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  • Diagnosed but that's no relief

    Hey all!
    I was diagnosed with IC in December 2012 at age 18. My symptoms are nocturia, urinary urgency, urethral pain (that I need to go really badly, pressure), and sometimes urethral stinging. I've also felt a tightness in my pelvic region during and after I've urinated after holding it in for quite a long time, but it's nothing painful, it just feels like a tight muscle that needs to be stretched and doesn't happen often.

    I've been taking a look at topics in this forum and I don't seem to have it as badly as most people... I can't help but feel guilty for feeling bad or angry with what I have. Recently it seems that ever since I turned 17 (that's when the symptoms started), all these health problems have begun. I don't feel like I get to live like a normal teenager. I've had sex before but I'm scared to do it again, not for fear of pregnancy or STDs like normal teens, it's that I will be in pain or just plain won't enjoy it. The few times I had sex, all I could think about was how badly I had to go to the bathroom (even when I had made sure to go beforehand). I've also noticed my symptoms get worse for quite a few days after masturbating to climax or sexual activity with others to climax. Also, that I feel aroused when I have to go to the washroom as well (but my mind is totally not into it).

    I lose a lot of sleep over this, waking up every 1-3 hours to go to the washroom (in which I only urinate a little bit) and the feeling of having to urinate still doesn't go away. I get frustrated and cry, and feel like I want to punch something because not only am I tired from barely sleeping, I don't get to be like a normal teenager who sleeps 11 hours straight... let alone 4 hours straight.

    I'm currently on Toviaz for "overactive bladder" but I've tried all the meds for overactive bladders and it doesn't seem to help much. It just dries out my mouth, eyes, and nose. As well, I find my symptoms get worse about a week and a half leading up to my period.

    I should note too that my family has a history of Multiple Sclerosis and Crohn's Disease.

    I don't know what to do anymore and I'll be travelling out of the country for a few weeks in a few days... I'm hoping that the exhaustion from the physical activity on the trip will wear me out so much, my body won't notice the times I have to slightly go to the washroom in the middle of the night.

    I also deal with constipation and diarrhea. So I'll be lying in bed, trying to sleep and my excretion system will just be yelling "**** you" as I feel like I have to urinate, and have pressure on my anus/rectum in having to have a bowel movement... but as I have learned, nothing will come out.

    I'm so sick and tired of this! I want to scream. But at the same time, I put life in perspective and think of those who have it worse. I am active, I hang out with friends, I'm able to go to classes. It just seems that my complaining it stupid. I also don't feel like I'm allowed to have these emotions because of how much worse it is for other people in the world. I always preach to my friends to feel every emotions and accept them, but why can't I? What's wrong with me? I just want this to disappear so I can worry about stupid teenage things... not if I'll sleep 1 hour or 3 hours before I have to pee.

  • #2
    I have been dealing with this same thing my entire life , I am now just getting diagnosed with ic at age 19, have you seen a specialist ,if the medication is not working you'll need to try something new. Please inform on what is helping for you . Azo and warm baths always help me

    Comment


    • #3
      There are many, many treatment options for IC. If you scroll to the top of this page and click on "Patient Education" you'll find a wealth of information about IC, including medications. Are you following an IC diet? If not, I suggest you begin immediately. That single step helps many ICers.

      Sending warm hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      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.
      [3MG]

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

      Comment


      • #4
        Eboudreau, I have been seeing a Urologist since September 2012. I keep going back to try new medications. I guess it's just trial and error for a while. I'll bring that medication up with my doc the next time I see them. Thanks!

        ICNDonna, I have not seen that info yet. I will definitely take a look. Also, I'm following a diet... I don't know if it's the IC one. I've cut down on gluten, eating mostly gluten free breads, ancient grains, and quinoa (although I've still had gluten here or there) and I've cut out all fruit juices. Cutting out the fruit juices has for sure helped because I've noticed it causes the urethral stinging. I'm not so sure the gluten has yet... I started with no gluten at all and it didn't seem to make a difference so I was less strict with it and it seems about the same. I'll take a look at the IC diet.

        Comment


        • #5
          The IC/PBS Food List was developed with input from literally thousands of IC patients over a period of years --- it's an excellent guide because it lists specific foods and is printable. Many ICers are okay with gluten. If you feel you might have gluten intolerance (celiac disease) there's a blood test that will diagnose it.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          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.
          [3MG]

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

          Comment


          • #6
            I'd like to respond as someone who I feel can address this problem from a couple of angles. First, I have been struggling with IC for 2 years now (I'm 25) and have only recently started feeling right back to normal. Second, I'm studying to get my PhD in clinical psychology for kids and teens with medical problems. I want to give some pieces of advice that I have learned from my personal experience with this journey.

