rebekahpoet
05-28-2009, 07:13 PM
:cat::toilet:Dear Friends,
I posted my original post about a month ago. If any of you remember writing to me, since I am not in a position to remember everyone, can you please write back again.
I have been doing my best (as I do when I feel completely alone and overwhelmed) to burrow myself into a cave and I feel that nobody understands what I am going through who is close to me and I would be right.
I need help, advice and whatever else you wonderful members can give.
I waited a while to write back b/c I needed some distance from the site for a while, but also b/c I needed to get clarification on what I actually have.
Right now, I am so confused and I need some serious help!
Here is the chain of events, in a nutshell:
*About two months ago, I had a car accident in which the steering whell hit my pelvis.
**A few days later, I started getting a serious set of symptoms: Constant burning, pain as my bladder filled with urine, urgency and basic pain and discomfort in my pelvic region.
**As would be the beginning of the nightmare I am now in, I went to my family doctor and I asked for a urine culture. She did one and it came back that I had an infection.
**She put me on Amoxicyllin and my body resisted it and the infection did not go away.
**After a couple of weeks of being bounced back and forth from her to a new Urologist, I was totally confused.
**I went to the Urologist, who was supposed to be one of the better medical centers in Seattle and the doctor started yelling at me, when, with notes in hand (after realizing that this might be more than just a Urinary infection), I asked him if I could have Interstitial Cystitis.
**He asked me if I wanted to have a Cystoscopy right then, and, obviously not feeling comfortable in the office getting yelled at, I told him I did not want to do it. I also tried to ask him questions but it was very difficult. He wrote out a prescription for Elmiron and Detrol and told me to take them and when I asked him why I would take them, he said it would help me but he abruptly walked out and would not answer any of my other questions.
***From that point, I sought another Urologist locally. At that point, I had already called the offices of doctors on the IC website and tried to contact these doctors. Some of the offices were very, very rude and even some of the IC providers offices here in the NW listed on the website were very, very rude. The soonest appointment I got was July 16th with someone named Liz Miller and in the meantime, every other office was extremely difficult to contact. I got another appointment for July, but decided to go with Liz Miller.
***I saw my local Urologist, who told me in the beginning that I probably had multiple issues. He did not do a urine culture, even though my family doctor sent over records showing I had an active infection. He did not think it was a big deal or warranted attention.
***He set up an in office Cystoscopy. I still, all this time, up to today, have been continuing to feel like crap, to feel pain, to feel out of control, to feel that I still have questions about what is happening to me. I wanted to hve the Cysto where I was in the hospital.
***He found that I have, what he called, "Trigonitis". I saw my bladder on the screen, It was quite inflamed. It looked like little sores all along the Trigone of my bladder. He said (and we have argued about terminology ever since) that I have Trigonitis and not Interstitial Cystitis. *By this time, I lost several "friends" who left me during this time and family members who disappeared and wanted nothing to do with me.
****HERE IS WHAT IS CRUCIALLY IMPORTANT THAT I HAVE MANY, MANY QUESTIONS ABOUT AND WOULD LOVE TO HEAR FROM ANYONE ABOUT:
1.) When I went on the Internet to look up this condition, I found tons of information on Interstitial Cystitis that I had been researching for a month, but not on Trigonitis. In fact, you will see most of my postings from Rebekah LaSala on the Internet from me about it and why there is not more written on it.
It then occurred to me that Trigonitis is just another form of Interstitial Cystitis and that this is something that Urologists argue over and that I wanted to be empowered.
During this whole time, the whole month of April and May, I have been of five different antibiotics, none of which have worked in knocking out this infection. The infection was still there three weeks ago and I had to go to my family doctor for that since my Urologist did not do a culture. I AM STILL WAITING FOR RESULTS ON THE CULTURE AND AM GOING IN TOMORROW TO FIND OUT ABOUT THAT, but in the meantime, I feel that I am going crazy.
