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Thread: My Dr wont Dx me with PCOS but I'm sure I have it.

  1. #1

    Default My Dr wont Dx me with PCOS but I'm sure I have it.

    My story
    I started my period when I was 14. I have always had irregular periods. I usually get 3 to 4 periods a year. I didnt think any thing of it in the beginning, I knew it wasnt right because my sister had hers every month. When I was 17 I moved far from my hometown . So in doing so i recieved a new doctor, a doctor I wasnt fond of. I live in Canada and Doctors here are all about getting you in and getting you out, they dont seem to want to take the time to listen to you. When I was 22 I got engaged . We werent looking into starting a family then but I knew I had to start looking into my problem with irregular periods so that when the time came to start a family we could. I asked my doctor about my irregular periods, and her reaction was like " you dont get your period everymonth?" as if she had never heard of irregular periods. Right then I knew I was talking to the wrong Dr, but there are not enough doctors around to just switch. No other doctor will take you on if you already have a family doctor. So anyways, when I told her about my irregular periods she told me to go on the pill for three months and that will work. I was so happy that that was all it was going to take, oh how niave I was. That most definately did not work, when I stopped after three months it took me 6 months to get my period back . I went back into see her and she sent me to a gyno.The gyno checked me over and said everything was fine, he had the same solution (the pill) only he stuck me on a different brand and said this will work. So I took it for three months. When I stopped them it took me 9 months to get my period back again.

    I started looking information up on the internet because the doctor didnt help me. I found PCOS and was like "OMG that is so me". I went to my doctor with this PCOS information. I told her that I had two whiskers on my face and some on my chest, she told me that it's normal, some women have it and its nothing to be concerned about. She decided to test my hormones and I had an MRI done to see for Cycts or what ever they look for with PCOS. MY blood work came back perfect and the MRI results were perect. I was excited because I figured they couldnt be wrong with tests. My doctor wanted me to try BC again and i said no, we wanted to start TTC.

    We have been trying for just over a year with no luck. I do OPTs around the time I feel I am ovulating, I get positives. I dont get pregnant and my period doesnt come. If you ovulate, im pretty certian it should be followed by a period if you are not pregnant.

    I went back to my doctor last month to tell her I have been trying for over a year and I still feel like I have PCOS, she did more blood work and all came back perfect. I told her I get positive OPTs but then wont get my period...she told me that I Ovulate every 4 weeks whether I get my period or not. When she told me that I was so excited, she is a doctor and she should know right. NOT! I went home and looked a lot of stuff up on the internet about ovulating and then not getting your period, and every site is saying if you absolutely ovulating it is always followed by a period, which means i am NOT ovulating every 4 weeks like she said. I know I need a second opinion and I hope I can find a doctor who will give it to me. I am going to get my doctor to refer me to my gyno and I am going to demand him treat me with PCOS, yes my hormone levels are good but nothing else is. I really do feel like I have PCOS

    treating myself, please do not judge.
    When looking up info on PCOS it said a lot of people with PCOS are on metformine, when I seen this I jumped for joy. My DH is diebetic, and he is on Metformine, he is perscribed three pills a day but only takes two becasue he only eats two big meals a day. So last month I started taking one 500mg of metformine a day, three days later i ovulated: or so the OPTs said so...19 days later AF came! I do not know if this was coincidence or not but I was super happy. I continued and still am taking one pill a day, I want to see if it comes this month as well, if it does then last month was not coincidence and I will continue to take it until my gyno percribes me some of that stuff!

    Has any one else had a hard time with being Dx with PCOS and if so I would love to hear your story!

  2. #2

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    I'm sorry your Dr's won't listen to you. That has to be awful. I also diagnosed myself with PCOS, and switched Dr's for an official diagnosis. My original gyn just told me I needed to lose weight and did no kind of testing or anything on me. At that point I hadn't had AF for a year. I actually see a Nurse Practitioner but she specializes in reproductive issues and specifically PCOS. I wonder if you have an NP in your area that might be able to help you? One awesome difference I've noticed between seeing her and a Dr is she is never rushes and always takes her time with me. When I do eventually get PG I will be transferred to an OB, but the way their office is I will have about 6 OB's to choose from as 6 OB's, 2 NP's, and a midwife all share this office and help each other out. I wish you had a place like that. It really has been amazing to have this network of Dr's and NP's.

    Good luck!!
    Also be careful with the Metformin because I think (not sure if it's everyone or just me) it can effect your liver and you don't want to do any damage to yourself. That's always been a concern with me and Met because apparently I have a fatty liver and they have to monitor and make sure there is no damage being done.
    Candice, 28, STC 7+ years


  3. #3

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    I was very similar to you with my cycles. Started at 15 and very irregular. It always amazed me that doctors always think the way to fix it is with birth control. No period? Here take this medicine, now you get your period every month. Um ok...and is that fixing any underlying problem that might be there? Probably not. I really didn't like how I felt on birth control so ended up not using it. My last gyno was actually okay with not having a period every month...she said some ladies don't. As long as you have at least 4 per year, it's fine...except if you're trying to conceive...then it makes life a little harder (obviously).
    I think it's great that you're taking your health into your own hands...you are your own best advocate. Is there any way that you can research doctors in your area and request a referral for a specific doc? It would be great if you could find someone who specializes in treating (or at least identifying) PCOS.

