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  • Hi, I'm new here

    Hello everyone,
    I'm new here. I was diagnosed in June 2010. I had a previous gyn surgery that had left me in more despair then the reason for the surgey...and it opened a huge can of worms!
    Never have I had a back problem. I know have bulging discs at 2 3 4 5 and s1 levels..also 5 6 7 (neck). I am in constant pain in my back and my pelvis always burns. My inner thighs are tight and hurt constantly. I went from lifting weights daily and really looking toned to..well..just there. Everyday I have to take Dilaudid, ibuprofen, flexerl, pariet and now Elmiron and today I am to start on Neurotin for the pain in my back. I have had trigger point injections and physio..none helping. Does anyone think that the ic could be making the pain worse?
    Up to this point the only treatment I have tried/recieved for the ic was the bladder hydrodistension and I had some dialtions done as well that day (scar tissue from the BAD surgery..) I seen my gyn yesterday and I explained just how terrible things have gotten for me and he started me on Elmiron. So far I'm ok..no nauseau. I will be honest I am a bit worried about the hair loss.
    So the IC is just the icing on the cake for me. I am unable to lift the kids. They are 2 and 3 and my oldest is 12 (she's a great helper) but with the back issues, perineum scar tissue and my ability to have a bm being nonexixtant I am just a wreck and NOW ic? UGHHHH. I hope the Elmiron helps my bladder out and takes some pressure of my back. It causes me to limp and lean forward. NOt too attractive for a 35 year old. Thanks for reading. I hope to make some great new buddies and learn a bunch! I am a sponge right now trying to take everything in. Have a great day
    Canadian daisy

    Current Medications: doses go up and down..
    Dilaudid, Elmiron, Neurontin ,Flexeril ,Pariet, Ibuprofen, Ativan, Valtrex, Vitamin D, Caltrate, Premarin Vag Cream, Triamcinolone Injections in Perineum, Depo-Medrol for Trigger Point Injections, Biscodyl, Citromag, Milk of Magnesia, Xylocaine Jelly

  • #2
    Hello fellow Canadian,
    Sorry you are having such a hard time. You are not alone in this..I just had xrays on my neck and spine and hands.. Been having pain there- so kind of think it is arthritis. I also have IBS along with IC.. I am very sensitive to meds and things make me sick or give me constipation..I recently tried the Oxytrol Patch but that irritates my skin grrr..I just had a cysto/hydro and my bladder only holds one cup when expanded. so not had much relief.

    Keep reading and searching..This board is where I have learned the most. My dr and Uro never told me very much...

    Hope you find answers and start to feel better soon.. both my boys are in Ontario although one of them is coming home tomorrow and then is flying out to Calgary and then to Jasper where he has a job..
    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)

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    • #3
      to the IC Network. I'm also very sorry you're having such a difficult time. Are you on a physical therapy program for your back?

      Warm hugs,
      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


      • #4
        Hi! This is a great website to learn about IC. It was a lifesaver for me in the beginning. Check out all the videos. Another thing you can do is check out the IC diet as described on here. It really does help. Also, there are alot of other treatments besides elmiron. It does not work on everyone & when it does, it may take up to 6 months to work. So you have options. Best of luck with all your spine problems. Glad you found this website.

        Comment


        • #5
          I agree with everyone, there are numerous treatments for IC.
          My back hurts if I do to much or drive to long since I was diagnosed with IC.
          Before IC I was a workalcohol now I do minium arround the house. This desease is very cruel it effects alot of your normal routines. But, if you get on the right treatment you can get alot better than you are right now. We all just need to pray for a cure and help each other the best way we can. I hope you get relief real soon and God Bless You.
          <center>
          <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
          </center>

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          • #6
            Mild IC, but much more...

            Hello,

            I agree with Donna. Have you looked into or been to therapy? It sounds like in addition to your back, you might have some Pelvic Floor muscle problems--I'd go get that checked out, too!

            I had my first session on Tuesday and found out that my left hip muscle is so tight that it pulls up and causes my legs to appear uneven...after massage, they measured to about normal.

            There's a lot related to this problem than meets the eye and much that doctors aren't really even sure of. !!!

            Good luck you-I hope that you feel relief soon.

            Maria



            Current medication: Soul-searching

            Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




            Comment


            • #7
              Hello all,
              Thank you for all the replies!
              Yes I have done physio for my back, as well as chiropractic care and massage. None work. I never had an issue before that operation.
              Yes I do have pelvic floor issues. The operation I had was an attempt to "fix" that problem. I had a Perineorraphy, anterior and posterior repair and a urethral sling (tvt with Monarc). Simply put, they cut me open like an episiotomy BUT times 100..and they "tightened" everything up and messed with all my nerve bundles down there. He said that my bladder prolapse was "better" and he felt I didn't need the hammock done (mesh to actually hold the bladder up) so he opted for just the sling on my urethra ( to stop stress incontinence) IF anyone reads this just take one thing away with you and remember it ALWAYS...NEVER EVER have your vagina repaired for ANY reason! Once a patient..ALWAYS a patient. I lost my ability to orgasm for a whole year..never mind the recovery time..I was totally bedridden for 4 weeks! HOw embarrassing that was..my poor husband was running wild trying to take care of all the kids, 2 of which were babies (well..still are). I had pumped enough breastmilk to last the littlest but then could no longer breastfeed because the recovery just drained me. I was so ill, infact I still am. I am not anotmically correst. I am "too tight" (sorry If I offend anyone) I rip open everytime I am intimate with my husband which them leaves deep vaginal fissures. I have had my whole perineum injected with steroids in hopes to break up the scar tissue (didn't work) . I can't wear tighter clothing, or fancy panties. I am 35..LADIES please do all your research before jumping to fix that urine leak or that "not tight feeling".
              And..he never even considered IC. Thankfully I asked for a 3rd opinion out of town and she is actually a pelvic floor specialist Right away while talking she was convinced on what was wrong with my bladder, heck I am going atleast 20 times a day if not more some days! Unfortunatley she was unable to help with the vaginal fissures, it really is horrible to have to apply Lidocaine 20 minutes prior to being intimate with your husband. And ..on top of all that nonsense I have to be in the "perfect" position with all my special back pillows or it feels like my spine is breaking.
              I pray everyday for God to pleas eplease lay his healing hands upon me..even just a tiny bit. I am overwhelmed with all of these things being wrong. Having 1 is bad enough..but my spine, my bowels and ic? Phew..oh and I am also awaiting test results for the brca 1 and 2 test..so I am feleing snowed over. I find I am talking to God more often and I am just out of words sometimes. I beg for help..
              Sorry for the novel ladies...*hug*
              Canadian daisy

              Current Medications: doses go up and down..
              Dilaudid, Elmiron, Neurontin ,Flexeril ,Pariet, Ibuprofen, Ativan, Valtrex, Vitamin D, Caltrate, Premarin Vag Cream, Triamcinolone Injections in Perineum, Depo-Medrol for Trigger Point Injections, Biscodyl, Citromag, Milk of Magnesia, Xylocaine Jelly

              Comment


              • #8


                I know it isn't a great consolation, but at least you know now what is wrong. Be sure to check out all of the sections here at ICN including the diet and physical therapy sections. You might also look for a support group in your area. It is often comforting (and educational) to talk things over with people who "get" what you are going through.

                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!*

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