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4/18/13 2:11 P

Hey guys,

I too am someone who has suffered with PCOS since I could remember. I vaguely remember being rushed to the ER when I was 12 or so in agonizing pain; turned out it was from a cyst that had burst.

I sexually matured very early as many women with PCOS do. I had the large breasts, regular periods and the curvy hourglass shape from around 11 years old which was very distressing due to the teasing I would get from the other kids at school. I also remember that I was 'special' because I was given permission to use the teachers' bathroom because the facilities weren't adequate in the kiddy one!

My weight started to balloon around age 13, it started out at maybe 5-10 lbs increases per year and by the time I hit 17 I believe I was probably into the 190 range. It was the following couple of years that led to a much larger gain per year and my exercise levels that had previously been decent just went to crap.

Acne was the absolute bane of my teenage years. The medications were terrible and didn't help at all; I remember yearning for beautiful sooth peachy skin, not angry red zits. Then the hair growth started in small amounts. Started with my upper lip and as the years went by it started to happen in all sorts of odd places, something I am sure that many of you are familiar with.

Anyway, I know that I need to talk with and help support people like myself because once my initial weight loss burst is over I always plateau and give up. This time I am going to treat this as a fun challenge to make the scales tip again in my favor and hope that in sharing I can also be inspired by you guys and provide you with some inspiration also.

I did the whole TTC thing last year with hubby and unfortunately whilst they were able to get me to ovulate it turned out that we had other issues to make it nearly impossible. That was heartbreaking for me but now I just want to move forwards and look after myself right now and let life take its course. I figure that if I am meant to be a mom it will happen so no use in stressing over it and constantly harping on about it.

Feel free to add me as a friend and let's get some sparks roaring into mighty flames!

Epi

current weight: 245.0

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4/10/13 7:08 A

I struggle with sleep and energy as well. I never thought about taking a B-12 supplement. I'll try that and see if it makes a difference!

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2/11/13 1:45 P

Yes I do, especially in the afternoon. A lot of it could be from being insulin resistent, if you aren't processing your food correctly or aren't eating what your body can process, you will feel sluggish and tired. I know when I overload on sugar or processed carbs I feel so darn exhausted all the time. But since I have been taking my Metformin, really working on what I put in my mouth, exercising, taking a multi-vitamin and taking Iron (I am also anemic thanks to PCOS), I have been slowly gaining some energy back! I also noticed the more weight I drop, the better. It can be hard finding that balance though.

I hope you get yours back really soon!

20 Days since:  I stopped smoking!

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2/4/13 11:08 P

I have been having sleeping problems here lately as well. I feel like I haven't been getting any sleep at all but sleeping is the only thing I feel like doing and I have no energy at all.



My name is Joanna by the way and I am 25 years old. My husband and I have been married for 8 years this coming June. We have been TTC since the day we got married with no success. I was just diagnosed with PCOS this past November. I had a very late diagnosis due to not being able to find a doctor who was willing to help me.



Edited by: WHITEHEAD_2013_ at: 2/4/2013 (23:11)

Posts: 57
1/28/13 11:29 A

Sleeps an important aspect of weight loss... Im lucky, i sleep like the dead. I do however seem to lack energy alot. Might look into the B-12 suppliments. Along with the other 16 tablets a day whats one more?! Haha. Apparently (for those who struggle) the key to a good nights sleep is going to bed at 10pm with a cup of Tea and confortable pajamas.

MRLDCTYGRL: I like the advice on carbs and Protein. I didnt know that. I will have to check im allowed though as I have to limit my intake of protein, given that my kidneys leak it like its goin out of fashion!

Danielle xx

Edited by: RACEFORLIFE at: 1/28/2013 (11:33)

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1/27/13 9:57 P

Added sleep as one of my sp goals. I really need to improve on this aspect of my life.

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1/24/13 6:41 A

Goodness, I'm struggling with my sleep too. I hope tonight's a better night.

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1/22/13 3:20 P

I have been taking a Super B complex everyday this month and boy what a difference in my energy level.

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1/22/13 2:05 P

Holy crap I am tired all the time! Is that what the problem is?! I get plenty of sleep...

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1/20/13 2:46 P

Dear Aunt Flo
Its been 2 years since I've seen you and I miss you terribly. I know we've had our differences in the past and I know there were times that I didn't want you around, but since you've been away all i do is worry about never seeing you again. If you could find the time to come around every once in a while I would be so happy to see you again. With love and devotion soul cyster Bonnie

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1/17/13 5:52 P

Yes! I do too...i was reading that women with PCOS have low B-12 absorbtion, which is directly related to energy, and Metformin makes us unable to absorb B-12 from Food (not entirely but yes, it does hinder it) so I suggest get that checked. i just restarted taking a Super B Complex supplement. It of course can be so many things, but I think this is my answer as to why I am so tired.

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1/13/13 5:39 P

Hi! I hope you all have been enjoying your weekend! Do any of you have problems with being tired? I feel tired ALLLLLL the time. I'm going to book an appointment to see my doctor but was wondering if you guys have any input. Thank you!

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1/8/13 8:21 P

I agree with the previous post. I just started working out and eating right(mostly) about a month ago after AF has been absent for 6 months or so and she has just returned. So while I know it isn't what anyone wants to hear eating healthy and regular exercise really may be the key to restoring fertility for some of us. So far it has worked for me. Weight loss most likely will be slow and frustrating but some loss is better than none.

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1/4/13 5:27 P

Hey, well I have pcos, didnt no until after I had 2 kids. Yet a doctor told me I would never have kids. I had cycles that came and went as they please. What i came to the conclusion was when I exercised thats when my cycle was regular and that is also when I conceived my kids, boy surprise 1 and 2. So I will say workout and eat healthy.

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12/1/12 7:23 P

Welcome Bookworm! I have PCOS as well and have had TTC issues. I just had a laproscopy this past Thursday to check and make sure my tubes are open, no structural damage, etc. If you are exercising and eating properly, the Metformin will help you lose weight, which will also help with TTC. :) Good luck and you're on the way to a successful journey!

