PCOS Soul Cysters Unite

ladygloria

PCOS interferes with my workouts all the time. I'm in constant pain, and it keeps me from being active. I'm glad to know other people have the same issues I do!

What kind of pain?

mggirll0122

I was officially diagnosed 15 years ago when I tried to get pregnant with my second child. It took me reading a magazine article and finding the doctor who wrote it (unbelievably he practiced in my state) to get confirmation. Although he confirmed it, he gave me no real remedies for the PCOS, except the option of getting a weekly injection that would put me into early menopause. Umm, I wanted to GET pregnant??

Fast forward 15 years of dealing with all the cosmetic issues, telling every doctor I have dealt with about PCOS (and in most cases having to educate them), being diagnosed with "Lupus-like" symptoms for 8 years and taking meds, to now. One month ago I finally was seen by a new rheumatologist, and this is what I really wanted to share. He believed that I do not have Lupus, rather that I have insulin resistance caused by the PCOS, which is now linked to causing inflammation (he had just returned from a conference that discussed this). His own daughter has PCOS, which I believe vests his interests in learning more. Since then he has referred me to a doctor guided nutrition program (high protein, low carb) and I will begin with Met tomorrow.

I would LOVE to be friends with anyone that would like to be!

Cheers to you all,
Sharon

nicnic424

I never TOM problems until after I had my daughter in 2002. I was diagnosed with PCOS in 2005. I was also diagnosed with Hypothyroidism. I was put on metformin for the PCOS and meds for the hyrothyroidism. I was taken off both the metformin and the other meds.In 2008, my husband and I tried fertility treatments. I was on chlomid for 3 months and had no luck. The doctor suggested that I would have better chances of concieving if I lost weight.

I was at my highest weight, 263, in 2009. I decided to get the Lap-Band because of all the failed diet attempts. With the Lap-Band, I have gotten down to 213. I have been semi regular with my TOM since November! It however has not helped with the hair growth, hair loss, or the acne.

I have found herbal supplements that are helping with the hypothyroidism and the PCOS. I take thyrodex for for the hypothyroidism and am taking cinnamin supplemets to help with the PCOS. The cinnamin helps regulate blood sugar and helps metabolise body fat.

ANyone is more than welcome to add me!

lildietitian

Hi All, I was diagnosed with type 2 diabetes in August 2003 and later diagnosed with PCOS early 2004. I was put on metformin, and avandia and eventually amaryl. Symptoms : ultrasound looked normal (no cysts, no enlargement of ovaries) but I had the dark colouring under my armpits and on the back of my neck with a velvet feel, abnormal periods never consistent and late to begin in adolescence, I was also diagnosed with insulin resistance early but that was never addressed until full bloomed diabetes, I was overweight from age 10+ (my father had us on every new fad diet going but nothing ever worked).

2003 I changed my life, really focused on diet and exercising. I weighed about 215lbs at this point. Lost 75lbs in my first year and really got a hold on life. Found a Nutrition program a few hours from my hometown and decided to pursue a career in nutrition and to move away from home.

My second year away from home I went in for a check up and got some bloodwork done... I ended up in emerg that evening with a blood sugar reading of 50mmol/L ( target 4-7mmol/L) The next week I was put on insulin and my life has been so much better... up until last November. I always fluctuated with my weight but nothing too substantial. Last summer I was the smallest I've ever been and that was 140lbs and a size 6!! I was loving life but I did look sick and I guess my family thought so too but never said anything. October I switched jobs and tried my hand at waitressing... stressful due to the fast pace and not having a guaranteed schedule. I started to pack on weight. :`-( I put on weight and got depressed (depression is said to be common in diabetics now, and this was BAD!!) I put on 40lbs- none of it muscle!! The cellulite that I have and the amount that stuck to my stomach is disgusting but I'm dealing with it... My body has become even more insulin resistant in the past 6 months and it doesn't help with this extra weight.

