rebekahpoet
07-08-2009, 04:05 PM
Dear Friends:
Update to what I wrote below:
I went to my doctor after going last week and my pain getting terribly worse. The pain has been spreading across my pelvic area and it has been pulsating, throbbing and excrutiating pain.
She told me today that she would need to a Cystoscopy with hydrodystention. My doctor said she was concerned about my pain levels with the Cysto with Hydro but that she thought the test had to be done. I am TERRIFIED of getting this procedure. PLEASE HELP WITH ANY SUGGESTIONS!
ALSO, I am had recurrent bacterial urinary infections in the past few months and SEVERE PELVIC PAIN so I am afraid this will re invoke pain. Please tell me what you would do...The big question is right now: Is IC what is causing my Pelvic Pain? It seems to be...but I do not have the frequency everyone talks about...I just have the pain...
I WANT TO KNOW FOR SURE IF I HAVE IC, BUT I HAVE BEEN TRYING TO AVOID THIS AT ALL COSTS!! PLEASE HELP!!!!!
DON'T KNOW IF I SHOULD GET THIS...ESPECIALLY WITH READING MIXED REPORTS ON THIS SITE ABOUT WOMEN BEING IN PAIN...ALSO IF I DO NOT HAVE IC:
WON'T I HAVE MORE PAIN?? (IF I DO NOT HAVE A DEFINITIVE CASE OF IC?)
I am terrified of this. I am already in such pain and I cannot imagine having more pain that I am already having. I am wondering if I say "no" to the procedure, what happens then...I mean, I feel I need it but on the other hand I am not sure if I have the courage to do it b/c of the mixed things I have heard about it.
She says this is the only way we will really get to the bottom of an IC diagnosis, at least, in her mind.
Anyway, I am trying to get connected with some Seattle people online and I would appreciate if you read my story below.
I am also interested in starting a support group for IC here in Seattle.
Thanks,
Rebekah
Dear Friends,
I have been through so much and do not even know where to start.
Many of you, who I am at least starting to work on writing individually to tonight, (If I have not gotten to you yet, just know that I have a file where I keep all of your original responses to the first few times I posted and how much it has meant to me.) were there for me and I have not been plugged in as well enough as I should have been all this time. I am sorry about that friends, b/c even though we have not met, I care about all of you very much. If it was not for you wonderful women, I would not have been able to get through as much as I have up to this point. But, b/c I really need support every day, I was wondering if anyone is willing, to give me their personal e-mails. I would appreciate it. My e-mail is: seattlepoet@gmail.com.
I am supposed to be a writer, I was about two years ago, but now I just feel I cannot write anything or do anything for myself.
I first just want to say I am scared. Please do not judge me for saying this...but I am scared that I will die one day from the stress of the pain. From the stress of this condition...I am worried what will happen to me. I am wondering: When will the pain ever end? I want to know what everyone and anyone is doing out there for the pain and if you ever have the same fears...and what you do about them.
I also feel like sleeping most of the day, and have to fight the urge not to sleep all day as a means of escape from the pain.
Also, I have no real friends that have stuck by me. I have a dysfunctional family to say the least and my father has been there somewhat, but he cannot handle me talking about my pain either. He just wants me to call him when I am having a good, not a bad, day. For me, bad days lately seem to be every day. Really. I just feel like crying, but the tears will not come out.
I have been a good friend, and I have gotten ditched ever since I got diagnosed with this condition.
My husband Greg told me tonight that he is not there for me emotionally. He said he does not want me to talk about my pain with him. He said he would just see it as me being a "downer". He said he can work two jobs (I am unemployed, we are poor and our financial situation is from bad to worse b/c of me being unemployed) and that is it. I was expressing to him in as constructive a way possible that I was worried that when my unemployment runs out, I may have to go on disability.
And I keep getting conflicting information about my condition from the doctors...(read below) which is not helping. I lived every day for the doctor's appointment and I was hoping I would get more out of the appointment, but I did not.
I started seeing a therapist but it will take me a long time to build up a rapport with her b/c I just started seeing her. All she told me to do was if I feel suicidal to call 911 or the crisis hotline. I would not call 911 b/c I would not want to end up in an Inpatient clinic without my cats.
Because I did not want to seem like a negative patient, I wanted to give the doc good news. Instead, I ended up shooting myself in the foot.
That same day, I had a pelvic ultrasound. The day before, I had a vaginal exam, something they were not even able to do a few weeks prior at myf rist appointment with her on June 7th.
