rebekahpoet
04-24-2009, 07:15 PM
[FONT="Franklin Gothic Medium"]
Dear Friends,:help::cat::toilet::help::cat::toilet::mad::
Hello. My name is Rebekah and I currently live in the great city of Seattle, but I grew up in Washington D.C.
I am generally someone who has survived against odds in my life and I try to be positive. But what i am going through now makes me feel that I am going crazy, mostly b/c of the lack of help I am getting in the medical community. If anybody knows of any resources that I can follow up on, I would appreciate it.
I do not know where to start and I do not want to get anybody down, but I honestly do not know what to do.
For the past month, I have been experiencing debilitating pain on my right side. It constantly burns when I pee, I have constant burning when my bladder fills up, when I pee and then after I pee. So, I am basically always afraid to go to the bathroom.
My pain is severe and I just do not know what to do or where to start.
I have had constantly burning and pain with every urination and I feel that there is a rock or somethign on my right side. Since I have been diagnosed with Interstitial Cystitis (very uncompassionately by a doctor that was so rude and cold, I was shocked) I am feeling lonely, scared and out of steam to fight anything else.:help:
At the end of March, I had a ruptured cyst, which I went to the ER for. The fluid is supposed to dissipate with a ruptured cyst.
Then, two days later, I had a frontal end impact car accident in which the other car was at fault.
Then, at the very beginning of April is when the constant burning and pain started. I had at least eight pee tests, all of which came back that I did not have an infection. Finally, my family doctor found that I had an infection about two weeks or so ago, and I took the full course of Amoxicyllin. The symptoms came right back after I got off the medicine.
After I got out of the hospital, I went to a GYN who would not even test my urine or give me a pelvic pain and insulted my intelligence by assuming I did not know how to spell urology and tol dme to go to a urologist.
I had an ultrasound in the hospital and another ultrasound ordered by the gyn and nothing came up.
Then, I had a pelvic MRI and the doctor's office withheld the results from me (looking into legal action for that) for no reason and then lamely, after they were threatened with a lawsuit by me, read me the results over the voice mail on my phone after her verbally abusive office staff would not give them to me even though they knew I was in constant pelvic pain.
The gyn (who I am not going to anymore) told me I had a misshapen uterus, but nothing she could see with my bladder.
Then, I went to a Urologist yesterday who was going to give me a Cystoscopy at first and then said that I should go on Detrol and Elmiron and that the Elmiron would act as a healing ointment for my bladder and the Detrol would calm my bladder down. He said he was 99% sure there was nothing "structurally" wrong with my bladder, but got very defensive and angry with me when I had tons of questions b/c I have been in constant pain and feel like all I can do is keep going back into hospitals until someone finds out what is wrong. He told me if he did not like it, I could go somewhere else. Meanwhile, they said I could not come in for a cystoscopy until the end of the month. He said I would have to wait until June 3rd to see a Pelvic Pain specialist. :help:
He asked me what the papers were that I brought with me in the office. I told him they were printouts of Interstitial Cystitis and I asked him if he thought I had this. He said that he thought that I might, but he does not know untl I talk to the pelvic pain specialist. I took that as the closes thing to a diagnosis, and I felt that i had to figure things out for myself.
My family doctor keeps saying she does not know what it is.
I just called today to get new appts. with a gynecologist and urologist for next Wednesday. :help:
I feel that I cannot wait that long with my pain the way it is. I feel that nobody is listening.
Everything I have read about Interstitial Cystitis fits with my symptoms, except I have not read yet the boards and have nto come across people who have had pain on their right sides the way I do.
Since my scary medical journey of the past two years consists of severe panic disorder (Which I beat) and pseudotumor cerebri (a Neurological condition in the brain that causes extra fluid and very severe headaches and in some people causes them to go blind in one or both eyes and have shunts put in their head), which I also "beat" and is in remission...along with gaining 50 pounds unexplainably, developing metabolic syndrome, irregular heartbeat and acid reflux...I am not sure I am prepared to deal with this.
I am a writer who has not written for over a year due to my constantly being overwhelmed by being hit with one medical thing after another and my house is a current reflection of being completely overwhelmed, even my cats are crying at the mess.
I need support, feedback, and anything else that you can offer to me.
