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  • Deeply Depressed

    It has been are really hard couple of months...I am just so damn tired all the time...I am in major pain all the time, it really just sucks......I am not dealing well with it. I have an IC dr. but he has the bedside manner of an ass. I dont like going to see him...He wants me to have the interstim worked on, different settings and such even though I told him I wanted it removed. I have had the interstim in since 2007, the first one didnt work either, but instead of removing it he replaced it and swears it will be better, nope. I just want it removed completely it has not helped me at all and I want it removed. He also wants to me do the DMSO treatments but they are quite expensive and I am not interested in doing those. And because I have refused them he wont see me because I am refusing the standard of care and there is nothing he can do for me.
    There is not a pain clinic in the state that will take on an IC patient with Fibromyalgia. they say there is nothing they can do for me. So what the heck am I supposed to do. I have PCP that is willing to help me with pain meds but he is at the max he is comfortable giving me. I am really scared to ask for anything else that might help with the IC and the FM. It just feels like I am never going to feel pain free and that I am never going to give me a dang break.
    Last edited by ICNDonna; 02-14-2011, 01:38 AM.
    Started Vaginal Valium Suppositories April 2014
    Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
    Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
    Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
    Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
    Interstim repair December 2008,Removal of the Interstim August 2011,
    6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
    Diagnosed with Raynaud's Syndrome November 2013
    Ambien 5mg for sleep.
    Elivil 50 mg at bed
    Lisinopril 20mg in AM
    Effexor 225 mg
    Oxycodone 10 mgs 2 x a day for pain
    Baclofen 20mg 3x a day
    Phenazopyridine 200 mg as needed
    Omeprazole 20 mg at night
    Lyrica 450 mg daily
    Requip .50 mg at night
    Ketorolac 10 mg as needed for migraines

  • #2
    I am so sorry to hear that you are feeling so depressed! This disease is so devastating in so many ways. I started out in 1995 with a Uro who refused to even test me for IC. He thought that the disease did not exist. My best suggestion for you at this time is to try to find a Dr. who you can feel better about. It took me a long time to find a Uro who I feel good about. He honors my input and that means so much to me. Also, try to reach out to someone to help you with your feelings. Maybe a Dr., therapist or close friend. I know that it is so hard to even make an effort to seek help when you are feeling so down. You made the right choice by trying to reach out to others here at this website. So maybe you can find someone close to home to share your feelings with. You are welcome to PM me if you want. I have been depressed at times by this IC and my circumstances. Please know that I am sendng you lots of warm wishes to help you find yourself in a better frame of mind and less pain soon! Mare

    Comment


    • #3
      Kris,

      I am so sorry to hear of your problems with the InterStim , I have had my since 1999, and have had a great success with this device ..
      I really think you should look for another doctor for a second opinion on your InterStim .
      Did you shut off the InterStim now ?

      I know IC sucks big time , just know there are others dealing with the same pain you are !
      You need to talk to someone please go to your family doctor and tell them even if this doctor will not see you , maybe they can get you another doctor to talk to and get you that needed meds for your pain ...

      I hope you post back and they are lots of support here for you !

      Take care Kris !

      Debbie
      Thinking positive has got me through to another day!!

      Comment


      • #4
        I'm really sorry you're finding yourself in such a difficult place. I have to agree with Mare and Debbie that it sounds like time to at least get an opinion from another doctor. Your primary care doctor should be able to help in that area.

        You might also want to give some thought to at least trying instillations --- some ICers find they really help. There are also many different treatment options out there that you should be able to try.

        I also suggest that you see a counselor to help you deal with your situation.

        Sending gentle hugs your way,
        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.

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        Sub-types https://www.ic-network.com/five-pote...markably-well/

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        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


        • #5
          I hope things get better for you real soon.

          Keep the Faith
          Rebekah - Diagnosed with IC and Hunner's Ulcers in March 2009

          Two Hunner's Ulcers were removed by laser surgery surgery Jan 15 , 2010

          Proud Mother of Jeremy Jr. Born on Wed May 4, 2011

          "For every door that is closed a new one is opened"

          The Lord's Prayer

          Our Father, who art in heaven,
          Hallowed be thy Name.
          Thy kingdom come.
          Thy will be done,
          On earth as it is in heaven.
          Give us this day our daily bread.
          And forgive us our trespasses,
          As we forgive those who trespass against us.
          And lead us not into temptation,
          But deliver us from evil.
          [For thine is the kingdom,
          and the power, and the glory,
          for ever and ever.]
          Amen.

          Comment


          • #6
            DMSO tratment work well with me, I hope you find a treatment that will help you real soon.
            <center>
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            • #7
              Sorry you are feeling so bad.. I have been getting Dmso treatment.. so far no problems..although it is hard for me to hold the med in for 20 mins.. I kept refusing it for 7 years because I was scared of it but finally decided to try it.. I think I should have done it years ago!.. I have had 2 done and 4 more to go..I was surprised that it was no where near as bad as I thought it would be..I am also trying the patch.. no side affects with that but not sure it is doing much..

              Under a lot of stress right not here. too much snow and roof is leaking.. it has ruined stuff .. very frustrating. flat roof basically! grrrr..
              God brought me to it, He will bring me through it!!!

