PCOSers Unite! - Mothering Forums

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#1 of 558 Old 03-24-2007, 11:46 PM - Thread Starter
 
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I was going to start a thread in the TTC forums, but to be honest PCOS involves so much more than that (well...that and I get tired of the whole ttc thing after awhile). So...PCOSers, can we chat about the things that most concern us? What lifestyle changes have you made? What treatments have you sought (allopathic, homeopathic, etc)? What frustrates you the most?
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#2 of 558 Old 03-25-2007, 11:40 PM
 
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I'm here And unfortunately I don't have insurance so I just keep trying to get pregnant but it's not working. Insurance would help me get more answers!

I'm looking forward to more posts in this area!
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#3 of 558 Old 03-26-2007, 04:10 PM - Thread Starter
 
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I hate the whole h/i thing. FWIW not all h/i will cover the fertility treatments outside of something like metformin. We've got a HDHP and have to foot the bill for a substantial deductible so no further tests/treatments here. I'm on the metformin and luckily it's one of the cheap ones at Target so it's only $8/mo.

I've ordered a few books from Amazon on PCOS including one called "The New Glucose Revolution Guide to Living Well with PCOS" and am looking forward to getting it. I'd like to try and shift away from the pharmaceutical route so it will be interesting to see what other folks have done/are doing.
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#4 of 558 Old 03-29-2007, 03:20 AM
 
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I have been seeing a naturopath, who has me on some supplements, including something called DIM which is a broccoli extract, some homeopathic hormone things, lipotrepein for liver, enzymes (Bromelain), and a natrual hormone cream. I hate it. I just want to be able to have a normal healthy body without all these supplements. I tried acupuncture, it didn't work for me. I tried classical homeopathy, and it seemed to help for a time but then seemed not to work anymore. I cut out all grains and sugar for awhile, and it helped but was a very difficult to maintain diet. Especially without dairy.
I am ttc now this time with the supplements instead of the prescriptions. I used injectibles to conceive my ds. I can't do that this time because of health insurance not covering them (I used to live in California, and now I live in Washington -- and I don't work now, and I used to work then).
I want my body to function like a normal healthy woman's. Seriously!

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#5 of 558 Old 03-29-2007, 09:17 PM
 
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I am nursing a 6 month old and trying to figure out a course of treatment that is compatible with nursing, plus I'm trying to lose weight without losing my supply. I hate PCOS. BCP always helped with the facial hair, but they make me tired and depressed. I don't like the idea of taking pharmaceuticals anyway, especially when nursing.

I just bought The Savvy Woman's Guide to PCOS, which is good, but I wish there were more alternative therapies in it.

It's nice to know there are others out there, because I don't know anyone IRL that has it.
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#6 of 558 Old 03-29-2007, 09:45 PM
 
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I would love to learn more aboout lifestyle changes, holisitc approaches and any great PCOS books. I am struggling w/ a good cookbook or ideas for healthy PCOS friendly meals.I hate to cook : so I would love the guess work to be taken out of it for me...Anyone have one to share?
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#7 of 558 Old 03-29-2007, 09:52 PM
 
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PCOSer here as well. I conceived DD after 4.5 years. She is now 7 months WHat worked for me was the PCOS diet (strict version of the GI and I got the PCOS diet book which was brilliant). This made my cycles regular for the first time ever. And then metformin kicked started my ovulation. 6 weeks later I was pregnant.

I find that the PCOS diet and controlling my sugars are the only way I can lose weight. Right now I'm trying to lose baby weight but am obviously doing it slowly as i'm breastfeeding. My period is sort of back, as in the odd spotting so I think I need to get my PCOS under control again.

healthy PCOS meals? fresh meat with brown rice or wholewheat pasta and tons of steamed or grilled vegetables. Cut out bread and most wheats (except wholegrain and even then cut it down drastically). I'll find the book I used and post it
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#8 of 558 Old 03-29-2007, 10:26 PM
 
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Me! Me!

I remember once my daughter was about six weeks old, I had a horrible moment of realizing that PCOS was about to be THE biggest factor in my health, once again. It was so infuriating, after having the nice long break of (finally) pregnancy.

