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  • Note to self

    Why is it that I have so much bladder pain- vaginal too?Why is it that I never feel like doctors really "get it"? Why is it that I suffer on a regular basis,left alone in my mind to figure it out.Why is it that there is always a shortage of compassion, that doctors dont know or care how painful this is for me? Why is it that I am made to feel like a "druggie" when I dont like the way pain pills make me feel..I just like to be out of pain?Why is it so hard for them to understand this? Why is it that when a uro examines me they see proof positive of my pain in tears, and yet they fail to really "see " that. Why is it not heard by doctors that I suffer after sex- am I supposed to not ever have any! And not complain to the doc about it?But apparently,I am using too much vicodin...60 in 2 mos. Why cant they see that I MUST have pain if I am taking them!Why dont they get it?For truths sake, I have never smoked, drank or done drugs in my lifeand yet I am made to feel guilty for taking pain pills that really just take the edge off anyway..whooppee....when they dont reside in my bladder and dont know what I live with.I can honestly say that if I had to live without treatment and understanding of my bladder pain, and pain relief I would really not want to live .No, I am not saying I am or would ever go there ....what I am saying is there is a desperation to be heard and helped that runs deep in me because I have not had the best care with male uros..patting me on the hand with 1 eyebrow raised at the same time leaves me deflated to try another.We treat outr own animals with more care than some uros.I certainly didnt ask for this bladder pain,or want it,so why is it that I always have to PROVEthat I have i.c.then they"down play it by saying ...."well we really dont know what ic is! Well heck if they really "dont know"how I suffer with it!?..So today I guess I just feel hopeless and misunderstood...like the scenario of me on bended knee to the Dr begging for them just to help me help myself get better.Some quality of life huh..grin and bear it till its ok to have my pain pills refilled in 2 weeks.Why cant I find 1 uro that can really see the life of an icer and say "Ok lets try this;! Or something in that direction. My poor husband has paid the price of my pain and knows that it is not a fair disease...but always has an uplift for me.He knows what I go thruans I to tell him really how bad it hurts, because he loves me so much it pains him to see me like that. I guess I am just tired of this disease cycle...Ill get over it . Ok my pity part is over.. I got it off my chest. Thankies for listening.

    Guess What!!!!!!!! I wrote this 2 days ago(above) and just today found the most compassionate female uro, here in Newport Beach, Ca. She gave me estrogen vaginally, an instil which I normally scream...but didnt cuz she used a 8 french and numbed me good..used solumedrol(never had before) and heparin,took my hubby with me as backup..so glad I did she checked my pfmuscles, no uro ever had and made a plan to get me better.

    I ask so little...really we all do...with this disease just some hope and understanding and a plan of action and the world is whole lot brighter isnt it!

    I am sorry to have gone on so long. Its nice to see you all here again...I havent been on in awhile ...moved to Ca. and my daughter has my puter lol!

    Thankie, thankie and more thankies my ic friends
    [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
    Hysterectomy for severe carcinoma insitu
    1994..1997 ovaries removed
    First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
    severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
    Hashimotos throiditis
    angiomyolipomas of the kidney
    Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
    I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

    'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

    Big hugs to all my ic friends!
    Debbie


  • #2
    at least you got to vent it all out. I hope you new doctor haelpes you.
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      HI! Sorry you have IC......it does really sux to have it! It can truly drive you crazy with all the meds, the "don't get it" dr.s, nasty tests.....UGH!!!!!!!
      I'm SO glad you found a good, compassionant dr.! You are one of the lucky ones! Good luck to you! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        Is your new URO agreeable prescribing pain meds for you? What action plan did you come up with? Just curious. Hope you are doing well.