My pain is so bad every day and still so bad every day but this latest pain flare started RIGHT AFTER I waited a month for my second follow up with the specialist. It was ALREADY BAD, but the Neurontin had been helping and I am terrified about getting an Instillation and a Hydrodystention and my pain has been so bad and my intolerance to catheters so intense, that my doctor said it would be a few months before she tried any of that. Also, I had gone to (supposedly the head researcher here at the University of Washington, but to me, she was inaccurate in everything she said and she thoroughly confused me even more.) Dr. *** to get information as a "consult". Dr. **** had said that although I "probably" have IC, my pictures that I carry around with me of my red, inflamed bladder was "normal" to her.
I was so confused. If **** had told me on June 7th tht i had a classic bladder that showed all of the pinpoint hemorrhages (what she called it) of an IC bladder and that she would treat me classically with Neurontin, then why would Dr. **** say that I may not even have IC? She said she is calling it Pelvic Pain Syndrome and Dr. **** (they are not related) said the next day that they are getting away from IC and going more towards PPS b/c they re finding that PPS covers more women and more women do not have IC but have PPS. So, when I asked Dr. **** what I had, she said I probably had IC, but in order to do a thorough diagnostic tool, she would have to do a hydrodystention, but that I am not read for one yet as I am still healing form the Neurontin.
Dr. **** said she thought it was all a combination of my car accident (at the end of March, where the steering wheel hit my pelvic area and was two days after a ruptured cyst) and the fall I had on my kitchen floor, in which I fell flat on my pelvic area, hitting my tailbone on the cement floor, and all of the urinary infections. She said that area is just generally aggravated but was skeptical if it was just IC. I asked her if I had IC and she said I could call it that, but that she thought it might be more muscular. I AM SO FRICKING CONFUSED? ! ! I had had nothing but pain when my bladder fills and widespread, deep, shooting, stabbing, pulsating, throbbing pain, especially on my right side, but I do not have the same frequency but I DO have urgency.
Last time I wrote, if you checked my thread, I was informally diagnosed with Interstitial Cystitis after my Urologist finally acknowledged that he was not able to help me.
I waited, and waited and waited for my appointment with a doctor who is supposed to be one of the best in this area (All of the doctors in Washington state need help with knowing about IC) named Dr. ****.
Honestly, I had been sitting in my bathtub four hours a day in Epsom Salts and Baking Soda baths reading Catherine ******'s "Awakening Through the Tears" and all of the other IC books I could get my hands on, trying to figure out how I was going to make it to the next day, walking around in burning and unheard of pelvic pain, as I am going through now.
By the time I got into my appointment, I had so many questions, so many things I wanted to discuss that I was completely beyond a mess.
At that time, Dr. **** looked at my picture and told me I had the telltale signs of IC. I asked her, in tears, if I could read some letters I had been writing to her all those months and she said yes. I read those to her along with some of my symptoms.
She then (June 7) tried to do a vaginal exam and was not able to even put her finger in my vagina, I was in so much pain. I was jumping off the table. The burning and the pain is more than I can describe here. So, we did not get through the exam.
She put me on Neurontin. When she first explained the drug to me, I did not understands its function. Now, I understand that it blocks the pain receptors from hitting the damaged nerve area or pain area.
I was so scared to take Neurontin. I was suffering so much that I really did not have any faith in her or anything or anyone else, I was so deeply depressed beyond anything I could even describe.
The Neurontin really helped the first two weeks, to the point that it seemed to go down to an ache the first week (the pain.) The second week, the pain started to come back, but the burning feeling that was so strong before in my vagina had gone down. Now, it seems to be wearing off completley and I am scared for that, especially since she does not think I am anywhere near ready, due to my pain levels, to get a Hydrodystention. What I do not understand is (She very blatantly told me she was NOT giving me pain meds) why she will not give me pain medications.
She told me as long as I was willing to work with her, then we would work as a team. I thought that also meant being able to communicate questions and concerns to her when I needed to. I had questions after my appointment, so many, that I had called the Office Manager (though I was doing the right thing by this, but later the office got upset with me and did not tell me.) and asked her if the doctor would answer my many questions I had about Interstitial Cystitis. She said that should not be a problem and she would have Dr.**** e mail them to me. Well, that did not happen so then the office said to wait one day at home (I don't have a cell phone) for the doctor to call me and she never did that day. So, the next day, I was on my way out the door and Dr. **** called. She was very upset with me as apparently the office staff had told her I was being overly demanding and that I had expected to be the only patient or something. So she was giving me the riot act for not assuming I was the only patient who needed hlep even though I never meant to assume any of that and was hurt at the suggestion. All I wanted was for someone to care and to give me help. That is all I wanted. I felt like saying (and I did say and epxress some of this to her to the best of my ability) : Don't you understand emotionally how hard it is to have this kind of pain that is so misunderstood by everyone? Don't you understand the pain of having this condition and all that it entails? Don't they understand that we are doing the best we can for a condition that is more painful than many conditions that are much more publicized?