Last Friday at our last appointment, the doctor said that he was out of his league and that I needed to see a specialist in IC. He said that he did not do the treatments and did not know what I woudl need. The thought of getting another Cysto bothers me greatly, because I had excrutiating pain the next day upon peeing, beyond what I could even describe. After all of that, I did not tell him that I had already been looking into other specialists in IC (of which there are not many here) and that I was going to Liz Miller June 16th, of which I am supposedly getting an hour and have not idea how I am going to fit in all of my questions and everything I have to say.
Sex has been out of the question and I tried it once with my husband recently and it proved to be very painful. I have not been able to afford most of the products on this site b/c of getting a small amount every week for unemployment and Greg working two jobs, but I have eliminated most things from my diet that would cause any problems at all, which I already had a lot of sensitivities to: Vinegar, processed foods, processed meat, pickles, white foods, fruit juices, sodas, etc. I only mostly eat: cooked and raw vegetables (no peppers) and veggie burgers, bananas, rice milk (lactose intolerant) and nuts, etc. Very bland.
I need help. There are still questions I have about this lingering infection, like:
1.) If this is still a lingering infection, then wouldn't that have caused a lot of the inflammation I currently have or is the inflammation separate?
2.) What is causing my pain? Is it the infection, Interstitial Cystitis or Trigonitis or both?
3.) Do I have pelvic floor and how is that contributing? If I do have pelvic floor, how is that contributing to everything else I have?
4.) What do I do from here? I have almost lost my husband and feel I am losing him for not knowing how to deal with the pain. If I was employed, I would have lost my job b/c I cannot handle anything and right now feel working would be out of the question, but if I get a job, I have to work. (No prospects yet.) I tried to volunteer and have not even been capable of dealing with that and got "fired" from a volunteer job.
5.) I also have about 100 pounds to lose and I need to exercise as well adn I have been prescribed Metformin as my doctor discovered insulin resistance, but right now I am taking "Topiaz" (a new drug similar to Sanctura or Detrol) and am not even sure if it is helping or what I am taking this for. Every time I try to exercise, (I also have fibromyalgia) I have severe burning and pain in my pelvic area. B/c I do have 100 pounds to lose, that is complicating everything.
6.) Depression: I feel myself getting more and more depressed and do not want to live this way. I want things to change, I want to be an advocate for this condition, but right now, I am not even able to help myself or see what works.
7.) I got a Renal Ultrasound and still have not gotten the results or the results to the culture. I NEED HELP AND SUGGESTIONS b/c I am going into the Urologist tomorrow.
8.) Last week, the Urologist said if I still have an infection, hemay need to do a Cathether urine culture b/c my bladder is resistant to so many medicatons.
9.) A lot of my pain spreads and is centered across my right side.
10.) I would really appreciate if anyone could tell me what else HELPS, b.c I do not care about having to change things or my diet to fix the problem or get some relief, but I do want some relief or some kind. The antibiotics and spasm medication do not seem to help.I do not have much money for fancy products.
11.) I am currently seeing a Naturopath and am taking a hodge podge of a solution she said would help wtih Cystitis that I put in my water and I am relying on here b/c I do not knwo where else to start. For supplements, I take Vitamin C and D and I take Calcium pills. I take Fish oil and an antidepressant.
CAN SOMEONE HELP ME OR OFFER ANYTHING? ALSO, ANY THOUGHTS ON THIS WHOLE TRIGONITIS THING? Of that, I am eternally grateful and feel free to email me on: Seattlepoet@gmail.com as well, my personal e mail.
12.) I AM LONELY, IN PAIN, DEPRESSED, WHEN I TELL PEOPLE I HAVE INTERSTITIAL CYSTITIS, I AM AMAZED AT HOW MANY PEOPLE DO NOT KNOW WHAT IT IS AND LOOK AT ME LIKE I DO NOT KNOW WHAT I AM SAYING. I HAVE GOT NOBODY ELSE I KNOW OF WITH IT AND I AM FEELING THAT MY WHOLE WORLD HAS TURNED UPSIDE DOWN. I ALREADY BEAT PANIC DISORDER IN TWO YEARS AND I BEAT A NEUROLOGICAL CONDITION CALLED PSEUDOTUMOR BUT I CANNOT SEEN TO BE BEAT THIS B/C OF THE CONSTANT PAIN.
