Hi,
I have just joined this site and am yet to read stories of other peoples situations, but i need to talk to someone who understands how i feel and can giveme some support.
A brief rundown of my condition:
I was diognosed with PCOS when i was 17 years old. Although alarming, i went on a estrogen only pill and once my periods regulated, i disregarded it, assuming it would correct itself. Since that time, over the past 5 years, i have packed on an amazing amount of weight, i eat well (am a vegetarian) and exercise semi-regularly. I went to the doctors recently who said my cholesterol levels were great (as in low), but there was a problem with my insulin levels.
So basically thats me up until yesterday. I got in the shower to wash my hair, i was just about to get out and i looked down, to see clumps of my hair in the drain. I have been steadily loosing hair for about 6 months, but nothing like this. I know male pattern baldness is a symptom of PCOS and i also know it can be irreversable.
I am finding it increasingly hard to deal with this situation. While my friends and family are supportive, they dont really understand how i feel, how degrading this syndrome really is. Excess weight, facial hair, acne, infertility, balding. Has anyone else been through this?
I never took my polycystic ovaries all that seriously, now i am scared and feeling very alone about my future. Any support or advice would be greatly appreciated to help me through this difficult time.
I feel exactly the same and I joined this website today. I am so glad to have found this website, and I just wanted to let you know your not alone, everything you just described is me also, I have gotten to where I just put my hair up everyday and don't bother. Afraid that one day I will bald, but I am 21 diagnosed at 19. Very scary thing, I played softball for 15 years and was in great shape and then everything went wrong, I am almost 250 pounds, and everyday is a depressing thing. Do you feel depressed everyday like I do? Please contact me anytime you need to talk cause me and you are the same, and that is why I am very excited about this website cause I know everyone here has this problem and we can all support each other in succeding in meeting our goals! Cheer up it will all be okay!
I know how you both feel. It's a hard place to be with this PCOS thing...and unless you're dealing with it yourself, nobody will ever know how we feel. My periods were NEVER regular from the time I was 11 1/2, unless I was on birth control. I didn't even KNOW I had a problem until my ex husband and I decided it was time to start a family. We tried for a year naturally; of course, I got maybe 3 or 4 periods during that time. When nothing happened, I went to my general doctor, who was NO help...they said "lose a few pounds and you'll be fine." So, after years and years of SOMETHING being OFF, I sucked it up and called an OB/GYN. They ran so many tests I wanted to rip my hair out! Finally, my OB came back with the dreaded news: not only did I have an insulin resistance, causing me to pre-diabetic in a family who was already going to "bless" me with diabetes, but also as having PCOS. I was....infertile. For 6 months, I was on metformin for the insulin resistance, which actually brought back my periods all on their own. I was also on Clomid to help me ovulate and possibly conceive. Well, in the 6th and final month, before having to consider alternate options I became pregnant. And as quickly as it was there, it was gone and the most devastating thing to deal with because I felt like I killed my baby, like my PCOS made me reject my child. I had a miscarriage. Because I already didn't feel crappy enough due to the yo-yoing of weight for well over a decade, the cramping, the infertility, the moodiness, the anxiety...let's throw THAT in the mix! So, after that, I was done. I went back on birth control and never looked back. I lost a BUNCH of weight, due to stress and my body having to recover. I think it was 35 pounds from December to the end of February after my miscarriage in November. I thought I could ignore it forever. Well, I can't ignore it anymore. Since the end of July, I have gained back 20 pounds, I'm ALWAYS tired, and for the past 4 weeks, I have had consistent lower abdominal cramping. It's ALWAYS there, and sometimes it feels like someone is stabbing me with a knife. It's truly affecting my life at this point. I have an appt. with my OB at the beginning of December for my yearly exam, but I don't think that's soon enough. I think I have endometriosis, which scares the crap out of me. The only time I feel like less of a woman is knowing that it will be extremely difficult to have children, the one thing I want most in this world. I see women I know, and women I DON'T know, who are pregnant, and I just want to scream...or cry. I feel so alone, but I know I'm not. I'm just so tired of the possibilities and the "what ifs." There shouldn't be "what ifs." This is my life and I should be able to control it! Just remember, we are all in this together. We all have different symptoms, different medications that work or don't work, and so many other differences, but we all feel the same. I hope one day we can ALL overcome this demon screwing with our minds and our bodies! Good luck to you all!