It took us 5 years to conceive our daughter, and most of those were wasted on a variety of totally ignorant health care providers who didn't know jack about PCOS. After going on Atkins and losing about 45 pounds, I had one ectopic (random, I guess? That's the one thing I can't blame PCOS for...or can I?), one early miscarriage that I'm *sure* was a result of PCOS, and then years of just...nothing. I finally got on metformin, started seeing an RE, got back on the low-carb wagon, and started injectable meds and IUI. The fertility meds didn't work, but a couple of months after we decided to discontinue treatment I got pregnant, totally by accident. (I know, I know. Don't tell your MIL.)

I stayed on the met through about 14 weeks. After that I really got bad about eating carbs, and ended up gaining 60 pounds. Not a healthy Ina May Gaskin kind of 60 pounds, but a puffy carby 60 pounds that was definitely a result of all the bread and sugar and Lucky Charms and ice cream...yeah. We were going through a really stressful move, so I self-medicated with sugar. Not good. (Although my GTT was fine -- in fact, really great!)

When my daughter was 8 weeks I decided to go back on the met, and start eating low glycemic again. Very slowly all the pregnancy weight came off, and now that she's 19 months old I'm about 10 pounds *below* pre-pregnancy weight. I'm kind of worried that my periods haven't returned yet, although we still nurse A LOT. I'd like to get off the metformin, and thanks to Crunchyandsweet I'm going to start taking d-chiro-inositol. We want more kids, but who knows if I even can? Eh...

Oh, and I'm as hairy as Borat, even after laser hair removal on my chin. High five!
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#9 of 558 Old 03-31-2007, 02:00 AM - Thread Starter
 
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Originally Posted by Pookietooth View Post
I want my body to function like a normal healthy woman's. Seriously!
Can I ever relate to that one! I mean, I just want to get pregnant...how hard could that be, right? I'm in a difficult position b/c it doesn't seem that the met is going to be enough to induce ovulation and I'm not willing to move beyond the met to the clomid b/c I'm not willing to risk the chance for twins. My first was a c/s and I don't need any more complications when searching for a care provider for my VBAC. I also don't want any more adhesions scar tissue than I alread have.

Comparatively, though, how are the herbs/supplements from your naturopath going for you compared to the pharmaceuticals from the last time?

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Originally Posted by gwynthfair View Post
I just bought The Savvy Woman's Guide to PCOS, which is good, but I wish there were more alternative therapies in it.

It's nice to know there are others out there, because I don't know anyone IRL that has it.
I loved "Savvy Woman's Guide", especially her discussion of her theory on why PCOS is on the rise. I have issues with some of her dietary suggestions, but I can say the same about pretty much all of the other PCOS books - especially the PCOS Diet one. That's pretty par for the course for me, though. Of all the books out there, I think the dietary recommendations in "Savvy Woman's Guide" are certainly among the best.

There is another PCOS book that's supposed to be more natural. I haven't had the chance to read it myself, but it might be worth checking to see if your library has it. It's called "Positive Options for Polycystic Ovary Syndrome" by Christine Craggs-Hilton. I think she's British...

I'm glad you found the thread! I don't really know anyone IRL that has it either...except my sister. She hasn't really received a very thorough diagnosis, though.

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Originally Posted by Crunchyandsweet View Post
I would love to learn more aboout lifestyle changes, holisitc approaches and any great PCOS books.
: I'm hoping some of the others here may have some suggestions. What are the symptoms you have that are most troublesome? That may help folks narrow down their suggestions. You may also want to consider seeing a local naturopath or herbalist to see if you can get a consultation with them.

As to books...I really like "The Savvy Woman's Guide to PCOS" by Dr. Elizabeth Lee Vilet, M.D. On my wishlist of books to get next is "PCOS: The Hidden Epidemic" by Samuel Thatcher, MD and "The Fourfold Path to Healing" by Thomas Cowan (not specifically about PCOS, but has a PCOS section).