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12/1/12 12:19 P

I am 25 years old and was diagnosed with PCOS a month ago. I have had problems since I was in high school but never knew what the problem was. My husband and I have been married for 7 years and have been TTC since we got married, with no success and now that I know why I have been having trouble with TTC it has been a relief. My doctor put me on Metformin the day I found out my diagnosis. I will continue to TTC and hopefully one day I will get that positive test.

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11/24/12 9:30 A

Hi! I have been diagnosed with PCOS (year 2010) but have probably had it since I was around 13/14. Doctors over the years never told me there was something wrong with my lack of cycles, etc. and after a year of TTC with no success, my PCM recommended I get tested and go see an RE for confirmation and help with TTC. I have been taking Metformin since my diagnosis and have done TTC rounds with Clomid to help with ovulation. I had a miscarriage in November 2011 - my first and my first pregnancy. Now, my hubby and I are TTC again but since he is military and due to leave again, it looks like I will be doing IUI on my own. I was finally able to see a good RE a few months ago since we have moved back to the States and he has recommended I have a laproscopy to check my tubes, for endometriosis, etc. That will happen next week, then my hubby and I can try to TTC on our own one last time before he leaves. I'd love to have Cysters to talk to about PCOS and anything else during this road. It helps to have people to talk to!

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10/26/12 1:09 P

Hey there! I am 24 and I was diagnosed with PCOS when I was 17. I am recently married and TTC, my doctor put me on Metaformin a month ago, and it has helped with my hormones, for the first time ever I am ovulating, but have yet to have a menstrual cycle without using Promentrium (Progesterone) to induce one. Metaformin can make you feel quite sick the first few weeks, but for me it got better! And as long as I take with food I don't feel sick. I will be your buddy if you want and need on!

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10/24/12 10:23 P

I'm 25 years old and have not had a menstrual cycle in 3-4 years. My husband and I had been TTC since we got married 7 years ago with no luck. I had no clue what the problem was with my body. I saw a couple Dr's who would not tell me anything. I finally found one who was willing to help and was just diagnosed with PCOS today and I start taking Metformin tomorrow. I could really use a buddy through this journey, someone who I can talk to who also has PCOS.

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10/21/12 11:01 A

that is good to know! I knew to go lower carb but didnt know that low was better. I can't go that low but I will def try to keep it under 60! I knew carbs played a huge role in our weight loss. And congrats on the weight you have lost!

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10/20/12 9:53 P

So my dr in Woodinville, WA has PCOS herself. And she opened a clinic specifically for weight loss and takes regular insurance, and is a regular GP just like the ones who know NOTHING about PCOS. Her opinion? Good news/bad news. Good news is, if you get your plan right, you're going to ROCK this thing, fix your cholesterol if it's upside down from the insulin resistance like mine is, and start losing weight like crazy. Bad news is, we need to keep our carbs UNDER 30g/day and our protein OVER 60g/day, and will probably have to eat like that for the rest of our lives. I haven't seen new bloodwork yet, it's only been six weeks. But I'm down over 15 lbs, I feel great, and I've lost INCHES which means I'm gaining muscle. SERIOUS INCHES AND SERIOUS MUSCLE. Three and half inches off my waist. Five and a half inches off my hips. Three inches off EACH thigh! Two inches in my bra band (hence all the angst over new sports bras in other posts and blogs). In SIX weeks, with two ballroom dance classes and two hot yoga classes a week for the last four weeks. That's me, and I've got almost 100 lbs to lose and fibromyalgia to boot. So if this helps anyone, awesome, but I'm not personally a doctor.

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10/20/12 1:05 P

I know how you feel. I will gain weight like crazy if I eat 1200-1500 cals. I can even gain weight eating 1000-1200 cals. At least you did lose weight but, like you, I would be frustrated with all that hard work and not getting as big of an outcome as you were hoping for. The only times I can lose weight is when I eat 900 cals or less (i know...its not supposed to be healthy...but i get in healthy foods so I get a good amount of food for my calories), eat lower carb (under 100) and exercise at least 5 days per week. I find that carbs are a huge factor in my weight loss. I can eat low cal but if the majority of the cals come from carbs and I will gain weight or not lose. Darn insulin resistance.
But in short (sorry this was so long)
I eat 900 cals or under of lower carb foods. Lean protein, veggies and some fruit.
I do eat oatmeal for breakfast for the fiber and good carbs.
I try to keep my carbs under 100 grams
I try to exercise (cardio and strength) at least 5-6 times per week
I also take magnesium and try to eat foods that have it naturally since I have read more than once that those with PCOS tend to be low on mag.
(and this is what I do when I am being good and really trying. I have not been doing good for the past year and am getting back on track this month.)

Edited by: GETTINGFIT122 at: 10/20/2012 (13:08)

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10/14/12 9:01 P

As soon as you find out a way to loose weight please pass that on!!!! I have tried to eat 1200-1500 cal plus workout 30-60 min a day 6 days a week for 5 months and only accomplished a 9 lbs weight loss. I was so discouraged because I put forth so much effort!!!! Anyone else have the same results?!?!?

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10/14/12 4:52 P

I could use some accountability help, too. I'm currently going through the separation/divorce process, which is making dieting a complete challenge. Why, oh, why can't I be one of those women who become a size two when stressed!? Ugh. My (ex-ish)husband and I tried to conceive for four years with no luck. In retrospect, I guess that was a blessing. I'd just like to get my body into shape for whatever God has planned for me--- be that kids, mission work, underwater basket weaving--- whatever. I have another ultrasound scheduled for next month to see if one of my overgrown cysts needs surgery. It would be great to just get to a point where I have fewer symptoms and could lose weight at the rate of normal women. Sooo annoying to go to my TOPS meeting, eat less and workout more than my co-worker, and see her drop pounds quicker. I'd love if anyone has any tips to share.

