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  1. #16
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    Re: IC pain and depression

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    Thanks Sarah. Yes that would be great thanks. I'm not quite sure how to PM. I've added you as a friend 🤔

  2. #17
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    Re: IC pain and depression

    I am so sorry you are going through this. It is only natural that you are
    depressed. I was asked this question quite a bit in the beginning. I would always answer, " Of course I am. I am in severe Pain! If you can get rid of my I.C my depression will go away!" Circumstantial depression. I can say with all honesty it does get better. There have been extended periods where I feel normal. As you progressively feel better you will introduce foods back into your diet. Everyone is different. Some can reintroduce things like a little chocolate or something you miss. That is much later. For now stick to your I.C diet. You will feel better. You can lead a pretty normal life. But you will encounter flares from time to time. The most important thing you must remember is keep your urine alkaline. Find a good water that is alkaline. Stay away from acidic drinks. Especially cranberry! I am in a flare right now because I have been feeling so good that I slacked on reading the ingredients. It was pure citric acid. My bladder rebelled reminding me I do have I.C. Back to the I.C. diet again till I build up a mucous lining. I use an herb called Marshmallow. I make a tea out of it. Not the best tasting, honestly it is awful but it works. It coats and soothes the bladder. Helps to build a mucous lining. So does aloe. I also take a product called Prelief. You will find it in the antacid section in Walgreens. I can't find it in C.V.S. It is expensive about 14.00 a bottle but well worth it. It keeps your urine alkaline. I can't stress how important that is. If you don't you will have pain. Think of it like pouring fuel on a fire. And you will pee fire! If you are having burning that won't go away Baking Soda will knock it out. But it will raise your blood pressure. I only use it sparingly.
    I want to leave you with this. I know your scared. You feel like you won't be able to have pain free days again. You will. Please excuse my bluntness You will feel like having sex again and you will be able to. Life will become good again. But you must stay informed. Alcohol is out. Some individuals much later on find out they can tolerate a little bit of wine. But that is not me. The tannins are way to high. Stay away from tannins is my advice. They are in wine and grapes. So Alkalize your urine stay informed and you will be on the road to feeling much better. Life will become good once more.❤🦋🌹🦋🥀🐝🥀🐝❤

  3. #18
    ICN Founder icnmgrjill's Avatar
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    Re: IC pain and depression

    Welcome Blue 52!

    Couple of thoughts and concepts for you

    Pain BEFORE urination that is associated with the bladder wall

    Pain DURING urination points to the urethra and is usually a sign of infection

    Pain AFTER urination points to the pelvic floor muscles and/or bladder spasms.

    If you're in agony while you're meeting, that's usually a sign of a severe bladder infection NOT IC. Did you get your culture results back yet?

    However, sometimes menopausal women experience urethral pain because the loss of estrogen and reduced the protective coating in their bladder. So if your vulva is dry, odds are so is your urethra and bladder and vagina. This then could explain why your urethra is screaming when you pee. The chemicals could be irritating the skin. So, have your doc check the quality and health of your skin too!! A simple estrogen cream fixed mine very quickly!

    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.







  4. #19
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    Re: IC pain and depression

    Hello my name is Kellie. I was diagnosed with IC 8 years ago. I was also diagnosed with Juvenile Rheumatiod Arthritis at age 6. I have been taking Elmiron which helps but because of the chronic diarrhea has cause hemorrhoids. I had surgery once and was told o need it again. So it helps my bladder but not my digestive system which causes bleeding. Anyone else have this issue. I was very depressed because it is a never ending cycle. I can't live without the medicine and I can't live with it. Is there any other alternative things I can do to help my ic?

  5. #20
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    Re: IC pain and depression

    Thanks Anita Jane. Posts like this give me some hope!
    Hi Jill
    Well I had had 5-6 antibiotics earlier in the year for presumed cystitis. They didn't ask for urine the first 4 times. I have given 3 samples. None grew anything. There were just some pus cells in the samples.
    I have had pain every day for the last 6 months. It kicked off when I was on holiday. I had had coffee/fresh orange/pizza/wine/gun/chocolate that day. I don't was in complete agony the first few days with frequency and urgency too. That fortnight I was sore I spent most of my time crying!
    It is not like that now. But there is very often pressure and discomfort in my bladder. The severe bladder pain has easy but I have very sharp pains in my urethra. This is every time I pee. It also feels like I'm peeing hot acid. Other times the urethral pain can flare up for hours at a time but I'm not quite sure why. I'm pretty much adhering to the diet. Which is making me sad as I love food and drinks :-(. I'm in my twenties.
    Ps the initial bladder pains felt like broken glass in my bladder.

  6. #21
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    Re: IC pain and depression

    Sorry that should read 6 weeks not 6 months 😅

  7. #22
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    Re: IC pain and depression

    KBurroway. I'm so sorry to hear that. It sounds like a vicious circle. Are you following the IC diet. I think it's one of the first recommended steps. I haven't been diagnosed yet. So I'm not on any specific treatment just Lyrica for pain.

