Newly diagnosed with PCOS..questions...

stormninja11
stormninja11 Posts: 23
in Getting Started
Hello All. Today, I was most likely diagnosed with PCOS. Obviously, none of the tests are back, but the Dr. was pretty confident that is what is going on. Some history: haven't had a regular period in 17 years; diagnosed with diabetes in June of last year; started Metformin regularly in October. Since the end of November, I've lost about 35 pounds, starting at 242 and currently 207. The doctor has put me on some medicine to "kick start" my period and then I will go on birth control (which I have never been on). The only symptoms I have are no period, diabetes, and losing hair on top of my head (which was being controlled by rogaine). I am a little saddened I guess because I am worried about a couple of things. First the mention of the cancer problem, with so much time having passed being undiagnosed, it worries me that the cysts could have grown into something bad. (The Dr. today talked about this today in a general discussion about PCOS.) I went through 2 rounds of tests years ago and the only thing was offered was 1. I was too fat and needed to lose weight and 2. If you want you can go on birth control to get your periods back (which the no period thing doesn't bother me). No mention of the potential cancer thing. Second is the side effects of the birth control pill. Can anyone offer any general advice on either of these two worries? Or any other comments or advice for a newly diagnosed PCOS person? Any thoughts on weight loss with this diagnosis and the medicines I am on (or going to be on). The Dr. today said that someone my height (they say 5'8" but I always thought I was 5'9") should be about 140 - 160 and a good weight for me should be 150 (Really?! Can you at least acknowledge the fact that I've dropped 35 pounds recently? Geesh). Which didn't make me very happy, I'll be good if I get to 180 or so to be honest but anyways that's probably another post! Any help would be appreciated!

Replies

  • qtgonewild
    qtgonewild Posts: 1,930 Member
    just a question. ive never even heard of PCOS until i signed up for here on july 22nd. Im a big girl too. Well im working that down. But is this something every big girl proabably has? and just doesnt know it? or is it just something cool to say, like i have pcos. im just curious. im curious as why at my heaviest i was never told I have PCOS. and it sounds to me as tho every one and their mama has it. thanks.
  • apriljackss
    apriljackss Posts: 96 Member
    Hello there! Welcome to the PCOS club (sorry you're lumped in with the rest of us). I know how overwhelming that initial diagnoses can be. I was diagnosed just about 2 years ago, even though I had been to numerous doctors prior and complained of the same symptoms every time (missing periods mostly). But I will tell you that it is not as bad as it seems. While PCOS is not generally well-understood in the medical community, there is a small subset of specialists who devote their careers to PCOS. Two great websites that I have found invaluable on my journey to health with PCOS are

    www.pcosdietsupport.com
    www.pcosdiva.com

    The first one actually has a paid service you can join, if you are interested, where you will receive weekly meal plans and grocery lists based around the research that has been done on managing PCOS and it's symptoms. As I'm sure your doctor told you, there is no cure, but that does not mean that you can not live a healthy and happy life. These are both websites that focus primarily on diet. Why? Because everything you put into and onto your body affects your health. The first website also has a great tutorial to teach you more about what PCOS is and how it affects your body on a chemical level, which will in turn help you learn why changing your diet and lifestyle are the best methods of managing your PCOS. It might seem overwhelming at first, but I'm confident that the more you read, and the more you see how many women like you there are out there, you will know you are not alone and that you can do this!!
  • apriljackss
    apriljackss Posts: 96 Member
    just a question. ive never even heard of PCOS until i signed up for here on july 22nd. Im a big girl too. Well im working that down. But is this something every big girl proabably has? and just doesnt know it? or is it just something cool to say, like i have pcos. im just curious. im curious as why at my heaviest i was never told I have PCOS. and it sounds to me as tho every one and their mama has it. thanks.

    Women with PCOS are more at risk of becoming obese, but being obese does not mean that you have PCOS. They are not the same thing at all. PCOS is a hormonal imbalance and symptoms include, insulin resistance, missed or irregular periods, hair loss, excessive hair growth resulting from too much testosterone, excessive acne, darkening skin, and primarily is diagnosed by a blood hormone panel and/or ultrasound of the ovaries to determine the presence of cysts.
  • qtgonewild
    qtgonewild Posts: 1,930 Member
    thank you!
  • SharonNehring
    SharonNehring Posts: 535 Member
    I've had PCOS for 25 yrs and other than being on BC, I never had any other treatment for it for 20 yrs. I'm a RN and I have never heard of PCOS turning into cancer. I believe I wouldn't be too concerned about that at all.

