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  • Shan&Diesel
    replied
    New to the forum

    I do feel your pain. I was diagnosed last July and it was a long road before they ever found it. This all started in 1994 for me when I had my miscarriage. I had endometrosis and had 6 laparscopies. Long story short it was very bad on my bladder. I OBGYN had been telling me for a couple of years that he thought I had IC but I never thought much about it until he reminded me again. I've been thru alot to only be 41, laparscopies trying to get pregnant, hysterectomy, pituitary tumor, radiated thyroid, pituitary surgery and now this. Just when I thought it couldn't get any worse it did. IC IS HORRIBLE. I don't wish it upon anybody. I live by myself so therefore there is nobody to truly see what I go thru in the privacy of my own home. Do any of you fellow icers have trouble losing weight, and just feel so bloated? Somedays my clothes just hang on me and some days they are very tight. I have had to stary buying elastic waist bands for comfort. Also I do feel like some of this is hormonal, since a don't have a menstrual cycle I can't tell if its worse but I do remember when I used to have one and it was always towards the end of the month and that is when I feel the worst!! Just would love to hear your input please. I may be on the wrong forum for this if so let me know!! I do pray for all my fella IC'ers and take life ONE DAY AT A TIME thats all we can do.

    emamom;629481]I am so sorry to hear about your pain. The bleeding sounds horrible, and painful. I am a Canadian living in the US and can relate with how long you have to wait to see a specialist - ridiculous!

    I do the Heparin installations, sometimes 3x a week. The Llidocaine numbs my bladder so I get quite a bit of relief for about 3 hours and then I have to take a Vicodin for pain. I find the Heparin installations burn my bladder the day I do one, but the next day I feel so much better. I used to do Elmiron/Sodium Bicarbonate/Lidocaine which I found very soothing but I get more long lasting results from the Heparin installations. I can usually get a week of relief after I do 3x installations the previous week.

    Heidi [/QUOTE]

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  • cinemamom
    replied
    I am so sorry to hear about your pain. The bleeding sounds horrible, and painful. I am a Canadian living in the US and can relate with how long you have to wait to see a specialist - ridiculous!

    I do the Heparin installations, sometimes 3x a week. The Llidocaine numbs my bladder so I get quite a bit of relief for about 3 hours and then I have to take a Vicodin for pain. I find the Heparin installations burn my bladder the day I do one, but the next day I feel so much better. I used to do Elmiron/Sodium Bicarbonate/Lidocaine which I found very soothing but I get more long lasting results from the Heparin installations. I can usually get a week of relief after I do 3x installations the previous week.

    Heidi

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  • Mearle
    replied
    Hi Phoebe,

    How are you doing now? I live in a small town in New Brunswick, Canada and I find that nobody really knows about IC.
    Are you living pain free now? I have to drink 2-3 litres of water a day just so my pee doesn't sting.. Pain pain in my abdomen and urethra..

    Sincerely,
    amanda

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  • Phoebe M
    replied
    Hi Donna, thanks for your reply. Yes Cindi the emerge doc gave me an Rx for Tylenol 3. it helps for about 2 hours. i need something stronger and longer acting. i find omega 3 fish oils help a bit. thanks for your replies. this whole thing has been so stressful and sometimes lonely.

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  • Phoebe M
    replied
    Hi Donna, thanks for your reply. Yes Cindi the emerge doc gave me an Rx for Tylenol 3. it helps for about 2 hours. i need something stronger and longer acting. i find omega 3 fish oils help a bit. thanks for your replies. this whole thing has been so stressful and sometimes lonely.

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  • cmclien
    replied
    Prelief

    Originally posted by Phoebe M View Post
    Prelief doesnt seem to be sold here. may have to order from internet
    You can buy it here or Amazon has it too. It raises the alkalinity of food by reducing the acid in it.

    Well thats good you're getting the instills, I thought that combination would be soothing for the bladder. My Uro recommends them 1x a week for 6 weeks. Maybe someone whos had them can comment on how long they take to work. You sound like you're in alot of pain, hope you feel better soon. Have they prescribed some pain medication for you?

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  • ICNDonna
    replied
    to the IC Network. I'm sorry you are having such a difficult time.

    I do have one suggestion --- and that is to be very cautious about supplements --- If you check the ICN Shop, you will find some that have been found to be IC safe --- I would stick with those for a while at least.

    The last I knew Prelief is not sold in Canada.

    Sending warm healing thoughts,
    Donna

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  • Phoebe M
    replied
    Prelief doesnt seem to be sold here. may have to order from internet

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  • Phoebe M
    replied
    end of first post

    Thanks Cindi, ive tried to eat IC diet since January. Taken every supplement and drank every tea that i read about i get the odd day of being ok. On Monday i decided to go to emerg. doc is giving instills every 2 days for 2 weeks of lidocaine, heparin and and sodium bicarbonate. the pain after is unbearable. i bleed. is it normal to be in pain this long?

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  • cmclien
    replied
    Hi, Welcome to the board!

    Sorry you are having a hard time. The amitriptyline will probably help while you are waiting for your appointment. In the meantime follow the IC diet (link is below), it usually helps most people and your pain will lesson some. Also, there is prelief you can take otc (I'm not sure about canada but look for it) that lessons the acidity of food and drink you take with your meals.

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  • Phoebe M
    started a topic first post

    first post

    Hi. im using my phone to type this. i was diagnosed 2 years ago. after the biopsy it went away. until i got a bladder infection last september. it wouldnt go away. so it was 3 months until it was gone with 4 different antibiotics. then the IC kicked in. ive had excrutiating pain every day since December. spasms, shooting pains, burning pain, aching, razor pain in the urethra every day. the walk in gave anti inflammatories and amitryptaline. my urologist appt. isnt until March 29
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