Remission and pregnancy question

[stacey79]

I know every ICer hopes to go into remission while pregnant, but we all know that doesn't happen for everyone. My question is whether flare-free periods might indicate an IC-free pregnancy. I may have a few symptoms before my period starts, but generally once it's here, I'm OK. FOr example, last month I had a UTI and my period at the same time and it wasn't nearly as bad as a UTI alone. This month I had a bad sore throat and cold during my period, so I had a few bad-for-me drinks (Kool-Aid, cherry Icees, Sprite) and they didn't really seem to bother me. I know it's all speculation, but do you think that could be a sign of things to come whe prego or is it completely unrelated?

(BTW, not prego, yet, but thinking about it within the next couple of years.)

[ICNJess]

IMHO, I think you have a good chance of having a nice pregnancy. I flare around my period, during my period, and when on birth control. My pregnancy was a mix...I had a nice remission period but I also had a painful period--but I attribute it to the fact that my baby was complete breech and had one foot literally on my bladder! And I tell you, that girl could kick like a mule! Every time she'd kick (she'd go nonstop for like a 5 minute interval, hubby would put his hand on my tummy and feel all the activity in amazement LOL) and each time I'd leak urine. I ended up wearing bladder control pads for my pregnancy.

Anyway, I think you have a good chance of having a good pregnancy.

So I take it we have the beginnings of baby fever? LOL. Gotta love that biological clock!

Hugs,
Jess

[shvlnose]

I hate to say this, but it's probably pretty unrelated. Prior to being pregnant I had really good IC symptom control - didn't use a lot of pain meds at all. Rarely had bad flares. Was able to eat a lot of "questionable" foods. I was at a point where most of my IC problems occurred the day before my period started and the first 3 days of it. So I was in regular pain roughly 4 days a month, with 1 or 2 others on random mid-cycle days.

Once pregnant I started to flare immediately (with in the first 7 days post fertilization). Not hugely bad... but definitely worse than before. I now have to be more careful with foods and/or activities than I ever was prior to this.

I've see other people post that they had moderate/sever IC and finally found relief during pregnancy. This is another of those truly annoying "It really just depends on you, your body, your disease process, and your individual pregnancy" things. I don't think there is any reliabe way to predict how your body will react.

The best thing is to talk to your doctors (all of them) and work out a plan: "So if I'm pregnant and in pain, what are my options? If I'm doing well and don't need as many meds... what do we do then and what do I eliminate first?"

Good luck!
Aly

[stacey79]

Everything with IC is so unpredictable and tricky. It would be easier if there were a set formula for all of us! :)

I know there's no way to predict what will happen. I just was noticing how my period really does seem to help my symptoms, which is quite odd. A few years ago, it was just the opposite. I had horrible pain with my periods, but the last couple of years, it's been good. (I almost hate to say that.) So, I'm guessing it's still sort of hit or miss with pregnancy.

I do have a bit of baby fever, but we are still on the waiting path. Especially since we don't have pregnancy coverage right now, since my hubby is without a job. Of course having my first, beautiful neice born a week and half ago might also have something to do with it! :)

[ICNJess]

Stacey,

My IC and hormone fluctuations are related, I think. When I'm on birth control my IC is terrible. I always flare with a correlation to my period, too. I think if you can tune into your body and your IC you could probably have a slight idea of how pregnancy might go. My IC was pretty manageable for awhile and then it flared up when I was pregnant, and I think it's due to a few things like hormone fluctuations and the baby putting pressure on your bladder, etc.

Bottom line is you're right, you really won't know until it happens but I think if you know your body well and your IC well you might be able to get a clue as to how you might react, if that makes sense.

[stacey79]

Good point, Jess. I know my major symptoms came after going off the Depo Provera shots and starting the patch. Now that I'm on birth control pills, my symptoms are at their best. I'm not sure what they'll do when I go off the pill. When that time comes, I will definitely pay attention. That might help me get some indication as well.

THe whole thing is awfully tricky.

[melanie626]

Stacey-
So hard to say, I am not a pregnancy remission story, just the opposite, but I am also not a "typical IC Pt" in that I have had it for years and lived OK and then for some reason over 2 years ago it got bad and has never really relented (all after a flu and UTI). So now I have mod/severe disease and my pregnancy has sucked.

