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  • I'm thinking of giving up :-(

    2 weeks ago I tried to wean myself off Enablex and Depakote. It was a disaster. My IC symptoms (mostly intense pressure/pain) which came back with a vengance almost immediately. I've since gone back on the 2 drugs but am still in pain which makes no sense.

    I saw my Urologist yesterday and told him what happened. He agreed that the Depakote has to stop while I'm on fertility treatments leading up to IUI and a possible pregnancy, but that there is no evidence showing Enablex would be harmful to me or the fetus. He recommended a new course of treatment: an instillation of benzidrine and lidocaine. He has a track record of using it successfully on many expectant mothers. He's urging me to try it.
    So I'm going to have my first instillation next week to see what it does for me.

    My bladder is killing me. On a scale of 1 to 10 I'm about an 8. I don't have the will power to endure this kind of pain or worse while on fertility drugs. And my odds of getting pregnant and carrying a healthy baby to term are slim since I'm almost 45 and my FSH level is 17.6.

    Hubby and I talked last night about dropping the idea of having a baby. And we've already taken off the table an egg donor and adoption. I'm heartbroken and my hubby can't understand why I want to give up. But then it's so hard to explain to your partner what IC agony is like.

    I'm in despair, ladies! I do want a baby, but IC and all its evil stands in my way. Being pregnant for 9 months and hanging on by my fingernails and stressed out from the pain is frightening. Am I making the right decision?

    Thanks in advance for your feedback!
    Current Treatments: Enablex 7.5/day

    Previously Treatments: Elmiron 300mg/day, DMSO instillations, Elavil 12.5mg/night, Detrol LA
    4mg/day

    Other ailments:
    Migraines: Imitrex, Treximet
    Anxiety/Depression: Klonopin 3mg/day
    Mood Swings: Seroquel 300mg/night

  • #2
    This is a decision only you can make and I know it's a difficult one. I hope the instillations will help.


    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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    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


    • #3
      Hi Melissa

      I really feel your pain. I have spent the last four months coming off my medication to fall pregnant and it's been so hard. Each week the pain seems worse and like u I have considered giving up many times. On the up side those installations u r talking bot whilst pregnant and they have been really successful. Melissa my pain score is really high as well and sometimes I want to give up but I am so glad I haven't.

      I know for me it's worth it, I really want a family and don't want to spend time wondering what would have happened if I hadn't have pushed through. Melissa everyone has differnet severities of IC and u need to what's best for u and know limitations. My Urolgist is convinced my IC will go into remission whilst I am pregnant but I am not so sure.

      Melissa I know it's a huge decision and I feel the same fears as u.

      Good luck with yr decision I know its a tough one. I know I am really struggling without it as well. It's nice to know someone is dealing with the same issues. I wish u all the best

      Comment


      • #4
        Thanks to everyone for your support and compassion.

        My husband and I decided to try the benzidrine/lidocaine instillation now, before I start the infertility drugs. In fact I see my Uro today for the first treatment. My Uro in 13 years has rarely steered me wrong and is confident this will work for me during the infertility drug course and if I get pregnant. He's treated many expectant mothers with this combo of meds with a solid success rate. He told me last week that I deserve to have a chance at a family of my own without suffering horribly.

        Please send good vibes my way that the benzidirine/lidocaine instillations work. I'll also remain on the Enablex during the infertility treatmemnts which my Dr. assures me is safe during pregnancy. But I may go off Enablex if I conceive since it's not been 100% proven by the FDA to be safe during pregnancy. I don't want to take any chances.

