Cysters with IC, please respond to this poll

GabrielsMom · 04-30-2005, 04:19 PM

In a month, I will TTC again, and since there aren't any studies on the PCOS/IC connection, I was wondering if I could take my own unscientific poll to make a decision about staying on met during my next pregnancy. My endo doesn't like women to stay on met for their entire pregnancies, but doesn't have a problem with staying on for the first tri. I want to do everything possible to help my next baby go to term. If that means controlling PCOS better, then I will continue to take met through the entire pregnancy (or at least until the 3rd tri). Please respond even if you did not lose your baby.

So, the question is, were you on met during the pregnancy when IC showed up? If so, please let me know how long you stayed on it. As for me, I went off of met at 14 weeks and dilated prematurely at 19 weeks.

Thanks in advance for the responses.

SheriKCMO · 04-30-2005, 07:23 PM

Adrianne,
I really don't feel like my PCOS was well under control yet during either pregnancy, but I have been on metformin every single day since late October 2002. Some day when my weight, exercise and eating habits, and all of my hormones are just right, I might believe that my cervix would behave.... these will probably occur when I'm 75 years old, though!!!
So I had a loss at 23.5 weeks during one pg and a very soft cervix that was successfully belted shut during the other one (probably would have opened right up if left to its own devices).
Good luck with the poll!
Sheri

kwannabee · 05-01-2005, 10:51 AM

Adrianne...i will have my fingers crossed for you so tight this coming month i'll probably go cross-eyed!!

As for me...i could have voted two ways. My first preg i went into ptl at 29wks...but showed signs of IC...it was hard to diagnose me cuz 'it was my first pregnancy

and IC usually happens around 16-20wks so they were 'reluctant' to say i had IC...but i know one week my cervix was 4.4cms long and perfect and less then two weeks later i was in the hospital 7cm dialated and didnt feel a thing to get there...and i knew in my heart of hearts IC was an issue. That pregnancy i was NOT on any metformin at all...but i had just lost over 30lbs on weight watchers and was the lowest weight i've ever been.

My 2nd preg, with the girls...i was heavier, but i'd been on metformin for years. They made me stop right away as soon as i got pregnant. My cervix shortened at 19 weeks (but i kept getting the excuse "its because its twins NOT because of IC" ) yeah whatever...the same things happened this time but my babies didnt make it

So now, with this pregnancy...i stayed on met for the first 12 weeks. Going off made me anxious but there were no side effects and i felt okay.

But what i did differently THIS time 'before' getting pregnant, (see my siggy) was the vitimins, the IR diet, low glycemic food choices, and i really think incorporating cinnimon into my diet

...yes i said cinnimon...there are studies showeing it helps with insulin usage and and you know it just went on my cereal in the morning...no big deal.

also i read in a book it takes about 5 months to grow a good follie...the brain chooses the dominant one to go 'to the party', but for the five months before that if you can take care of things and treat your body well...the pool its chosen from is less contaminated. For me that didnt mean losing weight...i was actually heavier then i 'd ever been...it was just how i changed my metabolism....just with those changes my fasting insulin levels went from 77 to 44...

this time i do have the cerclage (which is NOT as bad as you might think)...but i have NO signs of any of the metabolic issues i had with my last pregnancies...and my cervix is long and closed well above the stitch (so far) I've been on bedrest since 12 weeks, too though...and i think the lesser anxiety of daily life is making a difference too. Stress really does cause hormonal fluctuations...so i've tried to train myself not to worry about every little thing...'TRY' :p But despite it all and cuz of my history I've had one constant worry after another...but i'm hoping my body finally got a clue!! i cant say its easy all the time to not catch yourself grieving all over again for the pregnancies you lost and to worry it will happen again, thats been my biggest issue...its hard not too...but i'm 'starting' to have hope, and my doctors have vindicated me and are on my side finally.

Right now though Vit C and E are now being studied to help prevent ptl...and i would up the omega 3-6-9, b12, and vit E. I chose all these vitimins based on my months of reading reading reading during my 'limbo' stage...i didnt want to take anything that could 'possible affect my response to the injectibles' in the long run...and i was too chicken to try any other herbs but since these all are in prenatals anyway i felt safe. The worst that could happen is like my doctor said you could have really expensive pee...your body will only absorb what it needs. (at least of THOSE vitimins) And also there is a thread on the ttc board called ttc after a loss...you might have to dig it up...but it could be very helpful too. Keep us posted!!

Gosh...ask a simple question :o Okay i'll shut up now...

VivC · 05-03-2005, 05:32 PM

April,

I wish somebody would do some research studies on this. I live right by NIH, but I don't know whose office to picket outside of!

I'm interested in knowing how many women with IC had very low progesterone early in their pregnancies. I know that the placenta's supposed to take over progesterone manufacturing after the first trimester, but I strongly suspect that sometimes that just doesn't happen, or sometimes the hormone ratio is screwy. I DO know that Met helps with hormonal imbalances. And I DO know that in the forty years it's been around, it hasn't been linked to ANY lasting problems with babies if moms stay on it for the entire pregnancy. So, it can't hurt anything. I will stay on it, whether my doc wants me to or not (you need to stop taking it a few days before a cerclage, but then you can take it again).

This is hard, because there are NO research studies on hormonal imbalances and IC (including IR and IC). I think it's best to do everything you can. Then at least, if something goes wrong (please, God, NO!), you can look back and say you tried everything.

You WILL get a cerclage, right? A rescue cerclage feels like somebody slammed a truck into your cervix at 90 mph (and morphine barely touches the pain). An early cerclage is much, much easier.

