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No Gloms but Sure I have IC

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  • kayla90210
    replied
    Hey,
    My name is Kayla and I've recently just been diagnosed after a long battle much like yours!
    I was accused of being pregnant and having multiple STI's (I've only just turned 18 so you can imagine my parents shock!) which was complete rubbish! So after my uro removed his head from his backside and decided to help i had a cystoscopy with hydro under general and he found inflammation and a very small ulcer, however he said that the inflammation alone was enough to prove I had IC!
    You're more than likely right about your diagnosis and i feel for you that you aren't getting the help you need but i honestly know how you feel as my diagnosis was 4 months ago and they are still testing for other things instead of treating me!

    best wishes and I hope you get the help you deserve very soon!

    Leave a comment:


  • earthlady
    replied
    I don't know what I would have done without my fur baby to hold on those nights when I was awake in pain. I think she secretly wishes I was still in pain so she would get hugged all night.

    Leave a comment:


  • Fluffersmom
    replied
    Kadi-Here's a thought. Next time we go to a uro office we bring all our old Marie Claires etc into the office and just dump them there.

    Seriously, I am sorry you went through this. Glad your family issues are resolved.

    I too believe in fur therapy. My himalayan Fluffernutter has been a constant support. Doesn't ask what the doctor said when I get back from an appointment. As a matter of fact, and this is strange, whenever I go sit on the toilet, no matter what time of day or night, he appears. I pick him up and give him a good cuddle. If it's at night I bring him back to get with me. Maybe he's learned that toilet sounds=cuddles.

    Take care.

    Leave a comment:


  • kadi
    replied
    It used to really annoy me to sit in the urologist's waiting room (usually for over an hour), and find only golf and hunting magazines.

    Some doctors still use hydrodistension for diagnosis because some patients actually get relief from their symptoms for a time afterwards. Sadly, I was not one of them, but it was still worth it to have the pictures to take with me to new urologists or specialists.

    I had the same experience with disagreement in the operating room. When I came out of anesthesia, I asked the recovery room nurse if I had IC. She said yes. But the doctor went the waiting room and told my mom that it might be IC, but it could also be a transient irritation and could go away by Christmas (I had the cysto/hydo in October or November). Later, every doctor who saw the pictures from the cysto/hydro confirmed IC.

    But at that time, of course my mom latched onto "maybe it's not IC". Because my grandmother was dying of cancer, my brother was serving in Iraq, my uncle was undergoing cancer treatment and my sister in law had a high risk pregnancy - my family did not want one more problem, so most of my family treated me very impatiently and in some instances, quite cruelly - pretty much blaming me for not being ok by Christmas. It was by far, the saddest time of my life.

    The only reason I still have a family is that my mom developed mild IC and kidney stones. Her urologist told her that the pain from her kidney stones is the same as what I feel with IC. We also found out that my maternal grandmother had had episodes of bladder problems throughout her life. I think if the genetic tendency hadn't shown up, I would have lost my family.

    I wish doctors would be more careful with what they say to our relatives. My doctor's being wishy-washy about my diagnosis damaged my relationship with my family for several years.

    Leave a comment:


  • earthlady
    replied
    I read a while ago that there were a large percentage of people who they discovered had the gloms and ulcers and pin point bleeding but were without any bladder pain or symptoms of bladder problems. They didn't know why some people were in pain and some were not even though they all had the glomerulations and bleeding. Hmmm- I'm starting to wonder if this whole condition is more of a nerve hypersensitivity than anything else.

    Leave a comment:


  • vivsmom
    replied
    cysto talk

    My urogyne quoted a study in Sweden that "20 women who wrer pregnant and agreed to have a cysto (why?) all had some gloms or ulcers.
    I found out that my IC is mild.

    Now on to repairing and restoring my bladder!

    I'm glad my office is Uro gyne- all ladies except for the partners that are in the waiting room. Is is werid that I notice the same patient's now?

    Peace!

    Leave a comment:


  • Fluffersmom
    replied
    They take themselves so f'king seriously. I thought of pointing to one of the phony prostates and saying "What on earth is that? Plastic dog poop? Whatever it is, can you please cover that disgusting thing while I am in your office?"

    Leave a comment:


  • earthlady
    replied
    Ha Ha Ha! I should have grabbed one of them and said "I don't have one of these, now what are you gonna do?"

