved all the wrong foods, and while not having much appetite, I ate oysters with horseradish and spicy sauce, marinated Lima beans, olives and other acidic foods while trying to enjoy a seaside vacation. Back then, I was clueless that I was harming myself further. Pouring acid on an open wound. I finally could only do the juice, yogurt, and my stomach would bloat and burn so that I felt my esophagus had acid burns.
Having been twice widowed before thirty, I have a survivor instinct and a personality that accepts the inevitable knocks life will bring. *I try to be gracious on all levels. *However, IC had knocked me, rocked me and blocked me from being an authentic "me". I was unable to do the push of super human will to get past the feelings I was experiencing. *Trips to the bathroom 30 times a day, sometimes just dripping but feeling full and burning urgency along with throbbing and sometimes stabbing pains. Unable to have sex with my husband of nearing 25 years.
My GP finally agreed I may have IC and recommended a local Urogynochologist who treated IC. *It was a five week wait to get in. *My desperation was insurmountable... I begged for help. *They got me in the next day, after calling back to say no, they'd made a mistake....well what to my wandering eyes should appear? Raindrops, no, sobbing in heard in my ears! *It was me, pleading for help. *I was on the brink of going to the ER, of which I avoided like the dreaded plague...or as I know now, the dreaded IC.
My journey brought me to the PA who evaluated and suspected IC. *Then offered a rescue installation. *My GP had offered hydrocodone, which I took sparingly during vacation for fear, I might have stones or be away from my Dr's and in too much pain to fake vacationing....the rescue installation came almost three and a half months after this UTI/ flair began. *She did a urine test just to prove yet again, after five tests, negative for infection. *The instillation was of heparin and lidocaine. *I felt nothing at first but cold running thru my veins. I could barely walk in there and that was how I left. *It would be more weeks before they diagnosed the pelvic floor and urethra pain. *I discovered the first time in months that I was free of pain. *I cried. *Relief! *However it wasn't known how short lived that would be. *More appointments and installations every few days, along with the discovery that my diet would have to dramatically transformed.
This website and others, along with the survivors guide became my trusted information from then on. I emphatically followed the diet, took the Amytriptolyne,10 mg and Elmiron. The first days following were hard to manage, My brain fogged by the new medication and the reality of the new me. *My lifestyle was full of long days of stress filled work, care taking and cooking ethnic foods. *My husband and I began dance classes and were attending dance bootcamp at the time. *The classes were grueling with few bathroom breaks and the throbbing stabbing increasing as the body grew spent. *In a few weeks, I saw the Dr. He prescribed Progesterone cream for the urethra, twice a week on the opening. He also spent a long time explaining to me and my husband what IC was and how he would treat it. *I'd already learned by hours of research many treatment options, again mostly by reading first hand what most of you have lived with experienced and described. *I'd already sought out Reiki healing once I'd found the alternative healer had herself once suffered from IC and now was in remission. I learned of harvest aloe and caltrate. *
Finally an *ultrasound and cystoscopy. *Four months in. During these many Drs visits, i would describe the one symptom was that I felt like I was sitting on an orange. *Mmmm..my outside vulva felt like it was badly burned...
In the meantime, our life dream vacation of a Mediterranean cruise was looming in the future. *Our friends and travel mates awaiting news from afar that I would be able to drink red wine thru Italy and France, prepare paella in Spain, eat tapas and pasta and dance the nights away.
My fears were creeping up into my throat, the Amytriptolyne was raised to 20 mg. *Self installations were offered. *Could I learn in less than two weeks? Exactly how does one self cath on a rocking ship? Can you keep things sterile. *The PA (lovely woman) kept asking if my husband could help. *Seriously??? Mmm.. No!? He has hands the size of a small giant....my girlfriend? *No, I couldn't do them. *They lasted a few days yes, helped greatly with frequency but always had a kickback with extreme urethra pain. Don't go? Not with friends waiting too for shared apartment mates and excursions already paid for long in advance....How can I fly? International flight to Barcelona would take 25 hours travel time with security, flight change and runway time. *How could I manage? What would it be like bumping my butt, just me and my swollen up little bladder, and orange?*
The Dr had prescribed PT for the gripping muscles and spasms my pelvic floor had relentlessly persisted, poking me like a wooden spoon, twisting my insides and never able to relax. *The sessions were again daunting, how could I have internal manipulation? How much more would that hurt? Can't I just take a pill and make it all go away?*
I found good relief for the vulodynia using aloe from the plant to coat the outside vlulva area,and taking the caltrate daily.
