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To people with IC and bladder problems

Discussion in 'Gastrointestinal and Urinary' started by Mariah, Dec 5, 2014.

  1. Mariah

    Mariah Senior Member

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    Hi,
    I`ve had symptoms of bladder problems for years, which has worsened the last two years. Went to see a urologist today for a cystoscopy where he also put water in my bladder to check for lesions and/or bleeding. He found nothing, and said that I couldn`t be interstital cystis since it would then show up if it was. I also don`t have the feeling of pain when the bladder fills up and relief when it is emptied. It`s more like a steady pain all over in my lower abdomen, often pain and burning in my urethra with and after urination, and the feeling of having to go constantly, that my bladder is never empty no matter how long I sit on the toilet. I`m not sure my symptoms reacts to any kind og food or drinks other than a few to many glasses of white wine.

    My question is to the ICers: Were you all diagnosed with these lesions/bleeding? How would you describe your symptoms? The same goes for those who hasn`t got IC, but still have bladder problems: How are your symptoms? Have you found anyhing that helps?
     
  2. xchocoholic

    xchocoholic Senior Member

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    I have chronic bladder pain but I also get kidney stones. I don't want anyone putting a tube up my urethra so I refuse to get tested. The waiver I was asked to sign convinced me that I didn't want to take the chance.

    The low oxalate diet and avoiding certain spices like cayenne pepper helps as does using an herbal uti treatment from time to time. I'm currently seeing success with Vibrant Health uti formula. Azo with probiotics used to help but stopped.

    I take probiotics and they seem to help if I take them regularly but they never stopped this problem. If I forget these I have more pain tho.

    More info on the low oxalate diet can be found on the yahoo trying low oxalate board. It looks like they still have the most up to date info. The vulvar pain foundation has some good info too.

    Hth. X
     
  3. Ema

    Ema Senior Member

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    I think you should consider getting a second opinion.

    IC is a diagnosis of exclusion unfortunately which means that there is no definitive test to "prove" you have it.

    You can have IC with the lesions (glomerulations) or without. Sometimes even people without symptoms of IC have glomerulations so the presence or absence of them is not the determining factor of IC.

    The symptoms you describe *are* the defining features of IC - pain, pressure, burning, frequency, etc.

    Have you had a broth culture to look for low grade infections? Tried any treatments - antibiotics, pyridium, Elmira? Is it possible you have a candida infection of the bladder?

    The first thing I would try is D-Mannose. This can be a life saver for bladder issues and is cheap and basically non-toxic.
     
    starlily88 likes this.
  4. EsmeDolce

    EsmeDolce

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    Oh you poor thing. I've had IC for about six years, without lesions, and for the first few years my bladder pain was constant with no relief after voiding. Main symptoms are bladder pain, constantly feeling like you have to go to the bathroom, which can also affect sleep, and pain/burning when urinating.

    DEFINITELY get another opinion. Look for a urologist who specializes in interstitial cystitis - like ME/CFS, IC is still not understood well and there are plenty of urologists who don't know how to diagnose or treat it. On average, it takes IC patients 1-2 years to be diagnosed properly (for me it took a year and a half and three urologists to find one who could help me).

    Again like ME/CFS, IC doesn't have a clear-cut protocol for treatment. There are some medications that sometimes work for some people; you may need to try a lot of things before you find what works for you. Here are some non-prescription methods that may help in the meantime:

    - Heat pads: These work better for me that anything else. Get a heating pad and put it on your pelvis, or right between your legs. The heat soothes the pain and even makes the urge to pee not so bad. I use an electric heating pad at home, and sometimes use disposable heating pads if I'm at work or out and about. (I use the Thermacare heat pads designed for neck and shoulder, and put them on my lower pelvis.)

    - Diet: Most people with IC have food triggers. Try to avoid anything that's high in acidity, citrus, coffee, alcohol, and chocolate. There's a good overview of bladder-friendly foods here. I was skeptical of the food thing until my IC got so bad that I was desperate. I completely eliminated everything on the Bad food list and noticed a real difference. Now that my IC is better, I've been able to incorporate more of these foods back into my diet, but I still have to be very careful with fruit and chocolate to avoid a flare. Do NOT drink cranberry juice. It can help urinary tract infections so some people try to push it, but the acidity is horrible for IC.

    - Phenazopyridine (Pyridium): This is a pill that coats the bladder lining and helps with the pain. Once you find a good urologist, ask for a prescription. In the meantime, you can get a lower dose over the counter - Uricalm and Azo are two brand names, but check the box to make sure you're getting phenazopyridine. As a fun side effect, these pills make your pee neon orange!

    - Condom pops: I got this idea from my pelvic pain physical therapist. Take a non-lubricated condom, fill it water, tie it off in a knot, and freeze. When your pain gets bad, stick it in your vagina for one minute. It decreases inflammation and can help with pain, especially after sex. I always keep one in the freezer.