Sincerely,
Rebekah
Dear Friends,:help::cat::toilet::help::cat::toilet::mad::
Hello. My name is Rebekah and I currently live in the great city of Seattle, but I grew up in Washington D.C.
I am generally someone who has survived against odds in my life and I try to be positive. But what i am going through now makes me feel that I am going crazy, mostly b/c of the lack of help I am getting in the medical community. If anybody knows of any resources that I can follow up on, I would appreciate it.
I do not know where to start and I do not want to get anybody down, but I honestly do not know what to do.
For the past month, I have been experiencing debilitating pain on my right side. It constantly burns when I pee, I have constant burning when my bladder fills up, when I pee and then after I pee. So, I am basically always afraid to go to the bathroom.
My pain is severe and I just do not know what to do or where to start.
I have had constantly burning and pain with every urination and I feel that there is a rock or somethign on my right side. Since I have been diagnosed with Interstitial Cystitis (very uncompassionately by a doctor that was so rude and cold, I was shocked) I am feeling lonely, scared and out of steam to fight anything else.:help:
At the end of March, I had a ruptured cyst, which I went to the ER for. The fluid is supposed to dissipate with a ruptured cyst.
Then, two days later, I had a frontal end impact car accident in which the other car was at fault.
Then, at the very beginning of April is when the constant burning and pain started. I had at least eight pee tests, all of which came back that I did not have an infection. Finally, my family doctor found that I had an infection about two weeks or so ago, and I took the full course of Amoxicyllin. The symptoms came right back after I got off the medicine.
After I got out of the hospital, I went to a GYN who would not even test my urine or give me a pelvic pain and insulted my intelligence by assuming I did not know how to spell urology and tol dme to go to a urologist.
I had an ultrasound in the hospital and another ultrasound ordered by the gyn and nothing came up.
Then, I had a pelvic MRI and the doctor's office withheld the results from me (looking into legal action for that) for no reason and then lamely, after they were threatened with a lawsuit by me, read me the results over the voice mail on my phone after her verbally abusive office staff would not give them to me even though they knew I was in constant pelvic pain.
The gyn (who I am not going to anymore) told me I had a misshapen uterus, but nothing she could see with my bladder.
Then, I went to a Urologist yesterday who was going to give me a Cystoscopy at first and then said that I should go on Detrol and Elmiron and that the Elmiron would act as a healing ointment for my bladder and the Detrol would calm my bladder down. He said he was 99% sure there was nothing "structurally" wrong with my bladder, but got very defensive and angry with me when I had tons of questions b/c I have been in constant pain and feel like all I can do is keep going back into hospitals until someone finds out what is wrong. He told me if he did not like it, I could go somewhere else. Meanwhile, they said I could not come in for a cystoscopy until the end of the month. He said I would have to wait until June 3rd to see a Pelvic Pain specialist. :help:
He asked me what the papers were that I brought with me in the office. I told him they were printouts of Interstitial Cystitis and I asked him if he thought I had this. He said that he thought that I might, but he does not know untl I talk to the pelvic pain specialist. I took that as the closes thing to a diagnosis, and I felt that i had to figure things out for myself.
My family doctor keeps saying she does not know what it is.
I just called today to get new appts. with a gynecologist and urologist for next Wednesday. :help:
I feel that I cannot wait that long with my pain the way it is. I feel that nobody is listening.
Everything I have read about Interstitial Cystitis fits with my symptoms, except I have not read yet the boards and have nto come across people who have had pain on their right sides the way I do.
Since my scary medical journey of the past two years consists of severe panic disorder (Which I beat) and pseudotumor cerebri (a Neurological condition in the brain that causes extra fluid and very severe headaches and in some people causes them to go blind in one or both eyes and have shunts put in their head), which I also "beat" and is in remission...along with gaining 50 pounds unexplainably, developing metabolic syndrome, irregular heartbeat and acid reflux...I am not sure I am prepared to deal with this.
I am a writer who has not written for over a year due to my constantly being overwhelmed by being hit with one medical thing after another and my house is a current reflection of being completely overwhelmed, even my cats are crying at the mess.
I need support, feedback, and anything else that you can offer to me.
Sincerely,
Rebekah