Life is better now, I'm pursuing further into preventative medicine... I have gotten a job in a fitness centre and am motivated everyday to live an active lifestyle. I have finally discovered that I can't lose weight like everyone else because of my condition and i have to work harder. I am looking at a low GI diet that could be beneficial to those of us with insulin resistance... I am so thankful to have found this thread and will keep coming back for the support and to be support!!


Feel free to friend!!

thehunger

I was diagnosed with PCOS about 8 years ago and have a (male) sibling with type 2 diabetes. I'm not currently managing it with meds as it's too much of a bind. Have read that diet and exercise are the best way to keep it under control and as I can stand to lose more than a few pounds, I have decided that this time I'm going to completely change my lifestyle rather than follow my usual feast and famine routine. 12lbs down, another 42 to go... Would be pleased to receive advice and support from anyone in a similar situation and very happy to return the favour.

sincereme

I was diagnosed with PCOS about 8 yrs ago after the birth of my 2nd child. His pregnancy brought it out I guess. Prior to knowing I had it, my gyn at that time kept putting me on BC and not giving me an answer as to why I didn’t get my Monthly Friend. I got fed up and stopped the birth control. I began to grow facial and body hair, lose my hair on my head, no MF, some acne and just bad mood swings. Finally went to another Gyn, she did some testing and told me that I had PCOS. Well, just the syndrome not full blown at that time. Soon after, maybe a couple of yrs it became full blown. I’ve had cysts that have ruptured and that is soooooooooo painful. Feels like you are giving birth almost. I am currently at my highest weight 221lbs :O( . This is hard for me because all my life I was 110 – 130 lbs and now I am raging in the 200’s. With PCOS I have become Insulin Resistant, Vitamin D deficient and my cholesterol is high. Something that was never a problem before :O(

I am trying to lose weight. Change my eating habits and become healthy again. My hubby and I are trying for another baby and its very hard on me because each time I think it has happened, I take a pregnancy test and my heart breaks. I know this will get better and I will be able to have another child.

I am here for support if anyone wants to be friends!!!!

sincereme

Oh, I also meant to say I was diagnosed with PCOS at the age of 16, and ovarian cancer at 21. My husband and I have been trying to concieve for going on 8 years, and it seems we will never be blessed.:sad:

Just wanted to tell you, don’t lose hope. My sister in law has PCOS and endometriosis (spelling???...lol)… After 15 yrs of and 6 miscarriges, she now holds her precious baby girl in her arms everynight!!! It has been a hard and painful road for her. She had to adjust her life in many way before conceiving and finally got pregnant. She is in awe right now and in love with her baby girl. Don’t lose hope. :flowerforyou:

previn84

I've got PCOS. Anyone is more than welcome to friend me. I want to go through and read all this, but I'm in a hurry right now. I'll try to log on and join the discussion later today.

nicnic424

Has anyone with PCOS gotten pregnant? My husband and I have been trying for about 2 years ( well i dont count the first because my doctor didn't put me on anything to regulate my period) so we have been trying for a year with meds and I'm tracking my periods very well, but I just dont feel like there is any hope. Can anyone lift my spirits at all. I'm the heaviest i have ever been and when my husband and I met I was 183 pounds and i didn't have pcos and then i gained alot and all of a sudden now i have it. Can it go away with weight loss? Am I never going to be able to have kids? I get very depressed seeing all my friends having babys and I can't have one. Please I need some support. :-(

The doctors told me that I have had PCOS my whole life. My husband and I had a baby girl in Nov 02. My periods were never regular so it was a complete shock to find out that I was pregnant. We have been trying again for the past 7 years and nothing yet. Have you thought about seeing a fertility specialist? I know several people with PCOS that has gotten pregnant on chlomid.

sincereme

Got this in my email and thought I would share!!!!


What's Better for PCOS -- Walnuts or Almonds?

Some fats and oils are good. Some are bad. Do
you know the difference? For example, are nuts
something you should eat or avoid?

For women with PCOS, raw whole nuts are
sources of helpful fats, according to research from
the University of California.

Thirty-one women with PCOS were given either
walnuts or almonds (31 grams of total fat) for six
weeks.

Although each nut had somewhat different effects,
the overall effect of each one was quite beneficial.

W.eight did not increase with either walnuts or
almonds. And, both nuts reduced "bad" LDL
cholesterol levels.

Walnuts reduced long-term glucose (blood sugar)
levels whereas the response with almonds was
more variable.

Walnuts increased hormone binding globulin,
which is a good thing for keeping your hormones
under control. Almonds tended to reduce the
potency of male hormones.

We recommend moderate consumption of a
variety of raw nuts along with fresh vegetables,
adequate high quality protein, and some whole fruit
occasionally.

murphj1

Hello all,
I am 23 years old and was diagnosed with Type 1 diabetes at age 2, hypothyroidism at 16, and PCOS at 19. Losing weight is such an incredible struggle. It drives me crazy when people say "just go to the gym and eat less." I know it is a lot of hard work day in and day out with balancing medications, going to the doctor, eating right, hitting up the gym, etc... It is nice to see others are out there who understand. Feel free to add me as a friend, I would love to be a part of a support group.

DrAJ84

Anyone have the dark patches (can't spell the actual name)? I'm so frustrated not being able to wear short sleeves. Anyone have anything that gets rid of them? My doctor said I'm stuck with it, but it'll fade as I lose weight. Feel free to add.

I have dark spots on my inner thighs and are mildly present at underarms. It does fade as you lose weight, mine have. I use black soap and other natural soaps along with vitamin c serum and nutraderm lotion and it helps for some reason. Not sure if there is clinical evidence on what works.maybe the dermadoctor website has an article.

wantthistowork

I fear that I have this, or might....just wondering what symptoms/signs you had? Were any of you diagnosed before you were trying to get pregnant? How did you know?

wantthistowork

bump?

SageLikeTheSpice

I was diagnosed with PCOS two years ago when I at a TOM that had lasted a full month. Turned out that I had a cyst that was bleeding. My gyno removed it and did some bloodwork and told me I had PCOS and that it was related to insulin-resistance, and then he put me on metformin. He actually didn't say anything about diet and exercise, but I did some research on my own, so I started working on that (I had already been working out, but not seeing any results). Luckily for me, the metformin has never really given me the side effects that people complain about.

When I went to the doctor, my weight was 280 lbs, which was 40 lbs higher than it had been the previous year (when I had last checked my weight before). I was floored, especially since I had been working out for several months. I've lost about 65 lbs since, and I'm looking to lose another 60, which I hope won't take another 2 years. Oh, and when I plateau, it's for like 6 months, which really really sucks. I don't know if that's the PCOS's fault or what.

Some people in this thread have been talking about having small periods because of PCOS, but I always had really heavy and often longer ones, so I'm also on Loestrin-Fe. I have no intention of having children, so I'm not disappointed by the difficulty it creates for that at least.

jnlk80

I was diagnosed with PCOS 6 or 7 years ago. I am on Metformin and on and off thousands of different BC. My weight and my mood has been up and down for years. I tried for over two years to get pregnant and after a miscarrage had my beautiful now 2 year old girl. It will happen with consistancy! You just can't let the infertility get you down. Relax and concetrate on your health! I am now working to get this whole PCOS thing in control. ( ps I had a c section and with my ovary in his hand the doctor yelled out to me hey you have PCOS really bad! ) If you haven't already, check PCOS diva website. She has helped a whole bunch! I started last week taking this supplement called Femmenessense macaharmony which is Maca root. I am not sure about it yet. I think being on birth control too I am going to lower the dose to one a day opposite time of the BC. I really think clean eating and avoiding dairy and gluten (not ommiting) just avoiding really keeps the cravings down. Excercise is SO important, but SO hard. Would love some friends suffering and willing to share secrets! oh and MOTIVATION!

MissMaryMac33

I was diagnosed with PCOS almost 15 years ago...but I wish they had caught it about 30 years ago!
I was never able to have kids and the PCOS/wieight gain turned into type II diabetes.....because I had no clue I had it.
It's great to hear so many people catching it quicker now!