    - Cushion/heating for sitting and car: A lot of people with IC have pain when sitting down, since a chair presses rights against an inflamed, sensitive area. We tend to be very sensitive to vibrations as well, particularly in the car when your nethers are pressed right against a vibrating seat. (I can't be in the same room as loud music and pulsing bass lines.) I've used one of these cushions in the car. It was specifically designed for IC patients and has a whole in the middle to avoid contact. It helped me a huge amount for car rides. Now my car has heated seats, and the constant heat helps a ton.

    For me, the one thing that helped the most was going off birth control pills. All of a sudden, my IC got MUCH better. It was very severe, and It's now it's mostly just annoying, as long as I'm careful with diet/lifestyle. That's definitely not normal though; most IC patients tolerate birth control pills just fine.

    The best thing to do though it to find a good urologist who knows IC and really cares about your pain. If your urologist isn't helping you feel better, you need a new urologist. Keep looking, and don't give up!

    For more info, I highly recommend the Interstitial Cystitis Association and the Interstitial Cystitis Network forums.


    Edited to add two more things I forgot:

    - Prelief: Prelief helps counteract the effects of acidic foods. If you do eat foods that aren't good for the bladder, this can help you avoid some of the resulting pain. Available online or through the IC Network store.

    - Desert Harvest aloe vera tablets: These help decrease inflammation and can help when bladder symptoms are flaring. I keep some on hand and take them when my bladder pain gets really bad.
     
    Last edited: Dec 5, 2014
    starlily88 and Mariah like this.
  5. Mariah

    Mariah Senior Member

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    Thanks so much for all of the kind words and helpful tips! I really feel quite frazzled and just tired and depressed over finding no answers to these terrible symptoms that really interferes with the quality of my life. Over the weekend I`ve read a little bit about this, and as I also understand, in addition to that you can also have IC without these glomerulations, you also have to have a cystiscopy with hydrodistention to confirm these lesions, which I didn`t have. Seems like my urologist didn`t know much about IC. He was so adament that he would see something in the cystoscopy if it was IC, and he was also 100% about me having to have relief with voiding for it to be IC. In addition he also said that I definetly would never get a nights sleep if I had IC because I would be up to go to the bathroom many times. I do wake up one time every night to pee, and even though I take medication for sleep every night, I have to get up 2-4 times from when I go to bed to when I fal asleep. That obviously didn`t count to him....;)

    I do realize that I have to get a second opinion. I live in Norway, which makes it harder to go about finding one that is knowledgeable about IC, because we don`t have these informative patient groups who knows all about which doctors are good that you guys have. But I guess I`ll just try till I find one.

    I`m definitely getting both a pillow and a heating pad tomorrow. I do have a diagnosis of Vulvodynia, so I allready think it`s quite painful to sit, both my private parts, buttocks and the back of my upper thighs burns and stings like crazy.

    Ema: I did try antibiotics the first few time this problem reared it`s ugly head, and also pretty sure I`ve had cultures done several times. Anyway, I can kinda "feel" that this is not a UTI even though it has many similar symptoms, if that makes sense. I`ve had lots and lots of UTIs before. Do you mean Elmiron? No, I haven`t tried any medication for this as no one has been able to figure out quite what it is, and even though my GP is fab, she doesn`t like prescribing a lot of medication for things that I don`t have confirmed.

    EsmeDolce: Thank you so much for taking the time to give me all this advice, it is much appreciated as I`m really lost here! Your symptoms sounds just like mine. I addition I have a Vulvodynia, so I also have a lot of burning in the vulvar area and the buttocks. I`ve searched the cataloges now, but I can`t seem to find Pyridium in any form. I think they may not have this here (Norway). I see that it is possible to by some online from US sites, so maybe I`ll try that. I`ll be be buying Prelief tomorrow. Can`t seem to find a connection to food and drinks yet with my pain, but maybe I will see one if I start following some of the recommended tips. Your condom pop method is both hillarious and clever :D. Maybe I`ll try that, because I do struggle with vulvar burning and "rawness" afer sex. I also thought about getting som aloe vera or aqueaous cream for that.

    This got pretty long, sorry about that. I`m just tired of no answers and a lot of pain and discomfort.
     
  6. Ema

    Ema Senior Member

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    A broth culture is different than a regular UTI culture on a dry agar plate. It can identify gram positive organisms as well. These organisms often cause IC symptoms. And I would agree that it does feel "different" from a traditional UTI (but no less painful!). It can take a more lengthy course of specialized antibiotics to treat this type of infection.

    It's also entirely possible to have a ureaplasmin/mycoplasma infection of the bladder that presents as IC as well. There is a simple culture for this as well.

    I wouldn't accept an IC diagnosis without first ruling out infectious causes of your pain.

    Supplements to repair the GAG layer of the bladder may also help. Hyaluronic acid is a good one that can be taken orally.

    Estrogen levels may also play a role. In some women, too high levels (like from the pill or severe estrogen dominance) can flare symptoms. Low levels can also cause issues so it is worth getting tested (day 21 if cycling) if you can.

    You can also freeze coconut oil into vaginal suppositories. These are soothing as well and also antimicrobial/antifungal to boot!

    I did mean Elmiron...darn autocorrect!

    Wishing you relief fast!
     
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