  8. #23
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    Re: IC pain and depression

    Blue52 - I have mostly pain in the urethra too. I've found that the best preventatives are:
    (1) the right amount of distilled water spaced out enough that it doesn't keep me running to the bathroom. Also, the earlier I start drinking it, the better. One cup at 6:00 am, 8:00am, 10:am, on till about 8 or 8:30 at night.
    (2) follow the diet but I push it to the limit and find treats that make me happy. I LOVE cherries every summer. They aren't really allowed but I get away with it. 😏
    (3) I've been taking BladderEase for a while and it seems to help more than all the other pills I've tried (LOTS of 'em)! I found the cheapest bottle on eBay for $40. I started taking 3 capsules, 3 times a day, but I've cut down a little. They seem to prevent the worst pain in the urethra and the burning while peeing. My normal "gap between voids" used to be an hour or so, but now 1-1/2 hours is a minimum and I have occasional gaps of 3 HOURS! (Gasp!) What a luxury!
    So far, I'm doing a lot better than I was for about the past 6 years.
    It's a good thing I was already on anti-depressants. Even WITH them, I feel debilitated, limited, isolated and all that, at times when I'm not doing all that well, because I can't be a normal person and get out of sight of a bathroom.
    I hope you find what works for you, and you can live a pretty normal life until someone finds a cure or at least a dependable remedy for this horrid condition.
    Last edited by ic_hurts; 08-04-2017 at 12:03 PM. Reason: Typos

  9. #24
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    Re: IC pain and depression

    Blue 52, I am a little frustrated reading thru this post and all of the comments. Why are none of you, especially Blue 52, being treated for your pain with pain medications? Antidepressants help some people, but if they are not helping along with diet control and only drinking water (alkaline), then you should be in pain treatment. I read about so many women suffering to the point of wanting to end it, and no one will treat their pain. I understand the whole "oh I dont want my patients addicted to opiods", but I would rather deal with getting off pain meds than living a life of such pain and misery that I would rather be dead. If you have exhausted options such as hydrodistension, elmiron, antidepressants such as lyrica, cymbalta, elavil and others.... why are you being left suffering continuously. I know many doctors are reluctanct due to the addiction issues, but why are we suffering due to the irresponsibility of others. If you are not getting relief from your IC treatment, then tell your doc you want to be referred to pain managment. There are numerous IC pts that are on pain management, and there is nothing wrong with that. Not everyone gets better or cycles out of the IC pain, some of us live with it everyday... and its a chronic life of hell I would not survive without my pain treatment. There is a non-opiod medication called Sprix, it is toradol nasal spray, and it is helping some chronic IC'ers, including myself sometimes. It seems to work differently than taking the pills. Ask your doc about Sprix if they are dead set on leaving you suffering in pain. I am to the point of wanting my bladder removed, but no doc thinks I am suffering enough to go the surgery. This is a horrible disease, and for some like myself, there is no end in sight.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

  10. #25
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    Re: IC pain and depression

    Kburroway-lots of alternatives. Look up nurse Jill Osborne's video on the current AUA guidelines for IC treatment.You can find that video and many other good resources on the IC Network homepage under "IC Resource Center".

  11. #26
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    Re: IC pain and depression

    Hi landor I am taking lyrica for the pain as I quite new to this and that is the first medicine my doctor is trying.

  12. #27
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    Re: IC pain and depression

    I've noticed when I do an intense work out the day after my bladder hurts. I would recommend yoga or a very light work out no running.

  13. #28
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    Re: IC pain and depression

    I actually have done everything according to the AUA guidlines, except botox and cyclosporin, neither of which I am a candidate for. I have even spoken to Jill Osbourne in the past a few times on the phone about my case. I have a very resistant case that has responded to almost nothing. I make the joke that I have chased every purple unicorn there is, and I honestly feel its true.


    Quote Originally Posted by icshorty View Post
    Kburroway-lots of alternatives. Look up nurse Jill Osborne's video on the current AUA guidelines for IC treatment.You can find that video and many other good resources on the IC Network homepage under "IC Resource Center".
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

  14. #29
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    Re: IC pain and depression

    Blue 52, I hope the lyrica helps you, as I know it has helped quite a few IC patients. I had a hard time with it, as it made me a zombie and that side effect never got better. I have taken many tri-cyclics, SSRI's, SRNI's to help with the pain, but the side effects for me were difficult. MarieS1- I do walk everyday (of course in a wooded area where I can sneak off and pee frequently). I used to jog, but I cant do it anymore as it makes the pain horrific. I do try to go to the gym when I can, but have to be careful what exercises I do to not make my bladder worse. This is such a frustrating disease.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

  15. #30
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    Re: IC pain and depression

    It is frustrating. I feel like my body has let me down so much 🙁

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