Discussions By Condition: Medical Errors

intersticial cystitus

Posted In: Medical Errors 3 Replies
  • Posted By: auntyl
  • June 25, 2010
  • 07:40 PM

Such a long sad and bad story but will try to keep it reasonable.
Following the birth of my second son by planned csection sterilisation, waking in severe pain, cathetered and losing blood, settled after 12hrs or so, following day felt typical bacterial cystitus infection, frequency pain passing, feverish, told nurse, dismissed as post op, apparently l was being soft, 3 days later finally took sample, confirmed bacteria, put on anti b,s.
home 8day later, felt unwell, nurse calling daily, uterus not gone back into position and new blood loss, few days dr called out, examined internal infection with blood clots, missed and left placenta, pills to eject and clear. Improved but not really as fit as should be, bleeding for 7-8wks to post op, then when menustration started it went on l0days heavy loss, followed by severe pain in lower back, soreness, stinging, tiredness, frequency, this happened each month, urine samples showed no bacteria,
but frequent thrush, occassional aneamia, treated for but returned soon, sent for d and c, nothing found amiss, though felt very ill after it for days.
So it went on months, years, treated for symptoms, no diagnosis, or rather post op, gynealogical, hormonal, the hormone pills gave me violent headaches, another pill danazol made me sweat and throw up, so pattern was heavy menustration did return to 5-6 days after a year, but followed by chronic back pain, sorenss stinging, tired fatigue, nausea, frequency.
another week or same symptoms not quite as severe, then a mild symtom week, quite a good week leading up to menustrating, the only week in the month l dare attempt intercourse, due to discomfort and it setting a flare up, as it could. Tum always big and tender, could hardly nurse my son in comfort, along with severe symptoms l would deteriorate mentally, be it depression, anxiety, touchiness, moods, outbursts, but not just in response to how l felt, more a life of its own. During this time of years l spoke to many medical people, wrote to many more, tried different supplaments, alternatives, diets, non sugar, non yeast, nothing changed.
After years paid for two private consultations, examined, nothing found other than confirmed flooding loss, l,d chosen a gyneacologist, as was led to think thats what l needed. Soon after became worse, gp out, had kidney infection, xray done, bladder not emptying propertly, given anti bs, one a week, huge tablets, and two iodine pessaries daily, they anti just about everything, bacteria, thrush, protozoa, agoney to use, leading to big loss of yellow crystalised gunge, followed by big loss of thrush, after 2-3 weeks, actually felt well, best in years, could run and jump thrilled,
ironically at that time my husband caught scepticeami, very ill, in hospital 2 wks, home well, felt a need for sex, as did l, threw caution to the wind, back to sq one with my symptoms. Then became very ill, taken into hospital, tests and more tests, many painful, laprascope, needed morphine, hyper and in pain with it, consultant comes into to casually tell me they found nothing wrong, marches out, shout after him well whats wrong with me, he mentioned something about possible bladder problem, but didnt refer me, so went home, very ill, pain, frequency, nausea couldnt eat, tea and biscuits only, weak, in bed, slightest exertion and sweating, nightmare, mentally lost it, screaming in despair, husband brings doc out, gives me amitrip, which completely knock me out, but did improve frequency probs, though gave me diareah, more pills for that, 5days later managed to get up and move about, still nauseous and sweating, in that time saw 3 different gp,s, no diagnosis, great emphasis placed on my poor mental state, leading to reference to hypacondria, neurotic, by which time l simply hated the dr,s, all of them. But did agree on feeling a bit better to try group therapy, couldnt take it seriously, as knew l had a physical problem, told the therapist such, but obviously no understanding and donto oppose gp,s. Settled into pattern as before, but saw gyneacologist again, this time told l,d fibroids in my uterus, needed full hysterectomy,
at simular time started with intense gall bladder pain, so scan for that, keyhole surgery removed it in 2 day stay, at least that was successful and easy, the gall bladder surgeion told me there was no such thing as fibroids in the uterus. But decided to go for hysterectomy, as it would at least get rid of flooding menustration and may bring diagnosis for my problems, it didnt, went home and same symptoms reoccurred, bleeding apart, soul destroying for me, my husband, and my sons, who by now were old enough to understand, and had seen me many times ill with pain and distress, though on the whole managed to shield them from worst of it, knew enough to know l didnt want them to suffer a miserable childhood, so it was enjoy go and do when well enough, and keep low profile when not, cant say same for husband as he did get some flak from time to time. Had another bad bout of illness, different gp visited, he referred me to a urologist, after we had prompted him, finally seeing a connection, waited 3 month for xray, ok, then for scan okish, finally a cystascope, camera looking inside bladder, also salt infusion put inside, which did cause blood loss, abnormal, as was biopsy on bladder wall,
pin point hemmorages, scar tissue, fibrogen layer worn, other abnormals,
l think deep seated infection, due to something the pharmacist told me aabout the pills l was prescribed, though neither urologist or gp,s said that, but they wouldnt would they. The urologist was very good, prescribed amitrip as nerve end calmer in low dose, not anti depressant dose as gp had given me, re 60, from urologist loml, also cimetidine an histamine receptor, as was producing too many mast cells, as is typical of people with Interstitial Cystitus, chronic bladder inflammation, not known to be caused by bacteria, re clear samples, unknown cause, maybe immune auto, allergens, at that time no research at all in the uk, and considered an orphan disease, though research in usa, some of europe,
thought to be l in 700 with it, the most painful debilitating mentally disturbing condition, yet virtually unknown by public, little known by gp,s, then effect underestimated, though it does vary person to person, at best some discomfort but can lead normalish life re work social sex, to those whove taken their own lives due to it, and those whove chose to have thier bladder removed replaced with bag. some young women amongst them. My urologist referred me to a support group, run by annette a suffered who,d chose to have her bladder removed, whilst her sister who suffered badly took her own life, leading annette to start support group.
The group were a godsend, supporting, info, advice, friends, to this day years later. Over the following few years my symtoms settled to the odd niggles, and occassional flare up, though not as severe or often, could finally live a more normal life, sadly my mum, who,d also doubted that it was a physical problem, died a few week after my diagnosis, and my poor husband the following year at 49yrs, suddenly, just a few month after we,d bought a mobile home on coast, to try and catch up on lost hols and re strengthen our partnership. The doctors all knew eventually how it affected me and family, no apologies, never saw the main dr after that, couldnt stand him, his neglect, incompatence, callousness, l,d sort of lost l3yrs of my normal life, could have been prevented, just needed referral to urologist, shouldnt have been so difficult. Sadly l wasnt unique, quite a few lived with pain and ill health, undiagnosed, misdiagnosed, for usual being 2yrs min, to 20yrs, l think Dr,s are now more aware, due to group and publicity, but there may be some still struggling with simular symptoms and getting no diagnosis, only reason l write this, as its a painful episode l choose not to dwell on, my anger and bitterness virtually gone, didnt want that for my sake, or my sons, as still young when their dad died without me being bitter. Might add 8yrs later got a diagnosis of cancer, where the gps consultant all staff at chemo and radiotherapy have been fantastic, and l have done well with treatment, and still do well, but would not like anyone to have my ic experience, so if it helps one person worthwhile.