GabrielsMom · 05-03-2005, 05:53 PM

I'm definitely getting a preventative cerclage.. no question about it! At this point, I don't know if I'll be able to stay on met. My liver enzymes are up again and my doc is thinking of taking me off of it

Hopefully, I will get pg before he can do that, but I don't want to get jaundiced during my pregnancy either.

*sigh*

I hate my body.

VivC · 05-03-2005, 06:29 PM

((Adrianne)). You could try milk thistle (but not if you're REALLY TTC). I think a few weeks to a month should help with your liver enzymes.

Viv

AvivaElona · 05-04-2005, 12:04 AM

I stayed on met for the first trimester for Isaac's pregnancy and then went off. For Japhet I was on met the whole time and stayed long and closed with a cerclage. I don't think one case makes a good argument but I still won't go off it again during a pregnancy.

There are some studies that were done in Eastern Europe on hormones and IC I don't know what they say though because they are all in Polish or other Eastern European languages. They are mostly from the 1980's so not recent which doesn't bode too well for them having found anything significant as there were no later followups but if anyone knows someone who reads polish you might want to look them up.

Aviva

LaurAnnHere · 05-04-2005, 01:03 AM

I stayed on a low carb diet for my whole pregnancy which kept me from having to use met. I had very low progesterone during the beginning. Only luck saved my baby. I fainted at work b/c I got up to fast and got dizzy. My doctor didn't think much of it and neither did I but my employer made me go on to the doctor to be checked out and get a release. Thank God I did. When I got there I was 3cm dialated with my water bulging and by the time they got me to the hospital I was 4cm. If I had not gone when I did I would have had Jamie at 24 weeks. I was able to have a successful rescue cerclage. Next time I get pregnant (hopefully there will be a next time) I will have a preventative cerclage place. I'm glad you're going to get one.

Laura

Gnzls924 · 05-07-2005, 03:30 AM

I got pregnant on my own with no meds. But my RE wanted me to stop taking met after 12 weeks. However, when I met with the MF doc at the University of Chicago, he said it was okay for me to stay on it. He even went so far as to tell me that someone would be calling me to participate in a study for the hospital.

But unfortunately, we all know what happened with my pregnancy at 20 weeks.

If it were me, i would stay on it. I think you have to look at your total risk. Does anyone know of the negative side effects of staying on it? I have no clue.

Best wishes for next month, Adrianne. I'll be praying for ya!

SheriKCMO · 05-07-2005, 02:51 PM

There are no known abnormalities from staying on met the whole time.

I didn't even go off for my cerclage and wasn't told to do so. I had a general anesthetic. Everything went wonderfully.

I didn't even go off met late in pregnancy as some do "in case of a c section". I've never understood the necessity of that and was never told to go off. My doc is very familiar with metformin and has lots of pcos moms on it.

Anonykat · 05-07-2005, 10:05 PM

I know someone who reads Polish. If anyone is seriously interested, send me links to those articles and I'll see if he'll do it. (I can see it now..."...you want me to read an article about women's privates?!"

He'd do it, though.

chogal · 05-09-2005, 05:28 PM

Sorry to bust in on this thread. How do you know you need a cerclage?
Does the RE or OB check for this or do you have to ask for it?

VivC · 05-09-2005, 05:46 PM

Chogal,

"Officially," there's no link between PCOS and IC (Incompetent Cervix). But there are sure a lot of us on this board who've had IC. I believe that sometime in the next few years (if somebody gets to work with the research), a link will be discovered. I think hormones play a huge role in IC, and if our hormones are screwy enough, it COULD cause problems (after all, wacky hormones cause an increased risk for us of miscarriage and preterm labor).

Personally, I think every cyster should have at least four cervical checks during pregnancy - one around 16 weeks, one at 18 weeks, one with the normal 20-week U/S, and one around 22/23 weeks. Most docs wouldn't agree with me and would say the 20-week should catch any problems. But there are quite a few cysters here who didn't make it that far, thanks to IC. I'm of the "better safe than sorry" camp. I'd rather look like a paranoid freak than see another baby die. My doc said that every unexplained case of IC she's seen has been in a woman with PCOS, and she automatically does extra cervical checks on patients with PCOS (wish she'd been my doc when I was pregnant).

I would ask for a few extra checks. Just tell your doc that you're very anxious, and they'll probably do at least one extra for peace of mind. Also note the symptoms of IC: extra discharge (especially mucousy, but SOME discharge is normal. Just watch for major changes) and/or pressure on your cervix (a heavy weight, could also just feel like your uterus is very heavy suddenly). You may also feel a lump high in your vagina, which could be the membrane protuding down. And, PLEASE, if you notice any of these symptoms, get to the doctor right away, and INSIST on a cervical U/S. A manual exam may not catch early IC. It didn't in my case, and I'll always regret not knowing enough.

Viv

chogal · 05-10-2005, 03:20 PM

Viv,
Thank you for the 411. It was very helpful. Wow, i had no idea about IC and the possible link with PCOS. You've opened my eyes and my mind. I'm going to research this further and ask my RE about it. I'll be sure to share what I learn with this thread too. Thanks again so much.

AvivaElona · 05-18-2005, 12:19 AM

Anonykat, all I have is the names of the articles and the journals we'd need the help of a good academic library to get copies of the articles. I would leap in and say I'd do it, but honestly I'm having a hard time even getting here to post when I want to. I'll do my best though to get the article titles up here and maybe someone else can take it from there?

Aviva