Scared. Trying for kids in 1 year!

[Jinny Jean]

Hey!


I have not been on the forum in quite some time, because I am doing so well with Elmiron that I have been able to have a normal life for the last four years

Every once in awhile I think about coming back on to ask questions or find advice because this place has always been so wonderful and gracious with providing reassurance and strategies.

Right now, for the first time in my life, I am thinking seriously about having children, and I have a relative timeline... something that I have never had before. I can't really believe that time is here because it feels like forever that I have wanted to be a mother. Its a super exciting time for me, but also a really scary time, as of course I am terrified about how my bladder will react. I want to get as much advice as I can from moms that have been on Elmiron, and have done well ( either minimal symptoms or remission) before pregnancy and have went off for the duration, and or moms that have STAYED on Elmiron for the duration of pregnancy....

For moms that have been on Elmiron for a long period of time and have done well before pregnancy, were your symptoms immediately flared up because of pregnancy? Were they ok and manageable? Did you go in to remission? Were you much worse? Were you able to do anything to continue to do well? I am scared that I will know the EXACT moment I get pregnant because my bladder will tell me, not the pregnancy test....

I have a super sensitive body and I know it very well, so I am quite sure this COULD be the case... but I am really hoping not. The plan is to try for kids next FALL, which means I have a year to kind of prepare myself for the changes that could occur. My bladder has been doing very well, and I am even off of Elmiron currently, and have been completely off for about 2 weeks. I notice that I have SLIGHTLY more frequency, but nothing major and that is super reassuring... I do plan though on going back on it very soon, but I wanted to see what exactly my body would do once I did stop. I have a feeling that my symptoms would probably become more prominent the longer I stayed off of Elmiron, but Im not sure that is something I am terribly eager to find out at this point.

I have heard that being on the birth control pill is like having a pregnancy in terms of hormones... I don't know if this is accurate or would reflect the same symptoms that a potential pregnancy would have, but I have considered trying the pill again to test it out. I had to go OFF of the pill 4 years ago because I was having terrible IC symptoms. This was when I was first struggling and diagnosed though so it could have been a combo of things... I just wanted to try and eliminate everything to see what was going on in my body. After I went off the pill and started Elmiron my symptoms were considerably better after about 6 months.... again im not sure if it was starting the Elmiron that was helpful or because I was no longer on the pill, or if it was a combination of a little less stress, not taking the pill and Elmiron starting to work.

I would be devastated to have a pregnancy that was painful or spent on the toilet self cathing constantly because I was so swollen I couldn't pee... I have nightmares about it It is something that I always knew I wanted to enjoy... every single minute... so I really hope that I can go in to remission, or stay on the Elmiron...although I am sure that even if I DO stay on the Elmiron I can and probably will still get increased symptoms.. perhaps maybe not as severe? Anyone have a pregnancy that went off of Elmiron, and after breast feeding went back on with the same positive results? Anyone have a really hard time with the PILL but did NOT have a hard time with pregnancy!?

Even if I knew that my body would be slightly upset during pregnancy, I could live with that if I knew there was a good chance of the Elmiron working just as well as it did before pregnancy. I know no one can really say for sure because every body reacts differently... but it would be nice to have a few examples


Just feels like I have so many unanswered questions...

Any advice or experiences would be greatly appreciated


Jenn

[ICNDonna]

Re: Scared. Trying for kids in 1 year!

I think it's great that you are planning to become a mother in the not too distant future. I have to say that it's a wonderful experience. My children were born before my IC became a part of my life, but I wanted to send some encouragement your way.

One thing I do recommend is talking with your doctor about treatment options during pregnancy. I know some have stopped elmiron completely and some have reduced dosage for the duration. You will want to work with your own OB physician to make that decision.

Warm hugs,
Donna

[glowstrz]

Re: Scared. Trying for kids in 1 year!

Hi Jenn! I know you posted this several months ago, but I'm well within your window before you start trying, so I hope this is useful for you!

I'm very much like you, diagnosed young, on Elmiron for many years, successfully. I actually just got on this board after many years of not hopping on because I wanted to try and put the message out there about my current experience. I will post my own thread, but wanted to make sure you saw it When I was younger and more recently diagnosed I used to read all of these scary posts about not being able to have children due to many reasons and got comfortable with the fact that I would adopt one day. Now that I'm married, my husband (while OK with adoption) wanted to see if we could try to have our own kids naturally. About a year and a half ago I started seeing an amazing Uro here in San Diego (I think he's on one of those top ten lists on this site) and I'm so glad I did.

I'm definitely one of the lucky ones, meaning I don't have terrible pain associated with my IC and the doc said because I caught it so early, I have been able to manage my IC very well. He upped my dose from 3 times a day to 4 pills to try and knock out those last few symptoms that creep up. I started asking about the possibility of getting pregnant and he didn't even flinch! I thought for sure I would be "high risk" or there would be some terrible warning, but he told me that Elmiron is safe to take while pregnant AND breastfeed, which I then confirmed with two OBGYNs. (The molecules are too large to pass through the placenta). I'm at 17 weeks now and aside from the very occasional (didn't I JUST go to the bathroom), I have felt no increased IC symptoms! YAY! I started drinking more OJ to get the vitamin c and calcium and after awhile I had to pull it back because I felt like maybe it was going to cause an issue, but even then, it didn't turn into a flare.

A few weeks into the pregnancy, I thought I might have been having a flare...I had to pee like every 45 minutes, but after like 10 seconds of research, MOST women go through this for a few weeks early on in the pregnancy and then it DOES go away, due to hormones. Then most if not all women will have this feeling again later in their pregnancy due to the baby literally laying on top of the bladder. But I'm FINE with that, as long as it's NORMAL and not IC related.

