pregnancy with ic?

[Melis 26]

Hi. I am just wondering how many of you have gone through preg. with ic. Please share your experiences because I want a good idea of what it's going to be like during and/or after. Someone on here said they had pain after.....a lot of pain, but they had none during pg. Also, I'm worried about the trying. That's going to be tough. I have an almost zero sex drive most of the time. Usually if I'm experiencing pain in my bladder than I keep away from sex, but I hardly ever feel like it in general. I don't know why. I think it's the association with infections, pain/discomfort and stuff. Who knows. Anyway, please share on this topic. ANy info would be appreciated. We're going to start trying in January!!!!! Thanks. :)

Melis

[SelenaandAj'smommy]

Hello Melis. I went through actually 2 pregnancys with ic. The first one in 1999, but was not dx yet, and had only frequency-so i thought it was just related to pregnacy bathroom trips.

The second in 2000 with my second daughter A.J. When i was officially dx, after experianceing off and on symptoms since 1997. For me, my pregnancy was good, except for her prematurity, but my ic was a monster during that time. Everyone is different.

Some have no pain, others do. Some say they feel better with pregnancy and symptoms, others it makes it worse.

good luck, and i hope you are pain free!

[jaime15]

Well I went through a IC pregnancy in 2002.
My son was born 2 months early. Not related to IC. I had one UTI and two flares while being pregnant.
I also had a great remission for 5 months afterwards. That was a blessing. Especially when you have to get up so often at night.
With or without pain, it's a great experience being a Mom. I wouldn't change anything.
Oh some moms have a remission the whole time they breastfeed. Have you read Lesa's journal yet? It might give you a heads up on pregnancy also....Good luck and can't wait to hear the news!

[Melis 26]

Sorry you guys had some pain during your pgs. :( It's not fair. I'll deal with it one day at a time when I get pg in jan, if I get pain or urgency. THanks for replying!!!!! :)

[ICNDonna]

If you go to the Browse Our Site pull-down menu at the top of this page, you'll find the link to ICN Lesa's Pregnancy journal.

Donna

[KarenNielsen]

I am currently in the midst of my 2nd IC pregnancy with no IC-related problems. 1st pregnancy sucked anyway due to vomitting all day every day for months 2 thru 9. there are no guarantees with pregnancy! And the baby is ALWAYS worth the trouble. From watching this topic awhile it seems some women will go into remission, some get worse, some like me stay the same. I wouldn't try to anticipate too much, just take it one day at a time when it happens. Wishing you a quick easy conception, easy pregnancy and labor, and a happy healthy child! --k hi

[erinaj1997]

Hi Melis,
I was diagnosed a few months or so ago. I was having symptoms before my pregnancy, but they thought I just had s stubborn UTI at that point. I noticed though that while I was pregnant I had NO symptoms. I thought it had cleared up. Unfortunately, I miscaried at 5 weeks. 1 1/2 months later, my symptoms reappeared. That was when i was finally diagnosed. Now I'm trying to decide if I should go back on the pill (sypmtoms started after going off) or if I should try to get pregnant again. I feel I should find my triggers before getting pregnant though since I won't be able to use my beloved Elmiron.

Good luck to you!! -Erin

[KarenNielsen]

erinaj, a simplistic explanation I have heard about how 'the pill' works, is that you do not ovulate because the hormones in the pill 'fake' your body into thinking you are already pregnant. In other words, pill hormones are very similar to pregnancy hormones...and YOU had no symptoms while on the pill and no symptoms while pregnant! The reason I am bringing this up is, I suspect you will be VERY comfortable if you either get pregnant again or go on the pill again, doesn't matter which but I am betting either one will help you more than the elmiron. This is just my guess from reading your brief history above. --k.

[erinaj1997]

Hi Karen,

I was thinking the same thing. As things will go, I got my period this morning. I took my pill. I have an appointment with a Dr. Hanno at he Univ. of Penn. in December. I think the best thing to do would be not pregnant in case he wants to do tests. I'm only recently dx, so I'm still hoing it's something else. Let you all know how the pill helps.

