How many of us here have PCOS?

[GlitterBug]

I'm just curious to see how many women here have been diagnosed with Polycystic Ovarian Syndrome?

I've been diagnosed for a few years now, and have been TTC'ing both with and without drugs for about 8 years now. I've finally decided that I need to lose some weight in hopes that I'll be healthier if I do end up getting pregnant in the near future.

[Tirjasdyn]

I have PCOS.

Non-TTC with insulin resistance and high testosterone.

Metformin pretty much requires low carb...

[Maryposa]

are you taking metformin?

[Wifey]

Right here.

[CramerNH]

PCOS - Metabolic X Syndrome - Male Pattern Hair Loss (Alopecia)

15-year diagnosis

I have a cocktail of prescriptions versus Supplements that I take every day....and I absolutely love my Dermatologist and Physician Assistant - I have full support from them!

[BrandyLou]

I'm so happy to find a section on here for PCOSers.
I was diagnosed with PCOS in 2001 although I showed symptoms almost my entire life.
Have now been TTC for 3 & 1/2 years, we've done herbals, metformin & clomid.

[FireflyRainy]

Hopefully this will provide some inspiration to those of you TTC...

I was diagnosed with PCOS/Insulin Resistance back in 2001 and resigned myself to the fact that I would always be infertile. I would only get my TOM maybe 3-4 times per year. I was placed on Metformin and started LC'ing along with exercise 5 times per week. After losing about 25 lbs, my TOM started coming every month....I was then ready to TTC. My doctor prescribed Clomid to take along with the Metformin. I was pregnant on my second attempt. I gave birth to a baby girl on March 7, 2004...

After giving birth, I LC'd and lost 70 lbs and maintained for a few years. I no longer needed Metformin or any other medication to treat my PCOS symptoms. At the end of November 2006, I got pregnant (it was a pleasant surprise) with baby #2 and delivered in August 2, 2007... I again, lost my pregnancy weight and maintained for about a year....

Then in October of 2008, I conceived my third child. My DH and I were actively TTC and I conceived on the second attempt and recently gave birth on June 25, 2009. Again, I was not taking any medications at the time of conception.

I am posting this to give you hope that women with PCOS CAN get pregnant and go on have healthy pregnancies...

If you are TTC, I would definitely recommend exercise/LC eating. Even if you only lose 10% of your weight, your chances of conceiving increases greatly.

Good luck everyone.

[KrystaLyn]

There are actually quite a few ladies on here with PCOS (me included.) We used to have a group last year, but it kindof petered out. If you have any specific questions, feel free to ask it here in this forum and it will get answered.

[NewStartNow]

I was never officially diagnosed but I have all the classic symptoms: hirsutism, acne, I had irregular periods for quite some time but that leveled out, insulin resistance, a genetic link (2 sisters and an aunt).

[Happycat21]

I was diagnosed with PCOS about 6 months ago.

I am not on Metformin though. My doctor told me that my GCT did not show any signs of diabetes, pre-diabetes or even insulin resistance (which I am extremely surprised about-but happy about of course).

I'm confused, is Metformin ever given in a case like mine (with my GCT results)? I hear a lot of woman go on it, but the doctor never put me on it.

I had one failed cycle so far with Clomid, Ovidrel and timed intercourse. But at least my period is coming every month again now.

[bdladie]

I have it but now my cycles are good but just to old to have a baby.

Tania

[Maryposa]

Originally Posted by Happycat21

I was diagnosed with PCOS about 6 months ago.

I am not on Metformin though. My doctor told me that my GCT did not show any signs of diabetes, pre-diabetes or even insulin resistance (which I am extremely surprised about-but happy about of course).

I'm confused, is Metformin ever given in a case like mine (with my GCT results)? I hear a lot of woman go on it, but the doctor never put me on it.

I had one failed cycle so far with Clomid, Ovidrel and timed intercourse. But at least my period is coming every month again now.

Unless you also got insulin levels drawn, you can't trust that the standard labs show whether or not you have IR. My bloodsugar levels are normal but my insulin is CRAZY high... I am on metformin now. My understanding is that the latest data shows that PCOS is a symptom of IR, not the other way around. When you have PCOS, it's pretty much guaranteed that you are IR. I would demand insulin levels to be drawn if there were not already. And ask about metformin if they are high.