Sincerely,
Hurting in Seattle
:cat::toilet:
I posted my original post about a month ago. If any of you remember writing to me, since I am not in a position to remember everyone, can you please write back again.
I have been doing my best (as I do when I feel completely alone and overwhelmed) to burrow myself into a cave and I feel that nobody understands what I am going through who is close to me and I would be right.
I need help, advice and whatever else you wonderful members can give.
I waited a while to write back b/c I needed some distance from the site for a while, but also b/c I needed to get clarification on what I actually have.
Right now, I am so confused and I need some serious help!
Here is the chain of events, in a nutshell:
*About two months ago, I had a car accident in which the steering whell hit my pelvis.
**A few days later, I started getting a serious set of symptoms: Constant burning, pain as my bladder filled with urine, urgency and basic pain and discomfort in my pelvic region.
**As would be the beginning of the nightmare I am now in, I went to my family doctor and I asked for a urine culture. She did one and it came back that I had an infection.
**She put me on Amoxicyllin and my body resisted it and the infection did not go away.
**After a couple of weeks of being bounced back and forth from her to a new Urologist, I was totally confused.
**I went to the Urologist, who was supposed to be one of the better medical centers in Seattle and the doctor started yelling at me, when, with notes in hand (after realizing that this might be more than just a Urinary infection), I asked him if I could have Interstitial Cystitis.
**He asked me if I wanted to have a Cystoscopy right then, and, obviously not feeling comfortable in the office getting yelled at, I told him I did not want to do it. I also tried to ask him questions but it was very difficult. He wrote out a prescription for Elmiron and Detrol and told me to take them and when I asked him why I would take them, he said it would help me but he abruptly walked out and would not answer any of my other questions.
***From that point, I sought another Urologist locally. At that point, I had already called the offices of doctors on the IC website and tried to contact these doctors. Some of the offices were very, very rude and even some of the IC providers offices here in the NW listed on the website were very, very rude. The soonest appointment I got was July 16th with someone named Liz Miller and in the meantime, every other office was extremely difficult to contact. I got another appointment for July, but decided to go with Liz Miller.
***I saw my local Urologist, who told me in the beginning that I probably had multiple issues. He did not do a urine culture, even though my family doctor sent over records showing I had an active infection. He did not think it was a big deal or warranted attention.
***He set up an in office Cystoscopy. I still, all this time, up to today, have been continuing to feel like crap, to feel pain, to feel out of control, to feel that I still have questions about what is happening to me. I wanted to hve the Cysto where I was in the hospital.
***He found that I have, what he called, "Trigonitis". I saw my bladder on the screen, It was quite inflamed. It looked like little sores all along the Trigone of my bladder. He said (and we have argued about terminology ever since) that I have Trigonitis and not Interstitial Cystitis. *By this time, I lost several "friends" who left me during this time and family members who disappeared and wanted nothing to do with me.
****HERE IS WHAT IS CRUCIALLY IMPORTANT THAT I HAVE MANY, MANY QUESTIONS ABOUT AND WOULD LOVE TO HEAR FROM ANYONE ABOUT:
1.) When I went on the Internet to look up this condition, I found tons of information on Interstitial Cystitis that I had been researching for a month, but not on Trigonitis. In fact, you will see most of my postings from Rebekah LaSala on the Internet from me about it and why there is not more written on it.
It then occurred to me that Trigonitis is just another form of Interstitial Cystitis and that this is something that Urologists argue over and that I wanted to be empowered.
During this whole time, the whole month of April and May, I have been of five different antibiotics, none of which have worked in knocking out this infection. The infection was still there three weeks ago and I had to go to my family doctor for that since my Urologist did not do a culture. I AM STILL WAITING FOR RESULTS ON THE CULTURE AND AM GOING IN TOMORROW TO FIND OUT ABOUT THAT, but in the meantime, I feel that I am going crazy.
Last Friday at our last appointment, the doctor said that he was out of his league and that I needed to see a specialist in IC. He said that he did not do the treatments and did not know what I woudl need. The thought of getting another Cysto bothers me greatly, because I had excrutiating pain the next day upon peeing, beyond what I could even describe. After all of that, I did not tell him that I had already been looking into other specialists in IC (of which there are not many here) and that I was going to Liz Miller June 16th, of which I am supposedly getting an hour and have not idea how I am going to fit in all of my questions and everything I have to say.
