Ladies with PCOS - a little update 8/5, 8/12.

I'm not TTC, but figured this is the best place to post for personal experiences/recommendations.

I was recently diagnosed with PCOS (CD3 testing, internal sonos, multiple bloodwork panels).

Apparently I've had it a long time, but it's been masked and "under control" with the use of BC. I switched my BC a few months ago and my body went NUTS. I went 60 days with no period. I had a couple of emergency room trips due to painful ruptured cysts as recently as December. (Christmas, actually. Yay!) My GYN office failed me - told me it was probably wedding stress...mmhmm. After my wedding?

I went over their heads and made an appt for consult with an RE. After a few visits and ultrasounds, the RE estimates (Based on the number of partially developed/dead eggs in my ovaries) that I haven't been ovulating regularly for at least 5+ years.

I have a lot of the skin symptoms of PCOS and I do not get my period at all without Provera. I'm a hormonal mess, I have random ovary pain, and I'm just NOT myself. I HATE THIS. I never know when I'm going to wake up puffy or swollen or normal.

I've been seeing an RE for 6 weeks now but I haven't started any form of 'treatment' yet - just testing.

I've read a couple of books too.

I guess I'm just looking for past experiences....RE recommendations.....where to go from here....management tips....potential problems conceiving in the future....etc. anything really.

Also, if you have PCOS and have conceived in the past, how did it happen? Medication, IUI, IVF, etc.

I feel pretty alone and down on myself. Broken.

Thanks ladies I appreciate the help!





UPDATE 8/5/08

Thanks for the support/advice.

Results today....good news, I guess. Fortunately, this was "caught" while I'm young and have better chances of correcting it through lifestyle changes and medications. And my major concern - the ability make babies! - will hopefully not be too difficult with the help of Clomid.

I was given a script for 1500mg of Glucophage XR (750mg/day for the first 2 weeks to ease myself into it with less GI issues). From what I've read, it seems to restore menstruation in most women...restore ovulation in SOME (according to the dr, about 30%).

I'll step up the exercise and go easier on the carbs and we'll see how this goes. I'll go back to the RE in about 8 weeks to check in.

2 questions:

1) I was told the Glucophage XR (metformin extended release) can cause sporadic ovulation - has anyone experienced this?

AND

2) I'm going on a cruise in 2 weeks. I'm concerned that the meds will upset my stomach and ruin my fun! I'm not a huge drinker, but I will definitely indulge in 1 frozen drink a day. I'm concerned that the rich food and alcohol will exacerbate the side effects of the meds (GI issues). Does anyone have any experience with this?

THANK YOUUUUU

Message edited 8/12/2008 4:25:30 PM.

Re: Ladies with PCOS

Welcome Nic! I see Dr. Kenigsberg at LI-IVF and I highly recommend him. I had seen a different RE for about 5 years (started seeing him before we were married so once we got married 4 1/2 years ago we could start TTC right away...) and got no where. So at the advice at a bunch of others on here I switched and am SO glad I am. You know where I'm at- but I can honestly say that for the first time in over 5 years we feel very confident at where we're at.
I am not sure if you're not actively TTC where you should start- but I def. think an RE is in your best interest since you will be some day. It's always good to establish a relationship and this way if you guys know when you'll want to start TTC you'll already have a plan in progress. Good luck sweetie! I'm here if you have any questions!

Re: Ladies with PCOS

Hi Nic -

I have PCOS too. Have you had your insulin/glucose tested yet? If you don't want to go back on BCP, I would suggest asking your doctor about Metformin. Met will help regulate insulin levels, but even if you aren't insulin resistant (I'm not), Met can help regulate your cycles. My cycles went from months and months of no periods, to shorter cycles... still long, on average about 40-45 days. I also started to really watch what I ate in terms of carbs and sugar. Some studies show that even if you lost 10% of your body weight it can help manage PCOS and help to regulate your cycles.

I can't recommend a RE for you since I live in NJ.

I got pregnant via IVF, but we also had other issues besides PCOS keeping me from getting pregnant.

Re: Ladies with PCOS

I know it's hard, but try not to feel down about yourself.

You are so fortunate that you've found your DH already and learned about this at such a young age. Time is absolutely on your side.

I have never been pg. I take metformin and synthroid.

If you haven't stumbled upon it already, you may want to visit the soulcysters site. It's PCOS overload!

Here are a few more hugs

Re: Ladies with PCOS

Re: Ladies with PCOS

Do not panic!! Fortunately, PCOS is one of the most treatable forms of IF.