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3 Replies:

  • ya it's very interesting.
    premeet01245 14 Replies Flag this Response
  • Such a long sad and bad story but will try to keep it reasonable.Following the birth of my second son by planned csection sterilisation, waking in severe pain, cathetered and losing blood, settled after 12hrs or so, following day felt typical bacterial cystitus infection, frequency pain passing, feverish, told nurse, dismissed as post op, apparently l was being soft, 3 days later finally took sample, confirmed bacteria, put on anti b,s.home 8day later, felt unwell, nurse calling daily, uterus not gone back into position and new blood loss, few days dr called out, examined internal infection with blood clots, missed and left placenta, pills to eject and clear. Improved but not really as fit as should be, bleeding for 7-8wks to post op, then when menustration started it went on l0days heavy loss, followed by severe pain in lower back, soreness, stinging, tiredness, frequency, this happened each month, urine samples showed no bacteria,but frequent thrush, occassional aneamia, treated for but returned soon, sent for d and c, nothing found amiss, though felt very ill after it for days.So it went on months, years, treated for symptoms, no diagnosis, or rather post op, gynealogical, hormonal, the hormone pills gave me violent headaches, another pill danazol made me sweat and throw up, so pattern was heavy menustration did return to 5-6 days after a year, but followed by chronic back pain, sorenss stinging, tired fatigue, nausea, frequency.another week or same symptoms not quite as severe, then a mild symtom week, quite a good week leading up to menustrating, the only week in the month l dare attempt intercourse, due to discomfort and it setting a flare up, as it could. Tum always big and tender, could hardly nurse my son in comfort, along with severe symptoms l would deteriorate mentally, be it depression, anxiety, touchiness, moods, outbursts, but not just in response to how l felt, more a life of its own. During this time of years l spoke to many medical people, wrote to many more, tried different supplaments, alternatives, diets, non sugar, non yeast, nothing changed.After years paid for two private consultations, examined, nothing found other than confirmed flooding loss, l,d chosen a gyneacologist, as was led to think thats what l needed. Soon after became worse, gp out, had kidney infection, xray done, bladder not emptying propertly, given anti bs, one a week, huge tablets, and two iodine pessaries daily, they anti just about everything, bacteria, thrush, protozoa, agoney to use, leading to big loss of yellow crystalised gunge, followed by big loss of thrush, after 2-3 weeks, actually felt well, best in years, could run and jump thrilled,ironically at that time my husband caught scepticeami, very ill, in hospital 2 wks, home well, felt a need for sex, as did l, threw caution to the wind, back to sq one with my symptoms. Then became very ill, taken into hospital, tests and more tests, many painful, laprascope, needed morphine, hyper and in pain with it, consultant comes into to casually tell me they found nothing wrong, marches out, shout after him well whats wrong with me, he mentioned something about possible bladder problem, but didnt refer me, so went home, very ill, pain, frequency, nausea couldnt eat, tea and biscuits only, weak, in bed, slightest exertion and sweating, nightmare, mentally lost it, screaming in despair, husband brings doc out, gives me amitrip, which completely knock me out, but did improve frequency probs, though gave me diareah, more pills for that, 5days later managed to get up and move about, still nauseous and sweating, in that time saw 3 different gp,s, no diagnosis, great emphasis placed on my poor mental state, leading to reference to hypacondria, neurotic, by which time l simply hated the dr,s, all of them. But did agree on feeling a bit better to try group therapy, couldnt take it seriously, as knew l had a physical problem, told the therapist such, but obviously no understanding and donto oppose gp,s. Settled into pattern as before, but saw gyneacologist again, this time told l,d fibroids in my uterus, needed full hysterectomy,at simular time started with intense gall bladder pain, so scan for that, keyhole surgery removed it in 2 day stay, at least that was successful and easy, the gall bladder surgeion told me there was no such thing as fibroids in the uterus. But decided to go for hysterectomy, as it would at least get rid of flooding menustration and may bring diagnosis for my problems, it didnt, went home and same symptoms reoccurred, bleeding apart, soul destroying for me, my husband, and