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  • Scared and sad

    Hi everyone.

    First of all, let me say thank you to all of you who spend selfless time supporting people that you have never even met. It is very comforting to know that there are people who have learned to live with IC and take time out of their days to assist with all of our questions.

    I work at at a doctor's office and out of the blue last week started feeling like there was pressure on my bladder causing frequency. I didn't have any real pain to speak of or burning. I've had a about 4 UTIs in my life (I'm 32) and could not attribute this feeling to anything else, so just assumed I had a UTI. Well, my office called in some Macrobid and after 7 days of treatment, the symptoms are exactly the same.

    I went to a uro the other day for my concern and they did a post void residual that showed up to be 180cc and I left with a bag of catheters with instructions to self cath after voiding each time...yay. Well, I did this a few times and only got a few drops. So, I went back to the uro today and did another PVR and 40cc left, so I am so confused. The doctor put me on Flomax for urinary retention but it seems I'm not really retaining after all. But, my bladder seems to fill up rather quickly and is very uncomfortable. No pain, but just really frequent trips to the bathroom and passing less urine than I am accustomed to. A few weeks ago, I probably went to the bathroom 5 or 6 times per day. Now I am going closer to 8 and I know this is not a huge difference but I always feel like I need to go, whereas before I didn't really sense the need to go until I REALLY NEEDED TO GO volume wise. For example, a little earlier, I had the sensation that I really needed to go and I only voided 100cc and my bladder felt full.

    My uro told me that my symptoms don't indicate IC, but I am still very nervous b/c I can't quite figure out what is going on with me. I am walking around feeling like I have to pee all the time which is seriously hampering my lifestyle. I am typically an active working mother of two, but since this has been happening I have been feeling more and more withdrawn as I have been so focused on my full bladder all the time. It makes me hesitant to go out and do things because I feel like I've always got to go.

    I realize there are much worse things that one could have to deal with in life and I should feel fortunate to have something minimal, but I think the fact that it happened so suddenly and I have no answers for my condition, make it really frightening. I am prone to anxiety and depression and feel that this is tipping me in that direction.

    Again, thanks for listening and any responses would be greatly appreciated.

  • #2
    It is weird

    Yes it is weird I guess when you suddenly become more aware of your bladder. It is distracting. I have more pain than frequency, however, it is very uncomfortable and it is hard to ignore. So I think your feelings are normal.
    As to anxiety, I'm sure it will affect your level of anxiety. However, I do think the hardest part is when you aren't sure what is wrong with you. I think your stress will be reduced when you figure it all out. In time you will also learn how to manage it.
    It is hard to face having something wrong with you. I just figure that most people do end up having something wrong with them--so in a way it's inevitable. You seem like a person who will be able to handle it all in time. It's funny (or not really), that most of the battle is our own attitude and disposition towards things. I think we will all have ups and downs, so don't get discouraged.
    I'm sure once you find out what is wrong for sure, you will feel like "okay I've got to take care of myself and conquer this as best as I can." It does take a lot of patience to go through all of this. Give yourself time.

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    • #3
      What you have might be IC, but not necessarily so. One thing you could try is the IC diet. It won't hurt you and just might help with bladder symptoms. You'll find the latest food list at the link in my signature below.

      Sending warm healing thoughts,
      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
        Thank you

        Thanks to both of you for your warm and reassuring responses. I believe you are right in that most of my anxiety is coming from the not knowing and the what if factor. My bladder used to be an organ that just did it's job with little notice from me until time to go, but now it seems I feel every little twinge in there...it's weird and happened seemingly overnight.

        ICN Donna- thank you. I have looked at the diet and have reluctantly cut out coffee and citrus. This is very hard as I am a die hard on cup per day coffee person but since I've had these symptoms, I quit cold turkey. As to peanuts, I've read conflicting things. Is peanut butter considered safe for most bladders or should I stay away from that too?

        Again, thank you for your responses.

        Comment


        • #5
          Hi, bmama78 ~ Wow, there are so many of us who truly identify with your feelings. For a while all I thought of and spoke of seemed to be bladder, bladder, bladder. That's so good that you're already trying the IC Diet. I really believe it can help keep those irritating substances out of your bladder. You may also want to try Prelief....an OTC med to help with removing acid from the foods you eat if that is an irritant. I've found the best price at Costco and they order if for me.

          Has your doctor thought about OAB? It might be something you can help along with one of the meds they offer for our crazy muscles there.

          Regardless, we all identify with the fears of uncertainty of what this is and why it's happening. You sure seem like things will fall into place for you. Prayers that you can get on with your life with those precious children! You came to the right place for support!
          Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

          11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
          8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
          8/2010 Surg gallbladder
          TREATMENTS (updated 4/15)
          IC Diet since 8/2009 (Able to vary 4/15)
          Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
          Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
          Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
          *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
          Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
          PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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          • #6
            nocturia?

            Do most of you have to get up at night once or more to pee? I don't have that issue. I can sleep from 10 pm til 6:30 am and not have to go, but need to go badly when I do get up. However, I do need to pee every hour or two while awake. Anyone have similar symptoms? These are all new to me. I used to be an every 3-4 hour girl and it changed LITERALLY overnight.

            Thanks.

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            • #7
              I was just the opposite. Daytime was not bad at all but after lying down for a few hours at night the frequency would start. Even though I am in some type of remission right now I still get up at night a couple times. Not sure which is worse - interrupted sleep or interrupted daytime activities. I guess they're both a pain in the you know what.

              Comment


              • #8
                earthlady

                hi my name is kiersten and am new to this site and IC, I agree with you during the day my frequency is manageable but at night forget it. I hate it. I go before bed then if I dont fall asleep right away I get up again, then off and on through out night. some nights are better than others. If it is near my time of month I will get go up to ten times...ugh so frusterating
                Kierd

                Comment


                • #9
                  Hi...my name is Holly and I am new to this site as well. I also can sleep all night, and I do not have frequency issues. (But I drink 50-60 ounces of water a day, and have for a long time, so I tend to go more than others anyway!) My only problem is the constant burning pain. I have tried the IC diet, but everything I try gives me more pain. Right now the only thing that seems to help is lettuce and brown rice. I have lost 12 pounds (that I did NOT have to lose as I am pretty thin to begin with) and have not been a coffee or soda drinker, and rarely ate anything on the caution list before my problems began. Right now I am finding that hunger is my biggest issue besides the pain! I am also trying the candida diet, as I have had issues with recurrent yeast infections for many years. I have an appointment with a urogynecologist in 3 weeks, but the last urologist I saw gave me Prosed DS to help calm the bladder down. Any suggestions?

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