I was diagnosed with PCOS in December by my regular OB/GYN. He did all the testing, and confirmed my suspicions. He did NOT handle my diagnosis well AT ALL. Told me I had PCOS (didn't explain the condition AT ALL) and told me to get back on BC and come back when I was ready to get PG. I KNEW that was not the way to handle the situation. You made the RIGHT decision to go to the RE right away! I went to Dr. Brenner at LI-IVF (from recommendations on here!) and he immediately sent me for all sorts of testing. He confirmed my PCOS and had me go for a glucose test. Turns out I am insulin resistant too. He started me on metformin (1500mg/day) in January and I have been on it since. Unfortunately, it did not really regulate me and I only ovulated once on my own in the past seven months. I tried two cycles of clomid (with no response), one cycle of injectables and had an IUI (failed), and recently went through my first IVF cycle. I go Friday for my beta, BUT, according to 3845038 pregnancy tests, it LOOKS like I am PG!!
You are definitely on the right track. I would suggest getting your glucose tested first to see if you are IR. If so, you'll probably start on metformin, and you just might ovulate on your own. If you are IR, there are changes to your diet that can be made. There are lots of good books out there. Do a search on amazon and start reading! It's how I educated myself! Feel free to FM with any questions!!

Re: Ladies with PCOS

thank you - and congratulations!!!!

It's sooooooo easy for people to say "just lose some weight" - they just don't get it. I bought a treadmill several months ago and walk at least an hour a day 3-4 times a week. I haven't lost a POUND. I've never exercised, so this was a huge step for me...with no results.

A friend of mine was diagnosed with PCOS last year. She didn't ovulate with metformin, but 1 round of clomid got the job done.

I guess there are varying degrees of the disease...

Re: Ladies with PCOS

Message edited 7/29/2008 9:46:40 PM.

Re: Ladies with PCOS

I also have PCOS. I've been seeing Dr. Brenner at LIIVF for over 10 years now, even before I was married. I've been on metformin for a long time. It has definitely regulated my cycle, but I've steadily gained weight over the past 10 years.

I did get pg about 5 years ago and we weren't even trying then. Unfortunately, we lost the baby at 21 weeks, which had nothing to do with the pcos.

There's a ton of good info online about pcos. You're lucky you know about it at this point in your life. The internet wasn't what it was when I first noticing the symptoms of it, so info about it was scarce. Thankfully I was able to find a doctor who knew what he was doing.

Re: Ladies with PCOS

Re: Ladies with PCOS

You know, it's really funny (not ha-ha funny, but you know what I mean...). Looking back, there were so many symptoms of PCOS that were overlooked by my doctors.

I feel my PCOS was late onset--I had regular periods until I was about 19. I was also put on BCPs. But when I was 17, I went on the Atkins diet and lost 70 lbs. Makes perfect sense, considering PCOS comes with a sensitivity to carbs. Then, I gained it all back PLUS another 40 lbs. All in less than ONE YEAR. I haven't been able to get back to that weight since, and all of my extra weight is around my waist.

The good news is, as others said, there is lots of hope for getting pregnant when you are ready. The rest of it--weight management and such--is a different issue.

Sorry to hear about your diagnosis--but we are all here to help and cheer you on!

Re: Ladies with PCOS

I know what you're going through. What you wrote sounds exactly like me.
I don't really have any advice... I just use provera every so often to deal with it. But I just wanted to tell you you're definitely not alone. And that doctors know so much more now about PCOS than they used to, so there's lots of hope for us. I think it was very smart of you to see an RE.
Best of luck to you

Re: Ladies with PCOS

I have probably had PCOS my whole life, my periods were never regular a teenager, and like you, I was put on BC and for 9 years that masked the symptoms. I wasn't diagnosed until almost a year after I started TTC, and it took me two doctors to finally diagnose I had a problem, so you are very lucky you are aware of it now, before you want to TTC!
After I was diagnosed, my Ob/gyn put me on metformin, which didn't work for me so she sent me to an RE - I went to RSofNY in Stony Brook and saw Dr. San Roman. I was very happy there. I conceived through metformin/clomid/IUI and a trigger shot.
I am not 100% sure about this - but I think if you are not ready to TTC then maybe you should see a regular endocrinlogist? Maybe the other ladies know more about that, but I know that an RE's goal is to get you pregnant. Did the RE you are seeing say anything about that?

Anyway, it is great you know now about your PCOS. You will be able to get it managed and under control, and when you are ready to TTC you will be able to start right away!

Re: Ladies with PCOS

thank you
I made an appt with a regular endocrinologist first, but they called ME and cancelled the appt and recommended an RE. I hope that was the right move!

just had my last blood testing today.....12 vials later...

Re: Ladies with PCOS

Posted by Shorty

thank you
I made an appt with a regular endocrinologist first, but they called ME and cancelled the appt and recommended an RE. I hope that was the right move!

just had my last blood testing today.....12 vials later...

Re: Ladies with PCOS

I have PCOS and had signs of it from VERY early on. I started getting cysts that would rupture when I was 15. When not on BCP I would get my preiod about 3-4 times a year. I had the bloodowork done and was found to be insulin resistant. I started on Metformin and took that for a few months trying to get my system in order and it didn't do the trick. I took Clomid for 3 or 4 cycles and got pregnant. I know that I was VERY lucky to only have to go through the Clomid and nothing else.

