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  1. #1
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    Being diagnosed and need help for flare ups

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    I'm in the process of being diagnosed. I had thought it was overactive bladder for a long time and tried all kinds of things. I was given a medication that ended up giving me heart palpitations for about half a year. Finally I had an appointment to do a urodynamics test. It was so painful to have my bladder filled up that now they want to do a test with a camera and under anesthesia to fill the bladder more.

    I've started physiotherapy and will start acupuncture with them in another week. I'm taking Betamiga at the moment but finding it's not working. I'm following the diet I've been given. I've totally cut tea out which was hard but I couldn't stand the fact I'd have to pee all day after drinking it.

    I have good days and bad days and I guess today it's been a flare up. It's making me miserable. I can't sleep because I'm up every hour. I can't go anywhere far because I always need to pee. I can't hold it, it hurts. It's like a spasm in my bladder. People around me don't understand and make comments when I have to pee again. It's just so frustrating. I've been keeping a diary about my flare ups and I'm finding it's during ovulation that it's much worse. I can't say it's diet, I don't eat the things on the no-no list and I had symptoms when waking up.

    I'm waiting for my appointment still for the camera and bladder test. The urodynamics doctor wrote to my GP and says he suspects it is IC.

    I was searching online to see if anyone else was feeling worse during ovulation and came across this forum. I'm just really sad lately because of this situation and that nothing seems to be helping. I read and it's like there is no cure =(

  2. #2
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    Re: Being diagnosed and need help for flare ups

    Im sorry you have to deal with this terrible disease! Im glad you have found this forum and can hopefully learn some coping skills from other ppl who suffer from ic. My symptoms of ic are very simular to yours. Ive had it for 7 years now. Done so many tests iv lost count. Going for an interstem install tomorrow. You tend to feel alone and no one understands what your going through. I take it one day at a time. I have terribld days and some good days but i hope you find something that works for you. When im in a flare i usually have a hot bath. For some reason it calms the bladder down. Some ppl talk about cold compresses on the bladder or hot water bottles. Another huge factor is diet! Really try and stick to the ic diet believe it or not those little things that you cant imagine are triggers can be a problem. Write a food diary. My physiotherapist said when im in a flare to relax my pelvic floor. So lay down take beep breaths and image relaxing everything. When we are in flare ups we tense up tighten the pelvis and make the pain worse! Lots and lots of water intake is important. May be bad practise but i do slow down water intake about an hr before bed. Some ppl use sleeping aids as well. You need positive support around you so maybe explaining the disease to your friends and family will give them a better understanding and make them more sympathetic. Once again im sorry you are going through this but glad you are here

  3. #3
    ICN Staff ICNDonna's Avatar
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    Re: Being diagnosed and need help for flare ups

    I'd like to say to the IC Network.

    One thing I do encourage is that you have a look at the American Urology Association Guidelines for Treatment --- I'm sure you'll find some things there to discuss with your doctors. It's good that you're following the diet; I know it's a challenge, but it's well worth the effort.

    The test they are scheduling for you is what we call a cystoscopy with hydrodistention.

    I'm sending healing thoughts your way.

    Donna
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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  4. #4
    ICN Founder icnmgrjill's Avatar
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    Re: Being diagnosed and need help for flare ups

    Well actually we can use the word "cure" now... for some of the subtypes of IC. You need to watch three videos on our website -

    #1 - The Five Subtypes of IC
    #2 - The Estrogen Chat
    #3 - The Six Steps of Treatment

    We no longer think of IC as a bladder disease (unless you have lesions). Rather, we think of it more as an injury ... but the question / mystery is where YOUR injury might have occurred. The subtypes explain that.

    Watch the videos and then if you have any questions, you can call our offices and ask!

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  5. #5
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    Re: Being diagnosed and need help for flare ups

    Thanks everyone. And wishing you luck Alexa86.

    I'm due tomorrow for the cystoscopy with hydrodistention and I'm very scared. I do hope it will help though.

    I started physio at the hospital and they did some acupressure thing with seeds in my ears which seemed to have helped a little. I found a hot bath with epsom salts helped a little with flare ups and Alexa86 you are right that its about relaxing. I know when I have that pain and urge that I tense up. I used a warm heat pad and spray lavender around my room to stay relaxed.

    As for diet I'm not finding that it helps. I keep avoiding certain foods and still get the pain. Even in the morning when I haven't eaten anything I have the pain. I've been reading about the links to hormones and even yeast allergies. So I may have to do tests to see if I'm allergic to anything. After the procedure I'm scheduled to do a month's worth of acupuncture with electricity.

    I'll check out the videos, thanks Jill. I guess after tomorrow's procedure I'll know what I have.

  6. #6
    ICN Staff ICNDonna's Avatar
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    Re: Being diagnosed and need help for flare ups

    Quote Originally Posted by silverphoenix View Post
    Thanks everyone. And wishing you luck Alexa86.

    I'm due tomorrow for the cystoscopy with hydrodistention and I'm very scared. I do hope it will help though.

    I started physio at the hospital and they did some acupressure thing with seeds in my ears which seemed to have helped a little. I found a hot bath with epsom salts helped a little with flare ups and Alexa86 you are right that its about relaxing. I know when I have that pain and urge that I tense up. I used a warm heat pad and spray lavender around my room to stay relaxed.

    As for diet I'm not finding that it helps. I keep avoiding certain foods and still get the pain. Even in the morning when I haven't eaten anything I have the pain. I've been reading about the links to hormones and even yeast allergies. So I may have to do tests to see if I'm allergic to anything. After the procedure I'm scheduled to do a month's worth of acupuncture with electricity.

    I'll check out the videos, thanks Jill. I guess after tomorrow's procedure I'll know what I have.
    Please let us know how you are doing after your hydrodistention.

    Warm hugs,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  7. #7
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    Re: Being diagnosed and need help for flare ups

    Hi,

    I had a Cystoscopy with cystodistension and a biopsy. Is cystodistension the same as hydrodistention?

    I went via the NHS and the staff were really friendly. I was very scared and nervous but luckily was one of the first to have my procedure done on the ward. I never had this tube attached to my hand and that really hurt as did the anesthetic was pretty nasty. I woke up to a lot of pain and the nurse gave me some painkillers. I stayed for a few hours in the hospital until I needed to pee and realised I had been bleeding a lot on the bed. When I peed it hurt so bad and was a lot of blood. I was discharged about 3pm that day after my procedure at 10.30am. I was given paracetamol and I slept it off that day because the anesthetic was really strong.

    The next day I wasn't bleeding as much. I still had some pain but it wasn't too bad. I kept taking the painkillers every 4 hours. It mostly hurt when I moved around so I stayed in bed or stayed on the sofa.

    I'm now on day 2 since the procedure and pretty much all better. As for results, I'm finding I'm not having as much urge to pee. I have been able to hold for up to 3 hours before I noticed I haven't been. There have still been "flare ups" where I feel the urge but I think a lot is retraining my brain.

    I'm now waiting on the follow-up appointment for my diagnosis and what will be done next if anything needs to be done. I've stopped taking the medication Betmiga for now because I didn't feel it was doing much. The doctor did tell me we may need to increase the dosage or to try a different medicine but I'd rather try to avoid it altogether.

    I'm hoping the acupuncture will help, as will more natural remedies. I've been taking marshmallow root capsules instead.

    Will update when I see my doctor next. All in all, the healing has been relatively fast and not as painful as I imagined and I'm hoping once I'm healed that it has helped my bladder.

  8. #8
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    Re: Being diagnosed and need help for flare ups

    You are so not alone! Iím so sorry. Iím also flaring right now but had 5 months of complete remission (just shared my story if you want to read it) things that got me into remission. From my story:
    Things that really helped me: Taking Aloe Vera and Marshmallow Root pills daily, as well as a probiotic, deep breathing everyday, limiting stress as much as possible (I even had to cut out a couple negative relationships in my life), for those believers- pray/bible study (learning about chronic illness in terms of religion gave me a different perspective on it), a good cry, getting lots of sleep, following a healthy diet, I stopped having sex (this one was hard... living with my boyfriend of four years and stopping completely is tough) alternating heating pads and ice packs on my stomach/urethra, I completely cut out alcohol and coffee for those months (in remission I could drink vodka waters with lemon no problem but as soon as I brought coffee back into my diet I flared- shame on me) , only drinking certain water (for me Arrowhead is the best) drinking a teaspoon baking soda/water a few times a week, I juiced a lot and ate A LOT of raw foods (I would definitely recommend this.. getting your body to an alkaline state is so important!), I journaled my thoughts and symptoms almost daily.

