IC - I'd like to campaign for a study related to PCOS. I need your input.

LaurAnnHere · 07-29-2005, 04:24 AM

Okay, I've been thinking about this for awhile. Being on Soul Cysters I've seen a lot of loss. IC is pretty common amoung the women with PCOS, yet there does not seem to be any verifiable information reguarding a link. There has been some research to indicate that it is related to progesterone levels, which would make sense. What I want to do is start a letter writing campaign to University Hospitals and see if we can't get one of them to do a study about IC as it relates to PCOS. I think that a study of this nature could help save the lives of babies. If they knew for sure that there is a link between women with PCOS and IC then they could do more to prevent it. Women with PCOS could be monitored closer. Right now most of our doctors aren't watching out for IC and many of us don't discover we have it until we suffered several 2nd term losses. I want to try and stop this.

If anyone can tell me their stories, I'd greatly appreciate it. These stories will be repeated and sent to anywhere I can think of to try. If anyone feels comfortable sharing or has any ideas where I should send letters please let me know. I have no experience at trying a campaign like this, so any advice is appreciated.

JuliannePCOS · 07-29-2005, 11:03 AM

Something I've been thinking about is this.... my progesterone may not have been low enough to miscarry, but I think it was low enough to cause constant spotting. I think that constant spotting, over time, can cause the membranes that hold the baby in to deteriorate and therefore rupture.

Once the bag ruptured, my cervix naturally dilated over time. After 5 days, I had dilated to 2 and it was obvious that the "incontinence" episode I'd had was really my bag of water breaking.

My progesterone wasn't checked and my OB pooh-poohed the idea of progesterone being helpful.

So.... I don't know if it's an IC... or a progesterone level. Clearly, next time, I am going to have that level checked right away.

VivC · 07-29-2005, 12:00 PM

Laura, I've been driven batty by the lack of studies on IC, too. I sent an e-mail to Dr. Glueck (supposedly one of the foremost experts on PCOS during pregnancy), and I never heard back. Really frustrating that we KNOW there's a link, but nobody will listen.

I'll join you in a letter-writing campaign. Just let me know who to write to! Or if you need help gathering the info.

Here's my story:

My progesterone was 5 at 6.5 weeks. I was put on 200mg of prometrium twice a day. My levels were never checked again.

My 20-week U/S was perfect, except for the technician saying, "Oh, how cute - his foot's in your cervix." To this day, I don't know exactly what she meant - was his foot in the opening to my cervix (which should have screamed IC), or was he just pressing down on my cervix? When she went back, he'd moved his foot and everything looked okay. But I had a full bladder at the time, and I later found out that can mask funneling.

A week later, I went in to my doc because of a mucousy, bloody discharge. He did a manual exam and said he didn't know what was causing it, but I should be okay. He refused to do an U/S, and I didn't know enough to run screaming for a second opinion. Five days later, I was back in his office with bulging membranes. I was 21W6D. At 22 weeks, they did the rescue cerclage, which gained us two weeks and the opportunity to hear Rivi cry and to watch him fight for life. During those two weeks, I was also able to appreciate every single second of my pregnancy more than I had before.

ReneeBeth · 07-29-2005, 02:58 PM

See, my flippin' OB's still say it wasn't IC! They said I just went into preterm labor. Umm..yeah. My hormone levels were all normal, usually with PTL, SOMETHING is off. And with Ari, I was even getting progesterone oil shots, and still went into labor. Physically, I had the signs of IC. Constipation feels, lower back pain, pressure. I was monitored via u/s every 2 weeks, and my cervix was always measuring above average.
It's crappy, because I may never know if it was IC, PTL or an infection that caused my losses. All three could have done it, and nobody can tell me which it was.
The sad thing about a study like this is, they have to study women with PCOS who get pregnant, and some of those women will have to lose their babies to be able to show a pattern of sorts.

LaurAnnHere · 07-29-2005, 03:49 PM

If the women in the study are being monitored more closely they will be more likely to save their babies.

LaurAnnHere · 07-29-2005, 03:59 PM

Renee, from what I've read about IC it is very hard to diagnose. Even with IC, at some point during dialation you will go into active labor. If you aren't really lucky and just happen to catch the dialation before the full blown contractions begin then it comes into question "Which came first, dialation, or contractions?"

