IC returns with pregnancy after 4 year remission

[snslife]

I think it depends on your doctor. Mine won't let me take it but I know others who have. From my research it's a class B so it has the same risks as Tylenol. You might be lucky and have no symptoms at all!
I changed to high risk Obgyn Who is also a urologist and did my first bladder instill on Thursday. I will be getting then every week from now on. I'd much rather take the medications I took in the past but they won't allow any if it.
But in the end it will be all worth it. Good Luck. 😊

[Kyeventer7]

Hey guys, I have a question. I am not pregnant, but in the future plan on having kids. I am on Elmiron currently and have been for a few years normally with no symptoms. It scares me that I will have my symptoms worsen when I do decide to have kids if I go off of Elmiron Is it possiblt to stay on Elmiron and have more managable symptoms? Has anyone had luck with this or is is mandatory to go off of it when pregnant? I have often thought about staying on it..

Jenn

I wish I could give you a contest answer. As someone else said, its possible you may not have any problems at all. I was in remission for 5 years or more and during that time had my first child, no IC problems during that pregnancy. Except for the 3rd trimester, had issues peeing all the time and sometimes couldn't pee but I honestly think that was more the baby lying on my bladder than the IC. Now here I am though pregnant with my second child and my symptoms came back for a few weeks worse than I ever had before. Every pregnancy is different!! My doctor put me back on emilron and amitripyline and is allowing me to take it during my whole pregnancy. I do plan to try to get off the amitripyline but will stay on the emilron. Elmiron is a category B so it is safe for pregnancy.

[Jinny Jean]

That makes me feel better.. of course your right it will all worth it in the end, and I can't wait to be a mom, so not even IC will stop that from happening, but I do want to be as comfortable as possible during haha. I only take 2 pills per day (Elmiron), sometimes three and have been doing that for about a year or so now. I ussually have no symptoms at all and it works well for me. I don't over do it either though, but I do eat normally ( my normal) and have for about 2 years. I stay away from the triggers though, although I tend to have no problems with chocolate.

How many Elmiron are you able to take?

I hope that your symptoms are only worse for a short period and go away again after your baby arrives!

I have heard that if you cannot take birth control because it makes your IC flare, that you willl have trouble during pregnancy, I do not know if that is 100 percent accurate or not, but I hope that is not the case, as I cannot take birth control at all, and have not for years now because of the flares I would get while being on it. It is amazing how everyone is so different, how every pregnancy is different and how every medication has a different effect...

Good luck

Jenn

[Kyeventer7]

Sounds like you have been very lucky with your IC as I have been too until recently. I was not living like an IC patient prior to about a month ago. I'm not sure what caused my flare, I can only assume its the pregnancy since I was fine before and yes I'm hoping too all will be normal again after baby comes. You're right it is all worth it though! Although, the 3rd trimester was pretty bad with my 1st pregnancy. It felt like a flare but it instantly went away once my daughter was born. Hoping it won't be so bad this time!

I'm taking 4 pills a day of elmiron. My urologist prescribed it and had it ok'd by my OB. Like I said I hope to go off the amitripyline in a month or so. However what I've read about that is since I started taking it at the end of my 1st trimester that the risks are low since the baby's organs were already developed. I also take a low dose of 10mg.

Good luck to you!

[Kyeventer7]

Jenny Jean, sorry I meant to comment on birth control. I took it for years and had no issues at all. A lot of that may have had to do with the fact I was in remission and of course everyone is different!

[Jinny Jean]

Re: IC returns with pregnancy after 4 year remission

were you both ok? Looking for some advice... Not pregnant yet.. but I am planning on it soon! I know people who are doing well don't post... including me generally. I remember this post a few years ago thinking .. "man being a mom is still pretty far off for me, but I have lots of time to prepare...." I would almost never think about it. Anyways the time is here now, well it will be in about a year (so not quite yet) but we do have somewhat of a date to start trying. So here I am.... trying to find hope that I wont be a complete basket case when I do get pregnant. I understand it will probably be very hard in the first trimester.. and it scares me SO much. But I want a family more than anything and I will do whatever I have to.

