Want to have a baby but....

[dawnlizbeth]

Hi,
I really want to have a baby in a year or so. Unfortunately I have a few chronic health problems, Ic being one of the biggest. I am currently taking Etanercept/Enbrel, Elmiron, Gabapentin/Neurontin, Amantadine/Symmetrel, and flonase on a daily basis. I have been on everything except for the elmiron for over a year & a half. None of these drugs is safe for conception except perhaps elmiron. I am very nervous about quiting all of the drugs. I have hunners ulcers & can only hold 350 cc under anesthesia. We think I have vulvodynia too but its kind of hidden because the neurontin works so well on it. I want to switch over to more natural & alternative treatments for the the next few years but am very scared of what will happen. frown

[poetgirl]

I hear ya. So many of my friends are having children now, and even though I'm personally not ready just yet, I have often wondered if it's something I should even consider for the future, given the IC, IBS and vulvar vestibulitis. There's a lot to weigh when you're taking medications that are finally providing some relief, but in order to have a child, you have to risk dealing with those symptoms again (not including the pregnancy ones like morning sickness!) toilet

Have you asked your doctor about the medications and any alternatives you can try that are safe that might get you through 9 months (or more, since you usually have to stop taking meds if you are trying to conceive)with relative comfort?

[LDS]

If you are physically able to manage children with your IC, I'd recommend adoption as an option. I am unable to live without my medications, even during pregnancy, so we adopted our second child a few years ago. He's a dream come true and I feel exactly about him as I do my first. I also think I'm a better Mom because I wasn't in pain for 9 months before he came. While it's sometimes hard, I find having him to think about gives me less time to focus on my own limitations. Whatever you decide, being a mom is incredible and I wish everyone that chance who wants it, in whatever way works best for them. All the best, LDS

[LDS]

If you are physically able to manage children with your IC, I'd recommend adoption as an option. I am unable to live without my medications, even during pregnancy, so we adopted our second child a few years ago. He's a dream come true and I feel exactly about him as I do my first. I also think I'm a better Mom because I wasn't in pain for 9 months before he came. While it's sometimes hard, I find having him to think about gives me less time to focus on my own limitations. Whatever you decide, being a mom is incredible and I wish everyone that chance who wants it, in whatever way works best for them. All the best, LDS

[dancemomof2]

hi

I am currently trying for a baby, and, have been coming off all medication. If you decide to come off meds. please hand in there and do it safely. It was rough at first, but it is getting better.

[dawnlizbeth]

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

[dawnlizbeth]

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

[KellyL]

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

[dawnlizbeth]

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

[liz2]

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

[KBee42]

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?

[KellyL]

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

[KellyL]

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

[Jeanne]

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

[klance]

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.