    I've really had no issues with BC. For a few years I did continual BC, so I wouldn't have any periods, and yes my doctor suggested it. Six years ago I had a IUD placed and it's been the best thing I ever did in this regard. No periods, no PMS, no worries about it.

    Because PCOS often causes insulin resistance, this is why we gain weight and have a hard time losing it. A reduced carb diet is generally recommended. The metformin helps with IR and is the gold standard treatment besides BC. I like being on metformin actually. It decreases my appetite and is one of the main reasons why I've been successful with losing.

    Truly, PCOS messes with your hormones but it can be controlled. It's a chronic condition to manage, like having high blood pressure, but once you read up about it you'll see it's not the end of the world. Good luck!
  • JenniferMuriel
    JenniferMuriel Posts: 48 Member
    I second Sharon Nehring's comment about never having heard about PCOS turning into cancer. I'm a sexual and reproductive health RN (and have PCO) and I've never heard that.
  • rita27ny
    rita27ny Posts: 820 Member
    What if the person doesn't have a period in years due to pcos can it be possible to have cancer?
  • stormninja11
    stormninja11 Posts: 23
    Thank you everyone for your responses. As for the cancer thing, maybe I need to add that I guess my worry was hinged on the fact that the PCOS was left untreated for so long. Crap, now I can't remember what she exactly said. The doctor wasn't alarmist, although she was a little taken aback, (this might be TMI, so sorry) but basically since I haven't had a regular period for so long sometimes cells can grow irregularly in the uterus and then develop into cancer. Or something to that effect. Anyway, thanks again and I will continue to read up on the boards for more useful information.
  • rlengland2014
    rlengland2014 Posts: 98 Member
    Yes, PCOS does have a small risk of endometrial cancer. Fortunately, the prevention is just to get your menses more regularly. That's one reason to go on the pills, another reason to lose weight.

    I've had PCOS for 20 years, just recently decided to get it under control and have let 30 pounds. My menses has come back, which is good. You can control your hormones with diet.
  • poshmonkey
    poshmonkey Posts: 15 Member
    I believe the risk of cancer comes from those women who (like myself) build their lining every month, but rarely shed it - it's the risk of endometrial cancer. Just like there seems to be an increased risk of heart disease (in addition to the risk from those who are overweight with it).

    I have a friend who is average to below average weight who has PCOS though, so it's not something that every overweight woman has or will develop (for the post above!)
  • alasuzzo
    alasuzzo Posts: 4
    Before responding, I am not sure I understand your cancer fear? Do you have another diagnosis I'm not aware of? PCOS doesn't equate to cancer. Maybe I misunderstood.

    Also, congratulations on your weight loss. That is a great goal you just achieved!
  • 40DayFit
    40DayFit Posts: 246 Member
    I have to "third" the comment about not shedding the lining of the uterus on a regular basis and the possible risk of endometrial cancer. I was once prescribed progesterone to stimulate the shedding of that lining; my GYN wanted a menses/shedding at least quarterly. I preferred the progesterone to the entire range of synthetic hormones in regular birth control pills. I remember being prescribed BC pills when I was in my mid-teens--and NOT at all sexually active--and feeling confused and ashamed. I didn't understand at that time that the doctor was trying to treat PCOS, only that something was "wrong" with me.

    Somehow I've managed to regain some regularity in my cycle, with at least 8 cycles a year now. So far, I've not had any diabetes or pre-diabetic diagnoses, but man do I resent the increasing number of coarse, dark hairs. I fantasize about saving up and rewarding my weight-loss success with electrolysis treatments...one day, perhaps the money will come!

    As you speak with your doctor about your own symptoms and syndrome, you'll figure out where to concentrate your attention. There are ways to address inflammation through nutrition, and different courses of hormone treatments that can be tried. Perhaps some time on the forums already suggested can help you identify some of the symptoms you've taken for granted, and give you some tips for working with your doctor.