[BrandNewMe2004]

I was diagnosed in 2005. Have two kids, not having any more. LC definitely helped w/ the 2nd kid (I was skinnier and didn't know about LC w/ the 1st, a 'surprise'). I don't currently take any meds for PCOS or the Type 2 Diabetes I've got. Just started back w/ CAD. I do currently ovulate nearly every month - after my son was born it's been excruciatingly painful to ovulate - not sure if his size at birth (11 pounds 12 ounces and 23 inches long) or the PCOS is to blame. I am really hoping that gets better at some point. I hate feeling like a punching bag down there each month.

[CherryCola]

Originally Posted by Happycat21

I'm confused, is Metformin ever given in a case like mine (with my GCT results)? I hear a lot of woman go on it, but the doctor never put me on it.

There are studies specifically in very thin women with PCOS and no evidence of IR, that Metformin is helpful for controlling hyperandrogenic symtpoms (hirsutism, acne, etc.) because it increases an enzyme called aromatase. And this is significant because that enzyme converts androgens to estrogens. So while the cause isn't the same, the estrogen/androgen ratio can be seriously altered causing similar reactions that cysters with IR have as well.

[Happycat21]

Originally Posted by Maryposa

Unless you also got insulin levels drawn, you can't trust that the standard labs show whether or not you have IR. My bloodsugar levels are normal but my insulin is CRAZY high... I am on metformin now. My understanding is that the latest data shows that PCOS is a symptom of IR, not the other way around. When you have PCOS, it's pretty much guaranteed that you are IR. I would demand insulin levels to be drawn if there were not already. And ask about metformin if they are high.

Aren't Insulin levels measured from the Glucose Tolerance Test (GTT)? I thought that was the purpose of that test, to see how my body handled sugar.

[Tirjasdyn]

Originally Posted by Happycat21

I was diagnosed with PCOS about 6 months ago.

I am not on Metformin though. My doctor told me that my GCT did not show any signs of diabetes, pre-diabetes or even insulin resistance (which I am extremely surprised about-but happy about of course).

I'm confused, is Metformin ever given in a case like mine (with my GCT results)? I hear a lot of woman go on it, but the doctor never put me on it.

I had one failed cycle so far with Clomid, Ovidrel and timed intercourse. But at least my period is coming every month again now.

My friend, who also has PCOS, has no insulin resistance whatsoever. Her issue is with the the high testosterone levels.

[debkeversole]

raises hand

[Happycat21]

Originally Posted by Tirjasdyn

My friend, who also has PCOS, has no insulin resistance whatsoever. Her issue is with the the high testosterone levels.

yes, I believe I remember my doctor telling me this as well.

[Maryposa]

Originally Posted by Happycat21

Aren't Insulin levels measured from the Glucose Tolerance Test (GTT)? I thought that was the purpose of that test, to see how my body handled sugar.

no, the GTT Only measures blood sugars. You can HAVE IR and not have it show on the GTT, which is the case with me. The thing is, my body is IR, so to make up for it, it releases ALOT of insulin, I mean... really alot. Only because of this, my body has been able to maintain "normal" blood sugar levels... if someone says you are not IR, I would not beleive them until I see an INSULIN reading. Insulin levels are NOT a standard test, you have to request it. Mainstream MDs are still behind the curve... there is lots of info out there about IR but Drs STILL look only @ blood SUGAR levels

I was told that I do NOT have IR, and until I talked to Valerie Berkowitz (lowcarbdietician on here) I believed it. With the information she led me to, I went to a new Dr and requested the insulin levels to be drawn too. Sure enough, SKY high... like 3X higher than the ceiling high.

[Maryposa]

No offense to anyone here, but again, I would not believe there is no IR until insulin levels are drawn together with blood glucose levels throughout a GTT. I will try to post some links later that have info that back up what I am saying.

[Georgia'sMommY]

Raises hand....I rarely ever get a period.I have terrible acne. and dark hair that is time consuming to hide..excess weight...blah....I've gone years without a period.The doctors in my area are just awful when it comes to pcos..all they want to do is prescribe birthcontrol .I always thought I'd never be able to have children, so when my boyfriend and I found out I was pregnant..word couldn't express how happy we were. At my 10 week appointment I found out we had lost our baby..no more heart beat...It was the hardest thing i've ever had to go through. That was last April "08". August of "08" I found out I was pregnant again..scared to death everyday of my pregnancy that something was going to happen...There was alot of issues during the pregnancy, but April 22 "09" little Georgia arrived....It's incredibly hard having to go through all that,but never give up.

