I'm new :) - Used to be anorexic, perhaps cause of PCOS?

[Becoming Sarah]

Hi,
I'm new here. I'm 23 years old and have always been thin. I dropped into the extremely thin/emaciated range after struggling with anorexia for almost 3 years. I've now regained around 15 pounds (i don't weigh myself), and I'm somewhere between 105-110, and 5'4''. Have any of you fellow thin cysters had an eating disorder? My PCOS symptoms didn't really kick in until I RECOVERED from anorexia. I gained the weight back (which meant I ate tons of "bad" foods), and started quickly getting facial/body hair This is so devastating, since I'm FINALLY free of the eating disorder, but now plagued with these new awful symptoms. Have any of you had experiences similar to mine?

-I have elevated DHEA, all other levels normal
-Not IR according to tests
-Taking Yasmin and Spironolactone

[disintegration]

From what I know from anorexia, losing an extreme amount of weight alters the way the body produces and uses hormones. It is quite common that those with anorexia to stop having a period so perhaps there could be a connection. Your best bet is to talk to your doctor about your concerns and perhaps he or she might be of more assistance. Other than that...welcome!

[ej44]

Hi there.

I found your post really interesting because I struggled for many years with an eating disorder, and instead of thinking that the disorder caused pcos, I've wondered (as has my doctor) if the eating disorder hid the pcos. I'm curious what others' experiences are.

I was undiagnosed for many years, depsite certain classic symptoms - irregular periods, acne, bloated belly (even at my thinnest), excess facial hair, and difficulty losing weight - even as I starved myself... Because a lot of these symptoms can be caused by an eating disorder (or in the case of the bloated belly and the trouble losing weight - ignored, because the doctors think you're just being irrational since you have the eating disorder), several doctors failed to even consider the possibility that there was something else going on. I have recently had cysts, but I don't know if I did when I was struggling with the disorder, because no doctor ever mentioned them.

As for why the symptoms may seem worse - or in your case, maybe are first becoming an issue - now that you're recovering, I think that could be a few things. For one, an eating disorder certainly can affect your hormone levels and other body functions, so it is no surprise that things are different now and that your body is changing... Also, my doctor always reminds me that pcos is progressive and the reality is that it will often continue to get worse with age.

My biggest struggle now is trying to remain a recovering anorexic - emotionally I am there - have been living a healthy life for about 7 years, but I have found it harder and harder to maintain my weight, regardless of diet, so the eating disordered thinking sometimes comes back into my head... I'm trying metofrmin now to see if that will help my body be more stable.

[cav108]

Just thought I would add my two cents in since I am new as well. After reading your posts, I started thinking... I have never been anorexic but have the tendency to be complusive about my weight. I was very thin in high school (5'2 95 lbs) and have continued to be thin as I have gotten older. But now that I am forcing myself not to be so complusive and have gained weight (about 10-15 lbs) since high school more of my symptoms have become visible. I have never been regular, but I now have more facial hair, bloated belly etc. Maybe there is a link and maybe I was slightly anorexic (if there is such a thing) and was and still am in denial about my past???

[Becoming Sarah]

that's an interesting idea - that the eating disorder may have masked the PCOS symptoms. do you feel that you would still have difficulty maintaining your weight, and have the same sorts of PCOS symptoms if you had never had an eating disorder?

i was thin even before my eating disorder, so i hope that as i recover, continue to eat healthy, and take care of my body, that i won't have a hard time maintaining a slender/healthy figure.

i am not IR. are you? i noticed that the facial hair symptoms didn't start until i really started eating whatever i wanted (lots of refined carbohydrates and sugar). So perhaps there is a slight connection with insulin and the hair growth for me. maybe i caused IR by undereating for so long (even though i test normal for IR).

some people say that anorexia changes our metabolisms forever (most people say they get slower, although i've heard others say the opposite), but i don't really believe either. i am going to try to stick to my belief that we all have a body type, and with appropriate diet, exercise, sleep, and not too much stress, we can maintain a healthy weight and body. PCOS cannot be a "death sentence".

maybe i'm too hopeful?

[ej44]

Hi again Becoming Sarah,

I don't think you are too hopeful - PCOS comes with a lot of challenges, but it's not a death sentence and I don't think it's impossible to maintain a healthy weight.

I really don't know whether or not anorexia can be a contributing cause of pcos or whether it masks pcos or neither, but I do think it's interesting that a few people have suggested some link in how/when the symptoms become more obvious and diagnosis is made.

I have also always been thin (give or take one bad year when I was about 20 - I was never really seriously overweight - I think at most I weighed about 130 at 5'4"). But it is hard for me to say whether or not I think I would have had trouble maintaining my weight or have had the same sorts of pcos symptoms had I not had an eating disorder, because I think my view on my body was, and in some ways still is, pretty skewed. What I mean by that is that I think I would be relatively thin with or without the eating disorder and pcos. But my ideal weight, which I admit may be unrealistic and driven by eating disordered thoughts, has always been even lower than my actual weight and so I often feel - justified or not - that it has been difficult to maintain a "desirable" weight.

