Crimson&Clover
05-21-2009, 01:48 PM
Thank you for this wonderful platform…I have been lurking here for a while and have finally decided to join. I am not sure where to begin – so I guess I’ll just begin…
I’m a 59 year old mother and grandmother. Past abdominal surgery’s I have had are C-Section, tubaligation, hernia surgery, radical hysterectomy and bi-lateral oopherectomy with removal of sixty-three lymph nodes for cervical cancer, and lastly, emergency gall bladder surgery. I don’t know if this has any relevancy to IC, but I have many allergies. I have not, as of yet, been ‘formally’ diagnosed with IC, but after doing extensive online research – I suspect I may have had ‘undiagnosed’ IC for 40 years now. What brought me to seek help at this time from an Urologist was a very sudden change in my urinary frequency/urgency/pressure…that turned into burning pain and frequent intense pelvic discomfort Thank God for this forum…I have learned so much here. Thank you all.
To make a long story short, I have been dealing with urgency, frequency, and bladder pressure on and off for 40 years. Things changed quickly after drinking the prep solution for a routine colonoscopy; my bladder behavior very suddenly and very drastically changed for the worse. Something was all of a sudden different – and I knew it immediately after drinking the prep.
Due to the scar tissue present in my colon from all the prior abdominal surgery’s I have had, the gastroenterologist was unable to complete the first colonoscopy using a pediatric endoscope. As a result, a ‘repeat’ colonoscopy was then scheduled a few weeks later under general anesthesia in the hospital, which required again drinking the bowl prep solution (movi-prep) a second time. My bladder has not been the same since the first (incomplete) colonoscopy, and then got worse after the second colonoscopy a few weeks later. After both colonoscopies, I went home and experienced excruciating pain for six to eight hours, which finally subsided. Symptoms of bladder and urethra issues then immediately escalated.
So for almost three months now, I have experienced pelvic spasms and chronic to severe pain in my abdomen, bladder, lower back and urethra, along with urination approximately thirty six to forty times a day. The pain feels like an acid sting/burn, and is only alleviated briefly during urination, but comes back immediately after. Most nights I am up voiding six to twelve times. I feel like I live my life in the bathroom. I am exhausted. My primary care physician thought I should schedule a urology appointment, as I have been on (generic) Detrol for frequent urination for almost two years. After making an appointment with a female urologist, the wait to get in for an appointment was one month. I patiently waited.
By the time the date for the appointment finally arrived, I was feeling very weak and increasingly debilitated. I don’t know if this is relevant to anything, but my in office blood pressure was 90 over 50…quite a bit lower than normal. I kept a voiding diary, informed the urologist of past surgeries and medications, and told her what has been going on the past few months since the two colonoscopies. I was hopeful for an informative and intelligent two-way communication to begin to sort out this condition and get on with the process of living – but she was very aloof and appeared completely disinterested in anything I had to say. The in office urine culture came back negative for infection, but showed microscopic blood. (I had to ask about the urine test – she did not voluntarily inform me of anything.)
I did not tell her of my suspicions of IC as I wanted her unbiased and professional opinion. After a very brief exam and a couple of questions about incontinence (which has never been a problem) she told me she suspected I may have IC, and sent me off with a prescription for Elmiron - along with orders for blood work and an abdominal and pelvic CT scan, both with and without contrast. She quickly stated that after she received those lab and radiology results, (which she said the receptionists at the front desk would schedule), she would call to schedule a follow-up ‘in office cystoscopy’ for my next visit.
I am not normally a complainer, and told her I never had experienced such intense pain for so long, and asked her about pain management in the interim, and she informed me that neither she nor any of her fellow urologists in the practice believe in prescribing pain medication for IC. She then told me to take Tylenol or Motrin if I was hurting. I told her that neither Tylenol nor Motrin alleviated my pain, (Motrin actually aggravated the pain), and I was a t a loss as to how to get on with the process of coping on a daily basis with my responsibilities. I was really taken aback by her disrespect and lack of listening to me – I have never encountered that type of doctor/patient relationship before. I told her that I was not a drug addict, that I had responsibilities that required me to be able to function, and that I needed some ‘relief’ simply to manage my life day to day - as I felt that my body was becoming more and more debilitated from trying to manage this constant chronic pain with no relief. (Normally I am a very active 59 year old woman, and with the help of my husband of 40 years, we are raising three of our grandchildren, aged ten, seven, and four.)
