Diagnosed/Living With PCOS? READ ME!

Ok, ladies! I know there have been several women in the short time I've been here posting about PCOS, asking questions, and many of which regarding Metformin. I'm going to post a guide here, with symptoms of PCOS, and the various forms of treatments that have been prescribed by doctors, and questions asked by newly diagnosed cysters.

First, I'll tell you briefly about myself. I was diagnosed in 2003, at age 24. I'd spent my entire life overweight. There is absolutely NOTHING I hadn't tried. From counting calories, South Beach Diet, Adkins, and in high school (by NO means am I advocating this---) I restricted my calories to no more than 600 a day, while taking step aerobics EVERY night- Monday thru Friday, and EVERY Saturday morning, my Freshman and Sophomore year. I was desperate to be a cheerleader. I was the "fat cheerleader" in middle school, and there was NO room for a fat cheerleader in high school. Ask me how much weight I lost in those two years? Not ONE SINGLE POUND. Nothing. Absolutely. NOTHING. It was after I had a pilonidal cyst in my back, and told there was no way I'd ever be able to cheer, play softball, volleyball, or any other sport I wanted to, that I simply gave up.

I stopped with the calorie restriction and began to eat normally again. I gained roughly 50lbs within a year. My weight only began to balloon from there. Every year after high school, no matter what I did, no matter how hard I tried- walking religiously, going to the gym, weight would NEVER come off. I avoided doctors like the plague because all I ever heard was "lose weight!" Yeah, that would be great! I'd LOVE to, how do you do it? I was walking between 3 and 5 miles a day, eating maybe 1100 calories a day, drinking ungodly amounts of water, and GAINING weight.

By the time I reached 24, I was 400lbs. I was sick. VERY, VERY, sick. I hadn't had a period in over a year, had tons of skin tags, dark patches of skin around my neck and between my legs, excess hair growing in places I didn't want it, most of my hair had fallen out, to the point where I was having to wear clip on hair, I was sleeping 16 hours a day, and was STILL exhausted, and the kicker- my blood work was terrible. My insulin levels were sky high, testosterone was through the roof while my estrogen was extremely low.

I'd been given a diagnosis of PCOS. FINALLY! There was a NAME to what was wrong with me! There was a REASON WHY I wasn't losing weight!

I explained to my OB/GYN all of the things I'd done to try to lose weight throughout the years, including a low carb/high protein diet- which is the first treatment for PCOS. This obviously did NOT work alone for me. So she took the next step of prescribing me Metformin ER.

After I began the Metformin ER, I became violently ill after eating. I often threw up, and needed to be near a restroom. It was difficult being on this medication, there are no two ways about it, but I wasn't giving up! I wanted to live! Unfortunately, the Metformin ER alone, wasn't doing the job it needed to do, even with increasing the dosage. My insulin levels weren't coming down, even with keeping to my low carb diet. They were still climbing, and I was extremely ill.

That's when I became a guinea pig for the diabetic injection Byetta. This drug literally saved my life. Byetta in conjunction with Metformin ER is the reason I'm alive today. I was dying when I began these medications. I'm not going to tell you by any stretch of the imagination this has been or is easy. It's not. It's not the first stop for anyone. I most likely, have lived with PCOS, my entire life. Had I been given a proper diagnosis when I was much younger, and some type of treatment- be it a proper diet, or if I did need medication back then, the right medication, I may not be where I am today. I choose not to dwell on this fact, but to be thankful that I have a treatment, and that I'm alive.


There is hope, and there are a wide variety of treatment options available to cysters from natural and simple changes in diet, to the medicinal route.

First.

Here are some signs and symptoms of PCOS:

*Unexplained Weight Gain

*Absence of Menstrual Cycle

*Excess Growth of Facial Hair

*Thinning/Loss of Hair

*Fatigue

*Painful Periods

*Ovarian Cysts

*Dark Patches of Skin Under the Arms, Between The Legs, Around The Neck

*Acne (facial or body)

*Infertility

*Skin Tags

*Anxiety


What are some of the treatments for PCOS?

*Change in diet- A lower carbohydrate/higher protein diet is typically recommended for women who are living with PCOS.