I cannot tell you how angry and upset I am at the lack of awareness on this condition. I am also trying to be positive and hopeful, to the best of my ability, although it does not seem like much.
I went to a support group here locally and I felt like everyone was feeling sorry for themselves, but nobody was supporting anyone else. Despite my pain, I was trying to give all the information I could and share whatever I could with everyone. Most people, about 90% of them, had never even ventured onto or heard of the IC Network.
I was supposed to have increased my dose by the time I went in there (I just did last night and was barely functional today) and I just started to last night. However, my pain just started coming back the day after my appointment with her on June 30th and I am upset and angry about that fact. I thought I had felt the pain come back and the Neurontin wear off, but again because of being chewed out by her that week I had questions, I was afraid of seeming anything less than extremely positive for fear that she would not let me continue as a patient.
I am scared. I am supposed to wait for my follow up until the end of August and after today, I really do not think I can wait that long. I am afraid that if I call the office, there will not be a sooner appointment.
I keep trying to find ways to relax, but my concentration is so bad from constant pain, that I simply am not able to.
My sense of isolation and desolation is pretty bad.
I also have about 100 pounds to lose and that affects my self esteem too and the pain, I feel, keeps me from doing a lot of things i Know I need to do.
I went for a two mile or so walk today (it was blazing hot here in Seattle, we are not used to that) and I got a little bit of a workout, but even light walking seems to aggravate my symptoms.
I cannot afford to buy all the IC products I want and I am bit overwhelmed at that because I know exactly what I would buy if I could.
I wish some of you lived here in Seattle. I am shocked that there is not a support group here in Seattle. Once I get a much better grip on myself and how to handle my symptoms, I would like to start a support group here in Seattle.
Anyway, I love all of you and although I talked today about my suffering, I wanted you all to know that my heart (truly) and spirit is with all of you.
Please let me know what you would do and what you think. I know that everyone is different, but I just wanted to know anything you would like to share.
Write back only if you want!
Sincerely,
Rebekah
Update to what I wrote below:
I went to my doctor after going last week and my pain getting terribly worse. The pain has been spreading across my pelvic area and it has been pulsating, throbbing and excrutiating pain.
She told me today that she would need to a Cystoscopy with hydrodystention. My doctor said she was concerned about my pain levels with the Cysto with Hydro but that she thought the test had to be done. I am TERRIFIED of getting this procedure. PLEASE HELP WITH ANY SUGGESTIONS!
ALSO, I am had recurrent bacterial urinary infections in the past few months and SEVERE PELVIC PAIN so I am afraid this will re invoke pain. Please tell me what you would do...The big question is right now: Is IC what is causing my Pelvic Pain? It seems to be...but I do not have the frequency everyone talks about...I just have the pain...
I WANT TO KNOW FOR SURE IF I HAVE IC, BUT I HAVE BEEN TRYING TO AVOID THIS AT ALL COSTS!! PLEASE HELP!!!!!
DON'T KNOW IF I SHOULD GET THIS...ESPECIALLY WITH READING MIXED REPORTS ON THIS SITE ABOUT WOMEN BEING IN PAIN...ALSO IF I DO NOT HAVE IC:
WON'T I HAVE MORE PAIN?? (IF I DO NOT HAVE A DEFINITIVE CASE OF IC?)
I am terrified of this. I am already in such pain and I cannot imagine having more pain that I am already having. I am wondering if I say "no" to the procedure, what happens then...I mean, I feel I need it but on the other hand I am not sure if I have the courage to do it b/c of the mixed things I have heard about it.
She says this is the only way we will really get to the bottom of an IC diagnosis, at least, in her mind.
Anyway, I am trying to get connected with some Seattle people online and I would appreciate if you read my story below.
I am also interested in starting a support group for IC here in Seattle.
Thanks,
Rebekah
Dear Friends,
I have been through so much and do not even know where to start.
Many of you, who I am at least starting to work on writing individually to tonight, (If I have not gotten to you yet, just know that I have a file where I keep all of your original responses to the first few times I posted and how much it has meant to me.) were there for me and I have not been plugged in as well enough as I should have been all this time. I am sorry about that friends, b/c even though we have not met, I care about all of you very much. If it was not for you wonderful women, I would not have been able to get through as much as I have up to this point. But, b/c I really need support every day, I was wondering if anyone is willing, to give me their personal e-mails. I would appreciate it. My e-mail is: seattlepoet@gmail.com.
