Announcement

Collapse
No announcement yet.

Here is my IC story....

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • cbarton123
    replied
    Re: Here is my IC story....

    Don't know if ur still in here but did uro vaxom work for u? Do u know how I could get it in the us? I'm desperate for anything to help

    Leave a comment:


  • blendno14
    replied
    Hi,

    Glad to see evreything went well. :woohoo:

    I hope you get relief with from Uropol.. I managed myself into a small flare with the help of absolutely delicious chocolate cakes made by a french "chocolatiere".... but I shouldn't have them *sigh*

    Leave a comment:


  • Anjita
    replied
    Home installations

    Dear All,

    well..got back from Germany and learned how to do home installations. Guys serious it is not that hard. Well i havent done it myself yet ( will be on Friday ) but i did it on Monday and the nurse just kind of directed me...It was a big hassle to bring the installations with me as i had to take them with my hand luggage in a coolbox with ice packs. And due to the regulations at the airport it was a big deal. But i got them and will start doing my installations now. I hope that it will help!!
    Also i bought the cookbook and trying to be strict on the IC diet.

    Let me know how you guys are!!!
    ANJA

    Leave a comment:


  • Anjita
    replied
    Bladder installations

    I will be flying home to Germany tomorrow ( wednesday ) to learn how to self catherize and do my own installations. My doc will help me with that trying to teach me how to do it right. I am a bit scared but i HAVE to learn it as i have no other choice. I first wanted to just get the Uropol shipped over here and then go to an Urologist and let them put in in my bladder. If i would go through the government health care it would take up to 12 weeks to wait for an appointment. So i asked a urologist here how much it would cost me for him to do it. I mean...it only takes like 2 min for the installations. Not a big deal. I almost fainted when i heard what i would have to pay each time. ( It took 2 weeks for them to get back to me to let me know )
    Well, i would have to go and see a doc first ( WHY? ) that would cost me £145 ( i think around 300 US$ ) then for each time i would have to pay £300 !!!
    That would be around 600 US$ each time!!! Are they crazy?????
    Well i should become an urologist in this country ( England ) i guess that is the way to make money.
    Well..i guess my plane ticket is worth the trip back home! I only got 2 days to learn how to do it so i better be brave, close my eyes and just do it.
    Wish me luck. My appointment is on Friday 3rd May!
    Talk to you guys then. Just thought i tell you about this...that is ridicolous.
    Of course i kinda panic now...because what if it works fine in Germany and then i come back here and it doesnt work. I cant go anywhere for help...oh well..lets just hope for the best...cant be that hard?
    Take care. Talk soon

    Leave a comment:


  • kadi
    replied
    Hi Anja,
    You might want to ask your doctor about Amitriptyline (called Elavil here in the US). It's one of the most effective medicines for IC & you can tell a difference within only a few weeks. It's especially good for helping sleep & frequency, but it reduces pain as well. It's prescribed for IC and vulvodynia, so you may get better on both accounts! I'm so sorry about your IC diagnosis, but you are on the right track, learning to be your own advocate & seeking out treatments.

    I was very sick when I got IC, but with treatments, diet & hard work, most days now I feel pretty good, work full time & lead a pretty active life. Hang in there, the hardest part is the beginning, then it gets better.

    Sending a warm welcome & wishing you better days soon--

    Leave a comment:


  • Anjita
    replied
    Ph balance

    Hiya,
    does anyone know when exactly my urin is to acidy? I have those tests at home where i pee on this peace of paper and it tells me how acidy my urin is. But for some reason i am not sure what is normal and what not...
    Maybe you guys know?

    Hugs
    ANJA

    Leave a comment:


  • **Angie**
    replied
    Ohhh to have Nutella again.

    Leave a comment:


  • blendno14
    replied
    Hi Anja,

    I just remembered that I got the Prelief from a friend who brought it over, but the cystoprotek I got shipped to the UK....but I think I jzst din't want to pay the shipping costs hm....

    Elmiron gives me a bit of hairloss, but not enough to be really worried or stop it. As I receive both treatments I cant' tell which is helping me more. As the symptoms are coming and going I sometimes don't know if it's due to eating something wrong or trying to go without medication LOL.