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10/13/12 10:44 P

Girl I will be your accountability buddy! I need one too so if you would like just add me and we can work this out together. I Don't have near the problems that you seem to have. I guess I am one of the lucky PCOS people that have the ability to have children. My last one did take some time to conceive, but I am almost positive that it was because of the extra weight. I can't seem to loose it and that is a real bummer. I am tired all the time and I have a magic number that when I reach it all my symptoms disappear and I feel great like there is noting wrong. I am just having a real hard time getting my stubborn body to go along the weightloss journey with my head!:) LOL

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10/11/12 5:38 P

Hey all, I've been around SP off and on for two years. Like some of you, I'm not TTC, so a lot of the other boards and forums I found just didn't seem to fit me. Ironically, my PCOS didn't kick in until I gained an unusual amount of weight (96 lbs) with my first surprise! pregnancy at 19 yrs old. I eventually got married, and after a couple of years of TTC, finally saw the right specialist who Dx'd me with PCOS, in 1993. (Never did really conceive again, had a molar pregnancy in 1998 after I'd given up completely, wound up getting divorced and eventually remarried to a man who had two kids of his own and a vasectomy when we met. Nice and tidy.)

So it's been around for awhiiiiile. Not that they had and great treatments then either, but because of the length of time i've been dealing with this, I've about seen and tried it all... clomid for 18 months! (I should have had LITTERS, I was on DOUBLE DOSES for 6 months! ACK!), the terrible TERRIBLE periods (which I finally put an end to in Feb 2011 with an endometrial ablation, mail me if you want info, but it means a definite end to having kids). Weight gain, stubborn struggles with weight loss, facial hair, skin thickening, some depression, crazy hormonal mood swings when things are really out of whack... some Machiavellian procedures for testing and all kinds of awful stuff.

Turns out I actually have what I affectionately call an endocrine crapstorm. And a LOT of it can be managed by cutting carbs like a maniac.

Soooo, I'm "back" on SP for the forseeable future, I have a team of supportive doctors who actually give a crap, and I'm feeling good for the first time in YEARS, so I must be doing something right. Looking for accountability buddies to cheer me on or cheer me up or remind me that the scale is neither my enemy nor my guide, it's just a tool that doesn't show the whole picture!!!

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8/29/12 11:49 A

Hi this is day two for me around here. Still learning my way through. I was told just a few days ago that I am having this issue. I am still in the processing stage of it all. I have been to webmd and mayo clinic pages to read more on it. As like many docs mine is always in a rush. I have the paperwork they gave me. I am past (in my mind anyways) having babies. She has me on the Metforming. 500 mg first week. 1,000 second week and 1500 thereafter. So many new things. I just thank God I am not alone in this. I would probably go insane with this.

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8/22/12 9:59 P

Hey, I found out I had PCOS a while ago when I was trying to conceive. now about 3 yrs later still no baby... I actually do not ovulate at all no period since january.. My MD is just now trying to get me on metformin to get everything regulated....I'm actually not sure if I want a baby anymore...so I'm very confused...& trying to lose weight with PCOS seems impossible sometimes...it's just so hard... my MD put me on a 1200-1500 cal diet starting this past monday which will help but I dunno...I wish I could catch a break sometimes...wake up and it all be gone...ugh...but I'm still trying on my own and hope to soon reach my 100lb weight loss goal...

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8/3/12 11:00 A

I have been having the same trouble. Recently I went to all places a Free Clinic since i lost my insurance. They have helped me so much more than the other doctors that I was seeing. They not only put me on Metformin but Glipizide and now an injection called Victoza. They did add a water pill too. So far in the last 2 weeks I have gone from not losing a pound in years to being down 8 pounds. dont give up... keep looking for a doctor who are willing to help.

Posts: 34
7/21/12 12:04 A

Hey I am 26 and was diagnosed in 2004 when I was eighteen. I was put on BC and spiranalactane (I think that's how you spell it). After that I pretty much forgot that I had it, I mean I knew I had something, but I forgot the name and didn't research it anymore. I recently went back to the same clinic where I was diagnosed (long story, when I was 18 I changed my doctor to the doctor my parents had, looking back I don't know if she was a good doctor, sometimes I would wait in her office for over an hour, also she didn't seem to care that much. recently I lost my parent's insurance because I turned 26, so that gave me the drive to find a new doctor.) When I went to a doctor at the clinic that had diagnosed me, we went over my medical history and he reminded me that I have PCOS. He explained that it could be a reason that I was obese. I want to learn more about it. I now know that I will have to work extra hard to lose weight. I look forward to participating in this team and meeting you.

Edited by: CREATIVNAME at: 7/21/2012 (15:22)

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7/11/12 9:01 A

Hi I am new to this team I am 42 and I have been diagnosed with PCOS for 15 years I do not have children from this and decided not to try the different things to try to get pregnant but that is ok and my husband is ok with that so there has not been any pressure for me to have children so that has helped. I have been struggling with my weight all my life and when I found out that I had PCOS and started researching about it found out what a battle it is I do not lose weight so I at least try to maintain and not gain more I have tried Metformin but it is to hard on my GI system so I can not take that so what I try to do is eat a low carb diet and high in protein.

Well that is a little about me I hope that everybody has a nice rest of your week
Kim

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7/11/12 4:10 A

I'll join this thread.

I'm 40 and childfree. Wasn't sure if I wanted to have kids or not; but the diagnosis still came as a loss.

I have a great life; though am struggling with health issues. Recently diagnosed with Cronh's as well as the PCOS and a lung condition. So life has been about learning how to thrive and overcome obstacles.
Mostly emotional ones. All those I WANT THINGS to be different.
Well...instead the mantra seems to be when I'm able, bit by bit, I'll make things different.

Hugs
Jo

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7/2/12 12:30 A

I am new to this team. I have not been diagnosed but have the symptoms. I am hoping I do not have this but I have painful cysts every month. I know they are cysts because they give me prego symptoms and the doctor found a large one that had popped on my ovary as well as others that were functional small cysts. At that time he did not say it was PCOS but that he would keep an eye after hypothyroid treatment. Infertility is hopefully not an issue but pregnancy has not happened in a year so who knows?? I want support with the cyst pain so I thought I would join this group. This month has not been fun ;( but I have found and been told that any sugar will inflame the cysts making in ruthless and difficult to workout. Working out such as swimming relieves the pain for me and burns many calories. Also, ibuprofen and tylenol make it possible for me to work out.

I also have hypothyroid and the pain let up once I started the meds so my question is if they are related??? anyone know??

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7/1/12 1:24 A

Hi Everyone! I joined Spark people a long time ago and never really found the support I was looking for....I didnt find it out in my world either. So I am back again. I hope to find a friend, a motivator, an accountability partner. Just someone who understands and can give support. I was diagnosed with PCOS over 9 years ago. At my heaviest I weighed almost 260. So much has happened in the past nine years but I will start with the last year. I took in my three nieces in July of 2011 and I got married in Nov 2011. We want to have children of our own but as with most of you, I was told it wouldnt be easy and that losing weight would be the biggest help. I had been on metformin for well over 7 years and had always taken 1000 mg a day. I finally got fed up with the lack of results and found a new endo. He told me (which I later researched the meds) that 1500 was the MINIMUM therapeutic dose and that was why I was not seeing any changes. He doubled my dose and within a year my insulin went from 62 to 18. My goal is 8 which is when I should see more weight loss results as well. Right now I am trying to find my motivation to work out and find a diet that works for me and my PCOS. I could really use someone who will check up on me and make me accountable for my days. I hope that everyone finds what they are searching for as well.


Edited by: KRISTEN459 at: 7/1/2012 (01:34)

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6/26/12 4:54 P

hi my name is Kirsten,
in 2004 I was diagnosed with PCOS. I wasnt sure what that meant. I have struggled on and off with my weight. My heaviest was 240lbs. in 2000 and struggled trying to get pregnant on and off for 8yrs. I saw 3 specialists and each one said I would never have children. That was in 2004 after trying metformin, and other ways that never took. In 2005 2 days before my birthday i suffered a miscarriage which the blood test done at the er said it was negative. I have dealt with false negative tests as well. In Dec of 2006 I was informed I was indeed pregnant. After 8yrs of trying and being told it would never happen I was excited. Well my daughter is going on 5yrs old and starting kindergarten this August and she is always aksing to have a baby brother. We are trying. have been on and off for 4yrs now.Of course so far no luck. I fear that it will take as long for baby #2 as it did for the first one. I pray that it doesnt. On top of struggling again I found out that I have very high cholesterol and tryglycerides. That is when I decided that I need to finally make a change of my life, for myself, for my daughter, and for my chances to increase on getting pregnant again. I decided since the new change I should join a team and i know that i have pcos so i figured this would be a place to start. I wish everyone luck on their goals that will also include getting pregnant. I also would like to mention that not only losing weight to help your chances of getting pregnant maybe looking into seeing a chiropractor could help as well. Trust me I was a very skeptical person and did not want some body twisting me into a pretzel. I started seeing a chiropractor at the end of July 2006 and by dec 2006 I was told I was pregnant, mind you this happened after I've tried different ways to get pregnant and was told I would never get pregnant. Just a thought. I wish you all the best. Good luck!

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6/26/12 11:33 A

Hi,
I am new to Spark and new to PCOS. I was just diagnosed a couple months ago after not being able to conceive for a year and switching to a doctor who agreed it was odd that I gained 40 pounds in a year (my previous doctor told me to quit eating carbs and I'd be fine). Looking forward to getting to know others with PCOS and how you all fought the disease.
Amanda

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Posts: 198
6/25/12 7:43 P

I was diagnosed with PCOS about 10 years ago although I had my first ovarian cyst removed 23 years ago. It took a new doctor and a lot of research to figure out what was going on with my body. Metformin did not work for me and just made matters worse. I am looking forward to getting back in shape and getting a handle on my PCOS through eating right, exercise and supplements.

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6/7/12 1:40 P

Welcome New Cysters!

I'm glad you found this new group too! It has been an amazing tool for myself, since I was only diagnosed about a year ago. Please make yourself comfortable and feel free to friend, message or e-mail any of us!

Good Luck on your journey! Push through on the hard days! :)

Posts: 260
6/7/12 9:34 A

I have struggled with PCOS for several years now (finally diagnosed about 5 years ago). Based upon my endo's recommendations of eating high protein meals and taking my medication as well as my gyn placing me on lose dose birth control (it really needs to be renamed to hormone control), I have basically gotten rid of the extreme pain that would debilitate me for weeks on end (my gyn stated that it was ovarian cramps which triggered uterine cramps that were basically the same as labor pains) - needless to say, it was hard to do anything or care about anything. After the cocktail mix of 3 months now, I'm feeling better - got back on SparkPeople, I'm exercising, and eating right - well mostly. I'm not kicking myself for giving up over a year ago or even having a soda and some popcorn at the movies on Sunday. It's not good for your mental health.
I'm just going to keep plugging forward and checking in with everyone. I do recommend finding an endo who works with an ob/gyn closely and has knowledge of PCOS. They have made an excellent team who has really monitored me closely and listen to my symptoms and respond.

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6/6/12 11:40 P

Hi Cysters :-)
I was diagnosed about 15 years ago and was put on a mighty drug cocktail which controlled but did NOT cure anything. I found SP last August and have lost 13 kgs, so I know it can be done. Lots to go still but it can be done. I stopped all my meds last October, decided I did NOT want to be taking meds forever and ever. Hirsutism is very bad right now, which I hate. Scheduled a laser appointment for late June when I'll be back in France. Expensive but worth it. Started chinese medicine last March and my periods are pretty much back to normal now, so I hope the magic potion will eventually put all my hormones back in balance! I do not want to start the meds again. But I must say, those "symptoms" are the bane of my life! Good to have a place where we can talk about it!

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6/6/12 1:37 P

Hi Everyone!! Aghh** (a sigh of relief) ...I am so glad I found this group. Like many others I am so excited that I found a group that can totally relate to what my body is going through. I was diagnosed at the age of 21 is was told i would not be able to have children because I was not ovulating. I lost a lot of weight a few years ago and it did help regulate my period (with the help of metformin and BC). I had a major weight gain over the last few months and haven't had a cycle since. I just want my body to be normal and regulate on its own without any medications but the food cravings and lack of energy gets the best of me.

The inspiration and motivation from you all is necessary and really appreciated

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6/3/12 7:23 P

Hello Everyone ! Hope everyone has had a very relaxing weekend. I'm so happy to have this ground and to be able to share information and stories about what we all deal with. I've been dealing with this for about 2 years now. I'm still trying to get used to it and make the changes needed to see some results. I'm taking my glumetza religiously and making some changes in food and working out multiple times a week. I've been told though if I want to lose the weight I'll have to work twice as hard which is rather frustrating but I've been pushing myself harder. I haven't seen anything in the last 2 weeks but i'm still working on it. My friend recommended a splurge week and see if that helps but I think it would just make me gain. *sigh*

Posts: 902
6/2/12 3:28 P

I am happy those of us with PCOS can come in here and connect. We are on a similar journey to each other and it's nice to be able and discuss that. I hope you are all doing well!

current weight: 234.0

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5/28/12 11:00 P

I was diagnosed with PCOS almost three years ago but I believe I've had it forever. My first two periods were a month apart and that was that, rarely did it happen again. I am not sure if I ever ovulated regularly except about 10 years ago I lost a lot of weight (got under the 200 mark) and I was having fairly regular cycles (about 35-38 days) and then I started gaining weight back and the cycles got out of control again. Infertility was a major point of sadness for me but the ongoing physical symptoms to me really mess with me on a daily basis (the male pattern baldness, the hirsutism, the "pouchy" belly, the acne). I went to an endocrinologist at the urging of my dermatologist who could see the acne, the balding, and the hairy chin, and he put me on spironolactone and I was already on birth control pills and except for when I lost a lot of weight that was the best I ever felt. I've been unable to lose weight lately (a lack of motivation mostly). I've never been on metformin and the doctor said I did not need it.

I will mention that I went back to the endocrinologist in early 2011 and I conceived my baby boy (YAY! he is the light of my life) who is now 6 months old (second cycle of Femara). Being pregnant, giving birth, and breastfeeding have left me 18 pounds less than when I got pregnant but I'm kind of stuck there and I have another 100+ pounds to go. All my other symptoms are just as bad as ever. My hair loss and the hirsutism are the worst for me. I don't mind not getting my period although I know it's not good (but right now I can chalk it up to breastfeeding).

I'm seriously considering doing Paleo but I haven't been able to find the courage to start it. I KNOW I do better when I'm not eating sugar and a lot of carbs and I am lactose intolerant and constantly suffering from diarrhea from eating/drinking milk products. I KNOW I'd feel better yet I am in this cycle of eating horribly. I want to be healthy so I can do things with my son as he grows up. I don't want to be ashamed to be on the beach or at a pool and I want to be able to ride bikes and go on walks without huffing and puffing. Plus I'm tired of being sick to my stomach all the time (from the lactose intolerance) plus displaying all the horrible physical effects of PCOS. I am feeling pretty hopeless and trapped.

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5/25/12 10:41 P

Welcome to the newbies and I agree, it is nice knowing that there are others out there struggling with the same issues.

As for metformin, I am one of those folks that take metformin but has not helped me lose 1 lb. I was on metformin when I was seeing the nutritionist and nothing! How frustrating.

As for carbs, I do keep them under control and get most of my carbs from fruits and veggies (including starchy veggies), but I do not eat pasta or bread very often. If I do, it may be once a week only and use wheat or whole grain. I eat lots of lean protein - turkey and chicken mostly. At first, it was tough, but after a few weeks, it has been pretty easy to keep below the threshold the doctor recommended and have turned it into a game to see if I can create foods with low carbs. I feel less bloated and the weight is coming off.

However, I do exercise but I do not do the same exercise. I do strength training every other day and cardio (spin, zumba, elliptical, walking, tennis, etc) 4-5 days/week. This keeps all different muscles working and this seems to be working for me.

Hang in there. We are all different and you will find the right things that will work for you. Just keep experimenting and do not give up.

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5/25/12 12:22 P

I'm looking for my Cysters too! No one I am around truly understands what I am going through. I was diagnosed about a year ago. I want to over come this so badly. I want to be comfortable with who I am again. I am excited that I have all of you to look to for support when I need it most! :) I'm here for all of you too!

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5/23/12 7:42 P

Hello everyone! I just joined Sparkpeople today, and was so happy to see a PCOS team. I have been struggling with PCOS since my teens. Like many of you, I've not encountered much help from the medical world. I've also taken various drugs to either start or stop my periods. The hardest time for me was when my husband and I were trying to get pregnant. We tried for 5 years with no result. I tried clomid and all the hormone shots etc... I got very tired of being poked and prodded every week and eventually we gave up. We were able to adopt a beautiful baby boy from Korea and he just turned 7 last week. He's the light of my life, but my difficulties with trying to get pregnant took they're emotional toll and I ended up depressed and heavier than I'd ever been.

I'm finally ready to do something about my weight and my health, and I'm really excited to be here. I'm also thrilled to know that there are women here who understand what it means to have PCOS. I've never had anyone to talk to about this. I look forward to sharing with you and learning how you have managed to lose weight and get healthy with this condition.

Cheers, ryanry5

Edited by: RYANRY5 at: 5/23/2012 (19:43)

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5/18/12 11:01 A

I'm new on the team and wanted to message so many of you. I decided to just join this thread.

I'm a text book case, too. I have all the symptoms and I've had them for decades. The most noticeable ones from my early 20's. I have suspected pcos for the last 17-18 years. Not one doctor has been willing to check PCOS out. Not the ob/gyn who put me on clomid so I could get pregnant with my third son. Not the doctor I told my symptoms to. She totally ignored me and told me I'd be on blood pressure meds the rest of my life and that she didn't believe in giving false hope to her patients. I fired her. Finally, my current doctor is looking into it.

I really need someone to talk with and learn from so I can get a handle on it. Since I've suspected it for so long I'm feeling relief that a doctor is willing to do something about it. It makes sense to me. I always felt that my blood pressure was a symptom and not an isolated problem. I also have thyroid problems. I'm hoping that this is the root cause of it all, and that by treating it I can get a handle on the rest too.