I have been in remission (well I have manageable symptoms, which I consider to be my remission) for 5 years, just like you Kyeventer. and it will be 6 by the time I try to have a baby.. so pretty long time so be out of the loop as far as my bladder goes... and the frequency.... that part was the absolute worst. I can only imagine the HCG is probably brutal. I have been off birth control for 5 years because I stopped taking it when I was flaring when I was first having problems, and just never went back on. My dr says that if I go back on it, that will be one way to find out how its gonna be when I am pregnant. Yeah no thanks. That scares me...

I understand pregnancy might be hard.. and I can try and accept that if I can have a beautiful healthy baby... but I want to know if after that insanity and peeing I can be a normal mom and take my Elmiron and be ok again. Is that likely? Did that happen for you guys?

I have written a few people private messages but I haven't really gotten any responses other than one, anyone else have good stories or advice??

Help!

Jenn

[luvspugs]

Re: IC returns with pregnancy after 4 year remission

I was 2 years symptom free and had a flare 6 weeks ago. I thought it was due to a reduction in Elmiron, but I am now convinced that hormones are the culprit. I am 50 and just had 2 periods at the 21 day mark. Due to impending menopause, my periods are erratic, but I have never had 2 that occured 21 days apart. I am symptom free again, but it will be interesting to see if I go into a flare just prior to my next period.

[rshell84]

Re: IC returns with pregnancy after 4 year remission

were you both ok? Looking for some advice... Not pregnant yet.. but I am planning on it soon! I know people who are doing well don't post... including me generally. I remember this post a few years ago thinking .. "man being a mom is still pretty far off for me, but I have lots of time to prepare...." I would almost never think about it. Anyways the time is here now, well it will be in about a year (so not quite yet) but we do have somewhat of a date to start trying. So here I am.... trying to find hope that I wont be a complete basket case when I do get pregnant. I understand it will probably be very hard in the first trimester.. and it scares me SO much. But I want a family more than anything and I will do whatever I have to.

I have been in remission (well I have manageable symptoms, which I consider to be my remission) for 5 years, just like you Kyeventer. and it will be 6 by the time I try to have a baby.. so pretty long time so be out of the loop as far as my bladder goes... and the frequency.... that part was the absolute worst. I can only imagine the HCG is probably brutal. I have been off birth control for 5 years because I stopped taking it when I was flaring when I was first having problems, and just never went back on. My dr says that if I go back on it, that will be one way to find out how its gonna be when I am pregnant. Yeah no thanks. That scares me...

I understand pregnancy might be hard.. and I can try and accept that if I can have a beautiful healthy baby... but I want to know if after that insanity and peeing I can be a normal mom and take my Elmiron and be ok again. Is that likely? Did that happen for you guys?

I have written a few people private messages but I haven't really gotten any responses other than one, anyone else have good stories or advice??

Help!

Jenn

Hi Jenn,
I am also one who affected by hormones very much. CANNOT tolerate birth control at all anymore. I was just diagnosed earlier this year but sometimes wonder if I've had it longer. I have two children and was fine the whole pregnancy although I'm not 100% sure if I had IC during the pregnancies or if it was in a remissive state perhaps.
I have to disagree with your OB about saying being in birth control would show you what pregnancy would be like. First of all, most birth control are synthetic man made hormones, not natural like ours. It just may be that your body doesn't like synthetic hormones. This is one possible theory I have for myself.
Another things is birth control pills shut down the production of your own natural hormones and keep you at an even steady hormone level of whatever synthetic hormone combination the pill is. I "get" her saying that only in the sense that the some pills "trick" your body to think it's pregnant, but it is not the same as a natural real pregnancy and different pills act in different ways.
I hope more will chime in to give you answers based off their experiences. I do understand you being worried since you are effected by hormones but we cant let IC rule our lives. Congratulations on trying to start a family!

