Hello everyone, long post, new to the forum, trapped in Madrid!

[DaniMSC]

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.

[sailawaygrl]

I am so sorry you are going through all of this. I can't imagine how hard this has to be for you. IC in itself is very isolating and then to be in a foreign country. Wow, I am at a loss as to even know what to recommend that you could do for yourself. Be sure the vesicare isn't giving you retention as that would cause you more problems. Sounds crazy but be sure to drink a good bottled water. I can tell a huge difference if I stop drinking my "good" water for a while. Instead of prelief you could try tums if that would help you with the cost, it works for some people the same way. You are right that the Elmiron can take some time but don't give up on it yet.
This sounds like a strange questions but how old are you? If by chance you are under 27 you can now be covered on your parents healthcare plan here in the states until you reach the age of 27.
Have you done an internet search to see if there is a forum for people living in Spain? Perhaps if you found one you could see what they are doing to navigate the healthcare system there. Is it possible to have your old records from the US sent to you so you can show them that you have IC? Maybe that would help avoid more tests.
I don't know if anything I suggested is going to be of any help to you but I felt like I should at least try and help you.
Once again, I am sorry you are suffering. Please keep us updated on how things are going for you.
Sandra

[DaniMSC]

Thanks so much Sandra for your response. Maybe I will try with the water! I have read about that too. Do you think it matters if the Ph is slightly acidid, like 6.5? My boyfriend told me that is still considered 'neutral' but he doesn't have IC!! About the insurance, unfortunately, I just turned 27 in November! And I did find a Spanish language IC forum, but it wasn't just for Spain, although it helped me a little. I am worried about the vesicare- I feel like I still have to pee all the time, but it's harder to make it come out than before! I thought maybe I should give it at least a week? Do you know how long its supposed to take to work? Again, thank you so much for your reply, and I'm still hanging on to the idea that the instillations are going to be what I need, now its just a matter of figuring out how to get them!

[sailawaygrl]

I have read that it can take a few days to work but if it is making you push to pee, don't do that, it will make things much worse for you. I would stop taking it if you have to push. I can't take those kind of meds because they do that to me. Is the elavil helping you at all? You might need to try a higher dose, what dose are you taking now? I think the water you are talking about should be ok, it really does make a difference for me and I have severe IC. I don't notice too many food problems but I do know that water makes a difference for me. I can't believe you just turned 27!! Just missed it, that stinks! I think you might find some relief with the instills too, I hope you can get that resolved quickly.

[bubbe1]

new to forum and stuck in Madrid

Dani,
I'm sorry you're having such a hard time.
I think all of Sandra's suggestions are very good, and I don't have much to add. I just wanted you to know that we're listening to you.
I was wondering if you can take Sodium Bicarbonate,(baking soda). I find that very helpful, but if your BP is high, you shouldn't be using it. The Tums work well too, but for me, they cause some queasiness.
Heat can be helpful too, to relax your muscles.
I wish I had some brilliant words of advice for you.
Please keep us up to date.
Sending supportive hugs,
Laurie

[Linda May]

stick with the ic diet completely, find out if the next uro will do rescue treatments or cocktail instills. you will need at least 6 instills for it to take effect. if you get an infection they cant do the instill till the infection clears up. taking just pills is apparently not doing any good, you need a better treatment plan. if the uros dont do anything for you i would come back to the states. at least you would have family and could find a top notch uro to help you. let us know what you decide i hope and pray things will get better for you.

[Landish]

Dani there is a group in Spain for IC.

http://www.acaci.galeon.com/definicion.htm

Asociación Catalana Afectados Cistitis Intersticial
c/ Pareto 55 ático 3
08902 HOSPITALET DE LLOBREGAT
SPAIN
Phone : 34 676466630

Maybe they can help you.

Good luck !

[playethic]

Hi Dani

I got hit in the autumn with IC with similar severity - housebound usually except for dr appt's, pharmacies, & hospital instill's (though my symptom is pelvic pain & not so much frequency/urgency). I so relate to those feelings of doors slammed at every turn, so very hard to be positive, isolation, desperation.

If tramadol isn't working (my pharmacologist won't use it at all), try something else. Can you get a referral to a pain specialist?

A few suggestions...

Do explore and join in some discussions in the pain management forum. If you can get the pain managed, you can start tackling the treatment options from a place of less despair - for me that made a big difference. Find a pain specialist that you like and start seeing them regularly, as well as seeing your urologist(s!) -- two concurrent channels!

Do urologists in Spain use/have access to Uracyst? We do here in Canada, and my urologist prescribed it (technically a medical device, liquid instillation) as an alternative to oral Elmiron prescription. The Spanish IC group will be able to answer that... [if it is, and you choose to go that route instead of Elmiron, find out if it's covered ($)].

Elmiron works for some, but for many it doesn't. Your mom's paying a lot - check out whether you can order from Canadian online pharmacies (legitimate ones, there are some) and ship into Spain. My recollection is that I paid $1000 for a year of Elmiron in Canada (@ 3 pills/day).

