ineffectively undiagnosed?

kgibbz
kgibbz Posts: 102 Member
So MeepleMuppet made a point to me that I had never known before.That you do not need to have cysts to have PCOS. Now I have a ton of questions! So when I was 18 my OBGYN ordered some blood tests that were "abnormal"- not sure what. Then she sent me to an endo, which the only time I saw him was during the ultrasound. He said, no cysts, no PCOS, youre fine, go home; and I never saw him again. OBGYN never mentioned it again. So- at the time I had no symptoms and no reason to believe I had PCOS so I took my good news and ran, but I was on Yaz at the time so could my BCP have covered symptoms and effected test results? I called today to see if I could get old records so hopefully that can connect some dots.

Replies

  • miranda_mom
    miranda_mom Posts: 873 Member
    Not only with BCP mask the symptoms of PCOS but it can also prevent you from getting cysts when you were normally get them. The cysts are the result of the body trying to ovulate unsuccessfully - your body does try to ovulate when you're on the pill. So if you were on the pill when you had your ultrasound or had recently come off of it, there might not be cysts.
  • kgibbz
    kgibbz Posts: 102 Member
    I was on the pill at the time. I called the endo I saw back then and I'm having my records sent to me.
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    1. No cysts does not mean no PCOS. Get a second opinion and/or find a new doctor if your current one tells you that. PCOS is a syndrome, which by definition means that not everyone will have every symptom. This includes the cysts. Hell, the ultrasound tech couldn't even find one of my ovaries, let alone cysts. :noway:

    As someone else mentioned, the cysts form because the body is attempting to ovulate. (Fun fact -- most women get cysts at some point or another, sometimes things just misfire.) If your hormones are so out of whack that you don't even have cycles, then you won't have cysts. Likewise, if your body is successfully ovulating, even if the cycle is really long (or short), then you probably won't have cysts.

    2. Yaz (et. al.), in particular, I suspect could cause a false negative. Of the hormonal birth controls out there, it's one of the only ones (if not the only one) that can actually reduce some of the symptoms of PCOS and not just cover them up with false periods. This is because its active ingredient is similar to progesterone, something we generally lack or don't have enough for the amount of estrogen in our systems, and has been shown to have mild anti-androgen effects (elevated androgens are also part of the issue with PCOS).

    3. Always ask for a copy of your blood tests. Doctors go by what the lab says is "normal," and what's "normal" for the lab may still be in the red zone in reality. I had this issue with my insulin -- I stop losing weight long before my fasting insulin reaches the "high" cutoff (I'm guessing my cutoff is about 15, which I'll probably be able to verify in about a week, when I see my doctor for another followup; the cutoff according to LabCorp is like 20 or something). I suspect the same thing can happen with other readings. The numbers are statistical averages, basically, and while they're generally pretty accurate, there is still those few percent of people who are outliers and have issues before actually hitting or exceeding that cutoff number.
  • kgibbz
    kgibbz Posts: 102 Member
    1. No cysts does not mean no PCOS. Get a second opinion and/or find a new doctor if your current one tells you that. PCOS is a syndrome, which by definition means that not everyone will have every symptom. This includes the cysts. Hell, the ultrasound tech couldn't even find one of my ovaries, let alone cysts. :noway:
    I am seeing a new doctor now, which is what opened my eyes to the doctor 7 years ago saying I was fine. thinking to myself " not much has changed" I bet I've had PCOS all along.
    3. Always ask for a copy of your blood tests. Doctors go by what the lab says is "normal," and what's "normal" for the lab may still be in the red zone in reality. I had this issue with my insulin -- I stop losing weight long before my fasting insulin reaches the "high" cutoff (I'm guessing my cutoff is about 15, which I'll probably be able to verify in about a week, when I see my doctor for another followup; the cutoff according to LabCorp is like 20 or something). I suspect the same thing can happen with other readings. The numbers are statistical averages, basically, and while they're generally pretty accurate, there is still those few percent of people who are outliers and have issues before actually hitting or exceeding that cutoff number.

    I called earlier this week and they are mailing my old medical records so I can view them.
  • teddiebare
    teddiebare Posts: 46 Member
    I am going to go out on a limb and say that one thing that most of us have learned through this journey is to never trust what one doctor tells you, especially if it goes against everything you know to be true about your own body.

    In the span of one month I had one doctor tell me that I should 'just be happy' about the 42 lbs I had lost, despite the fact I was gaining again uncontrollably and had not changed anything with my diet and exercise, and another who asked me if I had considered weight loss surgery. I literally had to convince my doctor to run my testosterone (we were already doing follow-up on my D), and we were both surprised when it came back high. I was on accutane when I was younger, and actually thought it would come back really low.