my sons, who by now were old enough to understand, and had seen me many times ill with pain and distress, though on the whole managed to shield them from worst of it, knew enough to know l didnt want them to suffer a miserable childhood, so it was enjoy go and do when well enough, and keep low profile when not, cant say same for husband as he did get some flak from time to time. Had another bad bout of illness, different gp visited, he referred me to a urologist, after we had prompted him, finally seeing a connection, waited 3 month for xray, ok, then for scan okish, finally a cystascope, camera looking inside bladder, also salt infusion put inside, which did cause blood loss, abnormal, as was biopsy on bladder wall, pin point hemmorages, scar tissue, fibrogen layer worn, other abnormals, l think deep seated infection, due to something the pharmacist told me aabout the pills l was prescribed, though neither urologist or gp,s said that, but they wouldnt would they. The urologist was very good, prescribed amitrip as nerve end calmer in low dose, not anti depressant dose as gp had given me, re 60, from urologist loml, also cimetidine an histamine receptor, as was producing too many mast cells, as is typical of people with Interstitial Cystitus, chronic bladder inflammation, not known to be caused by bacteria, re clear samples, unknown cause, maybe immune auto, allergens, at that time no research at all in the uk, and considered an orphan disease, though research in usa, some of europe, thought to be l in 700 with it, the most painful debilitating mentally disturbing condition, yet virtually unknown by public, little known by gp,s, then effect underestimated, though it does vary person to person, at best some discomfort but can lead normalish life re work social sex, to those whove taken their own lives due to it, and those whove chose to have thier bladder removed replaced with bag. some young women amongst them. My urologist referred me to a support group, run by annette a suffered who,d chose to have her bladder removed, whilst her sister who suffered badly took her own life, leading annette to start support group.The group were a godsend, supporting, info, advice, friends, to this day years later. Over the following few years my symtoms settled to the odd niggles, and occassional flare up, though not as severe or often, could finally live a more normal life, sadly my mum, who,d also doubted that it was a physical problem, died a few week after my diagnosis, and my poor husband the following year at 49yrs, suddenly, just a few month after we,d bought a mobile home on coast, to try and catch up on lost hols and re strengthen our partnership. The doctors all knew eventually how it affected me and family, no apologies, never saw the main dr after that, couldnt stand him, his neglect, incompatence, callousness, l,d sort of lost l3yrs of my normal life, could have been prevented, just needed referral to urologist, shouldnt have been so difficult. Sadly l wasnt unique, quite a few lived with pain and ill health, undiagnosed, misdiagnosed, for usual being 2yrs min, to 20yrs, l think Dr,s are now more aware, due to group and publicity, but there may be some still struggling with simular symptoms and getting no diagnosis, only reason l write this, as its a painful episode l choose not to dwell on, my anger and bitterness virtually gone, didnt want that for my sake, or my sons, as still young when their dad died without me being bitter. Might add 8yrs later got a diagnosis of cancer, where the gps consultant all staff at chemo and radiotherapy have been fantastic, and l have done well with treatment, and still do well, but would not like anyone to have my ic experience, so if it helps one person worthwhile.It took ten years for me to get dignosed. I'm now on elmeron and finally leving a "normal" life. Too bad family Dr. do not know much about IC if they did so many people would not have to go through years of pain.
    Anonymous 42789 Replies Flag this Response
  • I am sorry you went through this. I am new to this forum and looking for more stories, not on diagnosis, rather experience with symptoms and estimated number of UTI and bladder infection diagnosis. Your story helped me. I see a urologist for the second time in 10 years this Monday. I have been experiencing symptoms since the age of 13. As the years passed, the symptoms and degrees of symptoms changed. I am now 35 and reading stories is a bit daunting and frightening, but I've been living with this pain for so long, I just want to know that there is something and not just a condition I have to live with because it is "common."
    Anonymous 1 Replies Flag this Response
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