jenjen05
02-26-2009, 01:14 PM
Hi... my name is Jennifer, or Jenn, or whatever variation you like :hi:
My story begins in 01/07 on my 22nd birthday when I was diagnosed with chlamydia. I never had anything wrong with me medically before and had always used condoms during sex and had only had two sexual partners. I was devastated. I was given azithromycin (sp?) and was told I was cured. My symptoms returned, including that of a painful bladder and frequent urination, and I was in and out of the gynecologist's office until May 2007 with recurrent chlamydia. She kept treating me over and over with azithromycin. A week before my college graduation, I was hospitalized for a week when my digestive system shut down. I was diagnosed with gastritis, because they couldn't figure out what was wrong with me. In September 2007 all my vaginal symptoms returned and my stomach was queezy. Desperate for help, I went to see my mom's surgeon and asked him what was wrong with me. He did two cultures in his office, one vaginally and one anally. I had never had anal sex. Well... the cultures came back positive for chlamydia! As it turns out, the STD had ravaged my digestive system. I was given two weeks of doxycycline which ultimately cured me. This means I had the STD recurrent for 8 months taking azithromycin over and over again when the drug was not treating it. This whole time I was having painful bladder and urinary frequency.
October-December 2007 I was fine. In January 2008 I presented with bladder pain and frequent urination again. I was worried it was the STD reappearing and I saw a gynecologist. She said I had a little yeast and gave me Terazol, which I had a severe allergic reaction to. Symptoms persisted. I tried Monistat on my own and it seemed to work. Late February rolled around and I was in pain again. More tests, more yeast, or so they said. More drugs. This went on until July 2008. I was perfectly fine the month of August. September rolls around and my bladder pain and urinary frequency return. Again, I'm freaked cause I think its the STD. My primary care tests and treats me for gonnorea and chlamydia. The tests end up coming back negative. She orders a transvaginal ultrasound. TU shows fluid in my cul-de-sac and cysts on my ovaries. I go see the gyneolcogist. She does a DNA probe and vaginally I appear fine. My bladder pain and urinary frequency persist. She decides to give me Levaquin and do her own transvaginal ultrasound. This ultrasound reveals cysts covering my left ovary and fluid in the fallopian tube and fluid again in the cul-de-sac. She wants to do a laproscopy the next day and remove my left ovary and tube. I let her do the surgery. She did not end up removiing the ovary or tube, when she got in there they were fine. She did suck out the fluid in the cul-de-sac and when she was sucking behind my bladder a huge cyst came out of nowhere and popped in her machine. This fluid was tested and was sterile. Gallbladder was inflamed. Intestines were full. I went home and threw up for the next four days and we could not get my intestines working again. Countless different methods were tried. Finally, Dunkin Donuts Iced Coffee, when I kept it down, worked and I went. Crazy.
I was then fine again until Thanksgiving 2008... and that's when I knew I had a bladder problem and it couldn't possibly be anything else. See, when I was doing the laproscopy in October, I was given doxycycline, Levaquin, and another antibiotic I can't remember along with Flagyl and the Penicillin (my DNA probe came up overgrowth of Strep B in my vaginal flora). I hadn't had sex and had changed my whole lifestyle. Mild perfume and dye free soap, cotton panties, high fiber, etc. I was just extremely careful about everything. At this point I called my gyno and asked to be referred to a urologist, because the bladder pain and urgency was horrible and I knew there was nothing else it could be. She had me come to her office. Two weeks and five urine cultures later, my urine is normal. She says I have yeast again, I say I'm fine. She gives me 5 Diflucan in a month. Meanwhile, I'm on omepraole (sp?). When my eyes turn yellow from this treatment, I knew I was in liver trouble. I went online and did some research. Yep, the omeprazole was a proton pump inhibitor which means Diflucan wasn't ever working because it was not available due to the proton pump inhibitor. Terrific. Then, she tries to give me macrobid. Marcobid cannot be taken with omeprazole either. At this point, I decide she's not worth my time and I find another gyno.