    I am now also drinking apple cider vinegar daily and taking d-mannose to control yeast (some docs and research will tell you how related these two are)

    So sorry that youíre hurting!! The best thing for a temporary moment of relief for me is alternating heat and cold. I sit on the heat pad or ice back and wrap it forward to my stomach.i usually alternate every 5-10 min (doing so as I type this). Youíre not alone!!! 😣

  9. #9
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    Re: Being diagnosed and need help for flare ups

    Quote Originally Posted by Jsouth21 View Post
    You are so not alone! I’m so sorry. I’m also flaring right now but had 5 months of complete remission (just shared my story if you want to read it) things that got me into remission. From my story:
    Things that really helped me: Taking Aloe Vera and Marshmallow Root pills daily, as well as a probiotic, deep breathing everyday, limiting stress as much as possible (I even had to cut out a couple negative relationships in my life), for those believers- pray/bible study (learning about chronic illness in terms of religion gave me a different perspective on it), a good cry, getting lots of sleep, following a healthy diet, I stopped having sex (this one was hard... living with my boyfriend of four years and stopping completely is tough) alternating heating pads and ice packs on my stomach/urethra, I completely cut out alcohol and coffee for those months (in remission I could drink vodka waters with lemon no problem but as soon as I brought coffee back into my diet I flared- shame on me) , only drinking certain water (for me Arrowhead is the best) drinking a teaspoon baking soda/water a few times a week, I juiced a lot and ate A LOT of raw foods (I would definitely recommend this.. getting your body to an alkaline state is so important!), I journaled my thoughts and symptoms almost daily.

    I am now also drinking apple cider vinegar daily and taking d-mannose to control yeast (some docs and research will tell you how related these two are)

    So sorry that you’re hurting!! The best thing for a temporary moment of relief for me is alternating heat and cold. I sit on the heat pad or ice back and wrap it forward to my stomach.i usually alternate every 5-10 min (doing so as I type this). You’re not alone!!! ��
    Hi there, I'm so sorry to hear you are flaring up again, it's such a sinking feeling when that happens when you've been doing fine for a while. It's like always on my mind especially in the morning if I'm going to have a good or bad day. And then the same at night it's how many times do I think I'll be up.

    I've been taking marshmallow root pills too but stopped after my procedure but I'll get back on them today I think. I also bought some Corn Silk after reading posts on this forum but I've not tried those yet.

    I was curious if d-mannose would help. I'm in the UK so it's not easy to get this. I normally have to search on eBay. I started to take d-mannose when I was in the US because I always have bad UTI's there. I did read about IC and yeast being connected and was thinking of going to the doctor to do an allergy test because I can't find trigger foods.

    I had to totally cut out tea which was frustrating as a Brit and normally having a cuppa in the morning lol. I tried every kind of tea and even non-caffeine tea like red bush which also screwed up my bladder. Funny thing is coffee doesn't seem to really effect me. I usually have decaf but on occasion I have a mocha and I'm fine. I don't drink alcohol but as a Chinese person I've found I can't have Chinese food as the MSG messes me up bad and I'm stuck in bed for the rest of the day from bladder spasms and constantly needing to pee.

    I'll have to look into making my body more alkaline. I also had read about estrogen having a part to play in flare-ups so I'm going to have to hit the gym or something.

    Thanks so much for sharing with me, that's some useful advice and it's always wonderful to know we aren't alone in this =)

  10. #10
    ICN Staff ICNDonna's Avatar
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    Re: Being diagnosed and need help for flare ups

    Sometimes we can find trigger foods and drinks by keeping a detailed diary, listing everything that goes in your mouth, along with time of day, urinary frequency, activities, pain levels --- that way when there is a flare, we can go to the diary and look for possible causes.

    I hope you are one who is helped by hydrodistention. However, even if you are, I encourage you to stick with the diet and any medications that helped get you there.

    Donna

    P.S. Vinegar is extremely acid and probably not a good idea.
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

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