The other symptoms for me, like irregular periods, facial hair and acne, have been pretty consistent over the years and probably started around the time I started becoming more concerned and focused on my weight, so it's really hard to say which came first or whether one thing caused the other....

That said, I pretty much had maintained my weight for much of the last 6-7 years (since I really started maintaining a healthy lifestyle). Lately, however, I do notice that I am having more difficulty maintaining this weight and I don't know if that's age, pcos, various attempts at bcps to control pcos symptoms (which I actually believe had a huge impact on my body and my ability to maintain my weight, but that's another story), or something else. In particular, I am finding that I am gaining a lot of belly weight, even as I improve other areas of my body through continuued healthy eating and lots of exercise. I am trying metofrmin now to see if that will help me. I have never actually been tested for IR, so I don't know if I am or not. My doctor was willing to let me try the met, since it seems that many thin, non-IR women see improvements in pcos symptoms on it.

Well, I don't know if I actually answered any of your questions... i feel like I am just ranting. But it is very interesting to know others have had similar experiences. I think being a thin cyster is less common and so I cannot always relate to the experiences of others with pcos.

[alliern]

I was anorexic in high school (5'9" 110 lbs)and then when I went to college and gained the weight back (up to 140) I started to exercise excessively and only eat low fat foods. I lost back down to 120 but I was never able to stay there (I was a sz 6/8). I am currently around 135-140 on no birth control and I struggle with keeping it there. Lots of exercise, diet changes. I lose the weight when I go ON BCP, not when I come off (which would be the opposite for most women without PCOS from what I haev read). I still have control issues, but not as much since I am able to put a name with what is going on and not just think that I have random weight gain. Not that it is an excuse, rather a way to rationalize to myself why I might be up a few pounds, rather than accusing myself of being fat and yucky. Does that make sense?

[MamaBecs]

Sarah (can I call you that ?), sometimes PCOS chicks have disordered eating patterns to cover up the weight they would otherwise have gained. Were you thin when you became anorexic or did you want to lose some weight? The anorexia could have just masked the symptoms of something that was already there and you may even have been anorexic because you didn't understand what PCOS was doing to your body. I went through some pretty extensive dieting phases and still do eat tiny amounts of food to keep a normal weight. (There's no way I can go on like that forever, though, and I do love the little food I can eat!)Just a thought... I don't know your situation, so I can only comment.
I guess the other thing might be that your unusual eating habits may have affected your blood sugar and might have helped the insulin resistance along.

[Becoming Sarah]

Hi,
Actually I was thin all my life, and the eating disorder didn't begin as a way for me to attempt to lose weight. I'm prone to OCD/anxiety sorts of issues, and that was compounded by some post-traumatic-stress, and BOOM I had an eating disorder. What's interesting is that the real onset of the anorexia began right after I began taking BCPs for the first time. I was taking Estrosep FE, and it made me so bloated I looked pregnant, and felt "fat", even though I was barely over 100 pounds. I still don't gain weight easily, and no one in my family is overweight. I've also not tested positive for IR. The symptoms of getting some facial/body hair, missed periods, elevated DHEA, etc., have began since I've really began gaining weight back and eating normally. I wonder if I am IR even though I didn't test that way. I just want some hope that I'll get my hormones regulated and get rid of these symptoms, because they're making me so sad.

[ej44]

Keep your chin up! Although I had some classic signs of PCOS since I was a teenager, they never really started to bother me until I stopped BCPs. It could just be that the changes in your weight and eating habits, the fact that you stopped BCPs, and what sounds like a lot of stress in your life are all adding up to some big hormonal changes - which would be totally normal under the cirumstances. I am sure that in time things will settle down.

I started BCPs when I was diagnosed with PCOS. Prior to then, I'd always had irregular periods, some trouble maintaining my weight, even though I have always been thin (just always had to work hard to stay that way), and acne. Some facial hair too, but really not anything that was too hard to take care of... When the diagnosis was made, I agreed to try BCPs. I tried a few and really didn't do well on any of them. The pills did improve acne and facial hair. On some I had regular AF, on others I never had a period at all. I gained a lot of weight - and QUICKLY, felt sick (fatigued/dizzy/nauseous) often - really just never quite felt like myself. Finally I decided I'd had enough and stopped. I thought everything would get better being off the pill, but in fact it all got much, much worse. Worse to the point where I honestly believe I would have been better off if I never started the pills in the first place - I think they contributed to some bad hormonal fluctuations. So I spent the last year refusing to take any type of medication or to treat the pcos in any way. Most of the really bad feelings and symptoms have subsided and my body has seemed more stable the last few months, but the belly weight and trouble losing it have remained and so now I am trying metformin. It's too soon to tell if it will help me, but at least my body feels much more stable than it has....

Give your body some time to adjust to your new eating habits and certainly try to give yourself a break, since stress absolutely contributes to all of the symptoms you describe. If you find that the symptoms don't subside sufficiently on there own, you might want to consider options like metformin or a different bcp to see how that works for you. I was not tested for IR and when I took a glucose tolerance test, it showed that I actually get quite hypoglycemic, but my dr. has let me try the met anyway, and I'm hopeful that it will prove helpful. So far, I have seen less bloating and no really bad side effects.

