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  • kenzycodi
    replied
    I look at things like this. If you guys want a baby then have a baby. It seems we are all stuck with IC for awhile so might as well live our lives ....right..? I know I have 2 little girls and i would have them again regardless of the pain, misery, and suffering I would have to go thru. Once you hold that little baby it will all be worth it. Good Luck!

    Kenzy

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  • Jenny Roffe
    replied
    Dawn,
    Hey I just read what you wrote about worring about having a child and I wanted to tell you that you are not alone. I am only 20 years old but the one thing I have always wanted is a child of my own. I helped raise two children already and even though I am ready I know my fiance isn't. He has told me that If I get pregnant then of course he would marry me and stuff b/c he is military so I know he couldn't run, but what if it does make me worst. I also have ic but the worst part is that I have endometriosis too. I have had three laser surgery's in a year and it sucks. I have seen probably 10 obgyns an am still now searching for one that knows a lot about both probalems and it seems noone knows anything. The last doc told me that sents the endo keeps getting workst that i will probably have to have hysterectimi in like a year. So believe me I am scared too. Like you I want to just risk it all and have one now. Because i already know that my fertility isn't too great b/c of all the surgeries I have already had. So if you want to chat you can email me. I do know how you feel. The ones that haven't been there says it is easy but yet it is one of the hardest things in life for a women to know that she might not be able to have her own child.

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  • Teri
    replied
    Just look at us "old timers" who had babies when we didn't have a clue there was a name to what was wrong with us. When I had my two in the early 70's I had one dr tell me that I have a very serious bladder condition and anytime I would need a physical done my urine HAD to be cultured. Yea, right. I was 20. What did I know? And, what dr was going to listen to me? I truly believed that everyone lived in the pain I always had and didn't find out till I was 47 how many times a 'normal' person goes to the bathroom Yes, I did have alot of down time. Yes, I remember the X calling me lazy or coming home from work saying "is that all you managed to do today" I didn't have a clue I was sick cuz nobody ever told me I was eek eek

    Have your babies. There are plenty of kids that grow up with their parent/parents have alot worse things than IC to deal with.

    wishing you the very very best~

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  • JenniferElan
    replied
    Here's as positive thought... lots of people are at their healthiest, while pregnant. Let's all pray and hope for eachother- and not let 'fear' get in the way of a beautiful life.

    Take a moment and pause... aren't we all okay 'right now'? In this moment? The present is perfect.

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  • Kelli
    replied
    I have heard that pregnancy can sometimes put you into remission......just a thought

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  • klance
    replied
    I have to lift one up on that note as well. My husband and I have only been married a short time, but I DO want to have children at some point. If I can barely make it through life now, how am I going to do it while a little person is pressing down on my bladder with all his/her might? And with an infant there IS no break. They need picking up and YOU have to pick them up. You can't explain to them that mommy is in a lot of pain, its YOUR job to make everything ok. There seem to be a lot more of us out here than I thought, so keep your chin up. You're definitely not alone.

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  • Jeanne
    replied
    KB42-
    I completely relate to all your concerns about pregnancy and IC. I'm 32 and would like to have my first child, but am overwhelmed with how I can do it. I went to the gyno today about going OFF my meds to conceive, and she said to go UP on the Elavil so I'm in less pain during sex and can broaden my limited diet. She thinks it's okay to stay on Elavil and Elmiron during pregnancy, but I'm not so sure I'd feel right about doing that. In addition to all your concerns, I also wonder if I can work with IC(I love teaching at a University) and have a baby. None of us know as all of us are different and it's very scary. Anyway, we "considering pregnancy" people always get alot out of people posting their success stories, and even their "unsuccess" stories, SO keep this board active, folks!
    Hugs,
    Jeanne

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  • KellyL
    replied
    KBee--I have some of the same fears and concerns. I have fears about staying on some meds and hurting a baby because I'm not strong enough to go without, even if the doctor OKs it. Also, how can I maintain any kind of sex life, or even get pregnant without all the meds to help me get by? It's scary. Thanks for posting all your thoughts--it's helpful to me too. Kelly

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  • KellyL
    replied
    Dawn--to answer your question about the creams--I've tried some, but had success for several years with a cream called Emla. It does numb very well, and stings less than most. I may definitely use it again if I get pregnant and am in pain. It definitely has a strong numbing effect and lasts about an hour, so if you have very specific areas that hurt, it should help. I have used Vicodin pre-sex for years. Good luck in FL. If you're moving close to a major university with a med school--you might try there first for someone who specializes in vulvar pain. I did the biopsy too. Kelly

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  • KrissyBaker
    replied
    Laurose,

    I appreciate everything you've written, and you seem to have written it all very factually.

