Hi all,
I've been reading the forum almost daily for the last three weeks so I already feel like I'm a member, but I finally just got cleared to join this week, and this is my first (massive!) post!
I had what I would now consider 'light' IC five years ago when I was 22. It was May when it got really bad (my young boyfriend had a stroke, hello stress!!) I had pain and lots of frequency-urgency. I tried some medications, and eventually got a cystoscopy/hydrodistention/instillation. I remember feeling like it didn't help me, and yet somehow I think it must have made me better (along with taking prelief at every meal) because it just sort of went away. I was still very active during this time, able to perform over 30 shows in the musical I was in, and I remember drinking coffee! I wouldn't DREAM of that now!
Fast-forward five symptom-free years: I finished grad school and planned for a year teaching English in Madrid. After one month of fun here (October) I started getting bacterial infections every two weeks (sinus infections, throat infections and bladder infections) that made my life pretty difficult. THEN I started feeling like I STILL had the bladder infections even though my tests were coming back negative. I started fearing the worst-the IC was coming back! BUT I was in denial, and I continued trying to be 'normal' even though I was peeing every hour and having pain with intercourse. I kept working, kept trying to go out with friends, kept drinking coffee, etc. I thought maybe I should get on birth control pills to calm the extreme pain I was having due to my menstrual cycle, that also seemed to make the IC-symptoms worse (mittelschmerz, PMS, then cramps during my period=three weeks of cramps every month!).
The week I started the pill my IC symptoms got worse! I also was fighting another throat infection with more antibiotics. On Saturday Feb 19th I was in constant excruciating pain in my bladder and having to pee every 20 mins. THat night, for the first time, I had nocturia- waking to pee every hour during the night. THe next day was worse, and I spent the night in the emergency room. Basically, since then,I have been in what I guess is called an IC 'flare" from hell. I haven't been able to work and have been completely housebound except for going to the doctor and to pharmacies.
I have been working my ass off trying to deal with the SPanish medical system and my Spanish health insurance. First I saw my general practitioner who tried to tell me the IC symptoms were a side effect of citalopram, the anti-depressent I've been on for YEARS. He prescribed me useless pain medications and anti-inflammatories that did nothing. I also started a strict IC diet the very day my symptoms got horrible.
The first urologist who I saw during the first week of this flare sent me for the typical battery of tests- all of which came back normal of course (honestly I was hoping for a cyst, a kidney stone, a surprise bacterial infection ANYTHING but IC!!!!). He prescribed me Amytriptilina (Elavil in the states). Then that guy went out of town and I saw another one two weeks later, who prescribed me Vesicare and CRANBERRY SUPPLEMENTS!! (not taking those yet) I did my own research and bought myself quercetin supplements, and my mom brought me Elmiron from the states when she flew here to take care of me last week. (She left again on Thursday :-()
Then this Thursday, I had a cystoscopy. Everything looked normal BUT they didn't use ANY local anaesthetic on me and it was the worst pain I've ever experienced in my life. I fainted afterwards due to the pain. And for the past three days since the cystoscopy I have had a sharp increase in the pain and frequency.
I am now taking Elavil, Quercetin, Vesicare, Citalopram, Elmiron, Cipro (antibiotic for after the cystoscopy), and nolotil or tramadol for the pain. The only help all of these drugs has given me is less nocturia, which I must say is great, but my symptoms are basically unchanged after three weeks plus I am suffering from the side-effects: headaches, drowsiness, dry mouth, upset stomach, and constipation.
I would do anything to go home and be with my family and friends in my hometown in California. I am incredibly isolated here in Spain- all my friends here are new, fun-loving good-time party-people. I haven't seen or heard from most of them since this started. My poor new boyfriend has been doing a lot for me, but he can't spend much time with me either, and I am afraid he won't stick around for too much more of this. My teaching job is in a town an hour and a half away from me and there are NO PUBLIC RESTROOMS on my commute. I was suffering holding it BEFORE this awful flare! I have a terrible time communicating with the all the doctors, even though I speak Spanish, I can't easily tell them what I really want to say and I often have a hard time understanding what they are saying to me!! Also, I can't see the same urologist, everytime it's someone new at my clinic, someone who I have to tell the whole darn story to again and try to convince them that I need help!!!