The new gyno repeats vaginal DNA probe and urinalysis. DNA probe, just like October 2008, shows overgrowth of strep b. I take penicillin vk. He changes me from Yaz to Yasmin (the bc I was previously on before Jan 07). At this point I stop taking all pills and supplements I had been given for IBS including fiber. I only took Yasmin and occasional miralax for the IBS-C. With diet management and regular bowel movements I noticed my bladder symptoms decreased and the frequency went almost completely away. Then another wave of pain. I call the new gyno back and say my bladder and frequency returned. He referred me to a urologist who did a cystoscope and said I had IC without doing the test for it. All she said she saw was increased vascularity and moderate bowel pressure on the bladder. This diagnosis devastated me, as I had previously researched possible reasons why I was having bladder pain and urgency and the last thing I wanted was a chronic, permanent disease. I tried the IC diet and didn't notice any change in my pain or anything. Then, to test my "I don't have IC theory" I decided to eat and drink all the trigger foods and beverages in one day. No flare. Same mild pain during the day and severe pain at night. No increase or change.
For the last week and a half I felt pretty good out of nowhere. I already only drank milk and water. (I haven't had booze in four months, and really want a glass of wine. Damn.) So I just stayed eating mild foods and away from the big triggers on the diet. I had normal poos and everything. I felt the best I'd felt in two years. And then Tuesday happened. Bah! Terrible bladder pain. Even with some spare oxycodone I had, I got up 8 times to pee at night. I hadn't had anything bad to eat or drink. I did notice I was constipated. I finally made a poo and felt lightyears better. My mom knew of a good urologist in my area and she was able to get me an appointment with him today because I'm the granddaugther of one of his old doctor friends. He did the cystoscope again and did the actual test for IC. When the first liquid was inserted, my pain was a 3 or 4. When I got the second, it was a 5 or 6. He then inserted the scope and looked around. He inflated my bladder till I thought it would explode. I watched as all the veins on my bladder expanded and I felt my heart sink. He then looked at the top of it and noted that I didn't have cracks in my bladder wall. Also, he said something about the tube that connects my urethra to my bladder being too short and underdeveloped, possibly as a child. He then asked me out of nowhere if I had ever had a recurrent infection. BINGO! Chlaymida 9 months. He then said that the infection combined with the amount of azithromycin I took over 9 months and then all the antibiotics I took after that during the laproscopy probably caused the IC he saw as well as two wee "half circles" on the top of the bladder that he said should be full circles. Whatever that means and whatever that is. I've googled but can't figure it out. He says I have mild IC (I'd hate to experience severe) but will not write it down as his official diagnosis so I can go try and get health insurance since I have none. (I've tried before and was told they won't cover me gynecologically or gastrointestinally for at least 5 years, so I didn't bother getting it.) I was also given a DMSO. God that was awful. Bladder didn't hurt, but the taste in my mouth was making me want to puke. Then after holding that in for two hours I thought my urethra had a fire in it (and it still feels that way five hours later). I was given an rx for Elmiron 3x a day and Ambien to help me sleep at night. He refused to give me narcotics. Even though I'm not an addictive personality and I only take one 7.5/750 vicodin a night to sleep and tough out my pain during the day. And I only take the vicodin when I ABSOLUTELY need it, in the last two weeks for example I only took 5 pills. I really feel like I need vicodin or oxycodone, just to have in case I flare really bad or at night when I just can't sleep. I'm scared to take Ambien because of all the scary stories you hear, and weird stuff always ends up happening to me. I'm also scared to take the Elmiron after hearing about the liver damage and hair loss. Hair loss I can deal with, I have tons of it. The liver damage... I've already had yellowing of the eyes from Diflucan and I just don't know.
I've been reading a lot on this site about Cystoprotek and Cystaq. I went ahead and ordered a bottle of the Cystoprotek to try and I may do that and just skip the Elmiron and see if I can manage the IC with the Cystoprotek alone since my case is supposed to be mild.
Anyway, anyone's thoughts or suggestions are welcome. I'm going to continue reading on this forum and site after I give my eyes a computer screen break.
I do have a few questions if anyone wants to give their opinon...
1. Do you think that the Cystoprotek alone may help?
2. Is Elmiron really as scary as it sounds? I'm 24. Should I just go for it in hopes it might cure me completely in 3 months (this is what the doctor inferred)?
3. Do you find that doctors give you hyrdocodone or oxycodone for pain? As I've browsed the site I noticed a lot of you have them listed as meds, but neither urologist I saw was willing to give me any.
4. What other pain relief methods do you find work well? I have a TENS unit from a car accident I was in and I've tried that and I get a little relief with that and a heating pad at night.