*Exercise. Getting out and being active. Any activity you can do, be it walking, swimming, yoga, zumba, dance, weight lifting, riding a bike, going to the gym- eating a healthy diet along with exercise often the first recommendation for women with PCOS.

*Cinnamon Supplements- This is what is known as the "natural alternative" to Metformin.

*Medications such as Metformin/Metformin ER and Januvia. These are diabetic medications that are often prescribed to women with PCOS who are suffering with insulin resistance. These medications help your body to better absorb and utilize your insulin more efficiently.

FAQS For Metformin (Brand name Glucophage) can be found here: http://packageinserts.bms.com/pi/pi_glucophage_xr.pdf

FAQS for Januvia can be found here: http://www.merck.com/product/usa/pi_circulars/j/januvia/januvia_pi.pdf

*There are cases where an additional medication may be needed- such as Byetta or Victoza. These medications are NOT typically first choice treatments by physicians for women living with PCOS. These are typically given after diet and exercise changes have been made, along with other medications and no progress has been made. Byetta is a twice daily injection intended for the treatment of Type II Diabetes, while Victoza is a once daily injection intended for the treatment of Type II Diabetes. Both of these injections have "off label" uses, much like that of Metformin/Metformin ER, and Januvia for PCOS. When the prescribed injection is used in conjunction with a medication such as Metformin/Metformin ER, or Januvia, along with proper diet and exercise, it allows for optimal production and processing of insulin in women suffering with PCOS.

FAQS for Byetta can be found here: http://www.azpicentral.com/byetta/pi_byetta.pdf#page=1

FAQs for Victoza can be found here: http://www.novo-pi.com/victoza.pdf

*For those who are NOT attempting to get pregnant, or wishing to get pregnant in the near future, hormonal Birth Control Pills are sometimes used as a treatment for PCOS.

*For women who are concerned about excess facial hair growth, Vaniqa is available by prescription ONLY. It is not permanent, it only reduces the growth.

FAQS on Vaniqa can be found here: http://www.allergan.com/assets/pdf/vaniqa_pi.pdf


Frequently Asked Questions

Can I get pregnant with PCOS?

This is definitely a case by case basis, but I can tell you there is most definitely hope! We have come so far in our knowledge and treatment of PCOS, that with some cysters simply getting to a healthy body weight, and getting their hormones in order does the trick, while others do require a little more help. Luckily, we do have treatments ranging from fertility medications such as clomid, to treatments like IUI and IVF. The best thing you can do if you are considering pregnancy is start off by being the healthiest you possible! Know your hormone levels, stay active, and follow the dietary guidelines that you and your doctor/nutritionist have discussed.

Do I have to take medication because I have been diagnosed with PCOS?

Absolutely not. Not every woman who lives with PCOS is on medication. As mentioned above, there are a variety of treatments, ranging from a change in lifestyle of diet and exercise, to medication. Your physician will discuss a treatment plan with you about what is best fitting for you with your symptoms/severity.

Is there a cure for PCOS?

No. At this time, there is no cure for PCOS. We are very fortunate that we have a host of treatments to enable us to have a wonderful quality of life, but no, there is no cure.

I don't have cyst on my ovaries, how can I have PCOS?

PCOS is a complex endocrine disorder. Cysts on the ovaries are just one of the many symptoms of this syndrome. PCOS was originally called Stein-Leventhal Syndrome, after the names of the gynecologists who discovered it in 1935.


How do I find out if I have PCOS?

The best way is a trip to your doctor. An OB/GYN or Endocrinologist is best suited to diagnose PCOS, however a GP can do this as well. Having a full panel of blood work done will often be a tell tale sign that something is off (IE- hormones, insulin levels). Also, discuss with your doctor any symptoms or concerns you have. Like another posted had mentioned on another thread, some of the symptoms of PCOS are very similar to that of Thyroid problems. Blood work can easily eliminate any issues or questions about health concerns.

If you have any concerns or questions that I haven't covered. please feel free to ask. I hope this helps everyone out!
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Replies

  • helenarriaza
    helenarriaza Posts: 519 Member
    My OB/GYN denied flatly that I could have cysts since I was "too young", at 21 I had a 3 months period, severe dehydration, anemia and I pretty much blacked out from pain. He gave me birth control pills which gave me severe acne, water retention and weight gain.