[Jinny Jean]

Re: IC returns with pregnancy after 4 year remission

Hi Jenn,
I am also one who affected by hormones very much. CANNOT tolerate birth control at all anymore. I was just diagnosed earlier this year but sometimes wonder if I've had it longer. I have two children and was fine the whole pregnancy although I'm not 100% sure if I had IC during the pregnancies or if it was in a remissive state perhaps.
I have to disagree with your OB about saying being in birth control would show you what pregnancy would be like. First of all, most birth control are synthetic man made hormones, not natural like ours. It just may be that your body doesn't like synthetic hormones. This is one possible theory I have for myself.
Another things is birth control pills shut down the production of your own natural hormones and keep you at an even steady hormone level of whatever synthetic hormone combination the pill is. I "get" her saying that only in the sense that the some pills "trick" your body to think it's pregnant, but it is not the same as a natural real pregnancy and different pills act in different ways.
I hope more will chime in to give you answers based off their experiences. I do understand you being worried since you are effected by hormones but we cant let IC rule our lives. Congratulations on trying to start a family!

Thank you so much for responding!! I have often wondered of that is the case about the birth control...I know that it is synthetic... and I was on it ten years, and even have a hunch that it may have contributed to my IC I think my body was just so unhealthy when I was first diagnosed that everything contributed really... I feel sad that I have this... but I know we all didn't ask for it.. its just something that we have to get through. I have no ide what pregnancy hormones will be like, but I am only hoping that I can get through them. I am trying to prepare way ahead of time so that I know what I am in for, although I am not sure anything can prepare me.

Hopefully I can have a few more responses

[rshell84]

Re: IC returns with pregnancy after 4 year remission

Thank you so much for responding!! I have often wondered of that is the case about the birth control...I know that it is synthetic... and I was on it ten years, and even have a hunch that it may have contributed to my IC I think my body was just so unhealthy when I was first diagnosed that everything contributed really... I feel sad that I have this... but I know we all didn't ask for it.. its just something that we have to get through. I have no ide what pregnancy hormones will be like, but I am only hoping that I can get through them. I am trying to prepare way ahead of time so that I know what I am in for, although I am not sure anything can prepare me.

Hopefully I can have a few more responses

I too was on birth control about ten years and have wondered if it has contributed to my IC or just screwed up my hormones somehow in general. My older sister is also showing signs of IC and has been on birth control a long time as well.....puzzle pieces.
So many different reasons. It would be so nice to know exactly how we will react to things wouldn't it? I have heard that some OB's will allow some ICers to stay on Elmiron while pregnant so maybe that will be an option for you. And you might be one that is even better during pregnancy. I will keep you in my thoughts and prayers along your journey.

[Jinny Jean]

Re: IC returns with pregnancy after 4 year remission

Thank you so much! I really appreciate every response, honestly... I feel like no one else gets it.. so I am really happy I can share here. I have been really panicked the last few days... and I am just starting to calm down and realize that I cant control anything... and that regardless being a mom is one of the most important thing to me ever... so I will get through whatever I have too... and also that I WAS able to get my IC under control and the chances of me being able to do that again are hopefully good. SO I am just trying to cross my fingers and hope for the best. Thanks for keeping me in your prayers.

[Rubes]

Re: IC returns with pregnancy after 4 year remission

Hey Jinny - For what it's worth, I was diagnosed about 7 years ago (after I had already had 2 kids). I was TERRIFIED to get pregnant again for the same reasons you are. Turns out, for me, after those first 2 kids, getting pregnant wasn't the problem. It was staying pregnant. I have had 7 miscarriages since my 2nd was born. We adopted another child, and then maybe 5 years after that, I ended up getting pregnant, and didn't miscarry. I had a long talk with my perinatologist about my IC meds. At that point, my IC was pretty well controlled. I was taking 300 mg of Elmiron a day, and prosed DS as needed. When I had flares, very infrequently, I went back on Elavil temporarily, which helped me the most. My flares are always related to hormones, so I was really afraid that the hormones of pregnancy would mess me up. My doctors said I COULD stay on Elmiron if I wanted, but were not comfortable with Elavil. I ended up going off all medicines and was actually fine my first trimester. The HcG increase did bother me a little in terms of frequency, but it was no more than it had been with my other pregnancies - it's just the terror that lies in the back of your mind wondering if it was pregnancy or the IC. I had a VERY minor flare at the beginning of my second trimester, but it was NOTHING like a "normal" flare - just a tiny bit of increased discomfort, and then was fine the rest of my pregnancy. I ended up flaring right after my son was born (but I think it was related to a UTI that I got probably during giving birth from the catheter). It was very easy to get things back under control, and my son's pediatrician was totally fine with me taking Elavil while nursing. (The book "Medicine and Mother's Milk" is awesome if you are considering nursing). (My milk never really increased enough to feed him, so it ended up being a non issue, but that's an aside).