The therapist is a specialized informed compassionate healer who gave me a specific picture of why I had this pain, validating my understanding that I'd lost the mind muscle synapse that would allow me to relax this muscles. *She also listened to my orange complaint. *Yes, I felt as if I were sitting on an orange. *My constipation was worsening from all the antibiotics despite probiotics. She noted the rectocele. *Five different pelvic exams by four Dr's within five weeks yet none mentioned the rectocele. *This was why I had to use vaginal manipulation to eliminate when I sometimes would eliminate! This was my source of the orange I had been sitting on. I researched a rectocele.. *Yes. *This is what I am feeling! *
*So next instill ( the 12th) and final*before i would take my trip, I asked the PA if I could see my Dr and address the rectocele. * Upon return he examined me, diagnosed me with stage two and recommended surgery. *I took two weeks to think things through, discuss and decide. *I am having surgery to repair at the first week of August. I think a lot of the pelvic pain, and vulvar could be related to the rectocele. *I am doing PT at home to strengthen my outer hip muscles and stomach to be the best I can before surgery.
Last night I used the last half of *hydrocodone that I took with me on my trip. *Instead of instills, I used the hydrocodone given me in March to get thru the days which were hardest, flight, bus trips, 14 hour car rides. *Fifteen pills in four months, not so bad.*
With advice I had read from many of you, and information in cyberspace, I traveled that dream trip. For the trip, I used the warming pads on my underwear ( after security).
, took a letter to assure flight attendants knew, brought wallet cards in each language 
so I could get in front of a line or access a bathroom when the pain grew too much to bare. *I found I held my urine longer, training my bladder a bit it didn't have to empty as urgently. * My flare has not yet ended, but I have learned more every day... I have not lost hope tho like all of us, found much overwhelming and new about living with this condition.
I have lots of questions, as everyone is unique in foods which trouble them. Although three months on Elmiron with a shortage in our area, my consern is I won't have enough to make a difference in the healing. Am I sabotaging my diet by using agave to sweeten the Chamomile tea?
Thanks for reading my story. *Thanks for being strong.*hopeful for a cure
Kathie
*
So six months has past, since I began the IC journey. *It began with painful sex in January. Then the familiar UTI after. *Looking back, I had many "Earlier"signs. *The UtI proved positive for infection and I was treated for months with antibiotics from my GP, Gynochologist, and Urologist. *Despite negative results after the first round. It was a very bad UTI was the theory. *Three months of antibiotics will tear your digestive system up!
The pain and frequency increased over the many days, exacerbated by 100% cranberry juice, coconut water with vitamin C, aloe juice with citrus, pomegranate juice and occasional bowls of authentic spicy tonkutsu ramen noodle soup!
*I loved all the wrong foods, and while not having much appetite, I ate oysters with horseradish and spicy sauce, marinated Lima beans, olives and other acidic foods while trying to enjoy a seaside vacation. Back then, I was clueless that I was harming myself further. Pouring acid on an open wound. I finally could only do the juice, yogurt, and my stomach would bloat and burn so that I felt my esophagus had acid burns.
Having been twice widowed before thirty, I have a survivor instinct and a personality that accepts the inevitable knocks life will bring. *I try to be gracious on all levels. *However, IC had knocked me, rocked me and blocked me from being an authentic "me". I was unable to do the push of super human will to get past the feelings I was experiencing. *Trips to the bathroom 30 times a day, sometimes just dripping but feeling full and burning urgency along with throbbing and sometimes stabbing pains. Unable to have sex with my husband of nearing 25 years.
My GP finally agreed I may have IC and recommended a local Urogynochologist who treated IC. *It was a five week wait to get in. *My desperation was insurmountable... I begged for help. *They got me in the next day, after calling back to say no, they'd made a mistake....well what to my wandering eyes should appear? Raindrops, no, sobbing in heard in my ears! *It was me, pleading for help. *I was on the brink of going to the ER, of which I avoided like the dreaded plague...or as I know now, the dreaded IC.
My journey brought me to the PA who evaluated and suspected IC. *Then offered a rescue installation. *My GP had offered hydrocodone, which I took sparingly during vacation for fear, I might have stones or be away from my Dr's and in too much pain to fake vacationing....the rescue installation came almost three and a half months after this UTI/ flair began. *She did a urine test just to prove yet again, after five tests, negative for infection. *The instillation was of heparin and lidocaine. *I felt nothing at first but cold running thru my veins. I could barely walk in there and that was how I left. *It would be more weeks before they diagnosed the pelvic floor and urethra pain. *I discovered the first time in months that I was free of pain. *I cried. *Relief! *However it wasn't known how short lived that would be. *More appointments and installations every few days, along with the discovery that my diet would have to dramatically transformed.