    I decided to start losing weight at 285 (back in may) and weight was coming off pretty well and at a good pace but it seemed to get stuck at 255.

    I recently had a surgery since I had an awful pain on my lower left side, again I went to the OB/GYN and he said AGAIN I was too young to have problems (at 24) and sent me for an ultrasound since he thought I had kidney stones.

    While at the ultrasound the doctors freaked out since a 2 1/2 inches cyst had ruptured, along with my ovary. The insurance company took forever to approve it and now I have a slash (which is a bit longer than a C section) that is completely numb, incredibly painful periods that last 5-6 days (they were 3-4 before) that leave me drained.

    My ovary was partially reconstructed, cyst removed (I was told, did not go further) was told the other cysts were minor as well as being told I had endometriosis and I had to do mayor changes.

    Two days later he said I was completely fine and to go on as if nothing had happened.

    I don't know whether to believe him or switch doctors, I am scared at the thought of endometriosis and in my paranoia I believe that checking and re checking for any possibilities is just asking for it.

    If you have any opinions, that would be helpful but I've wrote the above to pretty much see in a screen all the random thoughts going through my head. :\
  • Miss_1999
    Miss_1999 Posts: 747 Member
    Helen- I had replied on your other thread, but I am going to reply here, too, because I want to make sure that you, and any other women who may be in a similar situation see this- PLEASE- seek a SECOND OPINION, or even third. With the extensive surgery you've had, and formal diagnosis of PCOS and endometriosis, in ONLY two days you aren't just "fine". You definitely need someone who is knowledgeable in BOTH, and will keep in eye on you, with a proper treatment plan. I'm not a doctor, so I cannot say what happened avoidable or not, but that is an extremely large cyst, and for a doctor who is knowledgeable in PCOS/Endo they will be keeping you in check and hopefully you won't have to deal with a cyst of *that* size forming again.

    Don't be paranoid about checking and re-checking-- this is what keeps us cysters and those suffering with endo safe and healthy. Having an exam/ultrasound/MRI, ect is not going to cause any more cysts to form that weren't already going to form if you did nothing at all.

    I'm not sure where you are located, but I would be more than glad to help you find someone or help you with resources to try to find someone if I am able.
  • 412elvira
    412elvira Posts: 1 Member
    I just turned 24 this past September. I have always been skinny and normal weight growing up. I was always active through high school. I started gaining weight around 11th-12th grade, but not much just slightly. So I assumed I was just eating too much junk food. So I kept going in my life, soccer, and a boot camp class. When I reached college in '09 I saw that I gained much more weight. But of course I thought I was just gaining the freshman 15. Until around my sophomore year in college I was overweight. My mother was diagnosed with endometriosis around my high school years. Then that year of my sophomore year my grandma was diagnosed with ovarian cancer. After a couple months after her diagnostic, I had a three month period where I did not have my menstrual. So I was scared and told my mother. We both went to my doctor. She did a bunch of tests. And was diagnosed with PCOS. I didn't really understand this fully. But it may seem that Cancer runs in the family. I was put in medication as well as birth control. I didn't really enjoy it because my body was growing weak. I went vegetarian with the medication and lost 15 lbs but could not pass after that. My mother who is a CNA talked to many doctors and they all told her that it will be hard for me to lose weight from the birth control. My doctor was fired and I stopped taking all medication, and It seems I am back at my original weight. I am really at a loss. Last year I was rushed to the hospital because my body shut down on me. The doctor looked at my mom and told her that I am at high risk of cancer. Which made me devastated. My mom keeps telling me I need to loose weight so I can get rid of this problem, but it's hard. I recently started doing green juice every morning. Trying to cut out junk. Exercising every other day. But I just don't know what kind of diet I can use to help me loose weight. I have a new doctor. And I have testings to do and will see how my sugar, blood, hormone levels are at. I cry so much at night because I hate this body that I have. It's not me, I never was this fat. And I am not only wanting to lose weight to look good but to get rid of all these pains I endure every day. I hope someone can give me advice in dieting. Thanks
  • Naanbread91
    Naanbread91 Posts: 11 Member
    I was diagnosed with PCOS at 20 after an ultrasound that showed cysts in both ovaries. I have horrible facial hair, I put weight on very easily, and I haven't had a period in nearly a year.

    My issue is that people don't particularly understand it, my doctor didn't follow up the ultrasound or give me any advice... My friends just say I'm lucky not to have a period (I guess I agree), and my boyfriend doesn't understand it at all.

    Losing weight can alleviate the symptoms, but PCOS makes it harder to lose weight. Rubbish! Feel free to add me, would be nice to talk to other sufferers.
  • Miss_1999
    Miss_1999 Posts: 747 Member
    412elvira wrote: »
    I just turned 24 this past September. I have always been skinny and normal weight growing up. I was always active through high school. I started gaining weight around 11th-12th grade, but not much just slightly. So I assumed I was just eating too much junk food. So I kept going in my life, soccer, and a boot camp class. When I reached college in '09 I saw that I gained much more weight. But of course I thought I was just gaining the freshman 15. Until around my sophomore year in college I was overweight. My mother was diagnosed with endometriosis around my high school years. Then that year of my sophomore year my grandma was diagnosed with ovarian cancer. After a couple months after her diagnostic, I had a three month period where I did not have my menstrual. So I was scared and told my mother. We both went to my doctor. She did a bunch of tests. And was diagnosed with PCOS. I didn't really understand this fully. But it may seem that Cancer runs in the family. I was put in medication as well as birth control. I didn't really enjoy it because my body was growing weak. I went vegetarian with the medication and lost 15 lbs but could not pass after that. My mother who is a CNA talked to many doctors and they all told her that it will be hard for me to lose weight from the birth control. My doctor was fired and I stopped taking all medication, and It seems I am back at my original weight. I am really at a loss. Last year I was rushed to the hospital because my body shut down on me. The doctor looked at my mom and told her that I am at high risk of cancer. Which made me devastated. My mom keeps telling me I need to loose weight so I can get rid of this problem, but it's hard. I recently started doing green juice every morning. Trying to cut out junk. Exercising every other day. But I just don't know what kind of diet I can use to help me loose weight. I have a new doctor. And I have testings to do and will see how my sugar, blood, hormone levels are at. I cry so much at night because I hate this body that I have. It's not me, I never was this fat. And I am not only wanting to lose weight to look good but to get rid of all these pains I endure every day. I hope someone can give me advice in dieting. Thanks

    Don't give up! I know how frustrating it is. I remember hearing someone say once, "There is no prison worse, than living in a sick body", and it's true. First thing is first- you're on the right track. You mentioned you have a new doctor that is going to be doing some tests to see how your blood sugar, insulin levels, and hormones are. This is going to be a HUGE determining factor on how to best advise you to lose weight. For years, I fought, trying desperately to lose weight. I tried just about every diet you can think of. I just about starved myself (which I do NOT recommend to anyone), and I never lost a pound, because my body was producing so much insulin, and absorbing NONE of it, that I was literally not metabolizing anything I ate. It didn't matter what I ate, I was gaining weight.

    Knowing your numbers is going to be crucial. If you have any imbalances, talk to your doctor about what treatment options he/she would would suggest. Like I said, there are a variety of treatments available these days ranging from natural treatments, changes in diet and exercise, to various medications. The most recommended is typically a lower carbohydrate/higher protein diet, similar to what Type II Diabetics follow.

    You don't have to completely cut out sweets and food that you may really love and enjoy, but have them in smaller, and more limited quantities. That's one thing I made sure I did. The entire time, I never deprived myself of anything, if I wanted something, I had it, I just didn't go crazy on it.

    Please keep us updated on how your visit goes at the doctors office!

  • girlviernes
    girlviernes Posts: 2,402 Member
    edited October 2014
    I thought I had PCOS, I do have cysts and very irregular periods, but my doc did bloodwork (on the 3rd day of menstruation - apparently the timing is important) and determined I'm not PCOS although I am insulin resistant.

    By the way, my doctor is a reproductive endocrinologist, and I've found her to be more knowledgeable than the standard OBGYN.
  • Miss_1999
    Miss_1999 Posts: 747 Member
    I was diagnosed with PCOS at 20 after an ultrasound that showed cysts in both ovaries. I have horrible facial hair, I put weight on very easily, and I haven't had a period in nearly a year.