I agree with Alyison as we both have learned, plan, plan, plan. Get an MD on board, set up a "worst case scenario" that everyone is happy with and go forth. That way you aren't in the cold if things go bad and if not, then you neve rhad to use it! It took me many MD consults and visits and even finding a new MD at 8 weeks and it has been much more tolerable (because at least I have a plan in place).

Enjoy your niece, good luck.

[mom_in_ma]

Hmmm...I'm not sure if this is the type of information you want to hear. I was in remission before I got pregnant last year (with an IUD!). I had only the typical pregnancy bladder symptoms for the first few months and then it kicked in a bit more. BUT, here's the thing for me. I was back in remission right after the pregnancy for a few months and just about when my milk dried up and my hormones started to level out I came out of remission. I've been working to get myself back there ever since.

[Charisse]

Personally for me I notice that any fast fluctuation in hormone levels seems to throw my body off. I've felt worse anytime I go off the pill, get pregnant, miscarry etc.

[stacey79]

Now I'm wondering if the lower symptoms around my period were actually from my birth control pill. I switched to a new one last month so I could get it in free samples from my gyno while we don't have prescription coverage. This time around, it was back to an increase in symptoms. Proving once again that just when I think I may have something about IC figured out, it can change! :bonk:

[Jessica12974]

I was wondering the same thing about remission and pregnancy. But sadly recently I found out that I had an unfinished miscarriage and I am waiting to have a D & C. I was not planning on having more children(have 2). I was told that it would be difficult to concieve because of severe endometriosis and PCOS. I have always been irregular so when I did not get my period since June I did not think it was odd and never tested. 2 weeks ago I had a routine ultrasound to R/O ovarian cysts because of abdominal pain and that is when they saw a sac. I almost fell off the table when the ultrasound tech asked if I was pregnant. I feel guilty as hell because I never tested and looking back I had all the pregnancy symptoms but chalked it up to being sick.And to think I have been taking so much meds,ms contin 15 mg 3 X day,Norco 3X a day,tried Topamax for a while,valium,etc. This is going to bother me for a very long time because I feel the drugs I took,narcotic pain meds caused this but I will never know.Now I am going to be extra careful knowing that I am able to get pregnant. Anyhow my point of all this is that I know it would be difficult to be pregnant with IC because for the past few months I had the worse unremitting severe bladder pain that was not controlled by any pain med that I took. It was unbearable all summer and now I know for me it was because of this pregnancy. Now that it is over my bladder feels better. I feel sad knowing that it would be impossible to have more children because of this. And there is no safe narcotic pain medicine that could be taken during pregnancy and if there was I would not want to take a chance. The pain that I had all summer brought me to tears it was so bad. I heard of remission during pregnancy but I found out it would not happen to me just the opposite. I would like to hear more remission stories to give me some hope for the future. Who knows maybe it was not the pregnancy that caused the severe pain but most likely it was. Has anyone taken pain medication during pregnancy without problems? I would like to get off this ms contin and cut down on pain meds so maybe one of these days I could plan to get pregnant again. But the pain is soooooooo bad most of the time and I am one of those people who have pain everyday 24/7.

[shvlnose]

It is my understanding (PLEASE check with a doctor!) that narcotic meds ARE safe during pregnancy when taken in normal, controled, prescribed, monitored doses. The risk that freaks the doctors out is that you and the baby will be addicted or dependent on the drug and the baby will go through withdrawal after birth. But they are not known for causing major birth defects, from what I've been told and researched.

However, drugs like valium, anti-depressants, synthetic pain meds, anti-spasmodics, antibiotics, etc... have varying levels of risk during pregnancy. This is why it's SO important to talk to your doctors before getting pregnant (if possible) to set up a plan. If you are even considering pregnancy at any point in the next few months/year, it is a great idea to educate yourself as to what you are taking, what it's affects could be, and how your docs would want you to handle various situations. Their adivice for what to do/take while trying to conceive could be different than what they say to do once you have a possitive pregnancy test. Also, given the risk of varying complications during different stages of developement, the recommended cocktail may change over the course of pregnancy.

It IS possible to continue some IC treatments during pregnancy and have a healthy child (I have taken a reduced cocktail of meds along with pain meds as needed throughout mine, and both the baby and I seem healthy at this point - 29 weeks). The key is to educate yourself regarding your options, set up a plan, and have REALLY good communication with your docs.

Just my 2 cents regarding my experience!
Alyson