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  • IM really getting depressed

    I appreciate all the helpful advise--I have been dismissed by uro docs cause they dont have any answers. I am not sure what to do. the burning--uro docs dont want to believe me that its really burning. The cysto I had apparently was a waste of time and money--according to all I have read here--Im just at a point that I just dont know what to do--i have heard about almond milk, aloe pills, prelief, urocit-k, take potassium tests--the doctor doesnt want to hear about it. I am willing to try just about anything--I take a lot of meds and have to be careful. what the heck am I going to do??? cussing

  • #2
    Hon I wish i had a magic wand to take away everyones pain. all i know to do is trun it over to the lord for him to show you the right path to take trust in your heart.
    I will pray for you to have a better today and tomorrow sending you lots of hugs.
    grouphug grouphug grouphug grouphug Rhonda
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

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    • #3
      I hope everything works out for you ! Hope your feeling better soon ! grouphug
      kELLY
      To the world you might be one person but to one person you might be the world..
      I am a newbie Angel ~IC Angel 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.

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      • #4
        Have you considered going to a different uro for a second opinion? I think that might be a good idea.

        Sending 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

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        • #5
          Hi, I feel for you, and I agree with Donna's post, I think I would find another uro and see what he says. I know I changed mine, because I was not satisfied with my treatment, and am extremely pleased with my urologist now. I also have a Nurse Practitioner, who is my main health care provider, and she is wonderful with my IC needs as well. Hope that you can find the right meds to help you out. Keep us posted as tohow you are doing, hugs Iris. hi grouphug
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

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          • #6
            I'm sorry to hear you are depressed... I hope the burning calms down for you.

            I agree with Donna and Iris... perhaps it is time for a second opinion. It seems to be a recurring theme that many of us go through several doctors before finding one that works for us. I switched my urologist like Iris did, because I was just not satisfied with the first one. She wasn't mean to me or anything, and she was trying some, but it seemed to me that she wasn't going fast enough (cancelled a LOT of appointments with me), she was doing tests that would not be informative, and she wasn't taking my need to be comfortable and out of pain that seriously. So I found a new doc!

            And believe me, I am sure your burning is NOT in your head... have faith that you will find the cause, and find a treatment that works. It may be a long road, but you will get to the end of it!!

            grouphug grouphug kissing

            Sending encouragement,
            Jen
            ****
            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
              Dear Cath,

              I'm sending warm hugs out to you. I know just how you feel because I've been where you are. You feel horrible and look to the dr. for help and when he doesn't give any the pain and depression increases and I felt hopeless.

              Two things that helped me the most was to put cold water in a squirt bottle and squirt it when urinating to aleviate some of the burning. Also my pt for pfd said to put ice right around my vaginal area when laying down. You can use ice packs or freeze plastic gloves. That way when urinating that area is frozen so it doesn't burn.

              It was also extremely helpful to reach out for help. I contacted the local ic representative and she was full of info, help w/ info on other dr.s in the area, knowledgable about meds. She truly helped give me the boost and strength I needed to locate another dr. She also talked me through rough times and said help was out there and I didn't need to suffer.

              I hope this is helpful, feel free to pm me anytime. Remember you're not alone, help is available. Take good care of yourself and keep us posted.

              Hugs grouphug grouphug grouphug

              Comment


              • #8
                I'm so sorry about what you are going through, But I thought I send you this and i hope it helps.