        Comment


        • #5
          update

          Ireally like my new female uro. my husband and I went away for our anniversary, and as always at such a fun time you hope you can enjoy a little sex too. Two times for me and I was curled up in a ball in pain that would not let me sleep. So as soon as I got back, again, I took my hubby( GIRLS IT HELPS!) and my uro saw the urethral inflamation and tears as she examined me (very gentle) and she gave me a rescue instill with a 8 french cath...still hurt but much better than the big ones, and it gave me about a day of relief ...but hey got start somewhere! ) I ended up 3 days later with a major uti!!!! Couldnt get cold packs fast enough and the pain was horrendous! I got on Macrobid and it is working! No my uro does not do pain meds, but my GP doc gave another 60 vicodin and is understanding of my pain, but does not think it is the right drug for chronic pain and wants me to see a pain doc so I can get better relief. I am most of the time in pain after 3 hrs after a vicodin. So, I see the pain doc in June and go from there. It seems that reg. docs are not comfortable treating chronic pain, mine isnt, so I am grateful for the referral.

          I hope you are having a pain free or pain"less" day )

          Hugs, Debbie
          [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
          Hysterectomy for severe carcinoma insitu
          1994..1997 ovaries removed
          First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
          severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
          Hashimotos throiditis
          angiomyolipomas of the kidney
          Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
          I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

          'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

          Big hugs to all my ic friends!
          Debbie

          Comment


          • #6
            Hi Deb,

            Glad your spirits have improved - believe me, I could have written many parts of your first post! It is great to see that you have found a caring uro and are actively seeking to feel better.

            I loved your original post about the sex - sometimes I am so frightened to start a flare, that I will avoid sex for months!!!

            Vent anytime - we are all here to listen and vent right along with you!

            Hugs,
            BETH
            IC diagnosis 1999
            Meds: Elmiron
            hydroxyzine hcl
            DMSO as needed
            valium as needed
            librax 3x day

            TENS therapy



            Thanks to all on the boards - YOU have helped more than I can say!



            A person's true wealth is the good he or she does in the world.

            Comment


            • #7
              OMG! I too, could have written your post! I'm so glad you found a compassionate Uro! and I now what you mean by the Vicodin. I really don't see what all the fuss is about. I sometimes take 3 or 4 a day(not at the same time) and it just knocks the edge off of my pain. I hate to take them too. I notice they make me forgetful!
              Hugs, Mare Mare

              Comment


              • #8
                Thank you



                Thank you all for understanding. I do not wish to reside in that desparate, hopeless feeling that I talked about in my earlier post,but it is a fact that I feel that periodically when I just have had enough of my ic pain. My heart breaks for those of you that may feel that on a DAILY basis. It is bad enough that we have ic, but if we are heard by our docs and our pain is adressed, and we have a plan of action, we can get thru this disease and become stonger people. I am indeed very greatful for the ic network and all the wonderful support that has been given to me.

                I go back next week for another instill, and to the pain Dr. at the end of the week. Anybody go to pain docs? Is there anything I need to bring other than my ic records? Have the pain Drs helped your ic pain? Maybe Ill post another thread with that question..Anyway...have a great day!!!!

                Hugs, Debbie
                [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
                Hysterectomy for severe carcinoma insitu
                1994..1997 ovaries removed
                First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
                severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
                Hashimotos throiditis
                angiomyolipomas of the kidney
                Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
                I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

                'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

                Big hugs to all my ic friends!
                Debbie

                Comment


                • #9
                  Oh BTW...littlemyrn....the plan is to do an instill once a week for a month, then a couple weeks off, and start over. I hope they start helping me..right now I just get so much urethral pain afterwards that it hasnt been worth the instil. But I did get about 2 days of relief in my bladder. So hopefully if I can get my urethra"toughened up" enough to get the benefit in my bladder of the instil. Thats also why I am going to go to the pain doc, because I need pain meds to get thru getting all this done. Hopefully, eventually I will be able to do instils comfortably, at home. Oh also the instil is heparin and solumedrol.