              Diagnosed 2003
              by cysto/hydro
              Elmiron took almost a year- made me sick, caused diarrhea
              Pyridium -Made me sick
              Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
              Tried DMSO instill- had 5 out of 6
              Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
              Cysto/hydro April 6th 2011-- on expansion only hold one cup
              IBS/ IC
              High blood pressure meds and Crestor
              Metformin (prediabetic)
              Sinequan (depression)

              Comment


              • #8
                Hi Kirs,

                I know Maine is a big state, but have you thought of going down to Boston to one of the specialists there? We have a lot of patients from that area. Maybe if you post in the Maine, NH, or Mass forums someone can give you a recommendation.

                Sending you understanding hugs!
                Julie Beyer, MA, RDN
                IC Dietitian, Patient Advocate, Speaker, & Author


                Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                ........ ........


                Other IC Diet Resources:

                IC Diet Webinar
                IC Diet Website
                For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                Free IC Diet Booklet: What Can I Eat?
                Confident Choices IC Diet Blog
                IC Diet Newsletter


                *Let's Connect!*

                Comment


                • #9
                  I hope you find a new doctor soon. I really think it makes a big difference to have someone who is kind and willing to work with you.
                  DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

                  Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

                  My Pelvic Pain Blog

                  FB Fanpage for My Pelvic Pain Blog

                  Comment


                  • #10
                    i can relate about the feeling tired/pain all of the time. it never seems to ease up for me.my suggestion to you would be find a new dr. even if you have to drive a bit it will be worth it.
                    Newly IC diagnosed as of February 2011.

                    Medications I'm on that seem to work:
                    Zoloft- one once a day
                    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                    Failed Meds:
                    Elmiron-after 4 months,digestive side effects got to be too much
                    tramadol-allergic
                    DMSO treatments(5-6)
                    probiotics

                    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                    AROMATHERAPY-candles,incense
                    Village Naturals Aches and Pains Peppermint Bath Salts
                    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                    ACUPUNCTURE/HERBS
                    Significant pain relief so far.

                    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                    Add me on facebook Angela Hasic

                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    Lord, make me an instrument of your peace;
                    where there is hatred, let me sow love;
                    when there is injury, pardon;
                    where there is doubt, faith;
                    where there is despair, hope;
                    where there is darkness, light;
                    and where there is sadness, joy.
                    Grant that I may not so much seek
                    to be consoled as to console;
                    to be understood, as to understand,
                    to be loved as to love;
                    for it is in giving that we receive,
                    it is in pardoning that we are pardoned,
                    and it is in dying [to ourselves] that we are born to eternal life.

                    Comment


                    • #11
                      I have gone to Boston and seen Dr. Church. He told us that I do have it and that I was doing the reasonable things to help it. So he said that there wasnt much he would do different so he suggested staying with the dr. I already had.
                      Started Vaginal Valium Suppositories April 2014
                      Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
                      Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
                      Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
                      Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
                      Interstim repair December 2008,Removal of the Interstim August 2011,
                      6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
                      Diagnosed with Raynaud's Syndrome November 2013
                      Ambien 5mg for sleep.
                      Elivil 50 mg at bed
                      Lisinopril 20mg in AM
                      Effexor 225 mg
                      Oxycodone 10 mgs 2 x a day for pain
                      Baclofen 20mg 3x a day
                      Phenazopyridine 200 mg as needed
                      Omeprazole 20 mg at night
                      Lyrica 450 mg daily
                      Requip .50 mg at night
                      Ketorolac 10 mg as needed for migraines

                      Comment


                      • #12
                        Thanks

                        Thanks for all the wonderful words from you all. I have really tried and seen all the IC Dr.s in the State and the one I saw in Boston wouldnt be my doctor because I was so far away, and he would do the same things the one in Maine was doing.
                        So I guess I just feel stuck between a rock and a hard place. I dont know what to do. I am going to go see my therapist, because I need someone to talk too, someone suggested I talk to someone like a friend, my best friend past away in June unexpectedly, so I have no one to talk too. So I am going to call my therapist because I really need help.
                        Thank you all again I really appreciate all the kind words.
                        Kirs10
                        Started Vaginal Valium Suppositories April 2014
                        Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
                        Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
                        Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
                        Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
                        Interstim repair December 2008,Removal of the Interstim August 2011,
                        6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
                        Diagnosed with Raynaud's Syndrome November 2013
                        Ambien 5mg for sleep.
                        Elivil 50 mg at bed
                        Lisinopril 20mg in AM
                        Effexor 225 mg
                        Oxycodone 10 mgs 2 x a day for pain
                        Baclofen 20mg 3x a day
                        Phenazopyridine 200 mg as needed
                        Omeprazole 20 mg at night
                        Lyrica 450 mg daily
                        Requip .50 mg at night
                        Ketorolac 10 mg as needed for migraines

                        Comment


                        • #13
                          :::hugs:::: Sometimes just having someone to listen, with a fresh perspective, is exactly what helps the most. Sending you healing wishes and I'm very proud of you for asking for help and calling your therapist!!! Good for you girl. More of us need to do that during the difficult times.
                          Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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                          Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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