-Erin

[Jaime17]

Hi Melis,

I only now going into my 10th week of pregnancy, so I can't say what it's going to be like for the duration, but so far, so good. I was dx'd in early August and started Elmiron immediately. I started to see improvement after just a couple weeks. Then we found out I was pregnant in early October...complete suprise! I stopped taking the Elmiron and didn't notice any radical return of symptoms. I have noticed since I started the prenatal vitamin (I'm taking Prenate GT) that I have a little more frequency and some pain occassionally either when I go or right after I go but I also think it's related to how much water I drink...if I get the least bit dehydrated, my IC lets me know about it! But it's definitely tolerable. Also, I have been cheating on the IC diet left and right without serious repurcussions (blaming that on the pregnancy cravings)!

When I first found out about the pregnancy, I was devastated...I just didn't think I'd be able to handle it on top of the IC. But then I started to spot and things were touch and go for about 2 weeks. It scared me badly and made me realize how much I wanted this pregnancy, planned or not, IC or not! When I saw my baby's heartbeat on ultrasound I realized no matter what, it's going to be worth it! I still get scared sometimes, but it's easier to take the symptoms when you know IC isn't your #1 priority.

Good luck in figuring out what's best for you! Remember, IC is something you have, not who you are -- don't let it define your life!

Jaime

[Alleycat]

Hi there. Im in my 9th week of pregnancy so I too cant really say if I will get worse or not. My URO told me it gets better during pregnancy....but everyone is different so Im not counting too much on that. I have frequency but that is because of the pregnancy. I have had a little flare here and there where it burns worse than usual, but I just lay down and take it easy, and that is usually after I get through using the bathroom and it lasts only for a short amount of time. I was on Elmiron before but stopped it way before I got pg...just seeing how I would respond without it, I did really good and havent taken anything since. But like the others said, Planned or not, IC or not, nothing will get in the way of the joy you will have while being pregnant. Good luck in Jan and I will keep u in my thoughts. Take care. baby

~Alison

[Melis 26]

Thanks everyone!!!! :) I'm soooooooo excited to get preg. and have a baby and I know it'll be worth it. It sounds like everyone has a different reaction so I'll just have to see. If only IC came with an instructional pamphlet. Well........it kind of does, but i mean a better one! lmao

Melis

[Rainbird]

Hi Melis 26, When You are ready to try get yourself an ovulation predictor kit which you can get at any store and just try at your peak times to get pregnant. My friend did that and it worked really well for her. With my first pregnancy my symptoms completely disappeared until he was 2 or 3 with my second one I suffered into my 3rd month off and on but the symptoms went away after that and didn't start up again until he was about 3 months old.

[Melis 26]

:) Thanks rainbird.

[Leaping Frog]

Melis, I don't mean to be bummer girl, but I have a different story with IC and being pregnant. For me it has been the worst experience of my life. First off, I have IC really bad - so I assume that makes things worse off to begin with. But, my IC is totally controlled by my diet - which at this point is white rice and every once in a while steak, chicken, lettuce and carrots. Which, as a person supporting 2 humans leaves you hungry ALL the time. I spend 50% of my life starving and the other 50% in terrible pain (that is because I actually decide to eat). Forget trying to satisfy any normal craving of a pregnant woman! I actually and literally dream about food every night - maybe the brain can't tell the difference between a dream and reality. In terms of DR support - FORGET IT. In my experence they tell you "go off all your meds and see me in 10 months". No one wants to touch you! My OB is great - but does not get IC. I have to remind him EVERY visit I can't take prenatals, I can't eat more food, I keep losing weight because food is the enemy in my life right now. I know this is bad for the baby, but when I eat my bladder hurts so bad I want to die - how good is that for the baby? To top it all off I have placenta previa and continue to have bleeding episodes where I end up in the ER. There, they insert a cath, which leaves me in worse pain for weeks. I beg them not to, but the only answer I get is "well, no one likes to get a cath". People just don't get IC!
In the end I would say this...If you really want a biological baby then do it. But, be aware that you COULD have a perfect 10 months, or you could struggle everyday with pain. So, be prepared. I was not. Mentally, I was not ready to be in this place. I was not ready to give up my meds, my food, and my life. Am I dealing with it? Yes. But I spend my days wondering what kind of a healthy baby can come from a mostly rice diet...I will end on this... If you want a baby and you are not sure how you would cope with almost a year of pain and uncertainty adoption may be something to think about. But, if you are set on having a biological child the one thing I have learned through my IC journey is that you can endure just about anything. If you want it bad enough, you can do it and in the end you will be glad you did. Just be well informed and prepared going in to it.