I am supposed to be a writer, I was about two years ago, but now I just feel I cannot write anything or do anything for myself.
I first just want to say I am scared. Please do not judge me for saying this...but I am scared that I will die one day from the stress of the pain. From the stress of this condition...I am worried what will happen to me. I am wondering: When will the pain ever end? I want to know what everyone and anyone is doing out there for the pain and if you ever have the same fears...and what you do about them.
I also feel like sleeping most of the day, and have to fight the urge not to sleep all day as a means of escape from the pain.
Also, I have no real friends that have stuck by me. I have a dysfunctional family to say the least and my father has been there somewhat, but he cannot handle me talking about my pain either. He just wants me to call him when I am having a good, not a bad, day. For me, bad days lately seem to be every day. Really. I just feel like crying, but the tears will not come out.
I have been a good friend, and I have gotten ditched ever since I got diagnosed with this condition.
My husband Greg told me tonight that he is not there for me emotionally. He said he does not want me to talk about my pain with him. He said he would just see it as me being a "downer". He said he can work two jobs (I am unemployed, we are poor and our financial situation is from bad to worse b/c of me being unemployed) and that is it. I was expressing to him in as constructive a way possible that I was worried that when my unemployment runs out, I may have to go on disability.
And I keep getting conflicting information about my condition from the doctors...(read below) which is not helping. I lived every day for the doctor's appointment and I was hoping I would get more out of the appointment, but I did not.
I started seeing a therapist but it will take me a long time to build up a rapport with her b/c I just started seeing her. All she told me to do was if I feel suicidal to call 911 or the crisis hotline. I would not call 911 b/c I would not want to end up in an Inpatient clinic without my cats.
Because I did not want to seem like a negative patient, I wanted to give the doc good news. Instead, I ended up shooting myself in the foot.
That same day, I had a pelvic ultrasound. The day before, I had a vaginal exam, something they were not even able to do a few weeks prior at myf rist appointment with her on June 7th.
My pain is so bad every day and still so bad every day but this latest pain flare started RIGHT AFTER I waited a month for my second follow up with the specialist. It was ALREADY BAD, but the Neurontin had been helping and I am terrified about getting an Instillation and a Hydrodystention and my pain has been so bad and my intolerance to catheters so intense, that my doctor said it would be a few months before she tried any of that. Also, I had gone to (supposedly the head researcher here at the University of Washington, but to me, she was inaccurate in everything she said and she thoroughly confused me even more.) Dr. *** to get information as a "consult". Dr. **** had said that although I "probably" have IC, my pictures that I carry around with me of my red, inflamed bladder was "normal" to her.
I was so confused. If **** had told me on June 7th tht i had a classic bladder that showed all of the pinpoint hemorrhages (what she called it) of an IC bladder and that she would treat me classically with Neurontin, then why would Dr. **** say that I may not even have IC? She said she is calling it Pelvic Pain Syndrome and Dr. **** (they are not related) said the next day that they are getting away from IC and going more towards PPS b/c they re finding that PPS covers more women and more women do not have IC but have PPS. So, when I asked Dr. **** what I had, she said I probably had IC, but in order to do a thorough diagnostic tool, she would have to do a hydrodystention, but that I am not read for one yet as I am still healing form the Neurontin.
Dr. **** said she thought it was all a combination of my car accident (at the end of March, where the steering wheel hit my pelvic area and was two days after a ruptured cyst) and the fall I had on my kitchen floor, in which I fell flat on my pelvic area, hitting my tailbone on the cement floor, and all of the urinary infections. She said that area is just generally aggravated but was skeptical if it was just IC. I asked her if I had IC and she said I could call it that, but that she thought it might be more muscular. I AM SO FRICKING CONFUSED? ! ! I had had nothing but pain when my bladder fills and widespread, deep, shooting, stabbing, pulsating, throbbing pain, especially on my right side, but I do not have the same frequency but I DO have urgency.
Last time I wrote, if you checked my thread, I was informally diagnosed with Interstitial Cystitis after my Urologist finally acknowledged that he was not able to help me.
I waited, and waited and waited for my appointment with a doctor who is supposed to be one of the best in this area (All of the doctors in Washington state need help with knowing about IC) named Dr. ****.
