Poll on Pregnancy Complications with IC

[runningemiles]

Okay we are at the point that we are need to either try to have another child or I need to get on something to help w/ my pain during my cycle and endometriosis. I was wondering if those of you that have been pregnant with IC could answer a few questions:
1. Did your symptoms get worse during and after preganacy?
2. Did you take medications during pregnancy?
3. What type of delivery did you have and do you think it made a difference?

Thanks so much. The info on the website and all of you are so helpful

[dancemomof2]

1. my symptoms quadrupiled
2. I used Visteril and Percocet and Phenegran for extreme flares
3. C section and I don't think it mattered to me.

[mom_in_ma]

I got pregnant by accident last fall (I had an IUD) and it lasted until 16 weeks. I was in remission at the time of the pregnancy and for three months afterwards. My IC returned with a vengence after that. I've not been able to get back into remission. Others have very different experiences. I should add that I'm 38 and starting to go into perimenopause.

[Charisse]

I got pregnant in 06 and did not have an IC diagnosis then. I was towards the end of a 7 year remission at that time and didn't start having problems until 1 year later so I don't think my pregnancy had anything to do with it. I had a miscarriage (including a d&c) and the only thing I noticed was some irritation from the catheter during my d&c. It made peeing the first time afterwards very painful but that was it. And then a year later is when my pain started up again.

[kathleentopor]

I did have a successful pregnancy with IC. At the time I got pregnant I was in remission, due largely to successful Elmiron therapy. When I found out I was pregnant, I stopped taking elmiron. I did not have any bladder pain and remained in remission throughout the pregnancy. For me, hormones have always affected my IC. I think the high estrogen kept my bladder quiet. I also fell into denial and believed that perhaps it had gone away. Boy was I wrong. I had the worst flare ever 3 months after the baby was born (vaginally). I believe this was because of the big drop in hormones. I got back on my meds and slowly was able to get things quiet again. I have read that many patients experience an improvement in their IC with pregnancy, so I hope you get pregnant soon and also have this nice side effect of the pregnancy. Just remember, you will probably return to your baseline, although not any worse, after the pregnancy.

[runningemiles]

That is VERY encouraging...thank you for sharing

[babybjl]

My husband and I would love to start trying to conceive; but we want to get my IC to a manageable level first.

Has anyone on these boards gone through pregnancy with an Interstim? I am most likely going to get an Interstim and would love to hear about other Interstim patients' pregnancy and birth. I am still :confused: and need:help: deciding about this next step.

Thanks for posting this thread!

[BBB]

Ditto on Dance's reply. For me, I just closed my eyes, plugged my nose, and held my breath...then went for baby #2 in as many years.

Good luck! You will do fine.

[windchaser]

i wasnt diagonsed with IC when i had my son but i had the same pain before i got pregnant that i do now, but i can say that during my pregnancy I acctually went into remission no pain at all until a couple months after i had my son, I had him naturally and no meds during pregnancy, but the pregnancy was a shocker cuz i had been told i had a less then 10% chance of getting prego cuz of endo

[Judith56]

I had 2 pregnancies with IC. Both times my symptoms got better buit when I stoped nursing the symptoms returned with a vengence- this was also 25 years ago before they had all the treatments they have now.
I did not take any meds during pregnancy and both times had vaginal deliveries.
My only regret is that due to circumstances not IC related I did not have more children!

[LeeAnn]

1. My symptoms were same as usual (bad!) before getting pregnant. Then around week 8 or so I started feeling better than ever! This is the best I've felt in 11 years of IC. Now that I'm 34 weeks the baby is getting heavy and pressing against my bladder so I'm starting to get uncomfortable, but pressure from the baby's head is *not* as bad as the pain, pressure, and burning of an IC flare. Nowhere near! I know we're all different, but this pregnancy has been the ultimate "cure" for me. I can eat and drink things I haven't in a long time, such as peanuts--I can eat them and not cause a flare. The majority of my day is now pain free.