5. I'm from Tampa Bay, Florida. Anyone ever want to meet up? I feel really alone and I'll buy lunch :-)
6. My skype name is jennifer.jericho if anyone wants to chat. I'm on a lot as a recent college graduate with no job and pain. :-(
Thanks for reading my long, boring story. I wish all of you good health and pain free days ahead!
xoxo,
Jennifer
My story begins in 01/07 on my 22nd birthday when I was diagnosed with chlamydia. I never had anything wrong with me medically before and had always used condoms during sex and had only had two sexual partners. I was devastated. I was given azithromycin (sp?) and was told I was cured. My symptoms returned, including that of a painful bladder and frequent urination, and I was in and out of the gynecologist's office until May 2007 with recurrent chlamydia. She kept treating me over and over with azithromycin. A week before my college graduation, I was hospitalized for a week when my digestive system shut down. I was diagnosed with gastritis, because they couldn't figure out what was wrong with me. In September 2007 all my vaginal symptoms returned and my stomach was queezy. Desperate for help, I went to see my mom's surgeon and asked him what was wrong with me. He did two cultures in his office, one vaginally and one anally. I had never had anal sex. Well... the cultures came back positive for chlamydia! As it turns out, the STD had ravaged my digestive system. I was given two weeks of doxycycline which ultimately cured me. This means I had the STD recurrent for 8 months taking azithromycin over and over again when the drug was not treating it. This whole time I was having painful bladder and urinary frequency.
October-December 2007 I was fine. In January 2008 I presented with bladder pain and frequent urination again. I was worried it was the STD reappearing and I saw a gynecologist. She said I had a little yeast and gave me Terazol, which I had a severe allergic reaction to. Symptoms persisted. I tried Monistat on my own and it seemed to work. Late February rolled around and I was in pain again. More tests, more yeast, or so they said. More drugs. This went on until July 2008. I was perfectly fine the month of August. September rolls around and my bladder pain and urinary frequency return. Again, I'm freaked cause I think its the STD. My primary care tests and treats me for gonnorea and chlamydia. The tests end up coming back negative. She orders a transvaginal ultrasound. TU shows fluid in my cul-de-sac and cysts on my ovaries. I go see the gyneolcogist. She does a DNA probe and vaginally I appear fine. My bladder pain and urinary frequency persist. She decides to give me Levaquin and do her own transvaginal ultrasound. This ultrasound reveals cysts covering my left ovary and fluid in the fallopian tube and fluid again in the cul-de-sac. She wants to do a laproscopy the next day and remove my left ovary and tube. I let her do the surgery. She did not end up removiing the ovary or tube, when she got in there they were fine. She did suck out the fluid in the cul-de-sac and when she was sucking behind my bladder a huge cyst came out of nowhere and popped in her machine. This fluid was tested and was sterile. Gallbladder was inflamed. Intestines were full. I went home and threw up for the next four days and we could not get my intestines working again. Countless different methods were tried. Finally, Dunkin Donuts Iced Coffee, when I kept it down, worked and I went. Crazy.
I was then fine again until Thanksgiving 2008... and that's when I knew I had a bladder problem and it couldn't possibly be anything else. See, when I was doing the laproscopy in October, I was given doxycycline, Levaquin, and another antibiotic I can't remember along with Flagyl and the Penicillin (my DNA probe came up overgrowth of Strep B in my vaginal flora). I hadn't had sex and had changed my whole lifestyle. Mild perfume and dye free soap, cotton panties, high fiber, etc. I was just extremely careful about everything. At this point I called my gyno and asked to be referred to a urologist, because the bladder pain and urgency was horrible and I knew there was nothing else it could be. She had me come to her office. Two weeks and five urine cultures later, my urine is normal. She says I have yeast again, I say I'm fine. She gives me 5 Diflucan in a month. Meanwhile, I'm on omepraole (sp?). When my eyes turn yellow from this treatment, I knew I was in liver trouble. I went online and did some research. Yep, the omeprazole was a proton pump inhibitor which means Diflucan wasn't ever working because it was not available due to the proton pump inhibitor. Terrific. Then, she tries to give me macrobid. Marcobid cannot be taken with omeprazole either. At this point, I decide she's not worth my time and I find another gyno.
The new gyno repeats vaginal DNA probe and urinalysis. DNA probe, just like October 2008, shows overgrowth of strep b. I take penicillin vk. He changes me from Yaz to Yasmin (the bc I was previously on before Jan 07). At this point I stop taking all pills and supplements I had been given for IBS including fiber. I only took Yasmin and occasional miralax for the IBS-C. With diet management and regular bowel movements I noticed my bladder symptoms decreased and the frequency went almost completely away. Then another wave of pain. I call the new gyno back and say my bladder and frequency returned. He referred me to a urologist who did a cystoscope and said I had IC without doing the test for it. All she said she saw was increased vascularity and moderate bowel pressure on the bladder. This diagnosis devastated me, as I had previously researched possible reasons why I was having bladder pain and urgency and the last thing I wanted was a chronic, permanent disease. I tried the IC diet and didn't notice any change in my pain or anything. Then, to test my "I don't have IC theory" I decided to eat and drink all the trigger foods and beverages in one day. No flare. Same mild pain during the day and severe pain at night. No increase or change.