    My issue is that people don't particularly understand it, my doctor didn't follow up the ultrasound or give me any advice... My friends just say I'm lucky not to have a period (I guess I agree), and my boyfriend doesn't understand it at all.

    Losing weight can alleviate the symptoms, but PCOS makes it harder to lose weight. Rubbish! Feel free to add me, would be nice to talk to other sufferers.

    Naanbread91, it is frustrating that people don't understand it. Sadly enough, many women who get a diagnosis of PCOS are left baffled, because the doctors that give them the diagnosis give them so little information, or they (the doctors) have so little knowledge of the syndrome themselves. It's an extremely complex endocrine disorder, and it's completely possible to have PCOS without ever having cysts on your ovaries.

    There are a host of symptoms associated with PCOS, they are and not limited to: Unexplained weight gain, absence of period (without pregnancy), excess facial hair/body hair, loss of hair (on the head), skin tags, fatigue, dark patches of skin in the groin area and under the arms, oily skin/acne, elevated insulin levels, hormonal imbalances.

    There are a host of treatments available for women suffering with PCOS, and yes losing weight does help, but this can be extremely difficult often due to insulin resistance and/or hormonal imbalances. It's important to have a routine blood panel done and know your numbers. If anything is out of balance, speak with your doctor or endocrinologist about treatment options. There are many treatment options ranging from changes in diet and exercise, to natural treatments, as well as various types of medication to help combat the various imbalances and complications of PCOS.

    The biggest thing is, don't give up. Find a doctor who is knowledgeable, and is willing to take their time to work with you. We will live with this for the rest of our lives, we need someone who is willing to give us the utmost support and best care possible, so we can live long, healthy lives.

  • Miss_1999
    Miss_1999 Posts: 747 Member
    Dezzie1180 wrote: »
    I have PCOS and insulin resistance as well. I was officially diagnosed at 28. I have been overweight my entire life. I've been sickly since puberty. After, seeing doctor after doctor, I finally found a great one. I've managed to lose a little over 50 lbs these past 6 months thanks to her. I eliminated sugar, and grains. I'm feeling much better these days and my labs have improved. One of the things she informed me about is most women with PCOS also have gluten sensitivity. So cutting grains made me feel a hundred times better. I cut sugar/carbs down to the bare minimum to keep from coming a full blown diabetic. I was border line and dealing with hypoglycemia. Now, my glucose levels are stable and normal. So this is what has worked for me. I was on metformin but I no longer take it since my glucose was never high. The metformin actually nearly sent me into diabetic coma cause my glucose dropped to 57. I'm nearly pill free. Hopefully once I hit onederland I'll be taken off spironolactone. I'm on it to prevent hair loss. From my understanding once everything is balanced typically the hair issues improve greatly. Feel free to add me if you all need support☺

    That is AWESOME! I am SO glad you've found a doctor who was really invested in you and your health! This is what I'm talking about! :smiley: I remember Tara, she's a mod in one of the PCOS support groups I'm in, speaking about gluten sensitivity. She does 100% better when she avoids it completely in her diet. You are a wonderful example of how a change in diet and exercise helps to control PCOS! It's not a "one size fits all" disorder, as there are so many different treatments, and different treatments work for different people. We are so very fortunate to have the knowledge and tools that we do, now to be able to treat PCOS the way we do. It's wonderful that you aren't having medication!

    Now, if you're talking about excess hair growing (like facial hair), unfortunately, I haven't knowing anyone who's had that go away. My labs are flawless, and unfortunately, wax, tweezers, and a razor are my best friends. There has been zero change. Now, my hair did grow back on it's own (on my head). I'd lost most of my hair, and had resorted to wearing clip on hair all the time, so my hair is extremely long now, and it's all mine. However, the facial hair, from all the women I've met over the years who have their PCOS under control and with great weight loss, are still struggling with the facial hair.

  • Miss_1999
    Miss_1999 Posts: 747 Member
    I thought I had PCOS, I do have cysts and very irregular periods, but my doc did bloodwork (on the 3rd day of menstruation - apparently the timing is important) and determined I'm not PCOS although I am insulin resistant.

    By the way, my doctor is a reproductive endocrinologist, and I've found her to be more knowledgeable than the standard OBGYN.

    This is true, RE's usually are more knowledgeable than OB/GYN's, as that's their speciality. What did she diagnose you? Do you have any of the other symptoms of PCOS? It is absolutely entirely possible to have insulin resistance and NOT have PCOS, and it's absolutely possible to have cysts on your ovaries and NOT have PCOS as well.
  • Sadi_Kalen
    Sadi_Kalen Posts: 33 Member
    i too have PCOS. after many blood tests and next to no periods over the last few years, the dreaded weight gain and anxiety, my doc finally gave me a dx for PCOS. my first attempt at weight loss failed dismally and i actually put my body into starvation mode because eating 1200 calories per day plus exercise waz WRONG for me. i ended up with swelling and edema in my legs and feet and i waz very VERY sick. i also gained 20 kg after that diet failure so it took me some courage to approach weight loss again.

    all i can pinpoint so far with my success is research and vigilance with exercise and continuing my water intake, reducing carbs and upping my proteins and fats haz resulted in a dramatic loss of 14 kg since July for me. i do believe my PCOS caused issues with losing weight initially but i somehow got in control of it this year. i honestly don't really know what i did differently apart from the macro ratio change and upping my daily calorie limit to 1400. this helped me lose weight steadily over July and August but i switched to 5:2 after a month plateau i couldn't shake without considering a calorie drop or more exercise.

    after last year's terrible failure i waz scared of doing that to myself again. glad i changed the eating plan and i'm losing weight a bit more slowly now but it is still working. oddly tho... i started getting periods again when i first started dieting, but since switching to 5:2 - despite the continued weight loss success - my period haz not come again since very early September. should i be concerned about this or is it just my PCOS playing up? i have noticed that the more weight i lose, the more anxiety i seem to suffer with. i also have had a resurgence of skin itching problems since my weight loss began. i'm really happy i'm losing weight but really unhappy with these side effects.
  • girlviernes
    girlviernes Posts: 2,402 Member
    Miss_1999 wrote: »
    I thought I had PCOS, I do have cysts and very irregular periods, but my doc did bloodwork (on the 3rd day of menstruation - apparently the timing is important) and determined I'm not PCOS although I am insulin resistant.

    By the way, my doctor is a reproductive endocrinologist, and I've found her to be more knowledgeable than the standard OBGYN.

    This is true, RE's usually are more knowledgeable than OB/GYN's, as that's their speciality. What did she diagnose you? Do you have any of the other symptoms of PCOS? It is absolutely entirely possible to have insulin resistance and NOT have PCOS, and it's absolutely possible to have cysts on your ovaries and NOT have PCOS as well.

    Basically all I have is insulin resistance. I do have abdominal obesity, the dark skin patches, fatigue, and cysts. A little bit of acne. I never had problems with facial hair or thinning hair, never unexplained weight gain and it is not particularly hard for me to lose weight. I guess my symptoms are best explained by insulin resistance and ups and downs with my weight.

    I thought I would share this since I have had multiple past OBGYNs say I was PCOS, but never tested my hormone levels. So I think it is very important to work with a knowledgeable doctor.
  • Dezzie1180
    Dezzie1180 Posts: 47 Member
    Miss_1999 wrote: »
    Dezzie1180 wrote: »
    I have PCOS and insulin resistance as well. I was officially diagnosed at 28. I have been overweight my entire life. I've been sickly since puberty. After, seeing doctor after doctor, I finally found a great one. I've managed to lose a little over 50 lbs these past 6 months thanks to her. I eliminated sugar, and grains. I'm feeling much better these days and my labs have improved. One of the things she informed me about is most women with PCOS also have gluten sensitivity. So cutting grains made me feel a hundred times better. I cut sugar/carbs down to the bare minimum to keep from coming a full blown diabetic. I was border line and dealing with hypoglycemia. Now, my glucose levels are stable and normal. So this is what has worked for me. I was on metformin but I no longer take it since my glucose was never high. The metformin actually nearly sent me into diabetic coma cause my glucose dropped to 57. I'm nearly pill free. Hopefully once I hit onederland I'll be taken off spironolactone. I'm on it to prevent hair loss. From my understanding once everything is balanced typically the hair issues improve greatly. Feel free to add me if you all need support☺