Now, trying for #2 and this is my 3rd month of Clomid and I think a BFN is coming. One more month and then we have to think about IUI's.

Re: Ladies with PCOS

I have had PCOS before it was even called PCOS (Stein-Leventhal Syndrome) since I was 19 ( I am now 35)

I was put on birth control at the age of 25 and hated it! Gained a ton of weight and other skin problems.

The weight has been the hardest issue to deal with. It is not that easy to come off because there is an elevated estrogen level with PCOS. I recently had an Orthopedist tell me this! Funny how he know this but others don't.

I was on metformin for years and I really didn't see any benefit from it. I didn't loose weight, didn't regulate my cycles, didn't get pregnant.

I had to do IVF to get pregnant. It was the best thing I have every done!

You should stay away from carbs and high fat. There is a great book called the PCOS diet (much like Atkins)

Good Luck!

Re: Ladies with PCOS

Hi and welcome! I was just diagnosed with PCOS in December and I am now in the process of doing IVF - but - we had other issues besides PCOS (we also added male factor into the mix!) What comforted me is that my RE told me - of all things to have, PCOS is the least challenging. When you guys are ready to TTC, make sure your DH gets tested as well. Please don't be down on yourself - you are SO young!

Also - wanted to mention - before I was diagnosed - I tried EVERYTHING under the sun to lose weight - I gained 30 lbs in roughly 4 years - nothing was working. I couldn't figure out why. The most puzzling to me was the giant tire around my waist - I was always mortified and trying to cover it up. Then when I was diag. it was like a lightbulb went off! I had almost every single symptom. Don't blame yourself. I now know that I can control my weight to a degree but I cannot change that I have PCOS.

Message edited 7/30/2008 11:59:26 AM.

Re: Ladies with PCOS

I'm not familiar with this and you know you already have million of these from me
and I'm here anytime you need anything, talk, vent, whatever it may be.

Re: Ladies with PCOS

I've always had PCOS and was never treated for it. I was on BC for about 20 years. When I decided to get PG, I went off the BC and didn't get a period for a year, started Provera/Clomid and ovulated but still no pregnancy.

If you aren't actively trying right now, you may just want to do the Metformin. It will help with weight issues (I didn't have the weight symptom of PCOS) and may get you to ovulate on your own.

Make sure you see an RE that knows about PCOS - NSUH and LI-IVF are excellent in this regard.

If you decide to TTC, they may put you on Clomid - then keep moving forward as necessary.

I have a friend who also has PCOS and she really only has to do a round or two of Clomid and gets PG naturally. It truly is one of the easiest forms of IF to treat.

Re: Ladies with PCOS

Thanks for the support/advice.


Results today....good news, I guess. Fortunately, this was "caught" while I'm young and have better chances of correcting it through lifestyle changes and medications. And my major concern - the ability make babies! - will hopefully not be too difficult with the help of Clomid.

I was given a script for 1500mg of Glucophage XR (750mg/day for the first 2 weeks to ease myself into it with less GI issues). From what I've read, it seems to restore menstruation in most women...restore ovulation in SOME (according to the dr, about 30%).

I'll step up the exercise and go easier on the carbs and we'll see how this goes. I'll go back to the RE in about 8 weeks to check in.

2 questions:

1) I was told the Glucophage XR (metformin extended release) can cause sporadic ovulation - has anyone experienced this?

AND

2) I'm going on a cruise in 2 weeks. I'm concerned that the meds will upset my stomach and ruin my fun! I'm not a huge drinker, but I will definitely indulge in 1 frozen drink a day. I'm concerned that the rich food and alcohol will exacerbate the side effects of the meds (GI issues). Does anyone have any experience with this?

THANK YOUUUUU

Message edited 8/5/2008 8:12:07 PM.

Re: Ladies with PCOS - a little update 8/5

Sounds like a good plan but I have never heard of that drug so I have no advice.

But, I am glad that you have a nice plan in place!!

Re: Ladies with PCOS - a little update 8/5

Re: Ladies with PCOS - a little update 8/5

1) met never made me ovulate, so I can't really help you with your first question.

2) I had a big problem with met and alcohol. Just be careful not to overindulge and listen to your body. As for food - if I ate a lot sugar at one time I had a problem, sometimes with carbs too, but not as much as with sugar.


Have a good time on your cruise!!!

Re: Ladies with PCOS - a little update 8/5

Have you thought about waiting to start the metformin until after your trip?

Metformin does make you go to the bathroom alot. I used to take mine in the evenings right before bed. I don't remember the effects with mixing it with alcohol.

Enjoy your cruise!

Message edited 8/5/2008 8:54:43 PM.