The only thing keeping me from going home tomorrow is that I have no health insurance in the states. I'm employed HERE and my insurance is HERE. If I go home, I will have nothing. I couldn't even get insurance at home with my past history of IC and lower back pain. My mom had to pay $600 for one month's supply of Elmiron for me (they do not have elmiron in Spain), which won't even do me any good unless I take it for 3-6 months right? I've had to pay all my prescriptions here in Spain out of pocket too- like $120 for one month of Vesicare, and (almost the worst) $90 dollars for two bottles of Prelief!!! (also not carried in Spain, shipped from Portugal.) But I know, with the exception of Prelief, I'd be paying the same prices back home w/o insurance.
The last doctor prescribed me three instillations of Cystistat, the prospect of which gave me so much hope, until I called my insurance company for authorization and discovered the doctor hadn't given me any of the necessary information to actually schedule the procedures. I have to wait a week to talk him again, since he only comes to my clinic one day a week and the secretaries won't allow me to leave him any messages. I just need a darn code number and to know who is going to do the procedure!
I feel like I am doing everything possible to make myself better, but nothing is working, and I'm just getting doors slammed in my face at every turn. I'm just getting so depressed here in Madrid. I am WORSE after the cystoscopy, and I am so lonely. I wish I were home where I could be with my family, my dog, MY CAR, my old friends, the beach, and the comfort of my own culture and language...I really can't believe my life has become so drastically different than what it was. I know I should get out of my apartment more, but it's so much more difficult to go out for me here than it would be in CA. I end up just sitting in my apartment all day, peeing, taking drugs, sleeping and watching videos on my laptop. At least I have internet, right???? :-) I used to be an opera singer but I can't practice at all because it hurts my bladder so much to breath deeply, and the medications have completely dried out my mouth and throat. I'm having a really hard time being positive these days, even though I know how important it is in recovery.
If you made it this far with my enormous post, I just want to say thanks for reading, and also to everyone on the boards for writing so much. I've had many questions answered by reading people's posts here and gotten many good ideas.
I've been reading the forum almost daily for the last three weeks so I already feel like I'm a member, but I finally just got cleared to join this week, and this is my first (massive!) post!
I had what I would now consider 'light' IC five years ago when I was 22. It was May when it got really bad (my young boyfriend had a stroke, hello stress!!) I had pain and lots of frequency-urgency. I tried some medications, and eventually got a cystoscopy/hydrodistention/instillation. I remember feeling like it didn't help me, and yet somehow I think it must have made me better (along with taking prelief at every meal) because it just sort of went away. I was still very active during this time, able to perform over 30 shows in the musical I was in, and I remember drinking coffee! I wouldn't DREAM of that now!
Fast-forward five symptom-free years: I finished grad school and planned for a year teaching English in Madrid. After one month of fun here (October) I started getting bacterial infections every two weeks (sinus infections, throat infections and bladder infections) that made my life pretty difficult. THEN I started feeling like I STILL had the bladder infections even though my tests were coming back negative. I started fearing the worst-the IC was coming back! BUT I was in denial, and I continued trying to be 'normal' even though I was peeing every hour and having pain with intercourse. I kept working, kept trying to go out with friends, kept drinking coffee, etc. I thought maybe I should get on birth control pills to calm the extreme pain I was having due to my menstrual cycle, that also seemed to make the IC-symptoms worse (mittelschmerz, PMS, then cramps during my period=three weeks of cramps every month!).
The week I started the pill my IC symptoms got worse! I also was fighting another throat infection with more antibiotics. On Saturday Feb 19th I was in constant excruciating pain in my bladder and having to pee every 20 mins. THat night, for the first time, I had nocturia- waking to pee every hour during the night. THe next day was worse, and I spent the night in the emergency room. Basically, since then,I have been in what I guess is called an IC 'flare" from hell. I haven't been able to work and have been completely housebound except for going to the doctor and to pharmacies.
I have been working my ass off trying to deal with the SPanish medical system and my Spanish health insurance. First I saw my general practitioner who tried to tell me the IC symptoms were a side effect of citalopram, the anti-depressent I've been on for YEARS. He prescribed me useless pain medications and anti-inflammatories that did nothing. I also started a strict IC diet the very day my symptoms got horrible.