                Hi, My name is Angela, I`m 30 creole from Arkansas, I`m a happily married god fearing woman and I have no kids, But I do have 2 nephews I help take care of, My brother have custudy of them and I love them to death,I would not know what to do without them. Ummmm, More about me. I love life and nature very much, I`m pretty shy and kinda quiet, I`m easy to get along with, I love gospel & contemporary christian music, I love going to church, But I have not been in a while because of my health problem, But I do study the bible, I also watch church on tv which is tbn,vtn and daystar and have bible study with friends online at paltalk voice chat, I love hearing the word of god, It brings me so much peace, I`m getting aliitle better slowly but surely, I`m going back to church - I miss going, Well, I have a bladder disease called Interstitial Cystitis it`s a bladder and pelvic pain disorder effecting men, women and children throughout the world. Patients are often misdiagnosed with UTI, I have been suffering with it since oct 2003 but at that time I did not know what was wrong with me until feb of this yr, My old urologist treated me for a bladder infection and it didn`t help, So I went back to his office so he put me on some kind of medicine for over active bladder which I did not have, Everthing gotten worse a few months later - I was in so much pain it felt as if it was a drill running inside me - it would last for weeks so I end up going to ER, Anway I got rid of the old urologist he didn`t seem to care to find out what was causing me so much pain, He told me sorry I`m running out of tricks for you so then I started to cry and then he left, I just wanted to end my life, Satan would attack me telling me I got you now - you are cursed and your not going to get well I could hear his voice loud as ever - it was like a roar and I felt so much weight on me, I would cry and cry and then a few months later I started getting more into the bible and talking to christians and all that weight lifted off me and I felt so at peace, Anyway, I found another urologist he`s very sweet and understanding, He did more testing and found out what was wrong with me, I felt better after finding out what was wrong with me and he giving me some treatments that help alittle, Anyway, About the disease there is is no known cause and there is not yet a cure, But I`m not worried, I give it all to god, Doctors can`t heal me, but I do know that god is my healer and he never fails, Satan does try to attack me and I just start singing, read my bible or I tell satan I rebuke you, I wont let him steal my joy, Satan is a lyer, He`s the father of all lies, So I`m keeping up the faith and I will remain strong, I joined a support group online and it`s good to know that I`m not the only one going through it. The testimonies on the website can be so comforting, People always say to me I can`t see how you can go through all that and it would drive them crazy and they tell me I`am very strong, I just learned to cope with it - why worry about it - it wont make it go away - I don`t think nothing els about it because I know god will handle it, If you don`t trust in god you are calling him a lyer, Anyway, People been praying for me and the pain has Lessioned, I believe god is still working with me and he`s not finished yet, My mom always said we never know whats going happen to us and thats the truth. Anyway, My mom have been through so much, She was so sick with cancer the doctors was not looking for her to live, But I knew she was going to make it because of her faith and She is now cancer free and the doctors were so shocked, miracles happen every day, god is good, I remember when I was a child my grandma would play and sing gospel songs in the house all the time we both would feel the holy ghost and It`s such a wonderful feeling. All I do is pray and I know that god will make me whole, He may not do it right away, But he will do it in his own time, Well, There is hope, When you get depressed just read your bible and don't let satan get you down don't let him win, Gotta go, Take care and may god bless!!!!! My writting is so bad but I do try my best.
                Angela aka sleepyangel30

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                • #9
                  hi.. i see that you are in new york.. i am in new jersey, and i have a wonderful uro-gynocologist (he specialized in both,... what a wonderful thing)... but he is in south jersey (near philly).. if you are willing to travel he would be great.. his name is doctor Timothy McKinney of Athena Women's medical group.. here is the website for his office.. he is the best doctor i think around and the only uro-gynocologist around.. http://www.athenawmg.net/timothy_mckinney.html

                  i hope this may help... and i will keep you in my thoughts and hope will fell better soon..


                  ~Rachel
                  Courage is doing what you're afraid to do. There can be no courage unless you're scared.
                  Eddie Rickenbacker

                  The best way to predict the future is to invent it.
                  Alan Kay

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                  • #10
                    I am so sorry to hear about your depression and doctor. I am actually in Rochester New York and I go to Dr. Robert Mayer at Strong his number is 585-275-0133 if you want to call him. He is also on the site as well.
                    I just had clorpactin and it did not seem to work I think. My pain feels like to have to go more than ever to the bathroom and I know that I do not have to, thw scary thing is that it feels like I can not hold it.
                    If you ever need to talk just e-mail me [email protected]. I can even meer you at strong if you need someone to go with.
                    My Prayers are with you.
                    Keep my posted.
                    Life is a challenge-take one small baby step at a time & you will get there.

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                    • #11
                      I agree...prayer...give it to the Lord and get a second opinion from a different uro. All we can do is keep trying the things we hear about hoping for something to work......the path is hard...I know


                      BIG HUGS,
                      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!

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