        Thanks again, ladies, for all your help!
        Current Treatments: Enablex 7.5/day

        Previously Treatments: Elmiron 300mg/day, DMSO instillations, Elavil 12.5mg/night, Detrol LA
        4mg/day

        Other ailments:
        Migraines: Imitrex, Treximet
        Anxiety/Depression: Klonopin 3mg/day
        Mood Swings: Seroquel 300mg/night

        Comment


        • #5
          Melissa66

          Hi,
          We adopted a baby from Taiwan. Best thing I have ever done in my life. I would be happy to talk to you about it. My email is:
          [email protected]

          Jenny
          Thanks for your support, Jennymm
          meds I am on
          DMSO - will be done oct. 5
          Lyrica 100 am / 100 mg pm
          continous birth contol no periods, seasonique
          urelle 3 x day
          Clonazapam .5 mg
          valium suppositories
          Voltaren cream
          pelvic floor phys therapy
          conditions: IC, tight pelvic floor (getting better), freq/ urg, severe pain when holding it, urinate about every 20 minutes ( even at night) to get 5 minutes painfree, infertility, endometriosis, 2 miscarriages, 2 ectopics
          PROUD MOM OF MY SWEET LITTLE BOY FROM TAIWAN, ADOPTED JUNE 28, 2008 at 5 MONTHS OLD
          I have tried everything except interstim, botox, bladder diversion.

          Comment


          • #6
            Hi Jenny,

            My husband doesn't want to adopt. I'm open to the idea and plan to bring up the subject again if we don't get pregnant. But if he is still against it, we won't adopt.
            Current Treatments: Enablex 7.5/day

            Previously Treatments: Elmiron 300mg/day, DMSO instillations, Elavil 12.5mg/night, Detrol LA
            4mg/day

            Other ailments:
            Migraines: Imitrex, Treximet
            Anxiety/Depression: Klonopin 3mg/day
            Mood Swings: Seroquel 300mg/night

            Comment


            • #7
              Hi Melissa,

              That's great news and I am sure yr doc has yr best interests at heart. My Uro is fantastic and keeps telling me that just because I have IC doesnt mean we have to give up the chance to have a family. I am finally starting to believe him. It's so hard to see the end result of a beautiful baby when yr in so much pain but for me I know i want this and I am going for it. In saying this there has been so many days that I have wanted to give it up. I have Like u endured so much pain already coming off the meds and I am not even pregnant. I have even had to cut back at work which is really hard. We can start trying for a baby in 4 weeks. They r going to b 4 long and painful weeks but hopefully they will go by quickly.

              Melissa that is great news about the installations hopefully they give u some relief and the strength u need to push through. Fingers crossed they work well and u fall pregnant quickly.

              Melissa good luck, yr in my thoughts. Thanks for sharing yr story it has really helped me and I wish u all the best.

              Good Luck.

              Comment


              • #8
                Hi Melissa,

                I too am struggling with thinking of giving up on the idea of being pregnant and a mother. I've actually never even been on any medications since I was diagnosed with IC while trying to get pregnant. I feel as if I'm at my own crossroads, do I continue trying to get pregnant or try a different path. The thought of being in a lot of pain and discomfort while pregnant seems overwhelming. I can relate to what you feel because I have similar fears and concerns. I know there are days when it's really hard to stay optimistic when other people around you are healthy and seem to get pregnant so easily. I hope the instillation helps you and it sounds like you have a good urologist that is open to treating you. I will keep you in my thoughts and I hope your IUI is successful.

                Monet
                Diagnosed IC 2/2011

                Current treatments/medications:
                Physical Therapy for Pelvic Floor Dysfunction
                IC diet
                Claritin
                Flonase
                Elmiron (200 mg twice daily)
                Uribel
                Valium 5 mg
                Zoloft 25 mg
                Tylenol 500 mg (as need for pain)

                I love being a mom to an awesome active toddler

                4/09 9/09

                Comment


                • #9
                  Hi Monet

                  WOW so u have never had to take medication for your IC that's awesome. When I first got diagnosed I didn't but as my illness got worse I had to start so I could get a semi normal life back. I am almost off my medication and we r counting down the days till we can try. I agree it's hard watching people get pregnant and have babies so easily. I am also so happy for them but also a little part of me is jealous.

                  Monet, r u pregnant or trying? How is pain level while yr trying? My pain is really bad I also petrified that the pain is going to get worse whilst I am pregnant. My Uro is convinced my IC is going to go into remission whilst I am pregnant but I am not so sure. I just try and keep focused on the beautiful baby we are going to have and it helps me get through. Although some days it's very hard to stay positive.

                  Thanks for sharing Melissa & Monet, it's so comforting to know that I am not alone.

                  Hope yr having a good day

                  Comment

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