I posted for the first time yesterday and spent hours reading posts on this website. I cried a little and felt a lot of relief. I started taking Metformin today. No side effects yet. I'm cutting out junk food and most carbs, and I'm not looking forward to depriving myself of yummy junk. I think I'm addicted to sugar. I read about some other chick on here who was the same, so maybe that's another side effect. At one time I lost about 40 lbs and over the last year and a half I've gained it all back. So mad. Lots of facial hair, infertility, skin tags. Not balding, thank god. This is the only place I can come where I don't feel like I'm all alone. Keep reading the posts and they'll give you hope.
'Everything is not okay' is actually a GOOD thing to realize. It took me a while (years) to look at my PCOS and say 'everything is not okay and if I don't change something it's only going to get worse'. My Doctor (bless her, she is really a wonderful woman) helped me survive the first few years after my diagnosis with Yasmin. After a while, though, I saw the BCPs for what they are: a mask for what's really going on. They were a necessary mask, but I had to take it off to really get to the core of who I am, Syndrome and all.
Try to remember what made you feel 'everything is not okay', and for your own benefit, try to repeat it as often as you can! Our deepest hurts can be our best friends, because they show the way to our truest desires. It is strange, but true!
For me, for instance, it takes going to a yoga class every day where I have to stare at my body in the mirror for an hour and a half. I intentionally wear very little, because I've found that when I hide my body from other people I'm really just hiding it from myself. Some days I'm disgusted at what I see in the mirror, but most days what I see gives me hope because I was willing to LOOK at where I really was and live with my disgust long enough to decide to do something about it.
I just joined today, and it is strange to see stories so similar to my own on the computer screen. PCOS was first mentioned to me in 2000 when I was a freshman in college. My doctor then told me it wouldn't be a concern until I wanted children. In 2006 I learned that this simply isn't true. Drastically reducing the amount of sugar I eat and loosing 20lbs helped my symptoms a lot, but they were never completely gone. The facial hair and extra weight were strong visual reminders and never completely went away. Recently, I changed jobs and everyone keeps chocolate every where! There goes my reduced sugar intake and while I've only gained 5lbs, the amount of hair on my face exploded! I also just realized my hairline seems to be receding although at this point I think it is only noticeable to me because I looked for it. All of this was a strong reminder that I have to take my PCOS more seriously! It is necessary for my health and my future fertility!
You mentioned you are vegetarian...how is your iron level? Mine was low in the past and my hair fell out so badly that I was constantly clogging the shower drain. Also as a vegetarian are you eating a lot of carbs? If you are insulin resistant it will really pack on the pounds....believe me I know.
I do know how you feel. I feel they same exact way. I was also diagnosed at the age of 17. At that time I was put on birthcontrol pills. I am now 36 and ready to have children. I have been trying to do all the research I can now that I understand this a bit better but it seems that no one else understand what we go through. Yes they try to be supportive but all I get is you have to loose weight and eat better. I do eat pretty healthy and no matter how much excersise I do or diets I can't seem to loose it. I try to put enough makeup on to try to hide the facial hair since I am very concious about it. I have so much hair all over my body it is tough trying to keep shaving it. I know my DH does not loke it but he really does not give me a hard time about it. I am actually a bit afraid to get pregnant b/c since I stopped the pill in January I suddenly had dangerously high blood preassure in which I am now being medicated. Due to the high blood preassure I am afraid I will get preclampsia which can be dangerous for me and the baby. My insulin levels are also high but my sugars are normal. I will be seeing a reproductive endocronologist in December to see what treatments I will need to get pregnant.
First let me say this you are surely not alone. I feel the same dang way. I want to say a few choice words, but will remain PG because I have faith. But, I am mad as he**. I was Dx when I was 17. I had never gotten a period. I have the facial hair and my DH is so wonderful that he will buy my shaving cream. It sucks. I am a BIG lady too about 240. My weight is a yo-yo. I have lost about 80lbs in 8 months taking the met, no carbs and exercising like a mad woman. But, then I will screw up and gain those 80 back as fast as I lost it. It shouldn't be this hard for us, but the reality of it is... that it is. My hair has thinned out too. But, I am beautiful dang it. You are beautiful too. I was told I would never have babies, but I had twins... I was 34 and had tried for 10 years but it happened. Please read my story ladies..."There is Hope". Just a word of advise because I have been there most of the OBGYNs are clueless when it comes to PCOS. I had to see an endocronologist tosee any results. But, what I have to remember the is... the battle is never over... we will sturggle with this BS for the rest of our lives. So take it in stride, don't let it beat you, because I won't!
__________________ Pray Until Something Happens
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I posted for the first time yesterday and spent hours reading posts on this website. I cried a little and felt a lot of relief. I started taking Metformin today. No side effects yet. I'm cutting out junk food and most carbs, and I'm not looking forward to depriving myself of yummy junk. I think I'm addicted to sugar. I read about some other chick on here who was the same, so maybe that's another side effect. At one time I lost about 40 lbs and over the last year and a half I've gained it all back. So mad. Lots of facial hair, infertility, skin tags. Not balding, thank god. This is the only place I can come where I don't feel like I'm all alone. Keep reading the posts and they'll give you hope.
what is metformin? it seems a lot of people are on this...just curious
p.s kylie i havent experienced hair loss, but i started putting on weight the moment i got my period. and i know how hard that is. i hope you are ok. i cant imagine what it is like to lose your hair. But i can relate in some ways. you are awesome.
My older sister has PCOS, so I knew of the syndrome before I was diagnosed officially back in July, six months after seriously TTC. But, of course, my symptoms are much more severe than hers are. She conceived two happy, healthy, beautiful children without the help of any medication, and she is now being treated with birth control pills. She's having a tough time getting regulated, as well, but I'm horribly jealous with the ease of her conceptions.
My hair started to thin (not dramatically, but enough that I noticed) about three months after I went off of b/c, and the acne kicked in right away. That was the most embarassing because it's right there, out in the open for everyone to see. I put on about 20 lbs., and I was already about 10 lbs. overweight. And I had no periods. Zero. Nothing. And no pregnancy.
So, after my original OB/GYN stated there was no way I could have PCOS after...well, not really doing anything at all, I went to an RE. Best move I ever made. I researched and found one specialized in PCOS that my insurance would cover, and I went to see her. She immediately put me on Metformin XR 1500 mg, and within a month, my skin cleared up and my hair, though it hasn't ever totally come back, is much healthier. I had a period two months after starting it, and I was so happy, I cried. The weight, on the other hand, was a toughied. I worked out semi-normally, and I ate decently--not great but well enough. Three months ago I started on Weight Watchers. I have now lost those 20 lbs. and am eating into those original 10. I don't do the meetings; I use their online function, and that works for me. I've heard of PCOSers using the South Beach diet and really liking it, and others, like me, have used WW and done well.
My first recommendation is to talk to your RE about Metformin, or another option to help with your insulin resistance. Get a good doctor. He or she is your best ally. Look for someone who is specialized in PCOS. 1 in 10 women of childbearing age have PCOS, so you are most definitely not alone!
Just an FYI: My blood work came back consistely "perfect," and I have PCOS with insulin resistance. Sometimes, PCOS is diagnosed without any "numbers" supporting it. It's a tricky syndrome that way. I was "officially" diagnosed after an ultrasound was done, and the doctors saw the many cysts on my ovaries. I saw them, too. I cried a little then, too.
There's a great book out there that I started to read that was really helpful--"A Patient's Guide to PCOS: Understanding--and Reversing--Polycystic Ovary Syndrome" by Walter Futterweit. It had a lot of great tips. The best thing you can do for yourself is be educated about this syndrome. Knowledge is power when it comes to our health.
I hope my story and all this helps. And please know we're right there with you.
This is a very hard disorder to deal with. I am only 26 and my hair is starting to thin so I cut it all off. I use to have hair down to my rear. Now it's just off the top of my shoulders. People say "it's just hair" but for many women, we are defined by our hair. As shallow as it may sound it is true.
But the up side to this is that I don't focus on superficial things like I use to. I am still me. Dh and I are trying to conceive and it's not going as planned but that's okay too.
If you ever need a one on one talk, just let me know.
Also, have you though of going back on estrogen? BCP?
Everything is not Ok... 