Anyway, my opinion is talk to your Uro AND take this time to find an OBGYN now, if you don't have one already. Make sure they know what your situation is and you can discuss all your fears and questions with them. I am SO glad I did. I'm 36 having my first baby and my husband and I are so nervous, but excited. Good luck and let me know if you see this and if you have any other questions!
-Erica

[Jinny Jean]

Re: Scared. Trying for kids in 1 year!

Thank you so much for writing me back!!! It definatley gives me a lot of hope, and I so appreciate every person who does reach out

It's good to know that you are doing well!! Congrats on your baby! I have talked to my dr about Elmiron and she's ok with me staying on it, it's my partner who is a little skeptical.. And I'm not 100% that I would want to be on it either, but I have given it quite a bit of thought. I think when that time comes I'll re evaluate it. It works well and that for me is really important.

Elmiron has been so great for me. 400 mg is the dose that I do the best on. But I try and take less when I feel good. Helps with the cost. My dr said the same thing, because I caught it early I should be ok with being able to keep it under control. I really hope so anyways. I do well most of the time, and get through the days of discomfort generally ok. I have my bag of tricks that work pretty well.

Do you have Facebook!? I keep in touch with a few ic friends on there! I find it really helpful!!

I will for sure let you know how it goes! I think we are planning to get engaged and married before kids, but I'm pretty open either way. Lol. .. It's still a little ways away, but the way time flies it will literally be here so quick.. I feel like I have waited forever to be a mom.

I'm so happy for you!!'

Thanks again for writing me!!

Jenn

[glowstrz]

Re: Scared. Trying for kids in 1 year!

Hi Jenn,

I'm going to send you a private message for how to find me on Facebook. I'd love to keep in touch. I'm so glad that you are staying positive and your bag of tricks continue to work. I just wanted to comment on 2 things, I hope you don't mind.

1) Regarding staying on your Elmiron, I think it's important to discuss this with your dr. I hear that you are saying it is your partner that isn't so sure, but please forgive my "mamma bear" defenses, taking your meds is your decision. My husband didn't seem to mind me staying on my meds and maybe that's because he knew I consulted with several doctors. He knew, because I told him, that if I couldn't stay on my meds, there was no way I was going to get pregnant. I just would never be able to deal with feeling full of symptoms for so long. Being pregnant is hard and having my IC on top of that would never work for me. But maybe that's just me. I do understand though what its like to want to take what your partner says into consideration, but just remember that your body will go through a lot and if your docs say it's ok, I'd go with the professionals opinion.

2) I used to do the same as you, and sometimes I would take less of my dose when I felt OK (usually just cause I forgot). For several years I would only take 1 (maybe 2 pills) instead of 3. I thought I was doing my body and my wallet a favor. After meeting with my new Uro, his opinion is that in the long run, this does not help. He believes that keeping up your regular dose (even when you feel fine) will keep the bladder healthy and that's the best place for it. Again, those are just his thoughts, but I've started following them and it's working for me.

Take care and fine me on FB!
Erica

[Jinny Jean]

Re: Scared. Trying for kids in 1 year!

Hey! I wasn't able to find you on FB! Maybe it would work better for you to find me? I will try again maybe

I think when it comes down to it, it will be my choice of course. I think my partner is just scared because he knows how important pregnancy is and development and all that. We have talked about it a few times since then, and I have discussed it with my Dr who seems to be ok with it as well. So I think if and when I am pregnant, he will be coming to the Dr.s apt to have the doctor reassure him that the risks are low. I think I would also consult a high risk OB as well just to be sure. I would LIKE to not take it but I would like to have a positive pregnancy too. I have heard SO many mixed stories saying that it is OK during pregnancy but NOT breast feeding, and then that it is NOT ok during pregnancy at all.... etc etc... I don't really know what to believe, but I will be sure to talk to my Dr about it at length.

I am mostly sticking with 400mg per day. I go down in dose mostly for the cost. It is hard to keep up with it sometimes. I have not found a good Dr that is knowledgeable with IC yet, it would be nice to talk to someone. It sounds like your Dr is good.

Jenn

Hi Jenn,

I'm going to send you a private message for how to find me on Facebook. I'd love to keep in touch. I'm so glad that you are staying positive and your bag of tricks continue to work. I just wanted to comment on 2 things, I hope you don't mind.

1) Regarding staying on your Elmiron, I think it's important to discuss this with your dr. I hear that you are saying it is your partner that isn't so sure, but please forgive my "mamma bear" defenses, taking your meds is your decision. My husband didn't seem to mind me staying on my meds and maybe that's because he knew I consulted with several doctors. He knew, because I told him, that if I couldn't stay on my meds, there was no way I was going to get pregnant. I just would never be able to deal with feeling full of symptoms for so long. Being pregnant is hard and having my IC on top of that would never work for me. But maybe that's just me. I do understand though what its like to want to take what your partner says into consideration, but just remember that your body will go through a lot and if your docs say it's ok, I'd go with the professionals opinion.

2) I used to do the same as you, and sometimes I would take less of my dose when I felt OK (usually just cause I forgot). For several years I would only take 1 (maybe 2 pills) instead of 3. I thought I was doing my body and my wallet a favor. After meeting with my new Uro, his opinion is that in the long run, this does not help. He believes that keeping up your regular dose (even when you feel fine) will keep the bladder healthy and that's the best place for it. Again, those are just his thoughts, but I've started following them and it's working for me.

Take care and fine me on FB!
Erica

[ICNDonna]

Re: Scared. Trying for kids in 1 year!

I like your idea of communicating with an OB who deals with high risk pregnancies for advice --- you could even do that now so you will know and be more relaxed.

Donna