She looked at me perturbed saying “I didn’t say you were a drug addict”, and then reluctantly wrote out a prescription for ten Vicodin pills, telling me not to take them unless it was ‘absolutely necessary’, and then quickly left the room. (She had no clue about me or what I am about – and simply did not care enough to give me the time of day. She had her own definitive agenda, which involved moving on as quickly as possible to the next patient.) She quickly exited the room and sent me off to the front desk, explaining nothing about Elmiron, the tests she ordered, IC, or anything else. I was both astonished and puzzled by her abrasive and unprofessional behavior. I gathered up my papers that I had carefully prepared ahead of time for this visit, and went to the front desk… more confused than when I arrived.
I went home and cried. I waited another three days and never heard from the urologist office. I was feeling worse and worse, and finally called the urologist office to see if the blood test and abdominal and pelvic CT scans were scheduled yet. The receptionist told me to call a lab and schedule my own blood work and CT scans wherever I wanted. I did. The medical facility called me back to see if I had any allergies, and I told them of my allergies (mainly to shellfish). Due to my allergies, they told me I had to have the CT scans in the hospital, and had to first go to my pharmacy and pick up two medications that I needed to take prior to having the CT scans. I followed all the instructions, determined, but feeling more tired, sick, and debilitated as each day went by. As the days passed after my original urology appointment, I felt weaker and weaker due to my inability to effectively manage this chronic pain.
I eventually became so ill I just stayed in bed – not having the energy to eat or to get up. This behavior was so unlike me that my daughter and husband insisted that I visit my primary care doctor or go to the ER immediately, as I had now began developing a sharp cough, chills, total loss of appetite, and complete lethargy. Concerned, my husband went with me to make sure that I told my primary care doctor all that had been transpiring due to both the physical exhaustion, lung congestion, and the suspected IC diagnosis. He didn’t know what was going on with me, or if there was a connection to what was now physically happening to me in more areas than one. On that Wednesday, my primary care doctor took another urine culture (to be sent out), and in the interim put me on the antibiotic - Augmentin – we were not sure what the antibiotic was for as too much was happening. (The urine culture ultimately came back negative for UTI).
The following Friday I went to the hospital and had the CT scans, and within an hour of getting home from the hospital, the nurse from the urology office called me expressing concern, saying that the hospital radiologist just called the office and faxed over the results of the CT scans. The radiologist stated that the CT results showed that I have a bad patch of pneumonia in my lungs, and they told me to call my primary care doctor immediately to let him know. The urology nurse asked me if I was aware of this condition, and I told her I was put on an antibiotic but I was not sure for what, and that I had been becoming weaker and weaker day by day trying to deal with the pelvic, back, and bladder pain. I was so sick everywhere, and no longer knew where to turn to get help. I explained to the urology nurse that due to chronic pain, I felt I no longer had the strength or energy to fight off anything. (I have never had pneumonia before, but never have I experienced such debilitating and chronic pain on a daily basis either.) I then asked the nurse about scheduling my next urology appointment and was informed that the pneumonia has to be cleared up before scheduling the in office Cystoscopy. Next week I am scheduled for an appointment with my primary care physician (and perhaps another CT scan) to see if the pneumonia has cleared. The urology office scheduled a Cystoscopy for June 15th (six weeks after my original appointment).
I have had a few serious medical conditions during the course of my life, to include cancer, and I guess the reason I am writing is to simply vent my frustrations with respect to the urologist that I am paying for “treatment”. I feel that I have never before in my life been in so much debilitating pain, nor have I ever been so disrespected and discouraged about my health condition. I need medical help, and feel helpless that I am being ‘dismissed’ over a painful chronic medical condition that prevents me from living my life and caring for my grandchildren. The urologist treated me as if I was simply a ‘number’ on her patient roster for the day; she listened to little of what I said, explained nothing, and dismissed me as if I was ignorant and irrelevant, then quickly moved on to the next patient.
Thanks to the information provided here on this site from all the wonderful people here; hot baths and heating pads help to relieve some of the pain, (but unfortunately I cannot sit in the tub all day…if only life were that simple.) I have also eliminated everything from my diet that is considered an ‘IC trigger’ – and I’m not sure it has had the impact I had hoped for…perhaps it takes weeks for the bladder to settle down? I am normally so positive and usually I am the ‘eternal optimist’ about everything in life, but these days I’m not sure what else I can do to get back up on my feet and get on with my life. I looked on the site under ‘Professionals’ for recommended IC specialists in my area, found one Urologist within an hour away, and called to find out that he is not accepting any new patients and hasn’t been for a year and a half now. I feel doomed.
My young grandchildren need me to be as healthy and as energetic as I used to be before all this, as I am their primary nurturer and caregiver – I only hope and pray there is a brighter light somewhere along the course of this journey.
If you made it reading this far, thanks very much for listening. I apologize for the length of this post…it is just nice be to able to “connect” with others that perhaps understand some of what I have been experiencing. You are a wonderful and supportive group, and I appreciate you all being here.