  4. #4

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    Quote Originally Posted by CandiceLeigh View Post
    I'm sorry your Dr's won't listen to you. That has to be awful. I also diagnosed myself with PCOS, and switched Dr's for an official diagnosis. My original gyn just told me I needed to lose weight and did no kind of testing or anything on me. At that point I hadn't had AF for a year. I actually see a Nurse Practitioner but she specializes in reproductive issues and specifically PCOS. I wonder if you have an NP in your area that might be able to help you? One awesome difference I've noticed between seeing her and a Dr is she is never rushes and always takes her time with me. When I do eventually get PG I will be transferred to an OB, but the way their office is I will have about 6 OB's to choose from as 6 OB's, 2 NP's, and a midwife all share this office and help each other out. I wish you had a place like that. It really has been amazing to have this network of Dr's and NP's.

    Good luck!!
    Also be careful with the Metformin because I think (not sure if it's everyone or just me) it can effect your liver and you don't want to do any damage to yourself. That's always been a concern with me and Met because apparently I have a fatty liver and they have to monitor and make sure there is no damage being done.

    A friend of mine is seeing a NP and she tells me only wonderful things about her. I am hoping she can help me but as I said, a lot of doctors will not look at you if you already have a family doctor because there are so many people who have no family physician. I am going to try. My DH has a different doctor then me and I would like to switch to his but unless he has room for me he will not because I already have one. I think if you are married you should automatically take his doctor if you wish. Also about Metformine, I realize there are risk, as there is to almost everything you take. I was unaware about the liver situation (thanks for info) so I will learn more about it and decide whether I should continue taking it. I only take 500 a day which would be the smallest dosage so I am not too worried about the effects. I get no side effect from taking it! Thanks so much for replying.

  5. #5

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    Quote Originally Posted by AnnaBoop View Post
    I was very similar to you with my cycles. Started at 15 and very irregular. It always amazed me that doctors always think the way to fix it is with birth control. No period? Here take this medicine, now you get your period every month. Um ok...and is that fixing any underlying problem that might be there? Probably not. I really didn't like how I felt on birth control so ended up not using it. My last gyno was actually okay with not having a period every month...she said some ladies don't. As long as you have at least 4 per year, it's fine...except if you're trying to conceive...then it makes life a little harder (obviously).
    I think it's great that you're taking your health into your own hands...you are your own best advocate. Is there any way that you can research doctors in your area and request a referral for a specific doc? It would be great if you could find someone who specializes in treating (or at least identifying) PCOS.
    Thank you for replying. I will definately have to see if I can find specialist who can help me. My family doctor is sending a referral for a gyno, but it takes months to actually see him. There are not many around and unfortunately so many need to see him.

  6. #6

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    Quote Originally Posted by kiwilove View Post
    A friend of mine is seeing a NP and she tells me only wonderful things about her. I am hoping she can help me but as I said, a lot of doctors will not look at you if you already have a family doctor because there are so many people who have no family physician. I am going to try. My DH has a different doctor then me and I would like to switch to his but unless he has room for me he will not because I already have one. I think if you are married you should automatically take his doctor if you wish. Also about Metformine, I realize there are risk, as there is to almost everything you take. I was unaware about the liver situation (thanks for info) so I will learn more about it and decide whether I should continue taking it. I only take 500 a day which would be the smallest dosage so I am not too worried about the effects. I get no side effect from taking it! Thanks so much for replying.
    *~"a review of the scientific literature from 1966 to June 2008, published in the Journal of the American Pharmacists Association concluded that metformin does not cause liver injury and does not adversely affect pre-existing liver disease or injury."~*
    A lot of the sites I have been to is basically saying that it does not cause damage. I think I will continue using it as long as I continue to feel great while on it.

  7. #7

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    You need to find another Dr. that you feel will support you and your struggle to conceive.

    If you do have PCOS in the end, its important to get your own prescription for Met, I know most people are on doses of 1500mg + per day.

    I'd also suggest that your husband takes all of his metformin as it isn't for post/pre-meal consumption but works with your body to lower insulin resistance, and lower your A1C over a long time period (ie. taking it 3 times a day to maximize and stabilize the diabetes... ) Doesn't matter if he eats once, twice or 6 times a day!! Just important for him to look after himself!!

    I hope you can find a Dr. that will work with you to help out with fertility!!

  8. #8
    Join Date
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    As far as self-medicating, if you are seeking treatment you don't want the doctor to see how you are doing on someone else's meds, because they will assume your body is doing that on its own without meds, and likely won't prescribe anything or will prescribe less than you actually need. Get off it, get in to see a doc and get a diagnosis and your own prescription. In the end that will only help.
    Me (40) DH (47) & furbabies * m/c 7/08 4/12 11/12

  9. #9

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    Quote Originally Posted by WishingNat View Post
    You need to find another Dr. that you feel will support you and your struggle to conceive.