    Leave a comment:


  • Fluffersmom
    replied
    You got it. If you want a prostate, just grab one of the numerous disgusting plastic samples they have lying around their offices.... The first URO I saw, I thought, "I think I am in the wrong office...."

    Leave a comment:


  • earthlady
    replied
    Boy isn't that the truth! When or if I ended up being the ONLY woman in a waiting room full of men I already knew what specialty the doc was an 'expert' in. Too bad I didn't have a prostate.

    Leave a comment:


  • Fluffersmom
    replied
    Thanks

    Thanks everyone. I am pretty sure that I don't have any sort of food allergies and have had no change in stress. At this point, I'd be thrilled to have almost any diagnosis (other than bladder cancer which has been ruled out), just to get on with it.

    I think there are a lot of urologists out there who truly think they are experts on everything urological. This clearly isn't the case. I wouldn't expect every urologist to be an expert on this rare disease. They make their money off prostate problems!!!

    Leave a comment:


  • earthlady
    replied
    I have read that only a small percentage of people with IC/PBS actually have the glomerulations and ulcers but I don't know what research is available to support this. I really do wish drs. would stay current on this condition but a lot them seem to still use their own (outdated) guidelines for diagnosing. My first uro also told me I didn't have IC because I didn't have the glomerulations or ulcers but the third one I saw said I most definitely did have it. I found a good one who started treatment right away, but had to go through a few in the beginning.

    Leave a comment:


  • klite
    replied
    I can relate to your frustration of going through all of those procedures, only to be told, well, not much of anything. I had the same experience: My MD thought IC and was also sure that I had a damaged bladder. But when I went in for a cystoscopy with hydrodistention, my results came back as "irritable bladder." I had a healthy bladder (whew), but the uro said it was just irritated looking, I was drinking too much water, and that I do not have IC.

    When I first heard this diagnosis, I was upset. I had really thought I had found an answer to all of my pain (IC), but after a few days, I started realizing that I have a healthy bladder ... I just needed to take care of it and have patience while it heals.

    Basically, my "mild IC" was caused by diet and stress. Not the answer anyone wants to hear (because it is easier to take a pill than to change your lifestyle).

    I now know that I am allergic to gluten, lactose, and sensitive to acidic foods. Years spent under intensive stress worsened how I my bladder felt - I was housebound for a good while because of all the pain. Over the past year, I have completely changed my lifestyle (job, future plans, exercise, diet).

    Anyways, it is quite possible that you have food allergies (gluten seems to be a big contributor to bladder pain) and the extra stress of being unwell is keeping you feeling unwell. I know, it sucks. Please consider looking at your diet closely -- I ate wheat products my whole life (30+ years), thinking nothing of it. Only in desperation to find relief, did I finally cut it out my diet. 10 months later, I'm doing so much better. Sleep throughout the night, even ate some sundried tomatoes last night.

    Good luck in finding out the source of your pain.

    Leave a comment:


  • ICNDonna
    replied
    I agree that seeing a different doctor, at least for a second opinion, is a good idea. You shouldn't have to repeat the tests --- the results can be sent to the new doctor --- or you can ask your doctor's office for copies of your records. They don't have to give you the originals, but you have a legal right to copies. There may be a charge for the copies, but it shouldn't be very much.

    If you scroll to the top of this page and click on Professionals, you will find a list of medical professionals --- support groups are also listed there and they can be very helpful in finding caring, thorough physicians.

    Warm hugs,
    Donna

    Leave a comment:


  • passion4life
    replied
    I am so sorry to read about your frustrations. Being sick is difficult enough. When you add the frustration of not receiving the help you deserve it is enough to pull your hair out with your hands.


    This site lists several caring and compassionate IC doctors. Perhaps there is one listed in your area. This journey has so many people who are willing to help us. I pray you find your Light and your relief.


    I do not have Hunners ulcers or glomurations but I have been diagnosed with IC. My urologist performed a cysto/hydro under anesthesia and was able to provide a correct diagnosis. I was referred to the urologist by my gynecologist. Perhaps your doctor can refer you to a doctor that specializes in IC.

    Continue to fight for compassionate care from your doctors. You are most deserving of adequate treatment. I truly believe everything you need will be provided. Don't give up! Have the best day you possibly can

    Leave a comment:

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