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Originally Posted by erika978 View Post
I find that the PCOS diet and controlling my sugars are the only way I can lose weight.
That was pretty much my experience as well, although at the time my PCOS was undiagnosed. Almost three years ago I had very good success with the South Beach Diet and lost ~40 lbs. It's really the only time in my life I've been successful. Getting back on that track, however, not as easy the second time around. I sincerely wish my PCOS had been diagnosed much earlier. I suspect I've had it for a very long time and had I known, I would have done things much differently.

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Originally Posted by leerypolyp View Post
I remember once my daughter was about six weeks old, I had a horrible moment of realizing that PCOS was about to be THE biggest factor in my health, once again. It was so infuriating, after having the nice long break of (finally) pregnancy.
I hate that feeling...I just went through that recently and it just plain stinks!
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#10 of 558 Old 03-31-2007, 05:38 PM
 
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leerypolyp in your experience does DCI have the same affect in treatment of PCOS as MET ? I am on my first week ( again) of the MET ER and um... the potty is sadly my best friend this week

Also right now I am taking BOTH DCI and MET..thoughts on that?
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#11 of 558 Old 03-31-2007, 05:43 PM
 
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Just ordered this from ebay..and wanted to share:


Alternative PCOS Solutions: You CAN take back your life
Beat Polycystic Ovarian Syndrome Without Drugs Item number: 4591726044


http://cgi.ebay.com/Alternative-PCOS...QQcmdZViewItem
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#12 of 558 Old 04-02-2007, 03:28 PM - Thread Starter
 
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Ooh! Please report back with a review once you've had the chance to read it! :
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#13 of 558 Old 04-02-2007, 09:39 PM
 
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Just ordered this from ebay..and wanted to share:


Alternative PCOS Solutions: You CAN take back your life
Beat Polycystic Ovarian Syndrome Without Drugs Item number: 4591726044


http://cgi.ebay.com/Alternative-PCOS...QQcmdZViewItem

I'd love to hear about that when you're done as well!

It's nice to see other PCOS'ers here!

My most annoying symptom is the facial hair! I can relate to the Borat comment..lol It feels like I spend all my time either shaving, applying coverup or looking to see if there is any stubble showing!

To get pregnant I used Vitex, lost some weight, took Jerusalem artichoke capsules and used Soy Protein Isolate capsules the same way you would use Clomid.

I still use the Vitex to help regulate my hormones. I also watch my sugar intake, and eat food that is as little refined as possible.

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#14 of 558 Old 04-02-2007, 11:35 PM
 
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subbing:
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#15 of 558 Old 04-03-2007, 01:41 AM
 
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The only time I've managed to maintain my weight was by following a low carb diet. If I eat the SAD, I gain weight, LC I *VERY SLOWLY* lose weight. I'm eating more of a "whole foods" diet now, getting as close to nature as possible, for the sake of the baby, and seem to be doing allright on it weight-wise, but not sure if it's going to be enough once the baby arrives.

I would love to find some good alternatives to controlling the PCOS once this baby is born (conceived with Met, Clomid and HcG). I was on BCPs for 8 years before TTC, and DH and I have agreed that I'm not going back on them after baby.

The BCPs never did a thing for my hairiness, though.

They also didn't help with the depression/mood swings. I don't get PMS swings like a lot of women, but longer swings, long periods of happy, then long periods of depressed. Anti-depressants help, but I know that it is at the very least effected by the PCOS (if not outright caused by it).

The hardest part for me has been dealing with ignorant healthcare professionals. The NP I was seeing for this pregnancy treated me like dirt because I'm big, and acted like I couldn't possibly know anything about my own body, or nutrition. I've had other "professionals" who don't believe the PCOS and depression are linked. Uh... PCOS seriously messes with hormones, how on earth are they not linked?

Oh, and I'm the only person I've ever heard of who actually gained weight on metformin (right up until the BFP, when the m/s hit and 12 weeks of vomiting ensued). But, the met also put me in a deep dark depression where I lived for 6 months, and it exacerbated the m/s way past what it would have been on it's own. So next time we want to TTC, I definitely want to avoid the Met if at all possible.

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#16 of 558 Old 04-03-2007, 10:56 AM
 
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cristeen- I didn't find the Met worked for me either. I know for many it's a "miracle" drug, but for me it did nothing positive.