Edited by: AJHONDRNGAL at: 5/18/2012 (11:02)

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5/18/12 9:52 A

I agree with NTREASE1, different things work for different people. For me, after I went on the Metformin I lost about 20 pounds in 4 months. My sisters also have PCOS and Metformin hasn't been effective with any one of them.
I call my PCOS a double edged sword. On one hand it makes it very difficult to lose weight, but on the other hand it has forced me to keep a food diary and be very particular about what I eat. As a result I lose weight, although slowly, but I also feel amazing, because I am only putting good things into my body as opposed to all the processed foods I was eating before. So in essence, PCOS has forced me to become healthy. I started at a hefty 260 pounds and am down to about 215 now, and that's with a lot of cheating and inactivity due to being in school the last 2 years. Hopefully now that I have some more time, I can get back on track.

current weight: 214.0

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5/18/12 9:38 A

We can all suggest different things just keep in mind that PCOS is different for us all. We have similarities but what works for some won't always work for others. I struggled with losing weight before I was diagnosed. It didn't matter how little I ate or how much or worked out, or a combination of either. I'd lose a pound in about two months of killing myself. Once I got on metformin it seems my hormones have regulated and I can lose the weight with a lot less effort than before. I still struggle at times but it's a lot more rewarding to lose 5 - 8lbs a month rather than 0.5lbs a month.

however, my best friend was diagnosed before me. She's on metformin as well but it's not helping her as much as it has for me. I'll share any tips I can that have worked for me but only about half of them make any difference with her. It just proves that while we may both have PCOS that our bodys handle it differently.

current weight: 192.0

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5/16/12 8:17 P

How cool! I've been vegetarian for six years, but just found out about my PCOS 2 months ago. I'm finding it difficult now to cut carbs. How have you been able to adjust?

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4/25/12 5:10 P

I'm beyond frustrated. I went to the endocrinologist, and he basically said there's nothing he can do for me that I'm not already doing.

I've been walking 20-30 miles a week, and I've been doing balance ball and light dumbbell exercises. I've been doing this for over 11 weeks now. I have lost ONE pound. I have cut out sugar. I have cut out carbs (other than beans and peas).

How do you do this? I've never had THIS much trouble losing weight before. I've never been in this great of shape before, either! I went on a 4-mile hike- straight uphill- and I made it.

I won't give up... I just can't believe in 11 weeks of being so careful to eat well and exercise (a LOT), that I'm still only down one pound. *sigh*

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4/24/12 10:08 P

Losing weight is tough, but it can be done. I met with a nutritionist for about 9 months and lost 10 pounds only. It was frustrating! Every specialist I met with just kept telling me to eat less, exercise more, and nothing! I tried every diet and nothing seemed to work, until recently I was also diagnosed with a fatty liver, on top of the PCOS. Oh boy! But, it was this specialist that recommended keeping carbs to no more than 100/day. By the way, she also suffers with PCOS and this was her trick. Well, 20 lbs down and still going! There are days that carbs are higher, and she said it was not a problem, as long as I eat well balanced meals and exercise. So . . . yes, as you can see from most of the stories you read, we can lose weight even if we have PCOS. So . . . good luck, we know you can reach your goal and know that we are here for support! We are all in this together!

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4/24/12 2:16 P

Don't let anyone tell you can't loose weight with PCOS. You CAN. Over 5 years ago I used to weight 245, I now weigh 159 and have kept it off. I'm back to try to get down to 140 for other reasons. It's not easy. There's no quick fix, but it CAN be done. You can do it!

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4/24/12 1:05 P

Hey Everyone! I'm new here as well, and was diagnosed with PCOS in 2007 when I was 23. I usually had normal periods except for in 2008 I didn't have one for 2 months and when it came back I bled for 5-6 months straight! Thats when my Dr put me back on BC and gave me Progesterone to stop the bleeding, a month later I had a stroke from the BC and progesterone. Since then my cycles are normal again but I have never been able to get pregnant which is probably for the best right now because I need to get healthy! This is my first time REALLY trying to lose weight, I gained about 100 in a year and half around 2006 and I had kind of accepted I was just going to be that way..but it's not me and now I'm ready to make the changes I need to!

I know it's harder for women with PCOS to lose weight so I'm a little worried of how it's going to limit my weight loss. I've been at it for a month and lost 11 lbs so far, so I guess thats not bad!

I would love to hear from any of you and feel free to check out my page and add me!!

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4/18/12 11:44 A

I am looking for cysters pcos makes it difficult to lose weight maybe together we can share what will help each other ,,, I had a hysterectomy but that didnt eliminate any of the problems,hirtuism is worse than ever ,gaining weight fast ,,,feel free to add me

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4/14/12 10:46 P

Hey you can add me?

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4/4/12 5:04 P

Hi! I'm a Cyster. I was diagnosed at the age of 16 when my periods were completely irregular- I would bleed for 4-5 weeks and then stop for a week. Ouch. I went on the pill then, and stayed on until I got married (at 23). I went off the pill, and my periods went wacky again. Used Clomid and Provera one month, and got pregnant! When my daughter was 13 months, I got pregnant again naturally (and surprisingly). Then I had 6 miscarriages before getting pregnant again with my son (while taking Metformin) and called it a day! (Adopted our 4th baby).

Anyway, having a TOUGH time losing weight, and I've been watching what I eat and exercising regularly for almost 2 years now. I've yo-yo'ed a lot, but still haven't gotten within 10 pounds of my pre-pregnancy weight (which was already 20 pounds overweight). Now I have 45 to lose, and it's so frustrating. Seeing an Endocrynologist next week, finally. I've been denied for 2 years because of "lack of history". GAH! ;)

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4/2/12 3:52 P

Hiya, I'm a Cyster. I was OFFICIALLY diagnosed in 1996 at the age of 25. The Ob/Gyn did a pelvic ultra-sound and found 45-50 "little black pearls" (his words not mine) lining both my ovaries. I was on the pill since high school because I had very irregular periods and my GP didn't know what to do. He told me at the time my chances of having a baby naturally was less than 5%. I was single and dating, hoping for a family at the time. Let's just say that relationship didn't fair to well when he started talking about family. When I told him the news and that if we were to have a family through medical assistance or adoption he flipped out and it ended.

I have tried to lose weight every which way you can think of. I finally had Gastric By-pass done in Dec. 2011. BUT then come to find out with PCOS this adds a whole new dimension to weight loss and hormones. My adventure is just starting and it will be an experience that will not be forgotten by many.

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4/1/12 7:45 P

This thread is such a comfort as other women share their stories and express the same difficulties that I also struggle with. I really appreciate all of you who contribute your tales and inspire the rest of us to keep up the hard work.

Posts: 3,183
3/30/12 4:24 P

GGmarks- that sounds so hard. I cant imagine. I am only 23 and I've diagnosed with PCOS since 16 or so. It is primarly due to a medication and the rapid weight gain I endured. The medication is called Depakote. There are plenty on ongoing law suits over this situation of it causing PCOS. I didnt get my period for several years. And then when I did finally get it back I bled for about 5 months straight! It is now a normal every month period. Which I truly thank God for! I do want to have children and with me getting normal periods I guess it will be a little easier but I honestly do not know. I also get depressed from my PMS more so than my menstral cycle. However, I have bipolar and that is a big factor , as well. Anyway I hope everything works out for everyone!

Kathy

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3/29/12 9:22 A

My name is Gillian. I am joining this group because I have been diagnosed and struggling with the PCOS symptoms for quite some time now...most of my 20's. I was officially diagnosed in 2009, but I have had the complications since early on. It never really bothered me as a teenager because I only had irregular menses, but it was the "good" kind. I only had a cycle maybe once a year for 2-3 days. As I got older, it got worse. I still only had maybe 1-2 periods per year but they would last FOREVER. I would even have to go to the doctor sometimes to get help making them stop. I can say this contributed to my onset of depression and I am sure you ladies will be able to understand why. The hormonal changes and feeling rather disgusting from bleeding for months at a time is draining. It takes everything from me. Not to mention the fact that I cannot have kids or it is difficult to reproduce. I actually want children and have for quite sometime. Don't get me wrong, I love my children I have but there is a bit of a difference when you do not get to experience the pregnancy and all the stages, then give birth and raise this little person with your face that you helped create.

I am a mother of two because I took on the responsibility of caring for my brother's first two children. He had another a few years later but she remains with her mother. A huge part of me wants at least one child of my own. Not to mention, my kids love their biological parents and it could be any day that they decide they want to take over raising them and then where would I be...with an empty nest.

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3/19/12 8:30 P

I'm joining the PCOS group in the hopes that when the exercise & calorie counting doesn't work, I won't just give up in frustration, especially when my workout buddies start logging weight loss, and I'm still just bouncing the 5 lbs I always do.

I've been through no period, pill induced periods, birth control, metformin, prescription weight loss pills, fertility treatments, 2 difficult & high-risk pregnancies, & am now dealing with a sudden appearance of a period that comes, goes, & stays pretty much whenever it wants to on it's own schedule. We'd like to have another child, but it's more important to improve my health & endurance a little bit more first. I also have a chronic pain condition, & vestibular balance & vestibular migraine issues. (Yay, me!). Anyways, I'm looking to go down in weight while I go UP in opportunities, but sometimes trying to exercise with close friends turns it into a competition, & I hope for more of a team effort.

I'm 195lbs now, & in the obese category, wearing size 16-18. I'd like to get down to 160, if at all possible, & I hope that by keeping in touch with other PCOS ladies, I won't get too frustrated when the pounds do not magically melt off with all of my effort.

Edited by: KEDRA231 at: 3/21/2012 (16:44)

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3/13/12 10:10 A

Hi y'all, I think you'd enjoy my blog :) Chack it out and please comment however you see necessary.

http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=4776122

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3/11/12 9:45 P

I'm also looking for some cyster friends. I've recently been hit with the symptoms harder than usual so I need some support from people who understand. The hair, the BC pill, the insulin, the acne, etc. no one around understands what I'm going through and what I need to help myself.

-Maria

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2/25/12 7:20 P

I'm also a Cyster.

I've pretty much been a "by the book" case too, and it all started once I got my first period when I was 11. Well, actually the weight gain started around 7 or 8 years old, but the oily skin, acne, etc. all hit between 11-12 years old. My cycles have always been so irregular that by the time I was 13 I had nearly a hand full of doctors tell me I'd have trouble getting pregnant and having kids when I was older, although at the time it didn't register with me since I didn't even know if I'd want a family later in life at that age.

My husband and I have 1 child together, a little girl who we conceived after 34 months of TTC. It was a long road and didn't happen until I was finally diagnosed in April 2008 and started Metformin, then after weight loss (went from 214 to 179) and following a Type 2 Diabetes diet as suggested by my doctor, we were finally able to get pregnant at the end of September 2008. Our daughter will be 3 in June and I've lost 101 pounds (248 pounds down to 147) after having her, and I've been off Metformin since we found out I was pregnant in October 2008. At this point we have been TTC again and without luck. I'm currently working on trying to lose another 15+ pounds and get down to a more healthy weight for my height (5 foot 3 inches) so that I'm no longer considered overweight even, before we begin TTC again. Although we aren't avoiding pregnancy either, so if I happen to get pregnant before we're officially TTC and back on medicines and using ovulation tests, etc. it'll be a huge miracle!

I've added everyone that has previously commented before my post in hopes that we can all help support each other through our journeys. Let's lose weight and get healthy together :)

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2/20/12 12:14 P

Boy oh boy do I know that feeling all too well. I myself never understood the impact of PCOS till I started researching the condition, even the doctors didn't know much about it. Once I started doing the research it suddenly made sense, the headaches, horrible periods (when I had them), the skin problems, sleeping problems and a whole bunch more symptoms.

My husband and I have been trying for a pregnancy for eight years, but I have never been healthy when we tried. So this go around I decided who cares about ovulation right now, I need to lose weight, be healthy, quit smoking and then maybe my body will come around.

A little bit of support for women with our condition can go a long way!

20 Days since:  I stopped smoking!

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2/15/12 10:43 A

I first found out I had PCOS when I went into the doctor in Oct of 2009, wondering why we weren't getting pregnant. I asked if there was some blockage or something... that's when they found a dermoid cyst on my ovary.

Been on and off Metformin since then. I went through a time when all I wanted to do was eat and Metformin was getting in the way (diarrhea).

I got the a-okay from the doctor to start a weight loss program... and she put me back on Metformin. Ugh.