I’m a 59 year old mother and grandmother. Past abdominal surgery’s I have had are C-Section, tubaligation, hernia surgery, radical hysterectomy and bi-lateral oopherectomy with removal of sixty-three lymph nodes for cervical cancer, and lastly, emergency gall bladder surgery. I don’t know if this has any relevancy to IC, but I have many allergies. I have not, as of yet, been ‘formally’ diagnosed with IC, but after doing extensive online research – I suspect I may have had ‘undiagnosed’ IC for 40 years now. What brought me to seek help at this time from an Urologist was a very sudden change in my urinary frequency/urgency/pressure…that turned into burning pain and frequent intense pelvic discomfort Thank God for this forum…I have learned so much here. Thank you all.
To make a long story short, I have been dealing with urgency, frequency, and bladder pressure on and off for 40 years. Things changed quickly after drinking the prep solution for a routine colonoscopy; my bladder behavior very suddenly and very drastically changed for the worse. Something was all of a sudden different – and I knew it immediately after drinking the prep.
Due to the scar tissue present in my colon from all the prior abdominal surgery’s I have had, the gastroenterologist was unable to complete the first colonoscopy using a pediatric endoscope. As a result, a ‘repeat’ colonoscopy was then scheduled a few weeks later under general anesthesia in the hospital, which required again drinking the bowl prep solution (movi-prep) a second time. My bladder has not been the same since the first (incomplete) colonoscopy, and then got worse after the second colonoscopy a few weeks later. After both colonoscopies, I went home and experienced excruciating pain for six to eight hours, which finally subsided. Symptoms of bladder and urethra issues then immediately escalated.
So for almost three months now, I have experienced pelvic spasms and chronic to severe pain in my abdomen, bladder, lower back and urethra, along with urination approximately thirty six to forty times a day. The pain feels like an acid sting/burn, and is only alleviated briefly during urination, but comes back immediately after. Most nights I am up voiding six to twelve times. I feel like I live my life in the bathroom. I am exhausted. My primary care physician thought I should schedule a urology appointment, as I have been on (generic) Detrol for frequent urination for almost two years. After making an appointment with a female urologist, the wait to get in for an appointment was one month. I patiently waited.
By the time the date for the appointment finally arrived, I was feeling very weak and increasingly debilitated. I don’t know if this is relevant to anything, but my in office blood pressure was 90 over 50…quite a bit lower than normal. I kept a voiding diary, informed the urologist of past surgeries and medications, and told her what has been going on the past few months since the two colonoscopies. I was hopeful for an informative and intelligent two-way communication to begin to sort out this condition and get on with the process of living – but she was very aloof and appeared completely disinterested in anything I had to say. The in office urine culture came back negative for infection, but showed microscopic blood. (I had to ask about the urine test – she did not voluntarily inform me of anything.)
I did not tell her of my suspicions of IC as I wanted her unbiased and professional opinion. After a very brief exam and a couple of questions about incontinence (which has never been a problem) she told me she suspected I may have IC, and sent me off with a prescription for Elmiron - along with orders for blood work and an abdominal and pelvic CT scan, both with and without contrast. She quickly stated that after she received those lab and radiology results, (which she said the receptionists at the front desk would schedule), she would call to schedule a follow-up ‘in office cystoscopy’ for my next visit.
I am not normally a complainer, and told her I never had experienced such intense pain for so long, and asked her about pain management in the interim, and she informed me that neither she nor any of her fellow urologists in the practice believe in prescribing pain medication for IC. She then told me to take Tylenol or Motrin if I was hurting. I told her that neither Tylenol nor Motrin alleviated my pain, (Motrin actually aggravated the pain), and I was a t a loss as to how to get on with the process of coping on a daily basis with my responsibilities. I was really taken aback by her disrespect and lack of listening to me – I have never encountered that type of doctor/patient relationship before. I told her that I was not a drug addict, that I had responsibilities that required me to be able to function, and that I needed some ‘relief’ simply to manage my life day to day - as I felt that my body was becoming more and more debilitated from trying to manage this constant chronic pain with no relief. (Normally I am a very active 59 year old woman, and with the help of my husband of 40 years, we are raising three of our grandchildren, aged ten, seven, and four.)
She looked at me perturbed saying “I didn’t say you were a drug addict”, and then reluctantly wrote out a prescription for ten Vicodin pills, telling me not to take them unless it was ‘absolutely necessary’, and then quickly left the room. (She had no clue about me or what I am about – and simply did not care enough to give me the time of day. She had her own definitive agenda, which involved moving on as quickly as possible to the next patient.) She quickly exited the room and sent me off to the front desk, explaining nothing about Elmiron, the tests she ordered, IC, or anything else. I was both astonished and puzzled by her abrasive and unprofessional behavior. I gathered up my papers that I had carefully prepared ahead of time for this visit, and went to the front desk… more confused than when I arrived.