[Becoming Sarah]

another question for you:

has your facial hair problem only gotten worse? this is one of the main things i am worried about, as it has only begun to be a problem in the past several months. before i never had hair on my chin. now i have a lot

i hate to believe that PCOS only gets worse, and that i'll just keep growing more and more facial hair and have no control over my body. i am really scared!

[ej44]

It has gotten worse, but it's not terrible and the rate at which it is worsening is not super fast. My doctor tells me that PCOS is progressive (typically until menopause, when things should get better - I know, not exactly comforting). If left untreated, certain symptoms or problems may worsen over time - that seems to be true for me with respect to belly weight and to some extent facial hair.

I've been on and off a few different bcps over the years. When I was on Yasmin - in particular, my facial hair issues pretty much went away, but I gained a lot of weight and was incredibly moody that I just couldn't stay on it. (of course, other people love it). After I went off, I went through a period where it seemed like my facial hair problem was a zillion times worse than it ever had been - which I think was partly due to the effects the pill had on my body - so you could be experiencing something similar. Now that I am bcp-free for about a year, it seems to be back to where it was before I started any of the bcps. Not hair free, but not very noticeable and tweezing/waxing works fine for me (hair is mostly eyebrow, upper lip and chin).

I think you first need to give your body some time to stabilize, since you've had so many changes recently. If you find that certain symptoms don't go away or worsen, there are many, many treatment options out there and based upon the things that bother you most, your lifestyle, etc., you really can find something that will help. It just takes a little time and patience as you let your body adjust in between treatments and/or changes to lifestyle. As I've mentioned, I had at one point given up on treatment of pcos altogether only to decide that I could not deal with certain symptoms that were not getting better. I am now on metformin and I feel very good on it and have noticed some improvement in the area that bothered me most (belly weight). Acne was never a huge problem, but this too seems to be improved. Facial hair has not really improved, but it does not seem to be getting worse either. For me this is a good option. But again, treatment is very individual. Find a doctor you really trust and talk candidly about the issues that trouble you the most. You might also look at some of the alternative remedies that people recommend on here. It seems that some people have had great success with herbal remedies, acupuncture, etc.

[eburke]

Hi there,

I'm a thin cyster too. My story started last year. I basically self diagnosed myself. I have always been thin (5' 3" and 106 pds). I stopped getting my periods about 2 years ago. Around the same time I started experiencing some black coarse hair growth on my chin. I was also starting to break out when I really never did before.

I went to numerous doctors appointments and they kept switching my pill, taking me off and putting me back on the pill and telling me I was "too thin" and that is why I wasn't getting my period. This went on for almost a year. I wasn't satisfied with the answeres I was receiving- so I decided to do some research on the web. I was researching my symptoms (sudden hair growth and a little acne onset at the age of 28!). I told my doctors about PCOS and of course they told me "You are much too thin to have that and your minimal hair growth and acne dont' coincide with it either). I decided (with the help of some other cysters) to go ahead and make an appointment to see an endocronologist. I'm so happy I did.

I love my endo - she is so nice and she is very knowledgeable in PCOS (its what she specializes in). At my appointment we went through everything - all my symptoms and why I thought it was necessary to be seen by a specialist. I told her my whole story. Prior to seeing her I was plucking the hair on my chin (which I am now getting laser for and am very happy with it - I've had 3 sessions so far and it is definitely working) - but for my appointment I had let it grow out (just a little bit) so she could see them. She gave me a physical exam and then we went into the sonography room. A sonographer who also specializes in PCOS and is thin herself gave me an internal ultrasound. And BAM - just like I expected - I had the "classic" sting of pearl cysts on my left ovary. She said without a doubt I had the syndrome. I started to cry - I felt like I doomed for a lifetime of always feeling ugly/unhealthy and infertility. They both sat my down and explained to me that each and every one of us are in control of our health to some degree. They told me to follow a healthy lifestyle and together we would find the minimal amount of medications that would work for me. The sonographer who also has PCOS was an older woman (maybe late 50's) and she said she foung otu when she was 30. She was able to concieve 3 healthy children and she said she kept her PCOS under control using the same tactics they were instructing me to do.

I was put on the original birth control I was put on at age 20 - which is ortho-tri-cyclen. I have heard that some cysters don't do good on it but it has always been what has worked for me. I requested to be put back on that and my doctor said "You know your body better than anyone - we'll put you on that and revisit in a few months". I was EXTREMELY concerned about the hair growth and the breakouts I was suddenly experiencing so she also put me on a 100mg of spiro/daily and I'm so happy to report (KNOCK ON WOOD).....I'm doing really good. I have not experienced anymore breakouts and the hair growth has dramitically decreased. As I said - I had laser for the hair that was previously there (once hair follicles are stimulated - they will always grow unless you have electrolysis or laser). I also saw a nutrionist (at my endo's request) and while I haven't been tested for IR yet - I follow the IR diet and I have to say - I feel so much better than I did a year ago.

Please don't feel doomed. There are ways to conrol the symptoms and carry on with your life. If you have any other questions - please don't hesitate to ask.