2. I *AM* on 3 meds: Ditropan 5mg/ 3 times a day. Elmiron 100mg/ 3 times a day and Atarax, 200mg once at night. I tried going off these drugs for about two weeks when I found out I was pregnant and was completely and totally miserable. Once I went back on them, I was back to feeling fabulous. For the first time in 11 years I can actually sit through a movie!!! Without being uncomfortable! :)

3. I haven't delivered yet....due date is March 3. I'm getting really nervous b/c the baby is on the big side. I just had an ultrasound yesterday morning b/c the doctor was concerned that they baby was getting large. It's supposed to weigh around 4.75 lbs at 34 weeks and mine weighs 6.3 lbs. They predict the baby will weigh between 9-10 pounds by 40 weeks. Great! I'm only 5 ft 3.

My doctor specializes in high-risk OB and mostly works with bladder/pelvic pain disorders during pregnancy. He said almost all people with IC report a drastic improvement in symptoms. He thinks the reason is because our immune system is down while pregnant and our bodies stop over-reacting to everything in our environment, such as food and pollens. He believes IC is an autoimmune type disorder and there are other doctors out there who believe this too. I'm not sure what to think, but I know my IC is always worse when pollen counts are high in the Spring and I'm usually very diet sensitive.

I also have endo inside my bladder and my doctor said that one of the reasons I feel so drastically better is b/c pregnancy is the best "treatment" for both problems. Anyway, I wish you luck in making your decision!!

[runningemiles]

Thanks for the helpful information. That is SOOOOO encouraging. I really appreciate it and so glad your pregnancy is going well. Please let us know how delivery goes. Will you try to have it vaginally?

[Charisse]

LeeAnn it's so good to hear from you! How lucky that you have an OB who specializes in IC. Please keep us posted on your pregnancy. I miss your posts!

[Braedley]

1. My symptoms were horrible at the beginning of the pregnancy-about 12-14 weeks in I started to notice a lessening of pressure/frequency and less nausea b/c of the pain

2. I did stay on Elavil & Tylenol Arthritis with my doctor's supervision for the pregnancy as we tried diet alone and it did not work for me unfortunately...I am glad I did b/c it has helped immensely.

3. Due in 4.5 weeks - I will have to let you know then as we have no idea what will come of the delivery - hoping for vaginal birth but if that doesn't work out, we're not opposed to a c-section.

Had 4-5 months of less food sensitivities - could eat things like pineapple, kiwi, pasta sauces (in sm. amts), even some soy sauce on my (veggie) sushi...LeeAnn is right - the pressure of the baby on the bladder at this point is not as bad as some of the flares I've had either...getting a little flared up lately b/c of 'stresses' in getting ready for the little one's arrival but if i rest and keep my fluids up (and follow the diet!) I am usually alright...

good luck!

[Bea]

1. Did your symptoms get worse during and after preganacy? yes and no.. not horrible though. After pregnacy with my son I went into remission for a while.. with my daughter I got worse after
2. Did you take medications during pregnancy?nothing except for my preterm labor
3. What type of delivery did you have and do you think it made a difference?I had two c sections.. but I had a rectal prolapse before my first pregnancy, so I am not allowed to deliver vagionally

[kjd]

I have not given birth myself but my cousin also has IC and she gave birth to her baby boy in November. she told me her pain got so bad she regretted getting pregnant as it was so bad she spent most of her time in bad crying in pain. So continued taking elavil but I think the pressure of the baby on the bladder was just too much for her. she doesnt regret having a beautiful baby boy but tells me she would never get pregnant again as it was so horrific and painful and still hasnt recovered. Its so strange how everyone story is different isnt it?! I must admit she put me off having children as I have vulvodyina as well as IC, so dred to think how much pain I would suffer good luck ladies x

[LeeAnn]