            1) Don't ever let a doctor tell you you are out of options. You're young, and it likely just isn't true. Many doctors (I've seen 3 now who have said this) will tell you to try the diet, then try Elmiron, then try Elavil and if it doesn't work you're out of options. I've come to believe that given all the different symptoms, triggers, solutions, etc. that IC is not just one illness. Try different things and do what feels best for you. And don't be afraid to keep trying new doctors, as some of them surprise you in a good way Don't let months go by of being in pain because you don't feel like it will ever go away. Don't feel like you don't have it as bad as other people so you don't deserve to feel better. Keep at it, learn to self-advocate (even if it ****** people off). You WILL find something that works for you and it WILL feel better someday.

            2) Don't let them tell you its just depression/stress. As a grad student, all I ever hear about chronic pain is about how it is made worse by stress (of course!). I know all the tricks, tips, exercises, and the fact of the matter is that when you actually feel it, being in chronic pain sucks. PT for pelvic floor dysfunction was good for me in learning how to physically relax the muscles around my bladder when I became stressed and relax before intercourse (I had learned that sex made the pain worse, so my muscles immediately tightened on their own when it was likely). It is good to learn mental tricks to help you relax, but it does not make the pain all better. If a doctor tells you you don't have options except psychotherapy, find a new doctor (this is from a budding therapist). If you do want to see a psychotherapist, try to find one who is familiar with medical conditions (you can sometimes find these through academic medical centers). At the very least, find one who has knowledge of pain management (usually a PhD or a PsyD) who realizes that therapy won't make your pain go away, but who will help you figure out ways to live your life in spite of it while you're trying out new things with your medical doctors.

            3) It took me a long time to trust a doctor enough to go on Amitriptyline, but once I did, I felt so much better than I had in over a year. Of course try the IC diet and other less intense medications first, but I wish I had done it sooner.

            4) IF trying a strict IC diet doesn't work for you (like it never worked for me), there is no harm in trying a gluten free diet for a couple of weeks. I am not saying I think gluten is connected to IC pain in most people. However, I will say that after going on a gluten free diet (just since last Tuesday), all my gastrointestinal symptoms have gone away, all my headaches and severe fatigue have gone, and my bladder pain is DRASTICALLY reduced to the point where I've gone off of one of my overactive bladder medications and I'm still fine. Better than fine. Totally back to normal. It was/is miraculous. All I'm saying is try it. Whenever I had a flare I would adhere strictly to the IC diet, mostly eating the plainest pasta, toast, cereal I could find and I wouldn't feel any better. Well now I know why!

            5) IC demands a little bit extra from a romantic partner. Remember that you deserve someone who will accept when you are in pain and never pressure you or make you feel guilty if you just can't that night. Good communication is key, going slow helps, lubrication helps, more foreplay will help you relax and maybe even look forward to trying(especially a nice pre-massage). A good partner won't get annoyed that you're in pain, will tell you you're beautiful, and will try something else or take the hint to stop trying.

            Hope these thoughts helped, and remember to stay strong and don't give up trying to find something that works for you!

            Comment


            • #7
              I was just diagnosed with Ic this week at the age of 18. Mine was rapid onset, where it just felt like I had a UTI one day and after going to 4 doctors and having an unnecessary kidney stone surgery they finally decided I had IC. My symptoms are almost identical to your's, and while I feel I have a mild case, I also feel like I'm completely alone in this.

              My family and boyfriend try to be patient but when I'm in pain I feel snappish and nothing seems to alleviate the pain but sitting in a bath for a while or sleeping. I feel especially awful for my boyfriend (of 9 months, we were together for 4 when IC set in) due to my flares being triggered by sex. He often blames himself when I'm in pain and I feel completely guilty about it because nothing I can say will make him feel better.

              I don't really know what to do. I'm afraid to go back to college and have stress flares and miss class and have it be an endless cycle. It's difficult for me to hold down a job because when I randomly start to have pain it's completely debilitating. This disease has completely taken over my life. I'm currently on elmiron and try to watch what I eat. Is there any helpful tips that make managing this easier as it goes on? I feel very depressed because I'm so young, I can't imagine having this for the rest of my life.

              Comment

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