    Maybe you want to check into the german forum as well, my german is much better than my english

    Btw maybe you can PM me the name of your doctor - we collect all doctors with IC knowledge in a database...

    Schönen Abend nach England und grüße aus der Apfelweinstadt am Main,
    Christina

    Leave a comment:


  • Anjita
    replied
    Cystoprotek, Prelief

    Hey guys, do you have any good experiences with either Cystoprotek or Prelief ?

    Leave a comment:


  • Anjita
    replied
    Hey there, thank you so much. I will check out Amazon for Prelief. Yeah i will for sure stay patient with Uropol. I just hope i will be able to get it shipped to Australia! Where are you from in Germany? Does Elmiron help you? Do you suffer from Hairloss? Isnt that the main side effect?

    Bis Bald....

    Leave a comment:


  • blendno14
    replied
    Hi Anja,

    Prelief can be shipped to the UK - i get it this way....I order it via amazon.com

    It took me some month to feel better. But I know some patients who felt better quite quickly. You may want to visist www.ic-forum.de and ask for more information. Uropol ist dicussed quite often, as we have problems with our health insurance system over here. We are a s small community but I think we've got most of the knowledge together about how to treat IC in germany.

    I think Uropol is one of the best instillations available. Cystistat is equally as good, (hyaloronsäure) but more expensive. Most important thing is patience. Don't give up on Uropol if you don't feel better immediately. (Ich nenne das immer den IC Dreisprung: Information, Hoffnung und Geduld...)

    4 times once a week and the monthly is the standard. I don't do it myself I drive once a month to the Urologische Poliklinik Mainz.

    My IC is quite mild. I only take a heating pads for discomfort / very mild pain. My frequence is no too high to bother me and I sleep through the night. But I was treated VERY early with Elmiron AND Uropol. Of course I still wish I wouldn't feel may bladder al the time and go into remission...

    Leave a comment:


  • Anjita
    replied
    Hallo Christina...
    wow its nice to see someone from Germany. How long did it take until you felt relieve from Uropol? Do you have to pay it urself? What are your symptoms? Where in Germany are you from??
    Are you doing the installations yourself? Do you think it is worth it to try Uropol? Will take it once a week for 4 weeks and then monhtly. Is that enough like that or do i have to take it more often???

    Talk to you soon....tschuess.....

    Leave a comment:


  • Anjita
    replied
    Not alone anymore....

    Thank you guys...i was so happy to see all your replies. I had tears in my eyes because i did not feel alone anymore. Thanks for that.
    Well yeah..i did stop the cranberries. You are right..its is killing my bladder.
    I am a bit scared to self catherize but this will be my only choice at the moment. I only have 2 days in Germany to learn it..than i will go back here to England and will be on my own...I hope Uropol will help me. It costs so much . I will have to pay it all myself. Does anyone know how long it takes until it works? What is the MSM gel ? Not sure if we get that here...
    I tried soooo many cremes and gels. At the moment i only use Bepanthen and Hydrafemme gel. My vulva skin is very thin..so any irritation makes it feel like fire. So i put crazy amounts of cremes on it..which isnt good either.
    The weird thing is that i never really know what actually just helped me because i take 3 things at once out of panic for pain.
    I really hope that i will find help in Australia....my mom will be trying to shipp the Uropol over every months..not sure if that will be working.....
    Anyone knows where else i can get Prelief?

    Hope to talk to you all soon!!!

    Leave a comment:


  • blendno14
    replied
    Hi Anja,

    I hope Uropl helps you. I receive treatments since last year and my IC has improved - not dramatically, but slowly.....how often do you get it to start with? Oder besser: wie oft wöchentlich hintereinander wirst Du es bekommmen?

    Grüße, Christina

    Leave a comment:


  • Berkshire Road
    replied
    Oh, honey, I miss my nutella too! You can get it in the US, but it's not a big thing here. The good news is, after succesful treatment over a period of time, you may be able to have it again -- in moderation.

    I'm really impressed that you've been able to get as far as you have, with all the traveling you've been doing! What great spirit and determination! With those qualities, and the doctor in Germany who is willing to work with you, I'll bet that you will find your way to successful treatment.

    Good luck. I'll be interested to hear how things work out for the rest of your time in England, and when you get to Australia. Stick around, ok?

    Leave a comment:

Working...
X