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I hate IC!!

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  • I hate IC!!

    I hate the control IC has on my life. Everytime I get hope that I will be able to rejoin the world and get out of this house and be with people I have another flare up. And the worse thing is nothing seems to help. My whole life has been filled with pain (very abusive childhood, severe arthritis for over 15 years now, IC for over 6 years) I am 51 and live like an 80 year old. I am so depressed and hopeless right now. The world is so filled with pain, people hurting people as well as all the physical pain. Somedays it does not seem worth going on. I have taken 3 dcses of pain meds so far today and I still hurt too much to rest. I would scream if it would help.

    Thanks for listening

  • #2
    All I can say is 'hang in there' and hopefully this low period in your life will soon be replaced with nothing but positivity.

    take care
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.


    • #3
      ((((((((((hugs)))))))))))) I am so sorry you are having a rough time right now. I wish your flare would go away. sending you big hugs.
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4

        Im flaring again too. I had two good days and now today i can barely walk.

        the meds dont seem to be helping me either.

        but like i always tell myself this too shall pass.

        hang in there.

        Lyme disease diagnosed 11/05
        vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
        IC diagnosed with hydro/cysto- may 17, 2006

        Over growth of lactobicilli found 8/07 treating with doxy.

        Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

        8/22/07- was able to get my first speculum exam, with pap

        Strep D found in bladder with United medical labs May 2006
        2 strains of strep in stool culture 9/06
        high Strep ASO titre found 10/06

        NEW MED

        Capsasin cream-once a day for 20min,
        BUt wont lie it does burn

        About to start valium supositories for PFD

        Trigger point injections- oct 07

        Current meds:
        Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
        Zanaflex 2mg
        IC and low oxalate diet, no sugar diet
        Xanax for appointments to help relax me since they cause so much pain

        Started PT 3/07, PT has really helped me in ways I never knew that it would

        Meds ive tried
        Soma- can barely tolerate half a pill
        Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
        Estradiol cream
        Urelle- caused worse bladder spasm and retention

        Various antibiotics for lyme which caused yeast and made the IC and VV worse

        waiting for the next chronic illness to pop up

        "Did you know?
        Every 15 seconds,
        a person is
        diagnosed with
        interstitial cystitis."
        Source: J. Dimitrakov, MD


        • #5

          I can completely empathise with your depressed view of life right now and I hope you can get some glimmer of hope here and there to keep you hanging on for that one pain free day (and many many more).

          May I ask what type of pain meds you are using for IC and how do you keep control of your arthritis pain? Do you use any anti inflamatories for the arthritis? They can cause your bladder to flare sometimes.

          One more question, I always wonder who has full time jobs, do you and if not do you get out with friends? I know I will invite friends over to my house to lift my spirits. That why i don't have to go out and I can get a few laughs for the day with them.

          Take Care


          • #6
            Your frustration and anger are perfectly understandable. I think we all have moments, especially in a flare, when we just get angry at everything we have to go through just to live a semi-normal life.
            Keep your chin up and try to relax and do whatever you can to feel a bit better...escape in a good book or a silly movie. I know it's not a permanent solution, but hopefully it could be enough just to get you through your tough time.
            Good luck and if your frustration continues, it might not be a bad idea to speak with your doctor or try to find a therapist in your area that maybe specializes in handling a chronic disease. There is no shame in asking for help, especially with all you are going through.


            "A heart is not judged by how much you love; but by how much you are loved by others."
            ~ The Wizard of Oz

            "If I ever go looking for my heart's desire again, I won't look any further than my own
            back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


            • #7
              I was also going to suggest talking to a professional therapist. There are therapists around that specialize in helping people deal with chronic pain, and their techniques are very helpful. I've seen one before and it is just nice to have that hour a week to vent, regardless

              I hope your flare eases up soon!

              *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.


              • #8
                Sorry you are hurting.....sending you a big hug
                Miss Bessie

                Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life


                • #9
                  I totally sympathize and empathize! Just last weekend I was at my worst and could not get on top of the pain. I finally got a prescrip for anti anxiety medicine because I couldn't relax enough to let the pain meds work. I know you feel so awful but how about calling your dr for something to ease your mood? I met with a psychologist this week and that helped too. I was able to just cry and be sad and she totally validated my situation and provided comforting suggestions. She said the energy we use to fight the pain is so draining. Find what gives you some comfort and use it! Heating pad, ice pack, comfort food, good friend, whatever! Try to get some sleep - that is so important! Hang in there!


                  • #10
                    Hang in there....

                    I think we've all been in 'the valley of despair' too many times to count, but somehow, a brighter day appears and we remember how wonderful life is despite this terrible disease. I was in a pain pit yesterday and a depression pit the day, I'm better. Like the others recommended, a therapist is a great idea. Other than the wonderful people on this site, there aren't very many people to talk with, or if you have, you get the feeling they don't want to hear it matter how understanding and supportive they are. My hubby went to the I.C. support group with me on Wed. and didn't say a word afterwards. I wasn't expecting him to speak volumes, but, nada...not a word. I just tried to let it go and think that maybe he's trying to absorb it all. He's also been extremely busy with work and is very tired of traveling all the time. Again, that pit you are feeling you're stuck in is a common reaction to trying to deal with this disease and all the problems it brings to our everyday lives, but it does get better. One thing I try to do is focus more on my family. I watch old home movies (although some memories are painful - family problems as a kid), and believe it or not, they actually 'lift me up' for a while. Yes, I cry, but I also laugh alot!

                    I'll be praying for you,


                    -Bladder surgery to correct reflux-'68
                    -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                    -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                    -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                    -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                    PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                    -DX'd with IBS in 2000
                    -Rhabdomyolysis in 2001 (has not returned)
                    -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                    -DX'd with TMJ in 2000-wear splint
                    -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                    -DX'd with Epilepsy -2000
                    -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                    -DX'd with Fibromyalgia (2006)

                    Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!


                    • #11
                      Hi Toby, I am on Celebrex for the arthritis. I am on Ultam, Bentyl and Pyridium for the bladder pain as well as using Lidocaine gel. I started on Elmiron one month ago.

                      I do not work anymore becasue of the pain so I pretty much stay at home and take care of the house. I have a 22 year old daughter living at home as well as my husband. I used to be very active in church, teaching and all, but that has diminished over teh years until now I am lucky if I get to church once a month. I do talk to some friends on the internet and that helps a lot.

                      Thanks for asking and talking with me. It is good to have someone to talk to.


                      • #12

                        Thank you to all of you for your replies. It sure helps to hear from others who know how I feel. I know this too shall pass, nut sure is "hell" till it does.