That's terrible. It sounds to me like her IC was poorly controlled. The pressure of the baby's head is honestly nothing compared to pressure from bladder spasms that I have from IC. Bladder spasms are much worse in my opinion. If I forget to take Detrol (which controls the spasms) I am in LOT of pain----pain that feels like terrible terrible crushing pressure (far worse than just the baby's head). I'm just about 37 weeks and my baby is already estimated to weight 8 pounds (per ultrasound) and the baby's head is dropped and engaged into my pelvis. My IC has been very well controlled by meds throughout this pregnancy and obviously, it's more uncomfortable here at the end, but it sounds like her IC wasn't managed all that well. When I read that it made me wonder if she was having bladder spasms related to the IC. Last week I was off Detrol for three days because of insurance problems getting it refilled and it was HORRIBLE pressure-like pain just from three days of going without the med.

[slukic]

I am in 11th week and in semi-remission.
IC wise feeling very good. I eat a lot of oranges and grapes and sour food now.
Sometimes I feel the IC but it goes away.
Pregnancy has definetely been good change for my IC. I should also mention I am off any medication (although I only used MSM)

[kjd]

how come we are all so different?! I have read so many stories of people getting worse during pregnancy and saying "never again", as it caused them to have major flares constantly, but then I read stories from people who say they went into remission!
Its amazing how different we all are even though we have the same illness isnt it.
xx

[sherry6]

For me anyhow. I can't believe we are all so different. I got pregnant during the worst part of my IC. It started to go away around week 8. It was my 4th pregnancy (first 3 pre IC) and absolutely mt easiest.

I went back and forth trying to decide between vaginal or c section delivery. In the end I went with vaginal and I am glad I did. I was induced 4 weeks early because I had preeclampsia ( 4 weeks of bed rest- nothing compared to the inconvenience of IC) and had a super easy delivery. I would choose vaginal if for no other reason than the fact that they can do it without a catheter. Catheters are NOT my friend. Find a doc who will work with you and allow you to give birth without a cath. I had all 4 this way and it CAN be done. Even with an epidural (your very best friend:))

I like to say that my pregnancy regulated my hormones and "knocked out" my IC. For me IC is definately hormone related. After my baby was born I had no IC symptoms for 21/2 years. They did not return until I had to have my ovary removed. NOw my hormones are out of whack again. I am considering another pregnancy to get my body back in gear.

Good luck with your little bundle of joy!

[Charisse]

Please tell me more how you convinced them to do an epidural without a catheter. I didn't think it was possible. I am terrified of the catheter because they flare me for weeks every time. I figure I am screwed when it comes time to give birth for this reason.

[sherry6]

Even before I had IC I had a sensitivity to catheters. When I was in labor with my first child I remember that the catheter hurt worse then my contractions, so I made them take it out. Since then, I just wouldn't even risk it. I had my 2nd and 3rd children with the same doctor. He knew I couldn't tolerate a catheter, so it wasn't even an issue. I don't remember how it worked with #2 and # 3, my doctor made it happen. I vividly remember # 4. I didn't talk to my doctor about it, I just assumed it was possible. So when I went to the hospital, I was just very lucky that I had a nursing staff that was willing to humor me and do all they could to make it work.

Discuss it with your doctor before hand. They can do it if they want to. It all comes down to a few things.

1. You need to have a capable anesthesiologist who can control your epidural. It really isn't that difficult these days. Epidurals have come a really long way. My first one was horrible, and my last one was perfect. They just need to make sure you can still feel your legs a little bit. Most docs will do this anyway because they like you to be able to tell when it is time to push(it's really just pressure, not pain.)

this way you can maneuver yourself well enough to use a bed pan if you need to. If your husband and nurse are willing to help you with this, it is really not a problem.

2. Try to talk your doc into inducing you early if your baby is getting big. My obgyn will induce almost anyone 2 weeks early. They can go even earlier with an amniocentesis. I had mine 4 weeks early after an amnio showed that she was fully developed. She was only 6lbs 2 oz and was a breeze.

