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Flaring in germany

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  • blendno14
    replied
    Hi,

    sorry I answer so late but I'm busy decorating a house and working full time, so I'm pretty much

    I live in Frankfurt - so Darmstadt is quite close..

    The best solution if you want to see a doctor who has lots of knowledge about IC ist to go to the Univeristätsklinik in Mainz and get an appointement with Dr. Hampel - an nobody else. He diagnosed me with IC and he prescribes my treatment. I don't know if your health insurance pays that??

    Here is link to the hospital: http://www-klinik.uni-mainz.de/Urologie/kontakt.htm

    To get an appt. you have to call: 06131 172429
    If you want to, I can give you my phone number and we can talk, because to explain everything I have to write a novel




    I also copy you a message that I worte earlier for another woman who is currently in germany, maybe there is something helpfull in that post - although I understand you are looking more into the alternative options..


    XXXXXXXXXXXXXXXX

    Hi Arabelle,

    Unfortunately it is a tiring to find a doctor in Germany that either believes that IC is an illness, and not a psychosomatic problem , and then to find one that will treat you, as it is in the USA. Anyhow all I can recommend is that you keep trying and dont give up hope!

    I found one address in our database:
    Dr. Stephan Thomas, Ratzeburger Allee 111, 23562 Lübeck, tel: 0451/5041020
    Unfortunately I don't know how old this entry is, but you might want to phone him and ask if he still accepts IC patients. I also sent a PM to a member of the forum from Lübeck, - I'm still waiting for an answer.

    In the meantime here is some information:-
    Elmiron is available in Germany BUT it's not paid by the medical insurance. It was somehow forgotten during the reform of the health care system (no joke) in 2004, until then it was paid.You can buy it over the counter without any prescription as "SP54 Pentosanpolysulfat", but it costs 25 Euros a pack. There are two options to get it cheaper: you have to find a doctor who prescribes the so called "ICA-Mix", recommended by the ICA Germany. This is a prescription that contains 97 mg Pentosan and 3 mg Amitryptilin (Elavil in the USA) per capsule. As the health insurance has to pay the Amitryptilin, the whole prescription is paid for . You need to find a doctor with a bit of courage to get this prescription. My first doctor refused, but the doctor in Mainz where I am now sees no problem.
    I don't know how good your german is, but maybe your husband or a german friend ca take a look with you at this link: http://www.ica-ev.de/50450795b80b059...c09/index.html

    The second way to get it cheaper is ordering it via Internet (this is not the product elmiron of course, but the extact same active ingredients). If you consider taking it , I can PM you the address. Actually 5 or 6 women in the german forum use this method, most of the others are taking the ICA-Mix.
    I told my doc that I can't take the Mix because Amitryptilin causes urgency for me, and I told him I get it via internet and he sees no problem. I wanted him to know just in case I need his help in case any side effects need to be discussed.
    . The second most used medicines is Uropol-S (not available in the USA) by Pohl Boskamp. You can google Uropol-S and the product information. As Uropol is cheaper than Cystistat doctors tend to prescribe it more often then cystistat. Interestingly both products seem to work differently, my bladder didn't like cystistat much but I can tolerate Uropol-S quite well. It is important to get it at least 4 times or more often weekly, then bi-weekly or once a month. I was lucky and got it about 10 weeks in a row, then bi-weekly as long as I wanted.

    cystistat is also available, but more expensive so the docs and assurance don't like to pay. Almost all women in the german forum get Pentosan, Uropol or Cystistat. Actually some woman have big trouble with their assurances, as they refuse to pay either Uropol or cystistat. The situation is so complicated that I cannot explain it detail. In fact, some of us have NO problems, some have lot of trouble (and a lawyer to get the medicine), some docs refuse to prescribe it because they are afraid (or cowards, as I call them).

    Arabelle, I have to leave now but will writ some more tomorrow, I just wanted to let youknow that I havent't forgotten to write...

    In the meantime, of your husband can help this is the german forum: www.ic-forum.de
    If you want, we can also talk on the phone, I can PM you my phone number if you wish to talk...

    Sending you best wishes & I hope you can enjoy the brilliant weather at least a bit...
    Christina

    Leave a comment:


  • dodgewoman
    replied
    Wow, reading your post is similar to mine! My IC flared up bad about 8months after my son was born, he too was a c/s. I feel for you. It's hard taking care of a little one(I have two now) while flareing. I hope you can find a doc that will help. Def. look into herbs and things like that.