                  Thanks! Deb
                  [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
                  Hysterectomy for severe carcinoma insitu
                  1994..1997 ovaries removed
                  First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
                  severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
                  Hashimotos throiditis
                  angiomyolipomas of the kidney
                  Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
                  I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

                  'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

                  Big hugs to all my ic friends!
                  Debbie

                  Comment


                  • #10
                    OOOOPS! Sorry forgot to answer bethrlk.

                    You are so right, the whole fear of pain with sex can keep you from wanting it ....But heres how I feel.....If I stop having sex altogether then my ic has totally won. I have always felt that I would rather take a pain pill before or after then to feel the loss of not having it at all. That emotional connection I feel with sex keeps a "normalcy" to a degree in my life . To lose that altogether would seriously depress me. Of course there are boundaries now...I cant do the "wild all night long, new relationship type sex" anymore, But, what we do have is rewarding...so I just take my pill...and know that it is worth it. Of course when I am in a bad flare or uti, we just dont go there, but for me, its still important enough to try and stop, then not try at all. ))

                    Hugs, Debbie
                    [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
                    Hysterectomy for severe carcinoma insitu
                    1994..1997 ovaries removed
                    First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
                    severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
                    Hashimotos throiditis
                    angiomyolipomas of the kidney
                    Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
                    I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

                    'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

                    Big hugs to all my ic friends!
                    Debbie

                    Comment


                    • #11
                      Some answers!

                      Have you tried lidocaine for sex? It's a gel you put in your vagina.

                      There are good doctors out there. I have one. I haven't asked about pain pills because I have a prescription from my fibro doctor. But he takes me very seriously. I chose him because they said he had a particular interest in it.

                      Not only that, my uro helped me with a vaginal problem--lack of sex drive and lubrication--that three other OBs could not help me with. It was a certain estrogen cream that was different than the rest.

                      Now, pain relief is becoming a big topic today, with it now being another benchmark that docs are measuring. Yet, some are asses about it.

                      I take a ton of pills for mental things, so my fibro doc told me that he wanted my primary MD to handle meds. She doesn't hesitate with that. I assume she doesn't see people in pain like that and hasnt become jaded.

                      How many of you ever wanted your uro to experience pain for a day?

                      Comment


                      • #12
                        How many of you ever wanted your uro to experience pain for a day?[/QUOTE]

                        ME ME ME!! And there is plenty of other people I would like to have to experience this for a day also!!

                        Kari
                        Kari

                        I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                        Comment


                        • #13
                          Update...pain Doc

                          Thanks Janvier for the info. I do have some lidocaine jelly...have to try it.

                          Went to the pain doc today! First time ever,so I was not sure how it was going to go. Right away after reading my records, he kindly said"Awww you got interstitial cystitis?" Very nice, very understanding. No questioning me or my motives to be there...he could SEE in minutes how I have suffered with this for years. He went on the discuss options...patches, methadone ...I asked for the least thing that will make me feel gooby but take awaay the pain. He decided on oxycontin 10mg 3xday. I started to cry when he told me that i should be on the way to being pain free. It was like I didint expect to cry , but I didnt expect to really have my pain adressed fully....so it was like a release...if you know what I mean. Funny, as I was walking out of the docs office I was saying outloud to myself...OMG I am going to finally have relief of my pain...maybe all day long!!!
                          I am really grateful to have been helped today
                          [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
                          Hysterectomy for severe carcinoma insitu
                          1994..1997 ovaries removed
                          First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
                          severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
                          Hashimotos throiditis
                          angiomyolipomas of the kidney
                          Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
                          I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

                          'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

                          Big hugs to all my ic friends!
                          Debbie

                          Comment


                          • #14
                            Hi Debgail!

                            Good for you!!!!!!!!!!!! I'm so glad you have found a pain doc who really understands IC! You didn't have to prove anything! It sounds like you could just be "yourself!" I've cried in front of my Uro before. I feel like he is the only one in my life who really understands IC and I feel comfortable opening up to him. I'm so happy for you! Let us know how you are doing on the new meds!!!:woohoo::woohoo:

                            Hugs, Mare Mare

                            Comment

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