If the baby is smaller, you are likely to push for less time. That makes things easier on your bladder (and everything else for that matter;)

Induction these days are easier because they know you don't really have to be to a certain stage before you get your epidural. They used to make you wait until you were dilated far enough, and they don't anymore. They used to think that an epi would stop your contractions, but they know better now. Halelujah!

Let me know if you have any questions! You shouldn't have to deal with a catheter if you don't want to. You will heal quicker and easier from child birth if you don't have to deal with it.

Good luck!

[Charisse]

Oh yeah a bedpan! But can you tell when you have to pee if you are numb? I was of the impression you wouldn't have any bladder sensation. My OB knows about IC and I'm sure it won't be a problem. I am so glad to hear there is another option. I am a certified childbirth educator but I had never heard of them allowing you not to have a catheter but then I've never known anyone who had a valid reason for it like we do. I hope the dr and hospital will be cooperative. I also have flared from catheters everytime even before I had IC but I think I just didn't know I had IC back then. I had a d&c in '06 after my miscarriage and I woke up with the worst urethral pain. I was like why does it hurt to pee? No one told me they were going to put a catheter in. Now I think it is ridiculous that they have to catheterize you for such a short procedure. I could have emptied my bladder myself right beforehand but I guess they like to keep you strapped to the bed as they are wheeling you in to the pre-op. Anyway. . thanks again for sharing all this. I doubt my dr would induce me and from what I know, I don't think I'd want to be induced. Most of the time when you are trying to force your body into labor it takes a lot longer. It sounds like you've been lucky in that you had quicker labors. I would like a smaller baby and less pushing time -that does sound appealing!! But if it means an overall harder more painful labor than I will pass.

[sherry6]

I know what you mean about being induced. I was induced with my first, and I am still convinced that this delivery set the stage for my IC. That first delivery was a nightmare straight from he**. I was induced 10 days early, was in labor for 26 hours, pushed for 3 hours, and had the vacuum on her head for over an hour. My husband thought she was dead when she came out. She was wisked right up to the ICU. It still makes me tear up sometimes when I see people on "a baby story" have some of the symptoms I had and they bring them straight into the operating room for a c section. I had 3 doctors tell me later that any other doctor would have taken her c section hours ago.

SHe was 8 lbs 7 oz 10 days early, and her huge head refused to give way. I think my second induction (4th child) went so much smoother because she was so tiny and my body was familiar with the process;)

And this was 11 years ago. My epidural was a joke. I didn't even realize that an epidural was supposed to totally stop the pain until I had my second child. It was like night and day.

I was only 20 yrs old then and didn't know how to stick up for myself. That could never happen to me now. And epidurals have gotten WAY better.

ANyhow, you can't really feel the urge to pee. But if you can still kind of move your legs, you can try to pee at regular intervals. I remember being surprised that I was peeing because I couldn't feel myself doing it;) You just have to make it a priority to try.

My sensitivity to catheters make instills a nightmare. I won't even try them anymore.

I had my ovary removed in November and I had to talk them into not giving me a cath then as well. It wasn't that big of a deal. I went to the bathroom before the surgery, and then again when I was conscious after surgery. They probably would have allowed you to do this with your D&C if you made certain they knew how sensitive you were. ( I am sorry for your loss:pray:)

It is all up to your doctors and nurses in the end. I hope you get some good ones!

[Charisse]