I can't understand why these studies haven't already been done. When I was diagnosed and rushed to the hospital I was of the impression that IC was rare. After I joined Soul Cysters I was amazed at what I found. I was even more amazed at how many doctors would not do all the things mine did for me. I get the "what if's" all the time. I think I'm going to start by getting a letter together for UT, since it's close and maybe we could send something to The March of Dimes. Perhaps I could contact the doctor who gave me the cerclage and see if he could help. He's a high risk OB, maybe he would know.

Anyway, thanks. I'm going to start working on a draft. I can't let this letter be as jumbled as my posts!

enits · 07-29-2005, 05:09 PM

Hi girls. My OB insists that I didn't have IC since according to him, I didn't have any of them symptoms. My RE, on the other hand, begs to differ. My RE wasn't there to monitor me during my pregnancy, but he asked me what happened. He was astonished that my OB did not do ultrasound checks on my cervix. He said that should have been done from the very beginning. So right now I don't know who to believe. I'm not sure if I have it or not and I'm so, so scared.

For those of you who have been diagnosed with IC, did you have some bleeding or spotting in the first trimester? I had those and had a placental separation at 8 weeks. I think because of those symptoms, my OB totally disregarded the possibility of IC. And I'm so mad right now jsut thinking about this because I lost my baby at almost 18 weeks!!!

LaurAnnHere · 07-29-2005, 05:23 PM

I had a lot of bleeding during my first trimester. On u/s all my RE saw was a pool of blood outside of the placenta. He just kept an eye on it. We still don't know what caused it.

It is my understanding that the definition of IC is premature dialation, usually in the 2nd trimester without contractions. Like I've said, the line gets fuzzy where contractions begin. If you don't catch it before the contractions actually start then many doctors are hesitant to diagnose it as IC. I am of the opinion that you should treat it as IC and if the cerclage fails then you have tried everything. If it is successful then you've gained everything.

Reebekah · 07-29-2005, 08:51 PM

I never once bled during pregnancy except for when my cerclages were placed.

Laura - Just wanted to let you know that there was a women on the MSN IC Support Group a few months ago asking us all a bunch of questions about IC and PCOS. I believe she had a loss of her own, and is a physician's assistant (possibly still a student). Anyway, she said she has some docs who agreed to start a study. I told her about SC, but I think she got enough responses from the IC group to get her started with a sample. If you go to the site, unfortunately it doenst have a search function, so you'll have to look back through a few months posts. It was definately this year that she was posting about this, but not sure what month. Maybe the 2 of you could possibly combine your efforts? I know she had already made arrangements with a university hospital, etc.

LaurAnnHere · 07-30-2005, 01:20 AM

Thanks Becky, I'll have to go find that. My husband also suggested that I come up with some sort of questionair and start that way.

VivC · 08-02-2005, 02:19 PM

"I was even more amazed at how many doctors would not do all the things mine did for me." I still thank God every day that a nurse pointed us to a doc who was willing to at least try.

I had no spotting my first trimester, none at all until I went to the doc the week before my cervix dilated.

For those of you who aren't sure if IC played a part in your losses: please insist on a cerclage. If your doc doesn't okay it, find another doc. Yes, you could lose your baby. But you've already been through that - isn't it worth trying everything possible? And even if you DO get an infection, there are a LOT of antibiotics that are safe during pregnancy. If it turns out it WAS PTL, the worst that can happen is you pull out the stitch. To me, that would be worth it to save your baby. ((Hugs)) to everyone!

Viv

venicepink · 08-03-2005, 03:09 PM

I wish someone had told me of a connection between PCOS and IC before I conceived my twins earlier this year. I would have gotten a cerclage. Maybe they'd still be with me.

Not one dr. had even mentioned it, not my RE, OB or peri. Come on! 3 board certified MD's and no one could even mention it to me.

My babies were doing just great and then my water just breaks at 20 weeks. No warning, nothing. Something needs to be done.

LaurAnnHere · 08-03-2005, 08:44 PM

I am so blessed. I received a miracle that few people see. I want to make sure that there are more miracles. If I can save 1 baby by sharing what I know... It's terrible to feel so powerless. I don't understand the medical community. So many doctors are close minded and can't see what's right in front of their eyes every day. Then we suffer the consequences of their blindness.

I'm still working on this.