Sex has been out of the question and I tried it once with my husband recently and it proved to be very painful. I have not been able to afford most of the products on this site b/c of getting a small amount every week for unemployment and Greg working two jobs, but I have eliminated most things from my diet that would cause any problems at all, which I already had a lot of sensitivities to: Vinegar, processed foods, processed meat, pickles, white foods, fruit juices, sodas, etc. I only mostly eat: cooked and raw vegetables (no peppers) and veggie burgers, bananas, rice milk (lactose intolerant) and nuts, etc. Very bland.
I need help. There are still questions I have about this lingering infection, like:
1.) If this is still a lingering infection, then wouldn't that have caused a lot of the inflammation I currently have or is the inflammation separate?
2.) What is causing my pain? Is it the infection, Interstitial Cystitis or Trigonitis or both?
3.) Do I have pelvic floor and how is that contributing? If I do have pelvic floor, how is that contributing to everything else I have?
4.) What do I do from here? I have almost lost my husband and feel I am losing him for not knowing how to deal with the pain. If I was employed, I would have lost my job b/c I cannot handle anything and right now feel working would be out of the question, but if I get a job, I have to work. (No prospects yet.) I tried to volunteer and have not even been capable of dealing with that and got "fired" from a volunteer job.
5.) I also have about 100 pounds to lose and I need to exercise as well adn I have been prescribed Metformin as my doctor discovered insulin resistance, but right now I am taking "Topiaz" (a new drug similar to Sanctura or Detrol) and am not even sure if it is helping or what I am taking this for. Every time I try to exercise, (I also have fibromyalgia) I have severe burning and pain in my pelvic area. B/c I do have 100 pounds to lose, that is complicating everything.
6.) Depression: I feel myself getting more and more depressed and do not want to live this way. I want things to change, I want to be an advocate for this condition, but right now, I am not even able to help myself or see what works.
7.) I got a Renal Ultrasound and still have not gotten the results or the results to the culture. I NEED HELP AND SUGGESTIONS b/c I am going into the Urologist tomorrow.
8.) Last week, the Urologist said if I still have an infection, hemay need to do a Cathether urine culture b/c my bladder is resistant to so many medicatons.
9.) A lot of my pain spreads and is centered across my right side.
10.) I would really appreciate if anyone could tell me what else HELPS, b.c I do not care about having to change things or my diet to fix the problem or get some relief, but I do want some relief or some kind. The antibiotics and spasm medication do not seem to help.I do not have much money for fancy products.
11.) I am currently seeing a Naturopath and am taking a hodge podge of a solution she said would help wtih Cystitis that I put in my water and I am relying on here b/c I do not knwo where else to start. For supplements, I take Vitamin C and D and I take Calcium pills. I take Fish oil and an antidepressant.
CAN SOMEONE HELP ME OR OFFER ANYTHING? ALSO, ANY THOUGHTS ON THIS WHOLE TRIGONITIS THING? Of that, I am eternally grateful and feel free to email me on: Seattlepoet@gmail.com as well, my personal e mail.
12.) I AM LONELY, IN PAIN, DEPRESSED, WHEN I TELL PEOPLE I HAVE INTERSTITIAL CYSTITIS, I AM AMAZED AT HOW MANY PEOPLE DO NOT KNOW WHAT IT IS AND LOOK AT ME LIKE I DO NOT KNOW WHAT I AM SAYING. I HAVE GOT NOBODY ELSE I KNOW OF WITH IT AND I AM FEELING THAT MY WHOLE WORLD HAS TURNED UPSIDE DOWN. I ALREADY BEAT PANIC DISORDER IN TWO YEARS AND I BEAT A NEUROLOGICAL CONDITION CALLED PSEUDOTUMOR BUT I CANNOT SEEN TO BE BEAT THIS B/C OF THE CONSTANT PAIN.
Sincerely,
Hurting in Seattle
:cat::toilet: