PCOS Soul Cysters Unite

Wow! Reading all of these stories and how so many of you were diagnosed so many years ago makes me mad that so few doctors really even have any idea of what it is or what is going on with us.

I was diagnosed only 2 years ago. I have been heavy all my life, and I started my TOM when I was 9. I was always told that I should just do something, work this out, eat/don't eat this or that, etc. by doctors, family members, friends, everyone. I don't even recollect ever weighing less than 200 lbs because of the trauma of a group weigh-in in 5th grade where I stood on a scale like everyone else, except mine read 205. After I miscarried at age 16, yes I was able to conceive way back then, I went on the pill, but I'm not very good at taking them daily, so I got pregnant again at 17 with twins (They just turned 18 today). During the pregnancy, I lost 30 pounds and felt better than I had ever felt in my life. After the girls were born, my doctor recommended that I get the depo shot. By the time I got the second shot I had gained 25 pounds; I never went back for the 3rd because by that time I had gained a total of 80 pounds. When I went to my family doctor to say that there has to be something hormonally wrong, he just told me that I must be eating too much because normal weight gain is only 5 pounds. I had gained 80 pounds in less than 6 months...was I eating elephants daily? I have had my thyroid checked more times than I can count, but not once did they consider anything else besides that I was overeating. Not one doctor thought that there could be more to the issue when the only time I've felt normal and actually lost weight easily was when I was pregnant, and the only time my weight would even maintain was on birth control.

I'm sorry for the long-windedness, but I'm very angry that so few in the medical field want to know, care to know, or really understand what this syndrome does to affect so much more of our lives beyond the infertility that many experience. I am going to beat this; I don't know exactly how yet, but I am going to beat this for me and my girls (who I already recognize the symptoms in). I know the road to losing the weight is going to be much longer than the road to gaining it, but that road has to have an end somewhere, and I'm going to find it. Any new information I learn or successes in my battle, I will be happy to share on here or with any of you if you would like to friend me. I may not have been diagnosed when it was painfully obvious there was something going on, but I'm not going to let the years double up on me again before I figure out how to live and feel normal...no need for bc to regulate my periods up OR down, no depression, no migraines, no swollen feet, no more carrying an extra person on my body at all times.

Hi there!
Wow, so many responses on here! Thought I'd chime in, because my PCOS case is a little unique.

I'm not really overweight - 162lbs and I'm 5'10. But I feel better and look better closer to 150.

My PCOS was diagnosed when I was 18 and in college, running track and cross country. I had wondered why my period was so funky - and they did an ultrasound and found cysts. Fast forward 4 years when I was married and wanted to get pregnant - I got on Metformin XR, and I think progesterone, then Clomid (Clomiphene, actually - it's cheaper). And got pregnant! Then 2.5 years later - same drugs - got twins! Now I just suffer the side effects of hair growth and weird periods. My weight issues are more because I simply eat too much But I still love to exercise and do so frequently.

I'd love to know what you other PCOS women do for the facial hair problem!!!

Hello everyone. I was diagnosed with PCOS June 2011 with my new doctor. TTC for 9 years. Before I was diagnosed I was on about 12 rounds of clomid having one M/C and one stillborn. I am currantly TTC again with new meds femera and loosing wieght I take glyberid for my sugars cause they don't really get high. Just looking for other women to support and help me

I was diagnosed with PCOS when I was 15 (24 years ago) although it was never really explained to me and I never really understood the link between that and all of my other issues. I have struggled with my weight all of my life, I've not always been big, as a teen I would starve myself to "keep skinny" and often made myself quite sick from lack of nutrients. I then moved to the US, got married, and over the next 10 years gained over 100lbs... at my heaviest I weighed 283lbs (I was 140lb when I got there). I got sick while there with gall stones, and it wasn't until then that a doctor explained to me the link between insulin resistance, weight gain, fatty liver, excessive hair, etc. etc.

Ironically today I have to go for blood tests now that I am back in the UK to be "re-diagnosed" and to continue treatment... in the US I was taking Metformin and YAZ (birth control pill) It felt like this combination was working for me. The doctor here tried to prescribe me Cerezette because I'm overweight and the risk is to high for a combined pill... but on reading the side effects of this one I'm too afraid to take it....

I'm interested to know what other people are taking in the UK, as all that I have read about Cerezette is that it makes periods irregular (which I already have anyway) often disappearing completely, possible weight gain (don't need that), facial hair growth (I already struggle with that)...

Oh and now without any kind of medication I feel like my mood swings are out of control, I'm not depressed I know that for sure, but I swing from one extreme to the other and it is quite frankly making me crazy! Today is an emotional day, and even just writing this is making me cry, I would like to find some kind of happy balance!

I'm glad to find so many people with similar experiences on here, please feel free to friend me

I just found out I have PCOS. Me and my husband have been trying since Nov 2010 and after I got off the pill I never got my period so I was refered to a doctor that is great with these situations and from her I found out I have this. I do not know how long I have had it though. I was on the pill since I was 16. I was always 110 lbs or less but I gained abouet 25 lbs out of no where when I was 20 and figured it was just my age and things catching up to me. Then this fall I gained another 25 lbs out of no where, nothing changed in my eating or anything and I just figured it was cause it was right after my wedding so the release of stress did it. But now after hearing some of the symptoms I think that it could have been the PCOS.

