Dr. says not PCOS, but i'm not so sure...
photojunkie28
Posts: 292
A little background info:
Not on ANY medications/birth control
Almost 29 years old
5'5, 170 lbs, About 30% BF.
100% normal menstrual cycle until one year ago ( Shortly after the time I changed everything about my lifestyle in efforts to lose weight - starting at 1200 cal then joining EM2WL and learning I didnt eat enough - got a bodymedia and it tells me I average 3200 cal a day burn)
1 period since then (about 6 months ago when I went on a cruise vacation for 2 weeks)
I exercise HARD, cardio and strength 5-6 days a week and currently eat an average of 2400 cal in efforts to lose weight which it takes all willpower I have in me to stay that low these days.
Now, About 2 months ago I went to a family Dr. and told him about my amenorrhea and in short he said if I wasn't trying to concieve I need not be concerned. But he mentioned the term PCOS and brushed it off. I researched it and was mad that if this was a possibility that he was not concerned so I got a new Dr.
I felt like PCOS fit because I seem to have extreme difficulty losing weight and feel like I am very carb/sugar sensitive. If I have any of those carbs that I shouldn't I find myself in a big sugar binge or at least thinking about nothing else until it is out of my system. I also have some hair growth on my chin which I pluck constantly and of course no period.
BUT given the lifestyle I have, I also felt as though exercise induced amenorrhea/hypothalamic fit EXCEPT I am not underweight / low BF%
The new Dr. said it had nothing to do with diet/exercise (without even asking what I eat/do) and sent me for bloodwork, a pelvic ultrasound and internal ultrasound. All tests came back normal (as they should because I eat clean and exercise) except she said I had some fluid pockets that weren't normal for somebody my age and my kidney levels were very slightly elevated - which she suspected to be due to dehydration. Since I had no cysts she said PCOS wasn't something I had to worry about and has referred me to a OBGYN.
I have nearly an entire month before that appointment and I guess i'm just wondering what you all think? My understanding is that you don't have to have cysts to have PCOS and you don't HAVE to be annorexic to have a hypothalmic disorder so why were they so quickly written off?
Is there anybody else with similar stats/experiences? Sorry this post is so long! Just trying to be as informative as possible! Thanks!
Not on ANY medications/birth control
Almost 29 years old
5'5, 170 lbs, About 30% BF.
100% normal menstrual cycle until one year ago ( Shortly after the time I changed everything about my lifestyle in efforts to lose weight - starting at 1200 cal then joining EM2WL and learning I didnt eat enough - got a bodymedia and it tells me I average 3200 cal a day burn)
1 period since then (about 6 months ago when I went on a cruise vacation for 2 weeks)
I exercise HARD, cardio and strength 5-6 days a week and currently eat an average of 2400 cal in efforts to lose weight which it takes all willpower I have in me to stay that low these days.
Now, About 2 months ago I went to a family Dr. and told him about my amenorrhea and in short he said if I wasn't trying to concieve I need not be concerned. But he mentioned the term PCOS and brushed it off. I researched it and was mad that if this was a possibility that he was not concerned so I got a new Dr.
I felt like PCOS fit because I seem to have extreme difficulty losing weight and feel like I am very carb/sugar sensitive. If I have any of those carbs that I shouldn't I find myself in a big sugar binge or at least thinking about nothing else until it is out of my system. I also have some hair growth on my chin which I pluck constantly and of course no period.
BUT given the lifestyle I have, I also felt as though exercise induced amenorrhea/hypothalamic fit EXCEPT I am not underweight / low BF%
The new Dr. said it had nothing to do with diet/exercise (without even asking what I eat/do) and sent me for bloodwork, a pelvic ultrasound and internal ultrasound. All tests came back normal (as they should because I eat clean and exercise) except she said I had some fluid pockets that weren't normal for somebody my age and my kidney levels were very slightly elevated - which she suspected to be due to dehydration. Since I had no cysts she said PCOS wasn't something I had to worry about and has referred me to a OBGYN.
I have nearly an entire month before that appointment and I guess i'm just wondering what you all think? My understanding is that you don't have to have cysts to have PCOS and you don't HAVE to be annorexic to have a hypothalmic disorder so why were they so quickly written off?
Is there anybody else with similar stats/experiences? Sorry this post is so long! Just trying to be as informative as possible! Thanks!
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Replies
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A little background info:
Not on ANY medications/birth control
Almost 29 years old
5'5, 170 lbs, About 30% BF.