I went home and cried. I waited another three days and never heard from the urologist office. I was feeling worse and worse, and finally called the urologist office to see if the blood test and abdominal and pelvic CT scans were scheduled yet. The receptionist told me to call a lab and schedule my own blood work and CT scans wherever I wanted. I did. The medical facility called me back to see if I had any allergies, and I told them of my allergies (mainly to shellfish). Due to my allergies, they told me I had to have the CT scans in the hospital, and had to first go to my pharmacy and pick up two medications that I needed to take prior to having the CT scans. I followed all the instructions, determined, but feeling more tired, sick, and debilitated as each day went by. As the days passed after my original urology appointment, I felt weaker and weaker due to my inability to effectively manage this chronic pain.
I eventually became so ill I just stayed in bed – not having the energy to eat or to get up. This behavior was so unlike me that my daughter and husband insisted that I visit my primary care doctor or go to the ER immediately, as I had now began developing a sharp cough, chills, total loss of appetite, and complete lethargy. Concerned, my husband went with me to make sure that I told my primary care doctor all that had been transpiring due to both the physical exhaustion, lung congestion, and the suspected IC diagnosis. He didn’t know what was going on with me, or if there was a connection to what was now physically happening to me in more areas than one. On that Wednesday, my primary care doctor took another urine culture (to be sent out), and in the interim put me on the antibiotic - Augmentin – we were not sure what the antibiotic was for as too much was happening. (The urine culture ultimately came back negative for UTI).
The following Friday I went to the hospital and had the CT scans, and within an hour of getting home from the hospital, the nurse from the urology office called me expressing concern, saying that the hospital radiologist just called the office and faxed over the results of the CT scans. The radiologist stated that the CT results showed that I have a bad patch of pneumonia in my lungs, and they told me to call my primary care doctor immediately to let him know. The urology nurse asked me if I was aware of this condition, and I told her I was put on an antibiotic but I was not sure for what, and that I had been becoming weaker and weaker day by day trying to deal with the pelvic, back, and bladder pain. I was so sick everywhere, and no longer knew where to turn to get help. I explained to the urology nurse that due to chronic pain, I felt I no longer had the strength or energy to fight off anything. (I have never had pneumonia before, but never have I experienced such debilitating and chronic pain on a daily basis either.) I then asked the nurse about scheduling my next urology appointment and was informed that the pneumonia has to be cleared up before scheduling the in office Cystoscopy. Next week I am scheduled for an appointment with my primary care physician (and perhaps another CT scan) to see if the pneumonia has cleared. The urology office scheduled a Cystoscopy for June 15th (six weeks after my original appointment).
I have had a few serious medical conditions during the course of my life, to include cancer, and I guess the reason I am writing is to simply vent my frustrations with respect to the urologist that I am paying for “treatment”. I feel that I have never before in my life been in so much debilitating pain, nor have I ever been so disrespected and discouraged about my health condition. I need medical help, and feel helpless that I am being ‘dismissed’ over a painful chronic medical condition that prevents me from living my life and caring for my grandchildren. The urologist treated me as if I was simply a ‘number’ on her patient roster for the day; she listened to little of what I said, explained nothing, and dismissed me as if I was ignorant and irrelevant, then quickly moved on to the next patient.
Thanks to the information provided here on this site from all the wonderful people here; hot baths and heating pads help to relieve some of the pain, (but unfortunately I cannot sit in the tub all day…if only life were that simple.) I have also eliminated everything from my diet that is considered an ‘IC trigger’ – and I’m not sure it has had the impact I had hoped for…perhaps it takes weeks for the bladder to settle down? I am normally so positive and usually I am the ‘eternal optimist’ about everything in life, but these days I’m not sure what else I can do to get back up on my feet and get on with my life. I looked on the site under ‘Professionals’ for recommended IC specialists in my area, found one Urologist within an hour away, and called to find out that he is not accepting any new patients and hasn’t been for a year and a half now. I feel doomed.
My young grandchildren need me to be as healthy and as energetic as I used to be before all this, as I am their primary nurturer and caregiver – I only hope and pray there is a brighter light somewhere along the course of this journey.
If you made it reading this far, thanks very much for listening. I apologize for the length of this post…it is just nice be to able to “connect” with others that perhaps understand some of what I have been experiencing. You are a wonderful and supportive group, and I appreciate you all being here.