There are quite a few alternative therepies for PCOS besides prescription meds. I am having some success with Vitex and Jerusalem artichoke capsules. Saw palmetto can help with the excess hair, but you shouldn't take it when you are ttc. ( not that you need to do that .

I'm looking into even more alternative ideas. D-chiro inositol sounds very promising as well. I have to research that one more.

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#17 of 558 Old 04-03-2007, 04:38 PM - Thread Starter
 
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The hardest part for me has been dealing with ignorant healthcare professionals. The NP I was seeing for this pregnancy treated me like dirt because I'm big, and acted like I couldn't possibly know anything about my own body, or nutrition. I've had other "professionals" who don't believe the PCOS and depression are linked. Uh... PCOS seriously messes with hormones, how on earth are they not linked?
That stinks! I wish that it was just related to PCOS, though. Unfortunately, I think attitudes like that are a byproduct of the broken system we have in the OB/GYN, surgeon directed care of women's bodies. to you for their ignorance.

I know Pookietooth's seen a naturopath. Anyone else? Or an herbalist? How about accupuncture? I must say that seeing a naturopath and/or certified herbalist are on my list of "next" things to try.

My biggest struggle lately has been trying to figure out when/if I'm ovulating. When I had my HSG they could tell that I had ovulated the cycle before, but my chart never showed it. :
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#18 of 558 Old 04-10-2007, 07:19 PM
 
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Going to sub.

I can so relate to mistreatment by Drs.

I was Dx 5+ yrs ago and after being told, I got myself on a strict herbal regimin (like 20some pills/daily) and eating better/exercise. He said that we wouldn't be able to have another baby w/o medical intervention, but we had our youngest 2+ yrs after that So I am ever hopeful we'll be able to concieve one more time. I am on Met and am taking herbal supps (less this time, because I found a mix that had most of what I was taking seperately back then), exercising and eating healthy.
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#19 of 558 Old 04-10-2007, 09:52 PM
 
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leerypolyp, I love your blog. I had a little one a few weeks after you had your daughter, so I always liked reading Phida updates. Enjoy your hiatus from blogging.

kittymac, hi!

I'm a "cyster" too. Working on conquering the demon sugar. It is not easy! But working on it.
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#20 of 558 Old 04-10-2007, 10:01 PM
 
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Is there a book or website with information about alternative PCOS treatments? I don't want to take metformin.
Jenny, who would really LOVE a doughnut right now.
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#21 of 558 Old 04-10-2007, 10:05 PM - Thread Starter
 
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Jenny, who would really LOVE a doughnut right now.
Hang in there!
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#22 of 558 Old 04-11-2007, 12:15 PM
 
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I am a fellow PCOSer, but I've only been dx for 5 months now. We thought it kind of funny after 12+ months of ttc, we were getting nowhere. So i went to ob/gyn, and she put me on a course of met, along with spironolactone (for facial hair and excess testosterone) and prometrium (progesterone to induce AF). AF became regular again, so she took me off of the prometrium for a "trial run" until june. Ha, I haven't seen AF since. So it's back to square one. The met is no problem for me, I expected it coming reading about PCOS treatments. And the spironolactone has actually worked wonders, I don't have a mustache anymore! I am a little worried about going on clomid (the next step) because of the chance of multi births. But at this point, any number of children would be great. I'm subbing, and I really want to know more about this PCOS diet, and if it works to get AF normal and ovulation regular again.
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#23 of 558 Old 04-11-2007, 02:14 PM
 
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I am a little worried about going on clomid (the next step) because of the chance of multi births. But at this point, any number of children would be great.
If you have a responsible doctor, they will start you off on a low dosage of Clomid, and monitor you closely so as to avoid large multiples. I know it was one of the things my RE discussed with me when I started the drugs. I made it clear to her that I was ok with twins, but no more. I'm having a singleton, after 2 rounds of Clomid.

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#24 of 558 Old 04-11-2007, 07:54 PM
 
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nak

thanks, ammaarah!

and crunchyandsweet, (i think!) -- i haven't tried the dci, but i researched it a long time ago and thought it sounded promising -- though at the time the only factory in the us that made it had just shut down! i need to do more research...
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#25 of 558 Old 04-12-2007, 12:48 AM
 
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Wow... I am so happy to have found this thread...