100% normal menstrual cycle until one year ago ( Shortly after the time I changed everything about my lifestyle in efforts to lose weight - starting at 1200 cal then joining EM2WL and learning I didnt eat enough - got a bodymedia and it tells me I average 3200 cal a day burn)
1 period since then (about 6 months ago when I went on a cruise vacation for 2 weeks)
I exercise HARD, cardio and strength 5-6 days a week and currently eat an average of 2400 cal in efforts to lose weight which it takes all willpower I have in me to stay that low these days.
Now, About 2 months ago I went to a family Dr. and told him about my amenorrhea and in short he said if I wasn't trying to concieve I need not be concerned. But he mentioned the term PCOS and brushed it off. I researched it and was mad that if this was a possibility that he was not concerned so I got a new Dr.
I felt like PCOS fit because I seem to have extreme difficulty losing weight and feel like I am very carb/sugar sensitive. If I have any of those carbs that I shouldn't I find myself in a big sugar binge or at least thinking about nothing else until it is out of my system. I also have some hair growth on my chin which I pluck constantly and of course no period.
BUT given the lifestyle I have, I also felt as though exercise induced amenorrhea/hypothalamic fit EXCEPT I am not underweight / low BF%
The new Dr. said it had nothing to do with diet/exercise (without even asking what I eat/do) and sent me for bloodwork, a pelvic ultrasound and internal ultrasound. All tests came back normal (as they should because I eat clean and exercise) except she said I had some fluid pockets that weren't normal for somebody my age and my kidney levels were very slightly elevated - which she suspected to be due to dehydration. Since I had no cysts she said PCOS wasn't something I had to worry about and has referred me to a OBGYN.
I have nearly an entire month before that appointment and I guess i'm just wondering what you all think? My understanding is that you don't have to have cysts to have PCOS and you don't HAVE to be annorexic to have a hypothalmic disorder so why were they so quickly written off?
Is there anybody else with similar stats/experiences? Sorry this post is so long! Just trying to be as informative as possible! Thanks!
What kind of DR did you see? Did you go to an endocrinologist, many DR think that PCOS is nothing to worry about but it affects many parts of our lives. He could be right though it could be that it's not PCOS and that it's another disorder. I would continue to find some answers see if there is something else that is causing this. But from what I read you are right you don't necessarily have to have Polycystic ovary's to have PCOS, VisVersa that if you have Polycystic Ovary's you don't necessarily PCOS.
If you did not go to an endocrinologist I would suggest making an appointment with one, take your food and exercise diary with you and see if he can figure something out. Do you eat Gluten? It could also be that you may have a Gluten intolerance, I hear many people who are intolerant to Gluten have some strange symptoms ones they would have never guessed were caused by the food they were eating.0 -
I'm not a doctor, but from what you've told us here, it sounds like the low calories and tons of exercise might have put a halt to your cycle. Have you tried going back to a maintenance mode by eating more, working out less intensely and see if your cycle comes back?
Personally, I haven't officially been diagnosed with PCOS, but I have a lot of the symptoms, which is why I'm here. I asked my doctor if it matters since I'm not trying to conceive, and he said that if I'm not complaining about it, then it doesn't really matter. He said if my acne gets intolerable or if I'm embarrassed by body hair I can get an official diagnosis with an ultrasound and he would treat it. I told him that I only would want to treat it if it doesn't involve hormones, because I started to have more energy and lose weight once I got off birth control pills and I really don't want to go back on those if I can avoid it. He said it's probably fine to just let it go then since I'm not willing to take hormones (other than my hypothyroid medication) and since I don't want kids.
The only advice I can give you is that if you don't like the way your doctor treats you, go find a second opinion.0 -
I'm not a doctor, but from what you've told us here, it sounds like the low calories and tons of exercise might have put a halt to your cycle. Have you tried going back to a maintenance mode by eating more, working out less intensely and see if your cycle comes back?
Personally, I haven't officially been diagnosed with PCOS, but I have a lot of the symptoms, which is why I'm here. I asked my doctor if it matters since I'm not trying to conceive, and he said that if I'm not complaining about it, then it doesn't really matter. He said if my acne gets intolerable or if I'm embarrassed by body hair I can get an official diagnosis with an ultrasound and he would treat it. I told him that I only would want to treat it if it doesn't involve hormones, because I started to have more energy and lose weight once I got off birth control pills and I really don't want to go back on those if I can avoid it. He said it's probably fine to just let it go then since I'm not willing to take hormones (other than my hypothyroid medication) and since I don't want kids.
The only advice I can give you is that if you don't like the way your doctor treats you, go find a second opinion.
I did try eating at TDEE for a while (im not sure exact length of time) and I gained some weight (i was down to 164 and now am 170ish) and felt kinda sluggish (but I also wasnt eating as clean as I do these days) and I dropped my workouts back SOME, but wasnt willing to digress too far back. Nothing happened. So I thought maybe that wasnt the problem, however now i'm wondering if I gave it enough time.
Also, I did get another Dr. like I said. Although I still have no answers and now have to wait until June 18th for an apt. to see a OBGYN at least she is sending me places. I figure i'll be sent from there to an endocrinologist or nutritionist, but I was just wondering what people here thought. If anybody was in a similar position.0 -
A little background info:
Not on ANY medications/birth control
Almost 29 years old
5'5, 170 lbs, About 30% BF.
100% normal menstrual cycle until one year ago ( Shortly after the time I changed everything about my lifestyle in efforts to lose weight - starting at 1200 cal then joining EM2WL and learning I didnt eat enough - got a bodymedia and it tells me I average 3200 cal a day burn)
1 period since then (about 6 months ago when I went on a cruise vacation for 2 weeks)
I exercise HARD, cardio and strength 5-6 days a week and currently eat an average of 2400 cal in efforts to lose weight which it takes all willpower I have in me to stay that low these days.
Now, About 2 months ago I went to a family Dr. and told him about my amenorrhea and in short he said if I wasn't trying to concieve I need not be concerned. But he mentioned the term PCOS and brushed it off. I researched it and was mad that if this was a possibility that he was not concerned so I got a new Dr.
I felt like PCOS fit because I seem to have extreme difficulty losing weight and feel like I am very carb/sugar sensitive. If I have any of those carbs that I shouldn't I find myself in a big sugar binge or at least thinking about nothing else until it is out of my system. I also have some hair growth on my chin which I pluck constantly and of course no period.
BUT given the lifestyle I have, I also felt as though exercise induced amenorrhea/hypothalamic fit EXCEPT I am not underweight / low BF%
The new Dr. said it had nothing to do with diet/exercise (without even asking what I eat/do) and sent me for bloodwork, a pelvic ultrasound and internal ultrasound. All tests came back normal (as they should because I eat clean and exercise) except she said I had some fluid pockets that weren't normal for somebody my age and my kidney levels were very slightly elevated - which she suspected to be due to dehydration. Since I had no cysts she said PCOS wasn't something I had to worry about and has referred me to a OBGYN.
I have nearly an entire month before that appointment and I guess i'm just wondering what you all think? My understanding is that you don't have to have cysts to have PCOS and you don't HAVE to be annorexic to have a hypothalmic disorder so why were they so quickly written off?
Is there anybody else with similar stats/experiences? Sorry this post is so long! Just trying to be as informative as possible! Thanks!
What kind of DR did you see? Did you go to an endocrinologist, many DR think that PCOS is nothing to worry about but it affects many parts of our lives. He could be right though it could be that it's not PCOS and that it's another disorder. I would continue to find some answers see if there is something else that is causing this. But from what I read you are right you don't necessarily have to have Polycystic ovary's to have PCOS, VisVersa that if you have Polycystic Ovary's you don't necessarily PCOS.
If you did not go to an endocrinologist I would suggest making an appointment with one, take your food and exercise diary with you and see if he can figure something out. Do you eat Gluten? It could also be that you may have a Gluten intolerance, I hear many people who are intolerant to Gluten have some strange symptoms ones they would have never guessed were caused by the food they were eating.
I suppose I do eat SOME glutten, but I would say very minimal. I workout to "earn my grains". I only eat things like breads/pastas/rice/oats after i've had an hour intense workout. If I dont do the workout, I dont eat the grain. I am absolutely going to take my food/exercise diary with me. thanks
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Did they test your thyroid?
Hypothyroidism can also cause amenorrhoea and cause a person to feel sluggish and have trouble losing weight (actually hypothyroidism and PCOS have some very similar symptoms and often are found together).
I wonder what blood tests your doctor did? You don't need to have polycystic ovaries to have PCOS, but you would show elevated testosterone, elevated estrogen, low progesterone, insulin resistance, elevated LH/ higher than usual LF:FHS ratio, or some combination of the above symptoms (not necessary to have them all but you would have a few of them). If all of those tests weren't done, you should definitely request them when you see the OBGYN as well as thyroid hormone levels (if not done).
The other thing is that you are correct, one doesn't need to be anorexic to have hypothalamic amenorrhoea, but you might want to rule out other possible causes before stopping exercising (which is usually beneficial to any other issues) but maybe up your calories a bit, gradually.
There are a number of other causes of amenorrhoea so you're definitely right to continue to pursue this. Keep demanding answers until you get one! The worst thing would be if it was something serious and you let your doctor tell you it was "probably nothing". Good luck!0