Last year I had endometrial ablation which was the best thing I ever did. No more periods! No more cramps..and no hysterectomy.
Too bad it doesn't get rid of the bloating and crazy mood swings

Feel free to add me! I am currently not taking anything for my pcos and my diabetes has been reversed with weightloss.
Mostly I just watch everything I eat and try to eat very low carb/low glycemic/high protein....works for me. Exercise helps too!

MissMaryMac33

We went throught the same thing! I was misdiagnosed for years --- and when my sister couldn't get pregnant, her doctor gave her an article on PCOS. She read it and said "wow thats not me, its my sister!" --- and she was right. It took me a few visits to find a doctor who even knew what it was! I wasn't able to have kids, neither was my sister so kudos to all those who were blessed in that arena!

I was officially diagnosed 15 years ago when I tried to get pregnant with my second child. It took me reading a magazine article and finding the doctor who wrote it (unbelievably he practiced in my state) to get confirmation. Although he confirmed it, he gave me no real remedies for the PCOS, except the option of getting a weekly injection that would put me into early menopause. Umm, I wanted to GET pregnant??

Fast forward 15 years of dealing with all the cosmetic issues, telling every doctor I have dealt with about PCOS (and in most cases having to educate them), being diagnosed with "Lupus-like" symptoms for 8 years and taking meds, to now. One month ago I finally was seen by a new rheumatologist, and this is what I really wanted to share. He believed that I do not have Lupus, rather that I have insulin resistance caused by the PCOS, which is now linked to causing inflammation (he had just returned from a conference that discussed this). His own daughter has PCOS, which I believe vests his interests in learning more. Since then he has referred me to a doctor guided nutrition program (high protein, low carb) and I will begin with Met tomorrow.

I would LOVE to be friends with anyone that would like to be!

Cheers to you all,
Sharon

gethealthy10

I haven't been diagnosed with PCOS, but I think I have it. I don't have health insurance, so I don't go to the doctor.

KeshiaV

Hi there

I was diagnosed with PCOS when I was 13 (10 years ago), and I've been living with a host of ridiculous symptoms ever since. I'm currently not taking any meds to assist with the condition, but I'm looking in to cinnamon pills to help with insulin resistance. I have quite a bit to lose to get to a comfortable weight and I welcome any friends who want to join me on this journey!

k2quiere

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.

cassmb

I was diagnosed with PCOS about a year ago and it has been ROUGH to say the least! Acne no menstrual cycle infertility and WEIGHT GAIN like no other! I was used to being 130 lbs max my entire life and now I am awfully close to 200 lbs. I went to a fertility doctor to help with having another child but she hardly addressed my concerns about losing weight to be healthy for the baby first. I have been so up and down it is hard to be motivated to just work hard but I think I have finally found the right balance and now I just need to stay with it. Any suggestions? encouragements?

chelseamckell

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!!!

kelly1922

hi! i'm so glad to have found this thread! i was diagnosed with PCOS and endometriosis when i was 19 years old. i'll be 39 next month. i was very blessed to be able to have two kids, ages 6 and 9, with no fertility treatments, so i hope that's encouraging to some of you! i also have lupus and celiac disease. i'm taking Metformin 1000mg right now. i'm 315 lbs., the biggest i've ever been. and this weight will just not come off! so frustrating. i also suffer from facial hair and acne as a result of plucking the hair. i just went for my first appt. to get threading done, so we'll see how that goes. i'm hoping that by taking the Metformin and continuing to eat a low sugar diet that i can start to get some of this weight off. i definitely need support, so please friend me!!!

starrcrow

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

phinners

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??

caligirl2802

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

phinners

I'm surpised you were able to get hold of Cerazette. It was recalled by the manufacturer over some manufacturing issues. Maybe it's all sorted now though and re available.

ShannonJohnson

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!

cobarlo14

OK - Saw weight loss Doctor today!!! For those with PCOS - He said that my daily diaries are great and the only changes he would make were two: 1> More protein in the morning!!! 2> Change my calories from 1700 to 1800 per day = SCORE!!! What!! Up my calories??? Ummm OK!