All this is to say - most people do BETTER while pregnant. There is always the rare person who doesn't do well, but by and large, from my research, and from what my urologist tells me, pregnancy is kind to IC'ers. Please feel free to PM me if you have any other questions or want clarification on anything. I'm happy to help!

[Jinny Jean]

Re: IC returns with pregnancy after 4 year remission

Thank you so much Rubes. That is exactly what I wanted to come home to after work <3 I have been able to worry a little less now that I have talked to a few wonderful people on here and through email, and I appreciate each and everyone one of you who took the time to reach out and reassure me.

I am so glad that you had a great pregnancy and were able to GET pregnant and have a healthy baby I have been told by my Dr that I may do ok as well.... and that she would be ok with me staying on Elmiron .. so that is reassuring. I will probably try my best to go off all meds though, but if I do find I am flaring like crazy I will try and go back on. It is really reassuring to know that you were able to get it back under control though and feel good. I think that is probably my main concern.... and of course I want to be able to enjoy it as well without the severe discomfort .. so I am crossing my fingers and toes that it will be enjoyable and manageable

There is just so much to think about! I am not even pregnant yet!! lol.... It is kind of cool... my partner gets more and more excited as time goes on... the little things he says... last night he brought it up, and said "when we have kids, we should have them both right away... like one and then another... he looked like a kid on Christmas... it was so cute.... I honestly want nothing more than to have a baby with him. He is the love of my life, and he will be an incredible dad. I am just SO excited I am glad though that we are waiting a little bit so I can prepare ( I told him that if my bladder goes haywire I would want to get it back under control before number two is even thought of lol...) and also so we can buy a house... I am also going to Australia for a month in ten days as well!! So lots going on...Still can't believe it.

I have happy tears in my eyes as I write this... thank you so much. I would love to write you and ask you more questions!! Do you have an email? Facebook?

Hey Jinny - For what it's worth, I was diagnosed about 7 years ago (after I had already had 2 kids). I was TERRIFIED to get pregnant again for the same reasons you are. Turns out, for me, after those first 2 kids, getting pregnant wasn't the problem. It was staying pregnant. I have had 7 miscarriages since my 2nd was born. We adopted another child, and then maybe 5 years after that, I ended up getting pregnant, and didn't miscarry. I had a long talk with my perinatologist about my IC meds. At that point, my IC was pretty well controlled. I was taking 300 mg of Elmiron a day, and prosed DS as needed. When I had flares, very infrequently, I went back on Elavil temporarily, which helped me the most. My flares are always related to hormones, so I was really afraid that the hormones of pregnancy would mess me up. My doctors said I COULD stay on Elmiron if I wanted, but were not comfortable with Elavil. I ended up going off all medicines and was actually fine my first trimester. The HcG increase did bother me a little in terms of frequency, but it was no more than it had been with my other pregnancies - it's just the terror that lies in the back of your mind wondering if it was pregnancy or the IC. I had a VERY minor flare at the beginning of my second trimester, but it was NOTHING like a "normal" flare - just a tiny bit of increased discomfort, and then was fine the rest of my pregnancy. I ended up flaring right after my son was born (but I think it was related to a UTI that I got probably during giving birth from the catheter). It was very easy to get things back under control, and my son's pediatrician was totally fine with me taking Elavil while nursing. (The book "Medicine and Mother's Milk" is awesome if you are considering nursing). (My milk never really increased enough to feed him, so it ended up being a non issue, but that's an aside).

All this is to say - most people do BETTER while pregnant. There is always the rare person who doesn't do well, but by and large, from my research, and from what my urologist tells me, pregnancy is kind to IC'ers. Please feel free to PM me if you have any other questions or want clarification on anything. I'm happy to help!

[Rubes]

Re: IC returns with pregnancy after 4 year remission

Just sent you a PM, Jinny.

[mel87]

Re: IC returns with pregnancy after 4 year remission

I'm so frightened my ic resulted in a uti and now I keep getting recurring utis will it ever end