I am on Metformin now, on my 2nd week of it, next I will take a medication to start my period then I will go on Clomid and pray it works! It comforts me to know that there are so many other peopl who are going through the same thing and many with success. My friedn that recommended the doctor I am seeing now has the same things and she just found it out too.

I have joined a gym and am hoping some weight loss can help me get pregnant as well. Stay positive everyone!

Another Cyster here too. Sucks to see so many of us! I'm Australian but I was diagnosed while living in the UK in Dec 2005, however symptoms kicked in for me in 2001 yet all the Dr's could tell me was that I needed to eat less and lose weight (that was creeping on at an alarming rate with no change in diet and lifestyle other than I stopped the pill). Wow, so helpful! In May 2005 I had a cyst burst on my ovary and realised with the help of a friend who was already diagnosed that my issues were more than likely due to PCOS. It then took months and months of begging Drs for testing before I actually saw someone who had any idea what PCOS was and diagnosed me pretty much on the spot. Turns out so many health issues that I've had since I was a kid were more than likely PCOS related, and I only managed to get through my teens without symptoms because I was on the pill for most of it due to cramping issues. I'm back in Australia now and Dr's here are slowly starting to learn about what PCOS and I've found a GP who is pretty clued up on it and is happy to let me manage everything myself. I am on metformin, meant to be 1700mg a day but I often forget to take my morning dose until it's too late, so it's more like 850mg a day. I don't take anything else other than a host of supplements, had to give up taking the pill as it turned me into a raging psycho *****!

I have two boys thanks to Metformin and soy isoflavones (before starting Metformin and having my boys we went through multiple miscarriages and infertility and I did soy instead of clomid as my Dr wouldn't prescribe it to me) and I did manage to lose almost 60lbs since my youngest was born 3yrs ago, but over the last 8 months I've gained back just over 21lbs due to poor diet management, lack of exercise, losing focus and losing motivation. I am struggling to get everything back on track and to start losing weight again before summer kicks in here, and I've set myself a mini-goal of 5kg loss (11lbs) by the end of August. None of my summer clothes from last year fit and I refuse to buy a whole new wardrobe because I got lazy and therefore got fatter. It won't take me much to fit into the clothes, it's just a matter of getting my head into the right mindset to do it, which is proving to be really hard. I know I can do it, I've done it before, but something is missing this time and I've been trying for so long to get back into it and I just keep falling flat on my face and adding on more weight. So yeah. Today is supposed to be my first official day back to calorie counting and a healthy lifestyle, so I'm hoping I can stick to it this time. Support would be great, if anyone wants to add me

I have PCOS and have SUCH a hard time losing weight. I really want to find the right kind of food diet that will help....because as of now I'm working out 6-7 days a week, staying under my calorie goal and I've stopped losing weight. I went from 210 to 190 and now nothing. Not losing or gaining. Very frustrating. We did clomid and metformin which didn't work, then we did Repronex INjections with IUI, that didn't work. Then I did soy pills and metformin which is how we conceived our almost 2 year old son. I believe weight loss also helps conceiving a lot but that isn't easy.

its sad that so many of us suffer this condition and relieving to know there is some support out there through u guys...

I recently suffered a chemical preg and havent had a period sinc...waiting to see a fertility specialist after being diagonosed with PCOS in april this year....scary stuff....was on a birth control pill nearly ten years which had symptoms at bay but i want to have a baby now...so am trying hard to lose weight ....u can lose weight its harder but its possible !!!

good luk girls and please add me xxx

well how bizarre - Ive had PCOS for 12 yerars, all clinically diagnosed etc...then after seeing the doc about it recently, I had a range of blood tests done - all normal then an ovary transvaginal scan - all fine. Apparently I have perfectly normal functioning ovaries.

How the hell can my PCSO go away like that?? I still have several other symptoms btw, but has a bit of weight loss and a baby really sent my pcos packing??

Hi, it didn't go away your symptoms have just calmed down. PCOS is a syndrome and therefor has multiple symptoms and any amount of contributing symptoms can lead to a diagnosis.

I was diagnosed with PCOS but I've never had cysts on my ovaries and ultrasound has been clear. However, I did have insulin resistance that led to type 2 diabetes (now insulin dependant), dark colouring on the back of my neck and underarms, abnormal periods, and obesity. The dark colouring has disappeared and I lost a ton of weight (almost 100lbs). Unfortunately I've put on weight in the past 6 months and have had great difficulty losing it. They say your hormones change every so many years (7-10yrs) and I totally believe it now. I am focusing on low GI diet and eating healthier (no eating out, no pop, no chips) FRESH foods and lots of fruits and veggies. I try to exercise everyday and it's helping me keep my blood sugars down.

But PCOS has an umbrella over symptoms that lead to a diagnosis and they can come and go (well some of them can come and go) with varying intensities

Hope I helped!!

FRUSTRATION post...

I CAN'T lose the weight I keep putting on!!! I'm about ready to cry!! I keep gaining about a pound a week... I exercise 3-4 times a week. I've started the Jillian Michael's 30 day shred... I work in a fitness centre for Pete's sake!! I HATE PCOS... AND I HATE MY HORMONES!! AND I HATE DIABETES!!! I feel so gross and want to lose weight... I have to force myself to eat because I'm so disgusted with my body that I don't want to put another thing in my mouth...

thanks for letting me get that out...

I just want to be back to 140lbs like I was last summer... this whole 190+ thing is bullsh*t.