Write up a single sheet with your concise symptoms & medical history. I was bouncing around in a clinic and with no consistent dr. for a while too - eventually I handed someone new this sheet at the beginning - it included answers to questions they usually asked me. They could scan it quickly for the info, & I told them they could keep it in their file.
[Main problem - a few words. Symptoms - 4 (or however many - for me it was 4) symptoms - a line for each. When symptoms started; when they were at their worst. Describe what the pain/problem feels like. Where is it on a pain scale 1-10. Have you noticed anything that makes it better. Have you noticed anything that makes it worse. If you're single/married. If you've ever given birth/not. How many times do you pee during the day. How many times are you up to pee at night. Any other medical problems currently. Any related medical history. Any medicine allergies. Current list of all meds. you're on. (+ maybe list of any supplements you're taking). What tests have been done on you so far and a few words re: result of each. Any treatments/drugs you've tried so far and what the effect has been in a few words. Pain medications you've tried before, if any, and why you changed.] [Oh: I also include No history of sexual abuse -- I got asked that by every urologist & urogyno (there's been some IC research along that line)].
I took that on a single page, and while I was bouncing around without a committed GP, pain specialist or urologist, it helped a great deal with all the things that kept getting missed.

Lean on us heavily here in the forum, while you're getting through the worst phase in this nightmare. Ask us any questions at all.

[kadi]

Hi Dani,
Just saw your post and am hoping you will find some relief soon.

One thing I found traveling in Spain in 2008 (spent the summer in Málaga), is that almost all of the bottled water is highly mineralized & made my IC worse. The next time I travel to Spain, I plan to take a Brita pitcher with me to filter my own kitchen tap water. I don't know if you can buy a Brita filter pitcher in Spain or if your mom could mail you one, but I'd recommend it. In the meantime, you might see if you can pick up some distilled water at the pharmacy to dilute the regular bottled water. Explain to the pharmacist what you want to do with it, so you get one that's safe to drink. I bought distilled water to clean my home instillation syringes as the water in Spain left mineral deposits on the plastic.

Yes, the party scene is a big deal. I never had the energy for it, so I mainly met friends at cafés in the morning or afternoon. Most places I could find steamed milk and a croissant.

You are on the diet now, right? It is really essential to managing IC flares. None of my medicines work at all if I'm eating or drinking things that irritate my bladder.

Will the urologist in Spain teach you to do home instillations? Those have saved my career and have given me back a more normal life.

Come on here as often as you like, we're here to support you!

Wishing you better days soon,

[DaniMSC]

Thanks for the advice!

Thanks SOO much for the advice everyone!!! I got some really great ideas to try. I am feeling more positive this week (week 4) even though my symptoms are generally unchanged. Still not sure if I should go home though.

After a crazy day of ping-ponging through different clinics in Madrid yesterday, I think I found a urologist who will give me instillations of Cystistat (which I buy myself at the pharmacy!). He wants to see me for a consultation tomorrow first (the fourth uro I've seen here!). I am definitely going to write up that paper, playethic!!! Because its even harder for me to describe all these things in Spanish- I'm much better at writing the language. I don't know if they will instruct me how to do home instills- I would be willing to try that. I just seriously want out of this pain and constant peeing, as I'm sure we all do.

I tried Vesicare for three days, and thanks to your post, sailawaygirl, gave it up yesterday and have felt better. I only took four pills but it really made peeing even more difficult, yet I had the exact frequency and urgency as before. The doctor did prescribe me more Elavil than I'm taking, I've had so many side-effects with all the drugs I was afraid to up the dose, but maybe now that another week has gone by I'll try again. Also, the tramadol really does help me, it's the only thing besides Elavil that has changed my symptoms. Elavil has reduced my night frequency, and Tramadol really does cut the pain and even some frequency for me. However, the side-effects are too great for me to feel able to work, which is a problem right now since I've been out almost a month...I also started the IC diet almost immediately (2 weeks ago) when this severity of symptoms started. Gosh I really should have started it in January, haha, but I was in denial.

Anyhow, I really appreciate the support ladies!!!

Besos, Dani

[sailawaygrl]

Glad that you are making progress with Drs. If they do let you do home instills there is some great info on here about doing them yourself. Some Drs offices teach people really well how to do them and some, not so much! I was in the not so much category when I started doing them myself. L Thomas has a great post giving detailed instructions so never fear. If they offer, I would advise you take them up on it. I know that they help a lot of us to get through the rough times.
Good info about the water that Kadi shared. I can't imagine that many deposits in the water. Guess we are spoiled here. YOu have gotten some good tips, like everyone else said, lean on us whenever you need! Keep us updated!

[bob04951]

So sorry Dani, it's tough enough going through this without being over the pond. Could your Mom fill your prescriptions in the States and mail them to you? Even with the shipping it might be way less expensive, some of the things you take are available in genetic form, and could cost you like $4 a script. Don't know how that would work, your Mom could maybe talk to a pharmacist about it. Just a thought.

Other than that, think everyone has covered everything. Diet, rest, reduce stress, etc. When is the school year up there, or are you under some sort of contract? Could you take a leave, come back, get straightened out and then return? Know insurance is an issue, that is always tough. Could you get a temporary disability leave? Maybe that would help.

And feel fortunate, you've only seen 4 uros, there are many in the double digits. Sounds like maybe you've finally hit on one who knows what he's doing, or at least trying to do. Don't let yourself get too down, Spain should be in springtime now or real soon, get out and try to enjoy the beauty, perhaps it will lift your spirits. Ah, the food of Spain, what a shame you can't enjoy all those beautiful spices, but some can tolerate that stuff. Maybe once you feel a little better you can VERY SLOWLY add in just a pinch of stuff, and not everyday. Don't be discouraged, and Happy Birthday by the way old lady! Hang in there, sure you will hear from many with more wisdom and maybe some more suggestions. Wish you the best of luck. Jill, wife of Bob