Honestly, I had been sitting in my bathtub four hours a day in Epsom Salts and Baking Soda baths reading Catherine ******'s "Awakening Through the Tears" and all of the other IC books I could get my hands on, trying to figure out how I was going to make it to the next day, walking around in burning and unheard of pelvic pain, as I am going through now.
By the time I got into my appointment, I had so many questions, so many things I wanted to discuss that I was completely beyond a mess.
At that time, Dr. **** looked at my picture and told me I had the telltale signs of IC. I asked her, in tears, if I could read some letters I had been writing to her all those months and she said yes. I read those to her along with some of my symptoms.
She then (June 7) tried to do a vaginal exam and was not able to even put her finger in my vagina, I was in so much pain. I was jumping off the table. The burning and the pain is more than I can describe here. So, we did not get through the exam.
She put me on Neurontin. When she first explained the drug to me, I did not understands its function. Now, I understand that it blocks the pain receptors from hitting the damaged nerve area or pain area.
I was so scared to take Neurontin. I was suffering so much that I really did not have any faith in her or anything or anyone else, I was so deeply depressed beyond anything I could even describe.
The Neurontin really helped the first two weeks, to the point that it seemed to go down to an ache the first week (the pain.) The second week, the pain started to come back, but the burning feeling that was so strong before in my vagina had gone down. Now, it seems to be wearing off completley and I am scared for that, especially since she does not think I am anywhere near ready, due to my pain levels, to get a Hydrodystention. What I do not understand is (She very blatantly told me she was NOT giving me pain meds) why she will not give me pain medications.
She told me as long as I was willing to work with her, then we would work as a team. I thought that also meant being able to communicate questions and concerns to her when I needed to. I had questions after my appointment, so many, that I had called the Office Manager (though I was doing the right thing by this, but later the office got upset with me and did not tell me.) and asked her if the doctor would answer my many questions I had about Interstitial Cystitis. She said that should not be a problem and she would have Dr.**** e mail them to me. Well, that did not happen so then the office said to wait one day at home (I don't have a cell phone) for the doctor to call me and she never did that day. So, the next day, I was on my way out the door and Dr. **** called. She was very upset with me as apparently the office staff had told her I was being overly demanding and that I had expected to be the only patient or something. So she was giving me the riot act for not assuming I was the only patient who needed hlep even though I never meant to assume any of that and was hurt at the suggestion. All I wanted was for someone to care and to give me help. That is all I wanted. I felt like saying (and I did say and epxress some of this to her to the best of my ability) : Don't you understand emotionally how hard it is to have this kind of pain that is so misunderstood by everyone? Don't you understand the pain of having this condition and all that it entails? Don't they understand that we are doing the best we can for a condition that is more painful than many conditions that are much more publicized?
I cannot tell you how angry and upset I am at the lack of awareness on this condition. I am also trying to be positive and hopeful, to the best of my ability, although it does not seem like much.
I went to a support group here locally and I felt like everyone was feeling sorry for themselves, but nobody was supporting anyone else. Despite my pain, I was trying to give all the information I could and share whatever I could with everyone. Most people, about 90% of them, had never even ventured onto or heard of the IC Network.
I was supposed to have increased my dose by the time I went in there (I just did last night and was barely functional today) and I just started to last night. However, my pain just started coming back the day after my appointment with her on June 30th and I am upset and angry about that fact. I thought I had felt the pain come back and the Neurontin wear off, but again because of being chewed out by her that week I had questions, I was afraid of seeming anything less than extremely positive for fear that she would not let me continue as a patient.
I am scared. I am supposed to wait for my follow up until the end of August and after today, I really do not think I can wait that long. I am afraid that if I call the office, there will not be a sooner appointment.
I keep trying to find ways to relax, but my concentration is so bad from constant pain, that I simply am not able to.
My sense of isolation and desolation is pretty bad.
I also have about 100 pounds to lose and that affects my self esteem too and the pain, I feel, keeps me from doing a lot of things i Know I need to do.
I went for a two mile or so walk today (it was blazing hot here in Seattle, we are not used to that) and I got a little bit of a workout, but even light walking seems to aggravate my symptoms.
I cannot afford to buy all the IC products I want and I am bit overwhelmed at that because I know exactly what I would buy if I could.
I wish some of you lived here in Seattle. I am shocked that there is not a support group here in Seattle. Once I get a much better grip on myself and how to handle my symptoms, I would like to start a support group here in Seattle.
Anyway, I love all of you and although I talked today about my suffering, I wanted you all to know that my heart (truly) and spirit is with all of you.
Please let me know what you would do and what you think. I know that everyone is different, but I just wanted to know anything you would like to share.
Write back only if you want!
Sincerely,
Rebekah