PCOS/hair loss/weight loss advice needed :)

Discussion in 'Looking For Advice (my story)' started by Rabbit, May 14, 2010.

  1. Rabbit

    Rabbit New Member

    Hi ladies! I've been a member of the Women's Hair Loss Project Network since last August, and every single person on there has been amazingly supportive and friendly. I even have a blog entry about how grateful I am for y'all :)

    Because I've been stressing majorly about the weight loss, I put a post up on a different website, in a forum specifically about weight loss. Well, let me tell you what--I have even more appreciation for the ladies in this network now! I posted basically the same thing as I have posted below, and I was instantly ATTACKED. I was called anorexic, psychotic, told I needed to be checked into a psych ward, told that I am starving myself, told that I was "stupid for eating organically", told that I was stupid for not knowing how to gain weight...within one day, there were a couple dozen replies on my thread, every one attacking me and telling me I'm a horrible person for being so thin. It was so bad that I started crying at work, and I got even more upset when I realized there was no way for me to delete my post...I had to email the site admin and have her delete it for me. Talk about humiliating and awful. So now I am here, where I should have been in the first place, posting my story once again, and humbly asking for advice, or just comfort, from women who have been in the same situation as me!

    Sooo my story! I was diagnosed with PCOS about 5 years ago, but I know I've been struggling with it for much longer than that. I was put on birth control pills to manage the PCOS, and that did seem to help. But the birth control was a whole new, terrible nightmare. I had every side effect in the book, including, you guessed it, major hair loss. I went off the pill going on a year ago, but I'm still struggling with the hair loss--instead of getting better, it has gotten worse.

    Also, since I went off the pill, I've lost around 15lbs. For someone my height and size (5'10 and now 115lbs), this has been really crappy! The backstory on my weight is: I've always been under-weight, was very tiny when I was a kid, and in my teenage years I was around 100lbs for a few years. When I was in my early 20s, I miraculously got up to 130lbs, which was amazing--I bought new clothes & bras...I LOVED IT!

    But now that I've lost the weight, I can't seem to get it back on, no matter what I do. I eat organically (have been for a while), I have protein shakes every morning, eat a lot of small things during the day, I'm not vegetarian, I take supplements once a day...I don't know what to do. All my pants are literally falling off--I went from a 3 or a 5 to a 0 or 1 now. My bras don't fit anymore, etc. I've always bruised very easily, but now it's even worse--and no, I'm not anemic, and yes I take an iron supplement once a day. I feel fragile now, and I'm only 27. When I was at my best weight, I was working out 3 times a week--very light cardio, mostly weight training. I wish I could get back to that, but I'm an over-full time student, (getting a degree in dietetics!) with two jobs and a 30 minute commute every day. I just have zero time to go to a gym, and no money for the membership.

    I never had "curves", but now I feel like a stick figure. I've been to a doctor several times about this and the hair loss. We've started blood tests, but the first two rounds (7 different tests, which included a two different thyroid tests) have come back normal. Normal is good news, but not good at helping me figure out what is wrong with me. My doctor and I are working on this, but he has no ideas so far other than increasing calorie consumption.

    I already pack as many calories into my daily diet as possible: morning protein shake like I said, lots of whole wheat bread/peanut butter sandwiches (so much peanut butter I'm totally sick of it:p), cheeses, crackers, veggies, fruits, meats, granola bars, whole wheat high-protein pastas, pizza, eggs, etc. I live alone and spend at least $80 a week on groceries just for myself, if that helps give an idea of how much I eat. I eat two to four whole meals a day, and snack all through the day, as much as possible.

    I am lactose intolerant, so I don't get as much dairy as I would like. I can eat cheese and yogurt, but not fresh milk or ice cream. Because of health issues, I've also cut a lot of sugar out of my diet in the past year--I limit it to fruits, organic granola bars, and honey. I never eat any refined white sugar, HFCS, or artificial sweeteners.

    Again, the PCOS may be playing a part in all of this, as well as stress, but there has to be something more. I'm open to any and all suggestions about weight gain, PCOS, and hair loss, and hope some people have had similar experiences that could shed some light on this. :):) THANKS LADIES!!!
  2. Reb

    Reb New Member

    Hi Rabbit,

    I'm sorry to hear that you were attacked on that other forum. They are insensitive and ignorant. Everyone's metabolism is different, and just as some struggle to lose weight, others struggle to gain it (or keep the pounds on).

    In terms of weight gain, I think you are taking some good steps. Snacking often is important, as well as having high-calorie snacks (if you are sick of peanut butter, try other kinds [e.g., almond butter, tasty stuff]). It sounds like the culprit may not be what you are eating (assuming that you are eating good portion sizes), but rather the fact that you are burning the candle at all 14 ends. I know with two jobs and being a student, "free time" is a luxury you don't have much of, but if you can, try relaxation exercises, yoga, mediation -- anything to "slow down" a bit. This can help you relax, which in turn can help with stress levels and hair loss. With high amounts of stress, I think the body goes into a kind of overdrive -- which may explain both the inability to put on weight and the hair loss.

    I know you aren't vegetarian, but there is a good chapter in the book "Becoming vegan" about how to gain weight in a healthy and sustainable manner. Might be worth checking out.

    I would also recommend seeing a naturopath. Many times, "traditional" doctors tend to have tunnel vision and don't look at a person holistically (e.g., diet, lifestyle, stress, etc.). A naturopath might be able to give you some more concrete suggestions.

    I hope this helps. Take care & welcome to the forum.
  3. Rabbit

    Rabbit New Member


    Thank you so much! And to you--and anyone else that reads this thread--thanks for reading such a long post! I didn't realize how much I'd written until after I posted it...phew!

    Ya, there were women in that other forum that were literally caps-lock yelling at me...and I really did post the same thing that I posted here! I don't get it...my whole point is that I'm unhappy at this weight, and want to gain...how does that make me anorexic or stupid?! Ah well, to each their own!

    I think meditation, yoga etc is wonderful advice. I've always wanted to do those things for peace of mind, but I never thought of the connection between slowing my metabolism down and possibly gaining weight! Good idea! :)

    As for traditional doctors...I've definitely been struggling with them. The unfortunate thing is that specialists like you mentioned, which I would love to visit, don't often take the insurance that I have. Finding one that did would be a Godsend because you're right, I would get better advice there. I even had a gyno tell me I needed to go to one, last year, because she said she didn't know enough about what I was asking (herbs, etc) to help me! At least she was honest!

    And if anyone reading this has experiences to share with me regarding the PCOS...please do. I really know nothing about it other than my own experiences.

    Thanks again :)
  4. ForeverBlue

    ForeverBlue New Member


    I can so relate to the weight loss issue. I've always been thin. I weighed 103lbs. most of my adult life ( I'm 5'8 ). Two years ago i was diagnosed with thyroid disease, and got very sick. My weight went down to 85lbs. In the last year i've managed to get it back up to 90lbs., but now i'm stuck there. I can't seem to gain no matter what i eat. Being 5'8, and 90lbs., i look like i'm dying. When i go out in public, people stare at me constantly ( i'm sure they think i have an eating disorder ). Nobody believes that i really am trying to gain weight ( like i'd really enjoy looking like this ).

    Like weighing 90 lbs. doesn't make me look bad enough, i'm also losing all my hair ( not from my weight, from my thyroid problem ). Of course, everybody says my hair is falling out because i'm too thin. But actually, my hair started falling out about 6 months before i ever lost a pound.

    I always ate healthy my whole life ( no snacks, sweets, desserts, soda, candy, etc. ). Now i snack between meals, eat dessert, I'll have a muffin or danish for breakfast, pudding with lunch, chips, etc. Still can't gain a pound.

    I'm not sure if stress plays a role in all in this, but i've had the most stressful year i've ever had. Thyroid disease, cancer, divorce, 2 suicide attempts, depression, panic attacks, and hair loss. I have to force myself to eat, because i'm so upset all the time, i don't want to eat.

