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  • Baby Fears and Frustrations

    My IC was diagnosed two years ago. I have been on medications for that amount of time. Between my meds, acupuncture,tens unit, home catheter bladder installations, and my heating pad I seem to have things sort of under control. My husband and I want to start trying for a baby in the spring. I am very nervous about going off meds. I use pyridium and ultram like a crutch. I don't want to take any meds during pregnancy. I have so many questions about pregnancy, but don't know how to get them answered. It seems like nobody wants to talk to you until you are pregnant. I am the kind of person who likes to have things planned out in advance. I have tried to call doctors to find out if they have even heard of IC. One doctor told me that he refers any IC patients to new york. Hello, we live in western Michigan. My urologist did give me a name, but I still felt premature in asking since possible conception is months away. Plus, I don't think his office has had to deal with many IC pregnancies. I try to search for research on IC and pregnancy online, but I seem to find the same study over and over. Or new studies refering to the old one. I can't believe there is not more research out there. I feel that my IC is somewhat magagable most of the time with all of my meds etc. However, I worry that a baby might make it worse. I can't imagine if the IC gets worse. I will go crazy. I also worry about having enough energy to take care of myself and a baby. There is one positive I see to IC and a baby. I am already up a lot at night. the sleep deprivation of getting up with a baby at night won't be such a shock! Maybe that is just wishful thinking. I guess this was just a big vent. I am just frustrated and want some answers. Thanks for listening.

  • #2
    Penelope,

    I've been struggling with the same questions you talk about here. I recently went to see the first doctor in 6 years that I thought actually knew what he was talking about.

    We sat with him for an hour and a half. He said that for a long time all he saw were women that went into remission during pregnancy. However, he did admit that no sooner had he sent of an article about it to a medical journal than a woman came into his practice who had a horrible time with pregnancy.

    He told me that you can have a bad time with IC and pregnancy. It happens. However the likilihood is about the same as a non-IC patient developing a problem during pregnancy, so it's not something to specifically worry about.

    In other words, no more so than placental abruption or preeclampsia or that kind of thing. A really bad IC reaction is as likely or as unlikely as any of the other bad reactions.

    He told us to get into remission and then go for it.

    I posted on it elsewhere in the "Considering Pregnancy" thread.

    Good luck! I hope that helps.

    Comment


    • #3
      Hi Penelope:
      I too would like to have children soon (I'm 37 and my clock is TICKING REALLY LOUD), but will be temporarily putting off any pregnancy until I get through the BCG study at the University of Maryland. During pregnancy, many people go into remission while others do not have a dramatic worsening of their symptoms. I have read that some people have pain in their first and third trimester. At least we get a little break during the second trimester. You really need to get with an experienced doctor, because this disease and the treatments available and not very well known.

      Anyway, there are several doctors that treat IC listed for Michigan. You can have your pick of them off the list on this site. Just go to the ICN Patient Handbook and look under Living With IC-Physicians and find your state. Also, take your time and read through the entire Handbook. There is a lot of info on this site, which takes time to digest, but it's the best IC site a patient could find!!

      Hope this helps.>Tina
      What you are is God's gift to you...What you make of yourself is your gift to God.

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      • #4
        Thank you for listening.
        Getting pregnant for the first time is nerve racking enough.
        Then you have to factor in the IC.
        The doctors listed on the website are all on the other side of the state. At least four hours away.
        I am going to call the OB that the Urologist requested and she what she has to say. Thanks again for listening.
        I will let you know what I find out.
        Penelope

        Comment


        • #5
          Penelope:
          If you still have a difficult time finding someone on your side of the state, contact the listed doctors on this site and ask them if they know any doctors in your area. It's worth a try.>Tina
          What you are is God's gift to you...What you make of yourself is your gift to God.

          Comment


          • #6
            Tina,
            The Urologist that I go to is wonderful for IC. The office is an hour away from where I live,but I don't want to leave due to them knowing so much about IC. It is just frustrating to have so few OB's to choose from due to their lack of knowledge in the area. Plus I am nervous about having to drive an hour in good traffic/ weather for OB appt. and delivery. I don't want to be a pessimist, but I am expecting the worst from pregnancy. That way if things go well, I will be happy. I am not looking forward to going back on the really strict IC diet. Thanks again for the advice, but I think the doctor I have is the closest one to me.
            Penelope

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            • #7
              Penelope,

              I really, really understand your worries and want to respond to your post.

              I'm certainly no expert on IC and pregnancy but I've been through it....the planning, the pregnancy, the birth, and now 15 months of motherhood. You can find my pregnancy journal by clicking on the link at the bottom of my post....and don't hesitate to throw any and all questions my way. I'm here for support and to share my experiences.

              BTW....I'm also in Michigan...Eastern Michigan. I'm not surprised that you're having trouble finding an OB versed in IC ...although Eastern Michigan is full of them. Don't be afraid to express your worries to your current OB anyway. Let him/her know that any knowledge they can acquire about your condition will be helpful. I guess what I'm saying is don't be afraid to encourage your doctor to research and learn about IC.

              E-mail me anytime. [email protected]

              ICNLesa
              "The first time her laughter unfurled it's wings into the wind....
              We knew that the world would never be the same."
              ~Brian Andres

              Baby Kaitlyn was born on 07/08/01 after a successful pregnancy with IC!

              Comment


              • #8
                Lesa,
                Thanks for he information. Your side of the state does seem to have a lot more IC info. Like I said before I can't complain about my Urologist. He is great. I am a little concerned about an OB. I did talk to a midwife today that has had a few IC patients. She even knew the different meds. I was on and what they were for. That was a nice relief. I have read your pregnancy/birth story. I am so happy for you. Your daughter is precious. I will keep your email in mind when I get closer to planning the pregnancy.
                Penelope

                Comment


                • #9
                  Penelope~

                  Im very excited about you and your husband trying to have a <img src="graemlins/baby.gif" border="0" alt="[baby]" /> baby in the Spring. My husband and I would love to have one in a couple of years...when I get about 23. [img]biggrin.gif[/img] Im 19 now, so I have plenty of time to have one...if God willing. I hope you find alot of answers to your questions and find a good doctor in Michigan. I keep in touch with some friends in MI. I feel the same way as you do about wanting to know information ahead of time..so you can already be prepared for the situation. I wish you both best wishes on having your special bundle of joy ! ((HUGS))

                  ~Alison~ <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

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                  • #10
                    Hi Penelope,

                    I understand how you feel. My husband and i just started trying about 2 months ago. It is a very scary thing not to know what the future holds in normal things , but to have to think about how will I feel and will i be able to handle this, is so nerve racking. Im 25 and to have children, be a mom and a wife is all i have ever wanted. I guess my biggest help is God. IF it is time for me to have one i belive it will happen. if not then there must be a reason. But I really think going throught life in fear is not nessisary. GOd is ther to do all that worring for you. and to help you when you need it. Dont get me wrong im human and still worry. but i try my best to trust in him and continue on with my life.
                    Dont stop your life because of the unkown or the feared. We are all strong people who have this problem. if we werent we would never make it up each day. BE strong, i know you are.
                    <img src="graemlins/angel.gif" border="0" alt="[angel]" />
                    God Bless,
                    Marci C

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