Looking for lots of support:) Any other PCOS ladies here?

Hello Everyone!

My name is Brandy and I'm super excited to finally be starting this change in my life. I'm a newly wed and hoping to finally shed this weight and have a child. I was diagnosed with PCOS about 5 years ago during my first marriage. Due to many reasons we did not have successful treatment and I never lost the weight.

I just got remarried in February and I'm really putting all my energy into getting back to a normal weight and resolving all of the PCOS problems. I would love to hear from anyone else going through the same thing.

Thanks for reading and I look forward to this huge experience.

Brandy

OMG! Brandy? LOL.... Heather here. HAHAH - I know this is an old post, but whatever. We have got to talk - I'm totally struggling with it as well!

Hello Brandy and Heather.  If you ladies are interested in continuing this chat I'm in!  I'm 32 years old and was diagnosed with PCOS when I was 29.  I have a lot to share if you would like to continue this forum.

Regards,

Vanessa

Yes, I have it too.  I've managed it for about 10 years through diet and medication.  I've lost and regained weight too during that time.  I'm teetering trying to get on the losing end of things again.

Hi Twindaze,

If you'd like to continue on this forum, let's do it!  I was a rather average sized kid until I hit puberty.  I had NO idea why I was gaining so much weight and with my family, it was hard to get any encouragement.  My mom actually thought I was eating too much.  So, periods were irregular and I didn't have one for 6 months when I was 15.  So, off to the gyn we go and I was put on Ortho Tri.  Long story short and 17 years later, I've finally got an understanding and am thankful for my endocronologist. I'm currently on Byetta and Metformin for my insulin resistance.  I lost 5lbs with Byetta and with diet and exercise, have lost 27lbs since October 08.  I'm slowly getting through it but am happy to report that it's coming off.

Your turn to share....

I've had it for the past 7 years.

Been having a lot more problems with it the past 2 years, including having three cysts burst. Weight gain has been my biggest side effect. Which is why I am here now. I am trying to lose the weight to lose the PCOS (well, the strong-symptoms of it anyways) which because of PCOS is hard to lose. Such a vicious cycle...

Hi Cassenyalogan,

I'm sorry to hear about the cysts.  I luckily don't have the cyst aspect of PCOS, but I do have the obesity, insulin resistance, and excess hair on my face.  I'm not a beast, but sometimes, I feel like one. 

It is a vicious cycle so hang in there.  At least you found out earlier than I did. 

Add me to the list.

I'm not trying to have kids,  I have 3.  But lossing is still my goal. 

I have every symptom there is except the thinning hair. 

I got all 3 kids by diet and exercise because my insurance won't pay for the meds. 

I'm now on a very low cal diet approved by my Dr. and I'm monitored by him carefully.  This site is extra helpful since I can log in and just show him instead of writing everything down. 

Has any one tried the vanquia (sp?) cream?  I don't want to pay $70 for it a month for it to not work.

I have known I had PCOS for almost 7 years but knew before then that something wasn't right since DH and I never used protection and never had a preg "scare" in 6 years then I lost 40 lbs and got my oldest. 

Oh wow, sorry guys, I forgot about this thread! I actually went to school with Brandy but haven't seen her in years! I just thought that was funny.

I have had it for 13 years, probably longer. My periods were never regular, and they are so painful I pass out sometimes. I've always been fat, since I was 8. I gained a TON of weight and then just kept gaining. I never could understand why I was so fat when I ate healthy and stayed active. I thought I had PCOS around 3-4 years ago, and went to the doc several times. One doc came close to diagnosing then sent me to another doc. He didn't diagnose. My bloodwork at the time was done while I was following a very low carb diet - I think that threw it off.

This spring I had an 8 cm cyst burst. I went to my doc, he sent me for an ultrasound then referred me to another doc. That gyno diagnosed me, put me on the pill and asked if I'd like to see a nutritionist. No other treatment. I finally got so fed up I made an appointment with an endocrinologist. We haven't started treatment - he wants baseline bloodwork so I can get a "real" diagnosis. So now I am off the pill and eating a serving of bad carbs a day to get my hormones good and out of whack for the blood test. I feel like ****, but I need a "real" diagnosis so that I can get treatment. I'm also getting a sleep study done. I am exhausted all the time, even though I eat right, exercise, don't drink caffine after noon, and have a sleep schedule set up.

