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  • Potentially Diagnosed with Questions!!!???

    Hi! I just saw a Urologist yesterday for the first time. I had a UTI in Oct 2003 (1st ever), and have had nothing but problems and pain since then. My Primary care's office kept putting me on 3 day antibiotic treatments even though 3 of the 4 UTI's really had no bacteria. The Urologist went over my symptoms, asked lots of questions and says that she is leaning towards IC. She has given me a 30 day antibiotic, and a food list of what not to eat to see if there is any relief. The pain I have seems to have gotten worse over the last 2 weeks or so, and my biggest question is, if I have IC, once symptoms start coming on do they tend to get worse, like, could I be in a lot more pain another 2 weeks from now? Sorry if this is kind of a weird question, I am just trying to prepare myself I guess. Thanks a lot for taking time to read this, it's great that there is a forum like this out there.

  • #2
    Don't despair

    Dear Meredith welcome to the site, there is alot of information and support for you if they do find you have I.C.. You sound a little scarred right now and any normal person would be. I remember feeling a little overwhelmed myself when I was first diagnosed 4 years ago but that can change and you probably will feel differentially as time goes on. There may be a support group near where you can share your story and conserns. This web site is very helpful if you do find out you have I.C.. I am still hopeful for you that you may not have this so don't lose hope yourself and remember there are others that can support and help you.

    Comment


    • #3
      Welcome

      Meredith,
      Welcome to the boards. There is a ton of love, empathy, and open arms to provide you with a shoulder to cry on when things seem hopeless and to celebrate with joy when things are better. I had multiple "UTI's" after about with kidney stones and spent a year feeling like a nut case until I got diagnosed. Please PM me or e-mail me if you want to vent, talk, or need a friend. Good luck as your journey begins.

      Hugs,
      Barb
      (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

      [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
      :angel: IC Angel Volunteer Coordinator :angel:
      :) Contact me via PM or e-mail if you would like to help
      I have learned all about life in 3 words: It goes on! :D--Robert Frost
      PCOS 7/85
      RSD 7/94 :headbang:
      Endometriosis 9/98 :toilet:
      Antiphospholipid antibody syndrome 9/99
      Kidney stones--too many to count
      Factor V Leiden mutation 10/02
      IC 6/03 :evilsmile
      Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
      "Spirit is an invisible force made visible in all of life"--Maya Angelou
      "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

      Comment


      • #4
        My IC developed very slowly....for those that it comes on fast you may get worse for a while ...depending on how well you respond to treatment and if you find treatment that works for you.


        Welcome to the family.
        http://www.ic-network.com/handbook/ this link is very informative and a great place to start with IC. I hope you feel better soon.
        Faith, Hope, and Love,
        Katrina


        I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

        IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        or find me on facebook http://www.facebook.com/kat671?ref=profile
        Be the Miracle! & Pay it Forward!

        [email protected] please contact me...I am here to help!

        Comment


        • #5
          Hi, Meredith, and welcome. I can really only speak for myself - but my symptoms hit me suddenly - one day I was fine, the next - miserable. BUT, they never got worse than they were initially. And now a few years later and on the right meds for me, I feel great most of the time.

          Sounds like you have a good uro!
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

          Comment


          • #6
            to the boards!! So glad that you found us

            My IC waxes and wanes... sometimes I feel almost normal, and other times I'm in pain and peeing all the time. I think this is normal, and that with the right treatments most of us feel pretty good most of the time.

            If your uro is willing to work with you, then that's a great start!
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.