LJ is now 10 months old... after TTC for 3 years... We are so happy to have him.. but was I the only person that was clueless that PCOS didnt just go away after you had a baby?

Maybe it was just wishful thinking...

I used Metformin for a bit, then some other help from the Reproduction Specialist, but none of it worked... so we gave up, and boom we were pregnant a few months later... We were so happy...

I am nervous about Met while BFing, so I wont be using it till DS weans...

I will be looking into some of the books posted here... and looking at other options and ideas that you guys have posted.

To OP: thank you for starting this thread!

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#26 of 558 Old 04-12-2007, 05:46 AM
 
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Hello again girlies

I am 8 months post partum now and can feel the PCOS flaring up again (I've had some PMS and spotting but now full AF. Eventhough I'm bf I do feel my body is trying to menstruate but it isn't happening the way it should.

So out goes the sugar again. Gah, I hate that as I have such a sweet tooth
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#27 of 558 Old 04-12-2007, 12:15 PM
 
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I am subbing.

I got pg with my first after 2 years by losing some weight and excersizing (I think).

I got pg with the twins on Metformin, Vitex, alfalfa, raspberry leaf, losing weight, and excercise. (they are identical).

I HATE PCOS too!!!!

Gotta run, screamers' at it again.

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#28 of 558 Old 04-12-2007, 03:55 PM
 
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I am 8 months post partum now and can feel the PCOS flaring up again
So out goes the sugar again. Gah, I hate that as I have such a sweet tooth
I'm 3mo PP, and I hear ya. Sugar cravings coming back full force, acne back again, my BF weight loss has stalled, and I think it's not going away either. I too was hoping it would be 'fixed' by having a baby. Sigh.
Anyone back on met while BF? My Dr. (OB, we moved and I lost my RE), suggested waiting until I weaned to restart it. So that will be, um, how many years? I would like to have one more baby, but the main reason is that the metformin actually helped my symptoms.
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#29 of 558 Old 04-12-2007, 04:40 PM
 
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Yeah, I found my tribe! I have suffered from PCOS since teenage years, but was just put on bcps. TTC for a long time with no luck, went to a supposed "fertility specialist" and ended up on clomid alone and miscarried twins, due to low progesterone that was not treated or even investigated. Found a real fertility doctor and had my DD in 2001 with high dose of clomid, Vitex, and progesterone support for like 21 weeks. Had DS in 2005 with metformin and Vitex and the loss of 20 pounds. On progesterone support for 22 weeks
I can so relate to the symptoms coming back annoyance. My weight is at an all time high, because lately I've been on a sugar kick that has no end, still nursing toddler so not taking metformin, but I've decided to go back on at the end of the month when I see gyn. When pregnant I feel sooo much better, no chin hairs, happy mood, life's great, etc. We are discussing TTC number 3 and in the pro column is my improved health and mood.
I get so angry at the ignorance among dr's. I mean, if there was a disease that caused men to gain weight when they ate a normal diet, experience female secondary sexual characteristics like breasts and hips, and effect their sexual functioning, up to and including impotance, would the medical profession be scratching their heads and not having much in the way of answers? I think not. Don't get me started on the cardiovascular and cancer implications.
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#30 of 558 Old 04-12-2007, 05:37 PM - Thread Starter
 
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I've noticed a couple of times where it was mentioned about taking vitex and clomid. I thought you couldn't take vitex if you were on clomid....

I'm still struggling with whether or not I want to continue the metformin. While it seemed to be helpful the first month or two it hasn't been a "miracle" drug or anything and at this point it doesn't really seem to be making any difference. Plus...I have this nagging worry in my mind about liver damage.

I'm still struggling with a major carb addiction/sweet tooth. It sort of runs in my family amongst the women so I guess I shouldn't be surprised.

And I have to admit that I'm still struggling with the fact that this isn't just going to go away on it's own and the fact that there is no "miracle". Which is just plain silly to think anyway - especially given all that I know...

I'm so glad folks have found there way here. It's nice when you find out that you're not alone!
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