[Maryposa]

Originally Posted by Georgia'sMommY

Raises hand....I rarely ever get a period.I have terrible acne. and dark hair that is time consuming to hide..excess weight...blah....I've gone years without a period.The doctors in my area are just awful when it comes to pcos..all they want to do is prescribe birthcontrol .I always thought I'd never be able to have children, so when my boyfriend and I found out I was pregnant..word couldn't express how happy we were. At my 10 week appointment I found out we had lost our baby..no more heart beat...It was the hardest thing i've ever had to go through. That was last April "08". August of "08" I found out I was pregnant again..scared to death everyday of my pregnancy that something was going to happen...There was alot of issues during the pregnancy, but April 22 "09" little Georgia arrived....It's incredibly hard having to go through all that,but never give up.

sorry you had to go through that, i know how hard it is
Just out of curiosity, did the Dr say you lost the 1st baby because of your PCOS?

[Tirjasdyn]

Originally Posted by Maryposa

No offense to anyone here, but again, I would not believe there is no IR until insulin levels are drawn together with blood glucose levels throughout a GTT. I will try to post some links later that have info that back up what I am saying.

I agree with you Maryposa.

Both should be done. However it is still possible to not have IR and be in the throws of PCOS.

[Tirjasdyn]

Originally Posted by Georgia'sMommY

Raises hand....I rarely ever get a period.I have terrible acne. and dark hair that is time consuming to hide..excess weight...blah....I've gone years without a period.The doctors in my area are just awful when it comes to pcos..all they want to do is prescribe birthcontrol .I always thought I'd never be able to have children, so when my boyfriend and I found out I was pregnant..word couldn't express how happy we were. At my 10 week appointment I found out we had lost our baby..no more heart beat...It was the hardest thing i've ever had to go through. That was last April "08". August of "08" I found out I was pregnant again..scared to death everyday of my pregnancy that something was going to happen...There was alot of issues during the pregnancy, but April 22 "09" little Georgia arrived....It's incredibly hard having to go through all that,but never give up.

I'm sorry that you have to go through the heartbreak.


Funny thing though that birth control can help with PCOS and pregnancy. I've been pregnant three times (only one to term though). All three times I was on Birth Control and got pregnant.

[Maryposa]

Here is one article about the IR/PCOS connection...
Polycystic Ovarian Syndrome (PCOS) & Insulin Resistance
What I have been learning is that Insulin is the dominant hormone which causes all of the other issues associated with PCOS... instead of PCOS causing the tendency toward overweight, hypertension, etc, it is the high insulin, and the high insulin often causes the imbalanced hormone levels which in turn cause further symptoms like cystic ovaries, facial hair, etc.

It seems there is some theory that hypothyroidism can cause the system to go out of whack as well, but it is not as well founded research-wise

What I have learned is that bottom line, there is usually a reason the hormones go out of balance other than "just because".

Some other more boldly worded articles say that IR is THE cause of PCOS, but I am not taking that as gospel... though, what I have been reading makes a whole lot more sense then "oh, you have PCOS, that's too bad, heres some BCPs"

I am not saying that if someone says they have had INSULIN levels drawn and they were totally normal (fasting UNDER 10) that I would not believe them, but I have never met anyone with PCOS who has been able to say that. If I do, I will trust that. But I would still encourage them to search for a root cause. BCP only treats symptoms, does not get to the root of the problem.

[Tirjasdyn]

I have a pretty excellent doctor. Yesterday though she gave me some bad news. She is keeping me off BCP because the last conference that she went to, she went to a talk about PCOS where they discussed the connection to high risk of breast and uterin cancers. Not Fun.

I'm awaiting my latest bloodwork, she'll call me if it has changed.

I have hypothyroidism too, but we don't know which I really had first. It wasn't until we got my thyroid under control that my doctor was able point to the IR as to why I wasn't losing weight.