    That is AWESOME! I am SO glad you've found a doctor who was really invested in you and your health! This is what I'm talking about! :smiley: I remember Tara, she's a mod in one of the PCOS support groups I'm in, speaking about gluten sensitivity. She does 100% better when she avoids it completely in her diet. You are a wonderful example of how a change in diet and exercise helps to control PCOS! It's not a "one size fits all" disorder, as there are so many different treatments, and different treatments work for different people. We are so very fortunate to have the knowledge and tools that we do, now to be able to treat PCOS the way we do. It's wonderful that you aren't having medication!

    Now, if you're talking about excess hair growing (like facial hair), unfortunately, I haven't knowing anyone who's had that go away. My labs are flawless, and unfortunately, wax, tweezers, and a razor are my best friends. There has been zero change. Now, my hair did grow back on it's own (on my head). I'd lost most of my hair, and had resorted to wearing clip on hair all the time, so my hair is extremely long now, and it's all mine. However, the facial hair, from all the women I've met over the years who have their PCOS under control and with great weight loss, are still struggling with the facial hair.

    Thanks
  • Dezzie1180
    Dezzie1180 Posts: 47 Member
    Hmmm...my reply partially showed up. I can live with taking one pill a day and a good pair of tweezers. Yes, since becoming gluten free my life has changed drastically. Before I had zero energy and always felt sick. I think changing to a gluten free and grain free lifestyle saved my life. I feel so much better. Not to mention my brain fog cleared up
  • Miss_1999
    Miss_1999 Posts: 747 Member
    Miss_1999 wrote: »
    I thought I had PCOS, I do have cysts and very irregular periods, but my doc did bloodwork (on the 3rd day of menstruation - apparently the timing is important) and determined I'm not PCOS although I am insulin resistant.

    By the way, my doctor is a reproductive endocrinologist, and I've found her to be more knowledgeable than the standard OBGYN.

    This is true, RE's usually are more knowledgeable than OB/GYN's, as that's their speciality. What did she diagnose you? Do you have any of the other symptoms of PCOS? It is absolutely entirely possible to have insulin resistance and NOT have PCOS, and it's absolutely possible to have cysts on your ovaries and NOT have PCOS as well.

    Basically all I have is insulin resistance. I do have abdominal obesity, the dark skin patches, fatigue, and cysts. A little bit of acne. I never had problems with facial hair or thinning hair, never unexplained weight gain and it is not particularly hard for me to lose weight. I guess my symptoms are best explained by insulin resistance and ups and downs with my weight.

    I thought I would share this since I have had multiple past OBGYNs say I was PCOS, but never tested my hormone levels. So I think it is very important to work with a knowledgeable doctor.


    Thank you for sharing! You are absolutely right, it is extremely important to work with a doctor who is knowledgeable in the disorder. And that's the one thing that I stress the most is knowing your numbers- insulin levels, and hormone levels. If they aren't doing any blood work on you, but giving you a diagnosis, you'll definitely want to inquire about having your levels tested. If they won't, then you'll definitely want to look into finding another doctor. Just like in your case, it may not be PCOS at all, or in my case, it literally saved my life, as I was slowly dying, because instead of my pancreas "giving up" so to speak, and becoming a Type II Diabetic, it was producing enough insulin for five adults, and I absorbed none of it. Had it not been treated, and my pancreas kept on (which it showed no signs of stopping) I would've eventually died of insulin poisoning.

    I am very thankful that you found an RE that has been able to treat your cysts, and IR, and given you the proper diagnosis. Thanks again for sharing your story!
  • Miss_1999
    Miss_1999 Posts: 747 Member
    Sadi_Kalen wrote: »
    i too have PCOS. after many blood tests and next to no periods over the last few years, the dreaded weight gain and anxiety, my doc finally gave me a dx for PCOS. my first attempt at weight loss failed dismally and i actually put my body into starvation mode because eating 1200 calories per day plus exercise waz WRONG for me. i ended up with swelling and edema in my legs and feet and i waz very VERY sick. i also gained 20 kg after that diet failure so it took me some courage to approach weight loss again.

    all i can pinpoint so far with my success is research and vigilance with exercise and continuing my water intake, reducing carbs and upping my proteins and fats haz resulted in a dramatic loss of 14 kg since July for me. i do believe my PCOS caused issues with losing weight initially but i somehow got in control of it this year. i honestly don't really know what i did differently apart from the macro ratio change and upping my daily calorie limit to 1400. this helped me lose weight steadily over July and August but i switched to 5:2 after a month plateau i couldn't shake without considering a calorie drop or more exercise.

    after last year's terrible failure i waz scared of doing that to myself again. glad i changed the eating plan and i'm losing weight a bit more slowly now but it is still working. oddly tho... i started getting periods again when i first started dieting, but since switching to 5:2 - despite the continued weight loss success - my period haz not come again since very early September. should i be concerned about this or is it just my PCOS playing up? i have noticed that the more weight i lose, the more anxiety i seem to suffer with. i also have had a resurgence of skin itching problems since my weight loss began. i'm really happy i'm losing weight but really unhappy with these side effects.

    First, congrats with your weight loss! I know it's extremely hard for those of us living with PCOS to find the right balance to lose weight. What you're doing is typically what's given out by most doctors and nutritionists- a lower carbohydrate/higher protein diet. Keeping your water intake up is definitely essential, as well. As far as your period being absent, I would say this probably has a lot to do with the anxiety (and yes, both are to signs/symptoms from PCOS). I remember having the horrible itching, too. My ears itched. I used to carry around sweet oil, and swabs and swab my ears with them.

    I am NOT a doctor, so you would definitely want to consult with your doctor on this, but you may be experiencing some anxiety due to your hormone levels trying to balance out. When you have PCOS, the majority of the time, you've got *some* type of hormonal imbalance. As you begin a treatment (this can be as simple as a change in diet and exercise which you're doing), your hormone levels will begin to level out. It can really mess with you when they do. This *could* be the cause of some of the itching and anxiety. I absolutely cannot say for sure. but may be a sign of your estrogen trying to come up.

    Whenever you're able, try to make an appointment with your doctor and discuss with him/her what's being going on. Let them know what wonderful progress you've been making, and ask about having some blood work done. Tell them you'd like to know where your hormone levels are, and if anything is high/low, or right on target. This will help to let you know where things are, and maybe if these are the culprits. Keep us posted!
  • Miss_1999
    Miss_1999 Posts: 747 Member
    Dezzie1180 wrote: »
    Hmmm...my reply partially showed up. I can live with taking one pill a day and a good pair of tweezers. Yes, since becoming gluten free my life has changed drastically. Before I had zero energy and always felt sick. I think changing to a gluten free and grain free lifestyle saved my life. I feel so much better. Not to mention my brain fog cleared up

    I wish we didn't have to live with the tweezers and all of the other things that go with the hair problems. I think that's just about the only thing that everyone seems to have in common. I am thrilled for you that your quality of life has improved so dramatically! This is wonderful news! :D

  • Unstoppable4
    Unstoppable4 Posts: 14 Member
    Thank you for sharing! I was diagnosed with PCOS in 2007, and I'm still trying to figure out how to get it under control. It's such a shame that not many doctors know how to properly care for women dealing with PCOS.
  • 4bettermenow
    4bettermenow Posts: 166 Member
    edited October 2014
    I was just diagnosed with PCOS two months ago. I am 38 years old. After having my tubes tied 7 years ago, my body apparently couldn't handle no birth control . For five years I begged drs to find out what was wrong with me. I was gaining weight no matter what I was trying to do, I had horrible cramps all month long, heavy heavy periods leaving me anemic and more tired than I already was. On top of that, horrible aches and pain all throughout my body. There were other signs, but a dr finally tested me hormones and gave me a diagnosis.

    He started me on bc pills. And you know what? I've lost 10lbs in the last two months. My acne has gone away. My period last week was light with very little clotting (hallelujah!). I still have the achiness, but it is diminishing. I am working out every morning and not being completely exhausted by afternoon. I finally see a light in my tunnel and let me tell ya, I am running at it full force. LOL Because of the pcos diagnosis, I did a bunch of research and I have cut sugar out of my diet by a lot. I limit my carbs and check all the packages. I am sure that is also helping with how I feel.