    I even was ordered to do a sleep study before this, because they thought I was gaining because I might have sleep apnea. Turns out, I don't. I had already figured out that I should get copies of all my blood work to review myself, and finally my OBGYN referred me to a PCOS specialist. In my area, the endocrinologists won't see you for PCOS. The specialist I finally saw in January was able to explain everything to me in much better detail, and a lot of things throughout my life finally started to make sense. I started having issues when I was 11. I wasn't diagnosed until I was 35, despite numerous trips to various specialists and family practice doctors. I would estimate my thyroid has been check 15-million times, and the doctors always just shrugged when it came back fine.

    I don't have any cysts, and I actually have more problems with SHORT cycles, instead of the typical long ones. Instead of treating my testosterone, I was talked into trying accutane twice, which has left me permanently night blind. It took me a year to get pregnant, and everyone blamed my weight and never looked at anything else. My cholesterol has always been hard to control, despite a very good diet and exercise regimen. There's just so much that I could have avoided if they had just diagnosed me sooner. Thank god I'm only hypoglycemic, and that I hadn't gotten to Type 2 Diabetic yet.
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    I am going to go out on a limb and say that one thing that most of us have learned through this journey is to never trust what one doctor tells you, especially if it goes against everything you know to be true about your own body.

    In the span of one month I had one doctor tell me that I should 'just be happy' about the 42 lbs I had lost, despite the fact I was gaining again uncontrollably and had not changed anything with my diet and exercise, and another who asked me if I had considered weight loss surgery. I literally had to convince my doctor to run my testosterone (we were already doing follow-up on my D), and we were both surprised when it came back high. I was on accutane when I was younger, and actually thought it would come back really low.

    I even was ordered to do a sleep study before this, because they thought I was gaining because I might have sleep apnea. Turns out, I don't. I had already figured out that I should get copies of all my blood work to review myself, and finally my OBGYN referred me to a PCOS specialist. In my area, the endocrinologists won't see you for PCOS. The specialist I finally saw in January was able to explain everything to me in much better detail, and a lot of things throughout my life finally started to make sense. I started having issues when I was 11. I wasn't diagnosed until I was 35, despite numerous trips to various specialists and family practice doctors. I would estimate my thyroid has been check 15-million times, and the doctors always just shrugged when it came back fine.

    I don't have any cysts, and I actually have more problems with SHORT cycles, instead of the typical long ones. Instead of treating my testosterone, I was talked into trying accutane twice, which has left me permanently night blind. It took me a year to get pregnant, and everyone blamed my weight and never looked at anything else. My cholesterol has always been hard to control, despite a very good diet and exercise regimen. There's just so much that I could have avoided if they had just diagnosed me sooner. Thank god I'm only hypoglycemic, and that I hadn't gotten to Type 2 Diabetic yet.

    OMG, that's one thing that pissed me off so much this last time I was struggling to lose weight and had gained like 20lbs in two months -- my OB/GYN (who had originally diagnosed my PCOS) just shrugged it off as me being lazy and not doing it right. She kept recommending Weight Watchers, but agreed to run the tests (to humor me, I think).

    I saw someone else on here mention that their OB/GYN didn't care about her issues with PCOS, because she wasn't trying to get pregnant, and in hindsight, I've come to the same conclusion about mine, because I was trying when I first got diagnosed, but wasn't when I went back.

    My general doctor (who I promptly fired) even accused me of "doing it wrong," because I wasn't running, swimming, or biking (because according to her, martial arts with sparring doesn't burn calories) and refused to run the tests. :noway:

    I then went to a new doctor, who actually got the test results before they actually returned them (they hadn't quite finished all of them yet, because the testosterone one couldn't be done at the local lab), reviewed them and said "yep, you could use Metformin. You're not Diabetic/pre-diabetic yet, but if we ignore it, it'll only be a matter of time." She didn't want to step on the other doctor's toes, so said to call her after my followup with my OB/GYN if she didn't agree with my new GP. My OB/GYN looked at the numbers, saw that they were below the lab's thresholds, and was like "yep, you're fine. Go join Weight Watchers." To be fair, she did offer to refer me to an endo, but my insurance doesn't require referrals to specialists, and Metformin helped me before, so I was going to try that first, before I had to shell out a couple hundred dollars to see a specialist, who would very likely say pretty much the same thing.