[KarenNielsen]

LeapingFrog, I am sorry, that sucks. Just a word about the cath in ER: You don't have to beg, it is your body, whether they like it or not. Medical personnel are subject to charges of assault and battery just like everyone else, the legal definition of assault being "to threaten to touch a person or their clothing without consent", and the legal definition of battery being, "to touch a person or their clothing without consent". I advise all medical personnel that they are not cathing me, and offer to sign an 'Against Medical Advice' or refusal form. Do this and you will never be cathed in the ER again.
My 1st baby, I had severe, constant nausea and vomitting for 9 months and thus my diet was probably as poor as yours - with weight loss too. 1st trimester I lived on lemon sherbert and lemon soda, after that on veggie burgers and canned lite fruit salad (the only meal I kept down) I could not take prenatals either - wound up giving birth to a healthy, 8lb 11 oz baby. It's amazing, they suck whatever they need right out of you. I am telling you this because I am sure you are worried about your baby's health, just trying to reduce your stress which must be terrible right now.
Anyway, the pregnancy was so terrible, I procrastinated almost 6 years before doing it again. But the kid was so awesome, I AM doing it again at the moment. Being a woman always poses some dilemmas. Best Wishes, K.

[Leaping Frog]

K, Thanks for the encouragement! It is wonderful to hear that healthy babies can come from such a terrible diet. My first (pre-IC) baby was "fed" wonderfully (I gained 40 pounds!!!). This one is so different. I give you tons of credit for doing it again. I AM DONE!!!! The hubby is getting the big V.

Today I went to a high-risk neo-natal doc. He told me that if I lost any more weight he was going to hook me up to a permanent IV for calories. I asked him if we could try some type of pain med for pain so I could try to eat. He gave me URISPAS and Tylenol with Codeine. I have never been on drugs; I have always treated my IC by diet control and with MSM. I took one URISPAS today and my bladder is ON FIRE. Anyone have any experience with this drug????? I have not taken the Codeine. I want this flare to go away and then try it so I can tell if that, too, is going to bother me.

I know in the end this baby will be TOTALLY worth it but BOY is this a tough road!

[KarenNielsen]

LF, I tried that med once, it neither hurt nor helped, but then again I never had to live on rice either, you obviously have a VERY sensitive bladder. Just one more little suggestion? Have you ever tried to dilute the irritants out of your pee, like by having one little serving of healthy food chased with several glasses of water? I follow no dietary restrictions but drink a TON of plain water. you might wish to try it - right now it might also wash the rest of that urispas out of your system! -K

[Crystal J. Skidmore]

Leaping Frog how far along are you?
I am a birth doula, and a new mom to a healhty perfect normal 10 week old baby.

I took percocet 5 and percocet 10 during pregnancy and tylenol # 3
TAKE THE TYLENOL 3 if that doesnt work get percocet.
SAFE! for the baby you sound so miserable.
The med will NOT hurt the baby. it has a very small half life and leaves your system very fast.
dont be in pain. dont be miserable.
I was like you. I never took one single pill before other than tylenol worried about meds.
then i got IC and was pregnant.
TAKE the med's they give you.
It will make you feel so much better.
If you are worried about the cost.
tyleol # 3 is very cheap under $15 for 30 pills if you get generic. I think it might be 11$ i 't just cant remeber right now.
To the other poster.
Pregnancy is wonderful.... such a blessing. And pain meds are safe while pregnant so that is a relief to know.
I wish you all the luck while getting pregnant.
Leaping Frog. I think you should consdier getting a birth doula, someone who knows about IC and if they dont know about it. Have them learn for your birth....
My doula learned so much about IC for my birth...
BIRTH PLAN
make sure in your birth plan you mention no cath.
you do not ever have to get a cath.
if they need sterile urine. tell them to watch you while you do it and you will clean your self and make sure to get a clean catch.
that is what I had to do.
no sense in being in pain. caths are hell, no one likes getting one. but IC patients are just not able to tolerate them (some IC patientS) personally I would rather be dead than have an cath not knocked out....
email me if you need some more support or have questions.
Hugs