    Welcome to the cysterhood.
  • lovelayla
    lovelayla Posts: 123
    When I was first diagnosed the Dr. gave me Progesterone. I took 2 pills and my period came the next morning. Before that I would say that my period came 1-2 a year for 10 years. I saw MANY Dr.'s who seemed to not know why my periods never came. I started at 10 and they were irregular since then so the DR's would say that I was 'normal' since they were always irregular. At 10 it was more like 7 times a year and it decreased every couple years. I was never Overweight until 24 so maybe they did not make the connection since PCOS is seen as an overweight issue to some DR's.

    After that day I decided that I did not want to take hormones so I researched online and found out that the Atkins diet was good for PCOS.My periods were REGULAR for the first time in my life and my belly was super flat...I stopped eating low carb and my periods stopped too..I KNOW that low carb is best for my body and its issues, but its hard for me to stick with. Whenever I miss my period for 3 months in a row I eat guacamole,steak, and tuna with lots of mayo and my period comes the very next day...Weird but true.

    I have since been diagnosed as insulin resistant and prediabetic so now I'm slowly cutting my carbs down.
  • tgmichelleee
    tgmichelleee Posts: 144 Member
    Hey hun, first of all congrats on the weight loss! And welcome to the PCOS crew!
    Life with PCOS isn't that bad, but it can get stressful. I have opted not to get on birth control and am currently on Maca (it works wonders for me). I can't comment on BC, but I will say that Maca is helping me tremendously with my PCOS. I currently take 3,500mg of it on a 2 months on 1 week off schedule and my hirsutism, metabolism, hyperhidrosis, energy level, all dramatically improved. I also have a regular cycle (once every 35-37 days).
    In my opinion low carb also helps a lot with controlling hormones and there are a lot of studies out there that support that.

    As for the cancer worry, most cysts are benign for most people and from what I know most people seem to be getting diagnosed years after already having it (which was the case for me).
    Also to clarify, pcos does not turn into cancer but rather those with pcos have a higher risk for cancer which are totally different things.

    But nevertheless, best of wishes to you and your journey with pcos!
  • LKArgh
    LKArgh Posts: 5,178 Member
    PCOS cysts do not become cancerous. Whatever your dr was trying to tell you, it was not this.
    Since you already have diabetes, whatever you do for the diabetes, it is what you need for PCOS. Exercise, lose weight, watch your diet etc.
    I would ask the dr why he is considering birth control. This is something I have heard about 20 years ago when I was first diagnosed, and have never heard since. I have asked my regular endo, gynecologist and a reproductive endocrinologist about it, all said it is outdated advice and it does not help at all with PCOS treatment. It helps relieve some symptoms, like acne and facial hair, but if you do not have these symptoms to begin with, what is the point?
  • LouiseChe
    LouiseChe Posts: 24 Member
    I was officially diagnosed with PCOS just over six months ago. Many of the women in my family have it. Joy of all joys. My doctor was reluctant to put me on BC, and to be honest I didn't want to go on it either. I'm lucky in the fact that I am not diabetic or insulin resistant so I don't need metformin. I was recommended to go on a very low carb diet, which I did. For about two weeks and hated it! I then decided to try to lose weight a different way (and a more manageable way from my point of view). I changed my macro goals manually on MFP so that my carb goal was lower and my protein higher. I have had a lot of success with that, and in six months have dropped 32 kg. I have always struggled to lose weight and seemed to be putting it on really quickly. I was depressed and ready to give up totally. However, since losing the weight, my period comes regularly and is less painful. I have less pain and other PCOS symptoms have reduced hugely. My blood pressure and my pulse are in the normal range now. I still have a way to go before I hit the recommended weight for my height, but I feel so much better.

    My doctor did put me on spironolactone as a trial for 3 months. He wanted me to come back and double the dosage after that. However, I found that it upset my stomach and I got horrifically bad heartburn and I have elected not to take it. Anyone else had issues with this? I've heard some great things about spiro from other people but my experience wasn't good.

    Congratulations on your weight loss. That's fantastic. Good on you! All the best for your journey. Feel free to add me as a friend if you ever want to chat.

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