I don't have the hair growth or thinning, but I do have dark patches of skin between my legs, skin tags, acne, irregular periods, obesity (I'm guessing b/c of IR), fatigue, and most likely infertility (I have been off birth control and still sexually active for about 2 years now and no kids...).... does anyone here use the forum soulcysters.org? I go there but there aren't as many users. Mostly I go for info.

Has anyone created a group here for pcos?

Hi Niccole-abel,

It is nice to meet you!  I also enjoy this website because it is such a great tool to use to log your calories and they have great recipes.  I haven't tried the vaniqua but have thought about it.  Maybe you can be the first to try it. 

Wow...I can't even begin to imagine how difficult it will be when I do decide to have kids.  I'm so glad you have your children as I know PCOS also leads to infertility.

Hello hgielrehtaeh,

I thought my periods were bad.  I've never passed out before!  My story is a bit similiar to yours.  My endo told me that PCOS has been around since the 80's and never once did my gyns, family doctor, or specialist ever told me about this.  It wasn't until I was 29 when a doc told me and then I went to see a specialist.  So, I like you can say I've had this for at least 7yrs and plus.  As of my last visit to the gyn, I don't have cysts but am sorry to hear that you had a massive one burst.  I hear they are pretty painful!  I would definately suggest finding a good endo to get the answer you so desperately need!

I also have the dark patches and skin tags.  So fun!  I'm married and no kids as of yet.  I've seen the soulcysters.org forum but am not an active member.  I also like to go for info. 

This is the first group I saw on here so I thought I would join.  I'm hoping it will stay active.  Is your friend Brandy still interested in this group?

Hi Ladies!

Mind if I jump on in here? I just joined calorie count and was diagnosed with PCOS in June of 2008. I went off BCP in August of '07 and never had a cycle. So by April when I saw my gyn and wanted to start trying to conceive she referred me to an endocrinologist when my bloodwork came back a little off. After a sonogram that revealed countless cysts on my ovaries I started Metformin and changed my diet to mostly organic and absolutely no sugar. I was able to conceive in August '08 with my first cycle off BCP and now have a three month old son!

So now I'm back on Metformin and a progesterin only BCP and am trying to lose the baby weight. I'm finding it very hard to lose the weight even though I'm breastfeeding and doing things right so I guess that's the PCOS. Glad to find this thread! Is there an official "Group" started yet for women with PCOS?

I've probably had PCOS forever.  I was pretty developed at 12/13, but no period.  No one could believe that I didn't have a cycle yet I was so mature looking.  It was quite distressing.  Finally at 14 I started.  I never had regular cycles, I would for a few months, then they'd get all messed up.  And I've also had endometriosis, so lots of pain as well, horribly life-altering pain.  I used to miss school for that.  Until I had to work, so no option there.

I was put on the pill, that was all they had back then.  Then I went off to get pregnant, no period for several months.  Then I was actually regular for a few months, but no pregnancy.  That led to 3 years of infertility treatment, I sporadically would have a cycle on my own for awhile, then not at all.  I'd also began being too heavy by then, or on my way anyway.  By the time I was 30 I was skirting being obese.  I finally got pregnant from IVF, had 4 kids that way, because thanks to PCOS I had 35 follicles fromt hat one cycle.  My 4 kids were born in three pregnancies though, I had twins the second time.

So I went on Glucophage when the twins were two.  That and a low carb diet led to a large weight loss.  I've been on Glucophage ever since, it controls my irregular cycles and acne (I never outgrew acne until the meds) and probably my cysts (I got those for awhile, they're awful.)  But not the obesity.  I need the low carb diet for that.  The problem is that that is very hard to stick to.  I struggle with that, and continue to.  I've lost and regained, I'm working to lose again and am slowly having some success, slow going though.

So that's my story.  Oh, I do have a bit of facial hair now, not tons at this point, but who knows without meds.