    Leave a comment:


  • amartaingirl
    replied
    re

    frequency & burning are both my problems

    i have little or no pain

    if its something you ate that caused it
    drink 1 tbsp baking soda with 1 glass water
    (well disolved)

    that should do it

    for upkeep
    check out
    desertharvest.com

    they have these aloe vera pills
    suppositively they are similar to elmiron w/o the side effects

    i think we may have mild case of IC (w/o all the pain)
    thank you god!!

    it works for me like this

    i take elmiron 3X day
    was doing well..can even drink a beer!
    but then, my hair started to fall out...so i cut back to elmiron 1xday
    and its in place i took the aloe vera pill 2x day

    worked great ...till i had a beer
    then i had to go back to elmiron 3xday for a few days..until the beer passed.
    so ...dont drink beer on the desert harvest aloe pills


    but i also take the aloe pills...if i ate something questionable
    (in addition to my elmiron)
    and im having much luck with them

    they are about $34 for 90 pills

    Leave a comment:


  • sweetangel2080
    replied
    hi, I am in the UK but am curious to know if the IC docs in Germany offer more than the UK. In the UK standard treatments are conservative like elavil, hydroxyzine, ditropan and cystistat. There is not much else like heparin instills and Elmiron is hard to get.

    I worked in Germany for a while, and found the healthcare system thorough.

    I am looking into going abroad for treatment (privately) and thought I'd ask on this post, if anyone knows a specialist of IC in Germany. I looked at the German IC forums and emailed them but there are no doctor recommendations on it.

    Leave a comment:


  • mamacox6977
    replied
    thanks for the support. I am trying to tough it out with out medicine right now because I am still breast feeding my son, since he may have to have heart surgery in a few months. Just working on finding out what keeps the flares away. Trial and error stinks, especially when you can't take anything for the pain. I have the IC survival guide and am trying to find a doctor to work with, so things are moving slow right now. I appreciate the support, it helps alot

    jackie

    Leave a comment:


  • Tracey5399
    replied
    Me 2, i wish i could help. I wonder if the IC survival guide would be of good benefit to you, it's very inexpensive and Dr. Moldwin ( the author ) has made it easy and understandable for proper treatments.
    I really hope you can find a doctor who can help and you start feeling better soon. If you need any help finding a doctor etc... just wanted to say i will try and help also.
    Have you looked here in the ICN shopping mart ( not sure if you can receive packages or if they ship there ) but i am sure jill can answer that for you. Lot of good things to try and all IC friendly.

    Best of luck to you,
    Tracey

    Leave a comment:


  • dancemomof2
    replied
    Hope you feel better soon, wish I could do something to make you fell better.

    Leave a comment:


  • mamacox6977
    replied
    I live in darmstadt...problem I have is finding someone who specializes in IC. I can't afford to do any procedures that could make my flares worse because I have a young son and need to be able to take care of him. Usually if I watch my diet and drink demineralized water I can keep the pain to a minimum. However I lost so much weight eliminating things that I had to start adding different foods back in my diet; I went out to eat one night and had a cheese burger and after that it just went down hill. Now I'm just trying to find natural stuff to try until I can find a doctor. What does marshmellow tea do? Do you know any other natural stuff that works to ease ureathral burning etc.

    thanks so much for you help
    jackie

    Leave a comment:


  • blendno14
    replied
    Hi Jacki,

    if you pm me the town where you live in, I can search in the german IC forum for a doctor. You can get instillations with Uropol or Cystistat which should be safe (but I'm not a doctor). You can also get Elmiron and other IC medication, but I don't know of they are safe....If you're going the natural route you can get marshmallow tea in germany as well, it's called "Eibischwurzel" and you can get in in the Apotheke.

    If I can help you in any way pls. let me know...

    Leave a comment:


  • mamacox6977
    started a topic Flaring in germany

    Flaring in germany

    I was dignosed with IC 6 years ago and have been in and out of remission for the past 2 years. It flared up 7 mos. after having my son (he was a c-section) and has been acting up ever since. I have had ureathral burning and urgency...not burning on urination but always having to go and burning after voiding. I am currently breast feeding my son so taking heavy meds are out. Also I am stationed in germany with my husbend and have not found a uriologist who really understands IC. If anyone knows of any meds (I can take while breastfeeding) or other wise to alleviate symptoms please let me know.

    thanks
    jackie
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