Sherry thanks again for the info. What a scary thing for your first birth. I think it must be so hard being young and not knowing what to expect. You put all your trust into the professionals knowing what is best for you but I guess it's not always that way is it? Were you induced the first time because they suspected your baby was big? I really like my current OB but being a childbirth educator I have a lot of my own knowledge so I want to be a team player in decision making but most of all I just want to be informed of what they are doing to me and my baby and why. I find a lot of maternity patients are not even informed of what is happening and the drs just make the orders without even discussing it with the patients. So I will be discussing that with my OB and hoping that whoever is on-call for my birth is respectful of those wishes. I don't need a giant birth plan or anything, I just don't want a catheter and I want to be informed of what they are doing! I had no idea they were going to do a catheter with my d&c. Had I known, I would have asked them not to. The pre-op nurses went over everything with me (or so I thought) and then I woke up with such horrible burning when I peed and I was like what in the heck were they doing in my urethra? I requested a copy of my file later on and found out they do a quick in and out catheter to drain the bladder right before the procedure. I am sure had I asked for this not to be done that they would have accommodated. But then again I was not informed and the thought never even crossed my mind. Plus I didn't know I had IC then. Thanks again for the information on this. Hopefully if I get an epidural they would do a light enough one to where I could have some sensation. I know a couple of the hospitals don't do them very light because they find the patients do not get enough relief from them. A skilled anesthesiologist is key!!

[ABliske]

1. slightly more urgence and frequency, no remission of pain
2. MS contin, I try to only take 15 mg/ day
3. I am hoping for a vaginal birth. (I'm 22 weeks pregnant!)

[shvlnose]

1) my IC stayed the same while pregnant. I had to watch my diet more than before pregnancy. Frequency was increased. Pain was occassionally increased but not TOO bad for the most part. However, now that I'm breastfeeding - it's much better.

2) I did take meds while pregnant - Elmiron, Ditropan XL, Prevacid, and Ambien. I stopped taking the ambien about 4 weeks before I delivered. At that point I wasn't sleeping much anyway, so the "rebound" insomnia was not super noticable. I also took Tylenol #3 as needed for pain and ended up only really needing it a few times (mosly when I didn't watch my diet).

3) I had a c-section - not by my choice; I would have prefered a vaginal delivery. Everything is fine with my baby (no defects or obvious developmental problems). There were complications with my labor.

I'm so happy that I did it. We're even considering trying for another in a year or so if my pain levels are still under control.

Hope that helps!
Aly

[blondie19]

I'm so glad you posted this about the catheter. I am 11 weeks with my 2nd child now. My first son is 5. I've had IC for over 10 years, but it wasn't bad until after I had my son. I had him 5 weeks early due to possible HELLPs. I kept telling the nurses that something didn't feel right with the catheter. They would check it and tell me everything was okay. After the doctor broke my water and my son's head started to come down, I could barely feel the contractions...all I felt was the catheter digging into the wall of my bladder. I kept telling them over and over that something wasn't right. It wasn't until blood starting shooting out of the catheter that someone actually listened to me. Then they got scared and took me straight into surgery for a section. My bladder bled for a solid week after I delivered him. This time, I'm going to ask that they not give me the catheter until absolutely necessary before going in for the section.

[Charisse]

Oh my gosh reading this is making me sick. You poor thing! I was found to have most of my inflammation in my urethra so a catheter is awful for me. It sounds like there are ways around it!

[Laura78]

Okay we are at the point that we are need to either try to have another child or I need to get on something to help w/ my pain during my cycle and endometriosis. I was wondering if those of you that have been pregnant with IC could answer a few questions:
1. Did your symptoms get worse during and after preganacy?
2. Did you take medications during pregnancy?
3. What type of delivery did you have and do you think it made a difference?

Thanks so much. The info on the website and all of you are so helpful

1. My IC went into remission w/ #1. She was a natural conception. #2 was IVF, far more stressful, had to go off drugs many months prior, etc. Basically, I think stress & IVF drugs played a part. I'm still not in remission, though.

2. I did not take Elmiron w/ her, nor will I w/ #2. I've been taking Prelief, Benadryl & I will take Pyridium if it gets to that point.

3. I'm a madatory c-section for both. Unfortunately, I have no basis for comparison. The first c-section didn't seem to make things worse. Although I'm more nervous this time around b/c I haven't been in remission. Catheters are not my friend.

One thing I can say is that breastfeeding was so good for my IC. I stopped & it came back almost immediately. I'm not shoving bf down anyone's throat at all. That's just how it worked out for me.