To the PP whose insurance wont' cover meds, Glucophage is only $6 per month at Krogers, I don't even file my insurance anymore as they'd make me do mail order and all I'd save is $1 per month.  So I wouldn't discount that option.

I do not recomend this but since everyone here knows how fun PCOS can be I feel safe to share.  To get my babies I had to drop a lot of weight fast to "trick" my body into thinking it was normal.  I dropped 40+ lbs in 2 months and no it was not a healthy way but it was how I knew would work.  and as soon as I was preg I went back to normal eating.  I knew I was preg at 8 days all 3 times.  By Dr. blood tests.

My regular primary  Dr. suggested that I had PCOS and sent me to her Dr.  They did the internal ultrasound and said yes with out question I had it.  Then they did the blood tests. 

The pill never worked for me.  It made me sick.  And since I got major cramps that would make me drop to my knees I couldn't handle tossing my cookies too. 

I hate the heavy flow.  I have ruined so many things by having a river run down my leg.  My husband thought I was bleeding to death. 

If you are donehaving kids like me I strongly suggest an IUD.  Not so fun to put in. but not bad. and I had it put in in Feb.  I just spotted for 1 day.  Didn't even need a real pad.  just a liner.  I can't remember the last time i did that.

Keep being Healthy storng and you will get PCOS under control. Not gone but it's a start.

Welcome Hilaryetta,

Congrats on your new baby!  I'm planning on having a baby next year.  I'm allowing myself to get most of the weight off first.  I figure that will double my chances at conceiving.  I've lost 27lbs since I've been on Byetta and Metformin.  I'm also counting my calories and doing circuit training (weights/aerobics/strength training) 6 days a week.  I also do yoga and pilates when I'm on my period.  It helps to stretch.  I'm thankful to God for allowing me to get through this slowly.  As far as I know there isn't an official PCOS forum but I found this one and it seems to be working. 

Twindaze - Sorry to hear about your endometriosis.  My mother n law also went through that and I know it was painful for her.  I also had irregular periods as a teen.  I didn't have a period for 6 months when I was 15 years old.  I was happy about it but had no clue what the consequences were at that time. I could not imagine what a bursted cyst feels like.  I hope I never have to go through that.  I'm sorry you had to.  Low carb diets are hard to stick to but you seem to be strong enough to handle that after all you've been through.  Are you insulin resistant?  I am so I crave sugary sweet things constantly.  This website has helped me a lot with recipes and good tips.  I also take Glucaphage or Metformin as some people know it as.

Nicole-abel - thanks for the tips on getting pregnant.  I plan on looking into that direction of my life next year.  So far so good.  My cycle is way off and I have a period every 40-50 days and when I do it lasts like 3 days but they are awful!  Ortho tricylen bothered me but I was on Yasmin for about 5 years and it seemed to help me with regulating my period.  I'm off of that now.

Hi everyone,

I'm Jo... My story is pretty much similar to everyone else's who deals with PCOS and/or hypothyroid. I was diagnosed a few years ago (I'm 26) when I actually lost so much blood from my "period" (albeit without ovulation) I was put on iron pills for a short time. I've been struggling with it for a long time. I have the classic symptoms- the cysts, the hair on the face, the dark patches, obesity, etc. Right now I'm at the worst weight I've ever been at and I'm attempting to lose a LOT of it so my husband and I can have children one day. It's a struggle. I'm only 5'3" and my highest weight a few weeks ago was 347.2 pounds. I've lost 15 pounds in the last few weeks simply by eating smarter and limiting sugar and carbs, but I know I have a long, long way to go. Weight has been coming and going for me for years.

I guess I was just looking for some motivation and/or encouragement from other women who know what I'm dealing with. On top of everything, I'm a grad student and don't have insurance right now, so I'm lucky to even be able to stay on my thyroid medication... at times in the past I've been on Metformin, but it seemed to aggravate my small intestine. Has anyone dealt with anything like that? Also, I can't bear the thought of being infertile, and it helps to know that there are others like me who have been able to successfully conceive. Like I said, I know I need to lose a LOT of weight before I can even begin to go down that road, but I need to know that it's not impossible. Any suggestions or advice  you can give me is much appreciated.