    If you do have PCOS in the end, its important to get your own prescription for Met, I know most people are on doses of 1500mg + per day.

    I'd also suggest that your husband takes all of his metformin as it isn't for post/pre-meal consumption but works with your body to lower insulin resistance, and lower your A1C over a long time period (ie. taking it 3 times a day to maximize and stabilize the diabetes... ) Doesn't matter if he eats once, twice or 6 times a day!! Just important for him to look after himself!!

    I hope you can find a Dr. that will work with you to help out with fertility!!
    Thanks for the reply, my DH and I went into see his doctor together and he said it wasn't nessecary to take three pills if he only ate 2 times a day. The doctorgives him three a day perscription just incase, my DH sugars have been excellent since he has been on metformin only taking two a day. The doctor is shocked at how well he is doing!

  10. #10

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    Quote Originally Posted by Gwenn View Post
    As far as self-medicating, if you are seeking treatment you don't want the doctor to see how you are doing on someone else's meds, because they will assume your body is doing that on its own without meds, and likely won't prescri

    be anything or will prescribe less than you actually need. Get off it, get in to see a doc and get a diagnosis and your own prescription. In the end that will only help.
    Thanks for the reply! I was not taking metformin when I got all my tests done, I started after, my plan with taking it is to see if it helps me ovulate this month, last month I started taking it and I ovulated and had AF! I don't know if it was a coincidence or not so I thought Icontinue for this month and see if I ovulate again. If itworks then I will go in to dr and let them know. If it doesn't I will stop taking it and get a seond opinion. I do appreciate the reply because I hadn't thought of the fact it would be in my system for future test results.

  11. #11

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    With my first child it took me 6 months plus (and I only started O'ing around month 5) to conceive while on 1500 mg of Metformin.

    With my second, my cycles managed to stabilize more between pregnancies, and it took me one month to O' and catch the egg while on 1500mg of Metformin.

    This time I got pregnant once on my own over the summer while not on Met. and mc'd at 7 weeks. I started back on my Metformin and managed to get pregnant my 2nd cycle post mc. I strongly believe its what allows me to produce a good egg, and to actually stay pregnant.

    I strongly encourage you to seek out another physician and see what they have to say about the matter!

  12. #12

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    I was Dx with PCOS 2 years ago. I had a hard time dealing with it because I thought it meant the end of the road. The more I read about it, the better I felt. I knew there was a possibility of having a child, it just might be a little harder.
    My RE put me on Femara and Met together. He said those 2 drugs together are PCOS wonder drugs together.
    We were lucky and got pregnant right away. But now that we are getting ready to start trying again, I am having problems with my cycles. I know that I am not O'ing so I will probably have to go back to the RE to get pregnant again.
    I would make sure before you continue taking anything that you get a correct diagnosis. You dont want to be on any meds that you don't need to be on. When it comes to TTC and taking meds, you really want to make sure that you are being monitored by your doctor.
    I do wish you the best and hope that whatever you find out, that you have success in getting pregnant!
    *Sara-28**Lee-28* 11/21/09 DX with PCOS 05/10


    **TTC since 08/01/14. 1500mg of Metformin and 2.5mg Femara**

  13. #13

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    Just an update for those following. Unfortunately I did not Ov or get AF in a timely manner this cycle. So taking metformin did not help me. I have been keeping track of my cycles this year and my cycles are 74 to 78 days long this year. which means when i ovulated last cycle it was because it was time, not because of met. I stopped taking it immediately and waited 5 days and decided to start taking FemMed Hormonal Balance to help regulate my cycle. I realize these things take time to kick in but i am so desperate . Me and my information seeking :/ I learned about soy iso and thought i would try it. i am impatient and did not wait for new cycle becasue i couldnt wait another month for AF to finally come. so i took it days 35 to 39 and am now waiting on positive OPT. Wish me luck.

  14. #14

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    So it has been 20 days since I took my last day of soy iso. No positive opks. I did however start spotting brown mucus 6 days ago, it is very light and only requires a pantyliner just incase and it is still coming. I don't know if I should consider this my period where it is extremely ligh and only brown. Has anyone ever taking soy iso mid cycle and have this happen? Should I consider this my period and start a proper cycle of soy iso? I could not find a forum on soy iso. Any insight would be appreciated. Thanks and baby dust to all!

  15. #15

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    Also to anyone still following. I went to my doctors again but only for a pap. She asked when my last period wa and I told her, she was like oh, you missed a period are you pregnant. I had to tell her again that my cycles come ever 3 to 4 months and she was like "oh ya". So she is sending referral into gyno and told me her would put me on metformine to regulate me even though I don't havePCOS...so I'm assuming I will be put on higher dose, before when I was taking them it was on my own and was only taking 500mg a day.

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