For the last week and a half I felt pretty good out of nowhere. I already only drank milk and water. (I haven't had booze in four months, and really want a glass of wine. Damn.) So I just stayed eating mild foods and away from the big triggers on the diet. I had normal poos and everything. I felt the best I'd felt in two years. And then Tuesday happened. Bah! Terrible bladder pain. Even with some spare oxycodone I had, I got up 8 times to pee at night. I hadn't had anything bad to eat or drink. I did notice I was constipated. I finally made a poo and felt lightyears better. My mom knew of a good urologist in my area and she was able to get me an appointment with him today because I'm the granddaugther of one of his old doctor friends. He did the cystoscope again and did the actual test for IC. When the first liquid was inserted, my pain was a 3 or 4. When I got the second, it was a 5 or 6. He then inserted the scope and looked around. He inflated my bladder till I thought it would explode. I watched as all the veins on my bladder expanded and I felt my heart sink. He then looked at the top of it and noted that I didn't have cracks in my bladder wall. Also, he said something about the tube that connects my urethra to my bladder being too short and underdeveloped, possibly as a child. He then asked me out of nowhere if I had ever had a recurrent infection. BINGO! Chlaymida 9 months. He then said that the infection combined with the amount of azithromycin I took over 9 months and then all the antibiotics I took after that during the laproscopy probably caused the IC he saw as well as two wee "half circles" on the top of the bladder that he said should be full circles. Whatever that means and whatever that is. I've googled but can't figure it out. He says I have mild IC (I'd hate to experience severe) but will not write it down as his official diagnosis so I can go try and get health insurance since I have none. (I've tried before and was told they won't cover me gynecologically or gastrointestinally for at least 5 years, so I didn't bother getting it.) I was also given a DMSO. God that was awful. Bladder didn't hurt, but the taste in my mouth was making me want to puke. Then after holding that in for two hours I thought my urethra had a fire in it (and it still feels that way five hours later). I was given an rx for Elmiron 3x a day and Ambien to help me sleep at night. He refused to give me narcotics. Even though I'm not an addictive personality and I only take one 7.5/750 vicodin a night to sleep and tough out my pain during the day. And I only take the vicodin when I ABSOLUTELY need it, in the last two weeks for example I only took 5 pills. I really feel like I need vicodin or oxycodone, just to have in case I flare really bad or at night when I just can't sleep. I'm scared to take Ambien because of all the scary stories you hear, and weird stuff always ends up happening to me. I'm also scared to take the Elmiron after hearing about the liver damage and hair loss. Hair loss I can deal with, I have tons of it. The liver damage... I've already had yellowing of the eyes from Diflucan and I just don't know.
I've been reading a lot on this site about Cystoprotek and Cystaq. I went ahead and ordered a bottle of the Cystoprotek to try and I may do that and just skip the Elmiron and see if I can manage the IC with the Cystoprotek alone since my case is supposed to be mild.
Anyway, anyone's thoughts or suggestions are welcome. I'm going to continue reading on this forum and site after I give my eyes a computer screen break.
I do have a few questions if anyone wants to give their opinon...
1. Do you think that the Cystoprotek alone may help?
2. Is Elmiron really as scary as it sounds? I'm 24. Should I just go for it in hopes it might cure me completely in 3 months (this is what the doctor inferred)?
3. Do you find that doctors give you hyrdocodone or oxycodone for pain? As I've browsed the site I noticed a lot of you have them listed as meds, but neither urologist I saw was willing to give me any.
4. What other pain relief methods do you find work well? I have a TENS unit from a car accident I was in and I've tried that and I get a little relief with that and a heating pad at night.
5. I'm from Tampa Bay, Florida. Anyone ever want to meet up? I feel really alone and I'll buy lunch :-)
6. My skype name is jennifer.jericho if anyone wants to chat. I'm on a lot as a recent college graduate with no job and pain. :-(
Thanks for reading my long, boring story. I wish all of you good health and pain free days ahead!
xoxo,
Jennifer