This website and others, along with the survivors guide became my trusted information from then on. I emphatically followed the diet, took the Amytriptolyne,10 mg and Elmiron. The first days following were hard to manage, My brain fogged by the new medication and the reality of the new me. *My lifestyle was full of long days of stress filled work, care taking and cooking ethnic foods. *My husband and I began dance classes and were attending dance bootcamp at the time. *The classes were grueling with few bathroom breaks and the throbbing stabbing increasing as the body grew spent. *In a few weeks, I saw the Dr. He prescribed Progesterone cream for the urethra, twice a week on the opening. He also spent a long time explaining to me and my husband what IC was and how he would treat it. *I'd already learned by hours of research many treatment options, again mostly by reading first hand what most of you have lived with experienced and described. *I'd already sought out Reiki healing once I'd found the alternative healer had herself once suffered from IC and now was in remission. I learned of harvest aloe and caltrate. *
Finally an *ultrasound and cystoscopy. *Four months in. During these many Drs visits, i would describe the one symptom was that I felt like I was sitting on an orange. *Mmmm..my outside vulva felt like it was badly burned...
In the meantime, our life dream vacation of a Mediterranean cruise was looming in the future. *Our friends and travel mates awaiting news from afar that I would be able to drink red wine thru Italy and France, prepare paella in Spain, eat tapas and pasta and dance the nights away.
My fears were creeping up into my throat, the Amytriptolyne was raised to 20 mg. *Self installations were offered. *Could I learn in less than two weeks? Exactly how does one self cath on a rocking ship? Can you keep things sterile. *The PA (lovely woman) kept asking if my husband could help. *Seriously??? Mmm.. No!? He has hands the size of a small giant....my girlfriend? *No, I couldn't do them. *They lasted a few days yes, helped greatly with frequency but always had a kickback with extreme urethra pain. Don't go? Not with friends waiting too for shared apartment mates and excursions already paid for long in advance....How can I fly? International flight to Barcelona would take 25 hours travel time with security, flight change and runway time. *How could I manage? What would it be like bumping my butt, just me and my swollen up little bladder, and orange?*
The Dr had prescribed PT for the gripping muscles and spasms my pelvic floor had relentlessly persisted, poking me like a wooden spoon, twisting my insides and never able to relax. *The sessions were again daunting, how could I have internal manipulation? How much more would that hurt? Can't I just take a pill and make it all go away?*
I found good relief for the vulodynia using aloe from the plant to coat the outside vlulva area,and taking the caltrate daily.
The therapist is a specialized informed compassionate healer who gave me a specific picture of why I had this pain, validating my understanding that I'd lost the mind muscle synapse that would allow me to relax this muscles. *She also listened to my orange complaint. *Yes, I felt as if I were sitting on an orange. *My constipation was worsening from all the antibiotics despite probiotics. She noted the rectocele. *Five different pelvic exams by four Dr's within five weeks yet none mentioned the rectocele. *This was why I had to use vaginal manipulation to eliminate when I sometimes would eliminate! This was my source of the orange I had been sitting on. I researched a rectocele.. *Yes. *This is what I am feeling! *
*So next instill ( the 12th) and final*before i would take my trip, I asked the PA if I could see my Dr and address the rectocele. * Upon return he examined me, diagnosed me with stage two and recommended surgery. *I took two weeks to think things through, discuss and decide. *I am having surgery to repair at the first week of August. I think a lot of the pelvic pain, and vulvar could be related to the rectocele. *I am doing PT at home to strengthen my outer hip muscles and stomach to be the best I can before surgery.
Last night I used the last half of *hydrocodone that I took with me on my trip. *Instead of instills, I used the hydrocodone given me in March to get thru the days which were hardest, flight, bus trips, 14 hour car rides. *Fifteen pills in four months, not so bad.*
With advice I had read from many of you, and information in cyberspace, I traveled that dream trip. For the trip, I used the warming pads on my underwear ( after security).
, took a letter to assure flight attendants knew, brought wallet cards in each language so I could get in front of a line or access a bathroom when the pain grew too much to bare. *I found I held my urine longer, training my bladder a bit it didn't have to empty as urgently. * My flare has not yet ended, but I have learned more every day... I have not lost hope tho like all of us, found much overwhelming and new about living with this condition.I have lots of questions, as everyone is unique in foods which trouble them. Although three months on Elmiron with a shortage in our area, my consern is I won't have enough to make a difference in the healing. Am I sabotaging my diet by using agave to sweeten the Chamomile tea?
Thanks for reading my story. *Thanks for being strong.*hopeful for a cure
Kathie
*
to the IC Network family.
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