Hubby and I stopped TTC (more of a laissez-faire attitude now). It seems that all the PCOS sites and discussion forums focus on TTC, so I'm glad to see others that just want to lose the weight and aren't obsessing on whether or not they ovulated. :)

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1/31/12 10:52 A

I am in the same boat! I try to explain it but I'm pretty sure all they hear is "hormonal imbalance" and then think "so what." It doesn't seem people are aware of how a hormonal imblanace can be so damaging to the body not to mention frustrating. In a way I feel like my body betrayed me.

I ususally end up trying to explain it when people see me inputing the nutrition information on my lunch and they make a comment like "obsessive much?" so I feel like I need to explain why I'm being so anal about it.

I understand it is hard for anyone who's never had it to not fully understand the frustration and stuggles that it causes but it still sucks. I've had asthma all my life and always wished that I knew what it was like for those without it that could run and run and only stop because they were tired and not because they couldn't breath. Now I know what it was like before PCOS and the weight issues and I know what it's like to struggle with all the symptoms and weight gain before being diagnosed and what it is now like even when we are diagnosed. I think it's harder since we know what we were and it was like before we had PCOS that makes it even harder. (And watching everyone else that does what we do not struggle as much with their weight).

To make it all worse we're not all the same either. My best friend has it but the only symptoms she has are weight gain and not ovulating. I, however, have all the symptoms and seem to be a "by the book" case. It's just frustrating with all the unknowns and variances.

Edited by: NTREASE1 at: 1/31/2012 (10:53)

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1/27/12 12:31 P

Emerald, I agree. I'm never sure when to go and get the ovaries checked out. I've had painful periods since they started so it's hard for me to recognize the differences in pain.

I've always had trouble explaining PCOS, especially because so many people are judgmental when I try explaining it. A lot of people don't believe me. They especially don't believe me when it comes to how hard weight loss is or how differently I have to approach it.

Edited by: IMOFF2DLOONYBIN at: 1/27/2012 (12:33)

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1/27/12 1:48 A

(I know! For how common PCOS I'm very surprised that I'd never heard about it until I was diagnosed about 6 months ago. Its nice to not have to try to explain why I have so many ultrasounds when I'm not trying to have children. For all the research I've done on the topic, I still can't give a very satisfying answer to people when they ask me what it is)

(I'm still learning about how my PCOS is affecting my body, and am still trying out different hormone therapies, but I'd like to hear about how it is for others. I never know when the ovary pain is 'normal' or when it's something I should be worried about)

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1/10/12 12:12 P

i am very grateful to the group for being here. a lot of times, it is hard to talk about pcos to people, and so i have found a lot of comfort and support knowing that there are others out there that understand what i'm going through.

i've had pcos for a long time, however, my best friend (who has been my best friend since middle school) was just recently diagnosed. of course i'd rather her not have to deal with it, but yes, it is nice to have someone close to me to share the journey.

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1/9/12 12:17 P

I am in the same boat! I train for marathons throughout the year! I usually do 3 a year! and I exercise as much as anyone, but I don't see the punds dropping off, like my fellow workout partners! But, that is why we are all here to support each other and not let each other give up! Just remember that what you are doing may not provide INSTANT results, but you are making your body stronger so It can FIGHT PCOS! DON'T GIVE UP!!! YOU ARE WORTH IT!

Posts: 902
1/9/12 12:24 A

I have been diagnosed with PCOS for about 3.5 years now. I'm married, but no kids. Right now we are feeling no kids, but we may change as we get older. It's hard to explain PCOS to people because there is so little research into it. A lot of the time people just say I'm lazy and not really trying to lose weight. Which pisses me off. I do things that would have made other people lose 30lbs by now but I've lost 3. Sometimes it's just nice to talk to others who are experiencing the same things, or have.

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Posts: 42
1/6/12 8:30 A

Hello Cysters!! I am so glad to see this cyster is not alone on this journey. I am single No kiddos. Although I hope to have a family one day. At this time in my life I am just trying to reach my own individual goals and be a better me. This journey is tough and I am finding more and more those around me who do not have PCOS really just do not understand what I am dealing with…. They just do not understand it.

Let’s do this Cysters. I am really looking forward to getting know every one!!

Posts: 3,941
1/4/12 8:41 P

Hey there! I'm always in the market for a cyster to talk to! I definitely would like to have a cyster for mutual support and friendship. At this point in my life, I'm working on my career and although I'm in a serious relationship, we're not looking to have children anytime soon.

SparkPoints: (126,235)
Fitness Minutes: (127,817)
Posts: 14,717
1/3/12 11:01 P

I'm always looking for other Childfree Cysters to connect and chat with as I get really tired of all the TTC talk and other fertility talk that many cysters seem to have as their main aim (if that is your goal, great! but for some of us its not ever going to be an option so dealing with other's who are either childless not by choice or childfree by choice is my preference)

Pounds lost: 48.0

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SparkPoints: (16,569)
Fitness Minutes: (10,022)
Posts: 138
1/3/12 3:35 P

I feel like I am always looking for vegan or vegetarian cysters. I find some, but none that are very active in any cyster community. I was vegan before being diagnosed, and I though now I sometime eat eggs, I still abstain form any meat and dairy (since I'm lactose-intolerent).

So if there are any vegan/veggie cysters out there, please feel free to message me!

current weight: 156.6

170 158.75 147.5 136.25

125

SparkPoints: (528)
Fitness Minutes: (120)
Posts: 14
1/3/12 12:27 P

Cyster here :)

SparkPoints: (70,468)
Fitness Minutes: (27,563)
Posts: 6,240
1/3/12 10:23 A

I'm always looking for people in similar situations to talk to :)
I've kind of been a bummer during the holidays we just had. Hope to get out of my funk now.

Pounds lost: 36.5

0 24.5 49 73.5

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Posts: 902
1/3/12 1:11 A

While I don't know that I like being called a cyster, I think most of us know that cysters are those close to us experiencing similar situations as us and bonding over that. Here is a place we can come and maybe find a cyster to discuss PCOS with or life in general.

current weight: 234.0

245 218.75 192.5 166.25

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