[capook]

Originally Posted by Maryposa

no, the GTT Only measures blood sugars. You can HAVE IR and not have it show on the GTT, which is the case with me. The thing is, my body is IR, so to make up for it, it releases ALOT of insulin, I mean... really alot. Only because of this, my body has been able to maintain "normal" blood sugar levels... if someone says you are not IR, I would not beleive them until I see an INSULIN reading. Insulin levels are NOT a standard test, you have to request it. Mainstream MDs are still behind the curve... there is lots of info out there about IR but Drs STILL look only @ blood SUGAR levels

I was told that I do NOT have IR, and until I talked to Valerie Berkowitz (lowcarbdietician on here) I believed it. With the information she led me to, I went to a new Dr and requested the insulin levels to be drawn too. Sure enough, SKY high... like 3X higher than the ceiling high.

This is me to a T!!! My GTT is always fine and same with my A1C. My insulin is like ridiculous.
When prego with my second child I lost 45lbs and wasn't even trying. When I'm pregnant it's like my PCOS disappears. Unfortunately I thought I was gonna be fine after I had her and tried to go it without metformin. I wound up gaining it all back but I'm back on the met for a week now and down 7lbs and have no food cravings. Some things we just can't do alone. Anyhoo you reeeeaaalllly need to find out your insulin levels to have a proper treatment plan. Good Luck!

[jijane21]

I have PCOS, haven't really taken meds since my second daughter. I got prego with number one with a combo of diet (lc), clomid, met, dexamethasone, and IUI. DD#2 was a complete surprise that happened when I reached my pre preg weight plus I was taking met! So no meds now just lc. I re-started about 3 weeks ago and going strong, starting weight 185 and current around 173!

[Hayley]

I have PCOS, too. Diagnosed in 2001. LC living has eased all of my symptoms (if I would just stay on it!). I did take metformin for awhile but slowly got off of it, especially when I got below 200 lbs. The only medication I take currently is Spiro for acne (freaking wonder drug!!!). Although I just got on the Nuva Ring for birth control but I flipping hate it! Getting ready to switch to seasonique if I can qualify for patient assistance. Birth control should not cost a fortune!

[brittone2]

Add me to the list. It is why I low carb. I'm a "thinner" cyster-not overweight, but I eat LC for PCOS.
I went through infertility treatment (injectables/IUI) to conceive my DS (now 5.5). I technically did NOT test positive for insulin resistance through a 2 hour glucose tolerance test WITH insulin levels, but I still believe insulin plays a large part in PCOS. A GTT w/ insulin levels is not that sensitive. I've heard 3 and 4 hour tests are more sensitive than 2, but even then the GTT even w/ insulin levels drawn isn't a great test.

I have elevated testosterone, DHEA-s, and androstenedione primarily. I had a hard time getting diagnosed by an OB because I don't have a lot of external symptoms. He didn't do a full or "correct" androgen panel (tested total testosterone but not free, and free is a better measure in PCOS for example). My levels came back "higher end of normal" but he kept saying I did not have PCOS. Well, that coupled w/ irregular cycles, anovulation, etc made me thnk otherwise and I pressed to get in w/ an RE, where I was finally officially diagnosed.

While ttc my son I did metformin (1500 mg) and clomid. Back then it wasn't that common to give metformin to women who weren't overweight or who didn't test positive for IR w/ a GTT w/ insulin levels, but my docs were willing to try it. I never responded to clomid so we moved onto injectables/IUI (where I hyperresponded and had a cancelled cycle, and then finally in my next cycle got pg with DS).

When DS was 2 I spoke w/ an endo about going back on meds (different doc, different state. Not an RE, but she specializes in PCOS exclusively). We were thinking about ttc but not in a rush, so we thought we'd see how metformin for a longer period of time would go. This time I asked about bumping up my dose (2000 mg) and we opted for extended release (easier to tolerate). She had no problem w/ the higher dose even though I'm not IR via GTT w/ insulin levels and not overweight. 3 months into resuming met I was frustrated I still wasn't cycling. Was about to induce a period with prometrium and did a test just to cover my bases, and it was a BFP!!! A total surprise.

Took met my whole pgcy with DD and remained on while BFing. I'm now almost 12 weeks pg with #3 (another surprise!).

Metformin has helped many women, even those who don't technically test positive for IR via GTT w/ insulin levels. I'm one of them. Years ago women like me would have never been put on 2000 mg but I think I need that level of meds.

I eat lowish carb (more moderate while pg) and do metformin and feel much better. I at least cycle on my own a bit now vs. before when I never, ever cycled on my own.

I definitely believe insulin resistance plays a critical role in PCOS.