    Unfortunately each and every issue you raise I'm struggling with mightily. I'm afraid of so many things.
    • <font size="2" face="Verdana, Arial">I'm afraid of waiting too long to try for children and having trouble conceiving
    • <font size="2" face="Verdana, Arial">I'm afraid of trying too soon and overwhelming my body, which is just starting to recover from it's first long flare
    • <font size="2" face="Verdana, Arial">I'm afraid of ruining my husband's dream of having biological children and insisting we adopt
    • <font size="2" face="Verdana, Arial">I'm afraid of having biological children and destroying my body
    • <font size="2" face="Verdana, Arial">I'm afraid of being on medications that might hurt the fetus
    • <font size="2" face="Verdana, Arial">I'm afraid of over-worrying and putting myself into pain and danger when women on crack get pregnant and have babies
    • <font size="2" face="Verdana, Arial">I'm afraid of ruining my marriage by ruining my health from having children
    • <font size="2" face="Verdana, Arial">I'm afraid of resenting my husband for having kids with me and ruining my health
    • <font size="2" face="Verdana, Arial">I'm afraid of resenting my husband for not having kids with me
    • <font size="2" face="Verdana, Arial">etc, etc, etc
    <font size="2" face="Verdana, Arial">
    Basically, I'm afraid of every darned thing about this. You seem very solid and assured. That's worderful for you. I envy you. Me, I spend my time worrying. And what I love are the people who tell me that I don't have to decide right now. Pardon me while I snort derisively *SNORT!*. I may not have to make the decision now, but eventually it's got to be made.

    I don't live well with ugly demons in the closet. Part of me just wants to get pregnant right now and deal with whatever comes. To know already, so that I can stop being afraid.

    You know?

    I want a child so badly. I would adopt, but after an honest discussion my husband only wants to consider adoption after we've completely ruled out the viability of natural birth. And then my doctor went and reassured us that birth and IC are just fine together. I don't know if I trust my doctor about that anymore, but I do know how my husband feels. So I guess it's birth in my future, but I'm afraid of it.

    Does anyone else feel this way?

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  • liz2
    replied
    The lidocaine helps a lot with sex.

    When I had my first child, I didn't have IC. With the other two,I had non-ulcerated IC, but we didn't have a name for what the uro was treating. Today my IC is ulcerated. I never considered adoption. I wanted to have my own babies. My uro was very, very supportative of me.

    I had to be off of all medication, for the most part, and my uro and OB/GYN had to work together. Occasionally, my uro had to use an antibiotic on me that targeted the bladder, because pregnancy did irritate my bladder and caused several infections. Pain medications are a definite "no" when you are pregnant, and the neutrontin would be, too. Instills would be out of the question.

    Most doctors will let you continue with something like Levsin s/l for spasms.

    To date, I am not sure there are any studies that have been done with Elmiron and pregnancy. However, Elmiron does thin the blood, and I believe it would make you more prone to miscarriage. In my opinion, it also would be a risky medication as you got closer to delivery.

    I would wait until your move and try to get the right doctors first. Also consider whether or not you have the energy to get up at night with a baby. My husband helped a lot, and he was there too with the raising of our children. Many a night he would have to fix supper for everyone.

    Having the second child was a joint decision. The third one was a happy accident, but my OB/GYN wanted me to consider abortion because of my own health. I refused. My uro stuck with me, and I changed OB/GYNs; I couldn't handle using a doctor who wanted to abort my baby.

    Yes, I considered who would raise my children if I had died--my husband would have--with help from his mother and my parents--even if it had meant moving closer to where one of them lived.

    As you can tell, I am still around, IC and all. Additionally, all three of my children reached 18 years of age.

    Another point to consider is: could you raise your baby if you and your husband divorced. There are no easy answers; you have to weigh everything.

    --------------------------------------------------
    Hope is the thing with feathers
    That perches in the soul,
    And sings the tune without the words,
    And never stops at all. --Emily Dickinson

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  • dawnlizbeth
    replied
    Thanks Kelly!
    I hope I find a good Dr. down there too. I already checked out the site & there is nothing listed for our area. Oh well, I will have to sleuth it out when I get there. Oh, one thing I have not tried yet for some of my pain w/intercourse is the lydocaine (sp?) cream. I am hoping that will help as its not a problem as far as baby side effects. Have you tried it or do you not have the sandpaper problem as I call it? Good luck to you too!
    Dawn

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  • KellyL
    replied
    Hi Dawn, You're not alone--I'm definitely thinking and having fears about the same things. I think it's best to probably quit all the drugs cold turkey, but not always possible. How can you conceive if sex is too painful? I'm planning to meet with my OBGYN that treats my vulvadynia to discuss these options...maybe you can completely quit one or two drugs, lower dosage on some, find a safer drug, etc. I'll also double check with my urologist for her opinion. My plan is to try for a year and then reconsider (maybe earlier) based on how I'm doing without meds. Please keep us posted on what you plan to do--hope you find a good specialist in FL (maybe someone on this site can refer you). Kelly

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  • dawnlizbeth
    replied
    Stasny,
    what sort of stuff are you doing instead of your drugs to deal with symptoms? Which ones are you finding to be the most helpful? So far diet seems to be the only non drug thing that has shown promise for me. I'm always looking though
    Dawn

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  • dawnlizbeth
    replied
    I have tried talking to my primary doc about all of these issues but she says she is not qualified to treat any of this stuff...can't even taper me off my drugs. Meanwhile I have had several less than stellar urologists. The first misdiagnosed me & said I did not have IC. The 2nd did a hydro/cyst & found hunners ulcers but then he didnt bother to mention that food had anything to do w/symptoms or things like prelief, etc. Wanted to jump straight into DMSO. NO explanations about anything. Sooo...now we are moving to Florida & I have to find a new urogynocologist. I will discuss all of this then, I guess I am just trying to learn anything that I can about this topic. I have learned so much from the Ic network that I never would have gotten out of any uro's I have seen so far. We have not ruled out adoption, we just want to try on our own first. Thanks for listening.
    Dawn

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