    I'm so sorry that there are such ignorant people in the world, that they would treat you bad about your weight. Unfortunately, we are judged by the way we look, and people never take the time to think that we might look a certain way because there is something wrong with us. They just want to think the worst. I use to let it bother me, now i could care less what other people say. It's not worth it to let it get to you.

    I'm not that familiar with PCOS, so i don't know if that is the reason for weight loss ( i thought PCOS caused weight gain ), but i do know hormonal issues can cause weight gain or loss. I've learned that just one thing being off in our bodies, can cause many other things to go wrong. But since you've been thin your whole life ( like me ), maybe it's just in your gene's to naturally be that way, no matter what. Just keep eating all that healthy food :)

    Take care.
  5. Rabbit

    Rabbit New Member

    ForeverBlue...Thanks for your reply. I wrote you something else back too, on a different thread. It's comforting to know I'm not alone in the weight loss issue...well I mean, I knew I wasn't alone in the world on this, but sometimes you feel it, until you hear from others in similar situations. No one I know has any weight loss issues, and like you've said, most people think we're being psycho for getting so upset over the hair loss. At first my boyfriend didn't understand why I was crying all the time over my hair. He's supportive now, but he definitely didn't get it at first. My best friend didn't understand at all either, but she's also been on birth control for a few years, and just a few months ago she started noticing her hair was thinning too. Her head looks like mine did when this all started--not that bad, but noticeable if you're looking for it. I wish doctors educated women about this huge, emotionally damaging side effect of birth control! I know it's buried in the long pamphlet full of side effects that you get with each pack, but I think girls should be warned about this directly, by their doctors. Of course, that might decrease pharmaceutical sales...so it'll never happen.

    I'm so sorry that you haven't been able to put weight back on either. And with eating desserts and such, you're probably consuming even more calories than I am. It's really discouraging. I've always skipped around between doctors, because I've always had issues with them. I grew up with a mom who was educated in nutrition, health, and holistic healing, and I do SO much reading on my own as well, that I often already know the generic answers that doctors rattle off to me. (Trust me, I'm not saying I'm a know-it-all, there's a ton I don't know, but I try to read as much as I can, and I have yet to find a doctor that presents any new ideas to me.) When I was probably 19, I went to a new random doctor, who ended up being a very traditional Indian, and he attacked me for being underweight. He said I was obviously anorexic, and demanded personal information about my life from me, that had nothing to do with the reason I was there (just a general checkup for a job)...He would not believe that I eat as much as possible, and just kept telling me that I needed to admit I was anorexic. It was awful. That memory will always stay with me, as insignificant as it may sound now. My current doctor is Indian as well, but he is soo nice. Still doesn't have all the answers, by any means...but at least he's good to me.

    A lot of people have said maybe stress is the culprit for my hair and weight loss. I know it plays a part, but I'm convinced my hair loss is directly related to birth control. I've also gone through a divorce (which, tho we split in early 2007, was *just* finalized this week!!), panic attacks, anxiety, death in the family this year, a lawsuit that's still pending, etc. I wish that I could somehow become un-stressed, and my hair would all come back! If only it were that easy. I'd go live in the middle of the woods somewhere and avoid all stresses, if that would just work!! :p

    I think being underweight is in some ways much harder than being overweight. Of course I don't know what it feels like to be on the other end of the spectrum, and I am NOT saying it's easy, but I do know that being overweight has an unspoken feeling of being more socially acceptable. It's sometimes considered jolly, forgivable, or cute. People know it's bad for you, and most people that are overweight desperately want or need to lose it, but it seems like there is simply more acceptance, or at least sympathizing with, that condition than there is with being underweight. Every time I say I want to gain weight, my friends laugh at me. My guy friends tell me I look "great" and women just say "shut up", or worse, get nasty or jealous. People think I'm kidding. My best friend has always been overweight, and I know all about her struggle, so again, I'm not saying it's easier. It just seems like people think that gaining weight is as easy as simply eating more. I'm always told I'm "crazy" for being upset about losing hair, and "crazy" for wanting to gain weight...all that crazy just adds up to making me feel pretty crappy! Haha arrrg! :eek:

    Sigh, /end rant/ ... Thanks for listening :D:D