The first urologist who I saw during the first week of this flare sent me for the typical battery of tests- all of which came back normal of course (honestly I was hoping for a cyst, a kidney stone, a surprise bacterial infection ANYTHING but IC!!!!). He prescribed me Amytriptilina (Elavil in the states). Then that guy went out of town and I saw another one two weeks later, who prescribed me Vesicare and CRANBERRY SUPPLEMENTS!! (not taking those yet) I did my own research and bought myself quercetin supplements, and my mom brought me Elmiron from the states when she flew here to take care of me last week. (She left again on Thursday :-()
Then this Thursday, I had a cystoscopy. Everything looked normal BUT they didn't use ANY local anaesthetic on me and it was the worst pain I've ever experienced in my life. I fainted afterwards due to the pain. And for the past three days since the cystoscopy I have had a sharp increase in the pain and frequency.
I am now taking Elavil, Quercetin, Vesicare, Citalopram, Elmiron, Cipro (antibiotic for after the cystoscopy), and nolotil or tramadol for the pain. The only help all of these drugs has given me is less nocturia, which I must say is great, but my symptoms are basically unchanged after three weeks plus I am suffering from the side-effects: headaches, drowsiness, dry mouth, upset stomach, and constipation.
I would do anything to go home and be with my family and friends in my hometown in California. I am incredibly isolated here in Spain- all my friends here are new, fun-loving good-time party-people. I haven't seen or heard from most of them since this started. My poor new boyfriend has been doing a lot for me, but he can't spend much time with me either, and I am afraid he won't stick around for too much more of this. My teaching job is in a town an hour and a half away from me and there are NO PUBLIC RESTROOMS on my commute. I was suffering holding it BEFORE this awful flare! I have a terrible time communicating with the all the doctors, even though I speak Spanish, I can't easily tell them what I really want to say and I often have a hard time understanding what they are saying to me!! Also, I can't see the same urologist, everytime it's someone new at my clinic, someone who I have to tell the whole darn story to again and try to convince them that I need help!!!
The only thing keeping me from going home tomorrow is that I have no health insurance in the states. I'm employed HERE and my insurance is HERE. If I go home, I will have nothing. I couldn't even get insurance at home with my past history of IC and lower back pain. My mom had to pay $600 for one month's supply of Elmiron for me (they do not have elmiron in Spain), which won't even do me any good unless I take it for 3-6 months right? I've had to pay all my prescriptions here in Spain out of pocket too- like $120 for one month of Vesicare, and (almost the worst) $90 dollars for two bottles of Prelief!!! (also not carried in Spain, shipped from Portugal.) But I know, with the exception of Prelief, I'd be paying the same prices back home w/o insurance.
The last doctor prescribed me three instillations of Cystistat, the prospect of which gave me so much hope, until I called my insurance company for authorization and discovered the doctor hadn't given me any of the necessary information to actually schedule the procedures. I have to wait a week to talk him again, since he only comes to my clinic one day a week and the secretaries won't allow me to leave him any messages. I just need a darn code number and to know who is going to do the procedure!
I feel like I am doing everything possible to make myself better, but nothing is working, and I'm just getting doors slammed in my face at every turn. I'm just getting so depressed here in Madrid. I am WORSE after the cystoscopy, and I am so lonely. I wish I were home where I could be with my family, my dog, MY CAR, my old friends, the beach, and the comfort of my own culture and language...I really can't believe my life has become so drastically different than what it was. I know I should get out of my apartment more, but it's so much more difficult to go out for me here than it would be in CA. I end up just sitting in my apartment all day, peeing, taking drugs, sleeping and watching videos on my laptop. At least I have internet, right???? :-) I used to be an opera singer but I can't practice at all because it hurts my bladder so much to breath deeply, and the medications have completely dried out my mouth and throat. I'm having a really hard time being positive these days, even though I know how important it is in recovery.
If you made it this far with my enormous post, I just want to say thanks for reading, and also to everyone on the boards for writing so much. I've had many questions answered by reading people's posts here and gotten many good ideas.
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