            Comment


            • #7
              Another Newbie

              Meredith,

              Glad you found this site. I was just diagnosed the end of May after 3 weeks of intense pain and numerous ER & Dr's office visits. My pain was increasing worse during that time. I've been on Elmiron since then, but the Uro. I was going to is not very "versed" in IC, so he said he was glad we finally diagnosed it and to come back to see him in 6 months. I couldn't believe my ears. Anyway, each case seems to be different...all we can do is share and hope to learn from each other. I did a lot of research and found out that one of the top IC specialists in the US is near me in Greensboro, NC. He is on the board of the IC Assn. and people come from all over the US to see him. Anyway, he is wonderful! He listened and actually heard what I was saying. He added several prescriptions to my treatment and set me up for instillations 2x a week for 6 weeks. This week will be my 4th week. I was able to return to work for a couple of weeks with a pain level of about a 5 (on a 1 to 10 scale), but my pain has returned to a 10, and maybe sometimes a 12. I am back out on disability. I have the same questions you do about whether this will subside for me and what I can expect, but like I said, it seems each case is different. My hubby and step-son went to a church reunion today, which I was unable to go to. He met a lady there that had a 2 yr. flare where she was in a good deal of pain and could barely function, but has been pain=free for about 2 yrs now. I think if we can just post and email others and know that we are not alone, that will help tremendously. It's tough when we don't know exactly what we are facing. Please feel free to pm or email me at any time.

              Prayers and warm thoughts for a better week for you.



              DIANE

              Comment


              • #8
                I think it is hard to say what will happen because we all react differently to IC. I hope that you find a treatment that will help soon. Try not to stress that usually will always make my symptoms worsde. I would watch what you eat, and try taking some prelief which may help you as well. There are lots of different things that help us and you can always try and se if it is something that will work for you. There is a list of self help remedies that Katrina helped compile together. Maybe try some things off of there? I hope you will be feeling better soon. Take care - Chris
                This verse has given me comfort. I wanted to share it with you all.
                Isaiah 40:31- But those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not be faint.

                Comment


                • #9
                  Sharon

                  Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                  Where I can be found most days.



                  Link to the ICN Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Link to the IC Diet:
                  http://www.ic-network.com/diet/


                  IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                  Comment


                  • #10
                    Hi in knew here.. Had uti syptoms in Aug gave me 3days antibiotics no urine test at tha time...eased off but pain changed from uncomfortable when I was peein.. An once bladder emptyed it was OK.. Was goin on hols so rang nurse an explained.. She asked me to go take urine sample an she would give me more antibiotics, which I did.. Rang docs while I was on hols but no infection.. Now to cut long storey short I'm still aving bladder pain.. But scared to go docs as I have a cancer phobia.. I do stress a lot.. It comes an goes now.. But more when my bladder fills up.. An eases off wen I pee.. Please anybody else like this

                    Comment


                    • #11
                      Originally posted by Melaniebennett View Post
                      Hi in knew here.. Had uti syptoms in Aug gave me 3days antibiotics no urine test at tha time...eased off but pain changed from uncomfortable when I was peein.. An once bladder emptyed it was OK.. Was goin on hols so rang nurse an explained.. She asked me to go take urine sample an she would give me more antibiotics, which I did.. Rang docs while I was on hols but no infection.. Now to cut long storey short I'm still aving bladder pain.. But scared to go docs as I have a cancer phobia.. I do stress a lot.. It comes an goes now.. But more when my bladder fills up.. An eases off wen I pee.. Please anybody else like this
                      to the IC Network.

                      I encourage you to see your doctor so you can learn what is causing your pain. In the meantime, I suggest you give the IC diet a try to see if that helps. At any rate, I think it's important to have a diagnosis. I have a cancer diagnosis, NOT RELATED TO MY BLADDER, diagnosed NINE YEARS AGO. There are many, many new effective cancer treatments and the earlier it's caught, the better.

                      Yes, many IC patients find the pan relieved when it's emptied. How frequently do you urinate? About how much each time? I suggest you keep a voiding record to take with you to your medical appointment.

                      Sending warm healing wishes,


                      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


                      • #12
                        Yeh I need to go back.. Ive always peed a lot when it first came on I was peeing lots pressure on bladder and like uti when peed. That arrrhhh moment.. But nothing tha bad now..

                        Comment


                        • #13
                          I'm glad you're feeling better --- but please do follow up with your doctor.

                          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

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