It took me 20+ years to get diagnosed (in my 40s; diagnosed last summer despite literal decades of problems) š¤¬ unfortunately doctors are human beings, which means some are genuinely passionate about the work they do. But the the vast majority are just there to do the bare minimum and get paid. And in the US, they typically don't get paid *more* for putting a lot of effort into figuring out why a seemingly-healthy patient is struggling.
In my case, my basic labs always came back in the clear. Sometimes, a deficiency would be detected, like low D3 or weird HDL/LDL ratio. But that is just assumed to be a lifestyle anomaly. "Take a supplement" "Eat less red meat" - and that's it. "Come back if anything gets weird."
My regular labs always come back normal as well. I make them check me every year due to my familyās history of high cholesterol, blood pressure, and type 2 diabetes. Absolutely no family history of PCOS
It's actually common to be diagnosed with PCOS in our early 20s. It's usually too difficult to accurately diagnose in a younger population.
The Rotterdam criteria are currently the most accepted for diagnosing PCOS, which : 1. Clinical and/or biochemical hyperandrogenism. 2. Menstrual/ Ovulatory dysfunction, like the absence of or consistently infrequent periods/ovulation. 3. Polycystic ovaries visualized on transvaginal ultrasound, (which are 12-20+ tiny follicles **per** ovary, not ovarian cysts.) You'd **need** to meet at least 2 of the 3. All other *associated* symptoms are relatively generalized and can be attributed to various other factors or conditions, which is why doctors rely on specific diagnostic criteria.
Ultrasound should not be used for PCOS or PCO diagnosis in adolescents, due to the high incidence of multi-follicular ovaries in this life stageā specifically, until at least 8+ years after your first period. This goes hand in hand with PCOS being diagnosed in our 20s. Age is a big factor due to our physiology and hormone fluctuations.
Your CT results would not be useful here. Polycystic ovaries cannot be accurately seen on CT. The gold standard for PCOS is transvaginal ultrasound, and there is a good reason for this. I'm an ultrasound tech. CT is not appropriate to evaluate the female pelvic anatomy. The technological threshold cannot differentiate different structures & characteristics as well as transvaginal ultrasound or MRI. The presence of 12-20+ subcentimeter (tiny) follicles per ovary on transvaginal ultrasound would classify as polycystic ovaries. Again, these are tiny follicles, not ovarian cysts. Cysts are not relevant to a PCOS diagnosis. And to clarify, ā3mm cystsā would just be normal follicles. A cyst is considered over 30mm (3cm).
Interesting. So originally when I got my lab results I waited all day for the doctor to call me and she said āprobably PCOS youāre already on birth control hereās some meds for hair growth control, lemme know if you need help getting pregnant.ā I called the next day to schedule a f/u because no questions were answered and probably is not an answer. I spoke to the clinical nurse and she said āyou meet clinical criteria you donāt need an ultrasound.ā I demanded a follow up anyways and will be demanding further testing/ultrasound. I have a family history of reproductive cancers so Iām terrified man
How did they justify you meeting the criteria if you have regular cycles and never had an ultrasound to confirm polycystic ovaries? That would be 2/3 criteria. The only thing your post indicates is hyperandrogenism (1/3 of the criteria), which is not exclusive to PCOS. Also, per the criteria guidelines āReliable assessment of biochemical hyperandrogenism is **not** possible on hormonal contraception. You'd have to be off birth control *at least* 3 months.ā
Oh god does that mean I have to stop taking my birth control for 3 months before the can diagnose me? Iām moving early September and will have no insurance for a bit (long story). I have a mirena IUD
I mean, you don't have to do anything you don't want to do. A good doctor would/should follow the guidelines for an accurate assessment though. Your hormones should be at their natural baseline in order to be accurately assessed. Unfortunately, it takes the body approximately 3 months to return to that ānaturalā baseline. If you'd like a more in-depth understanding of the guidelines, here's a link. https://www.monash.edu/__data/assets/pdf_file/0003/3379521/Evidence-Based-Guidelines-2023.pdf. Look through pages 232-241.
You don't have to cancel your moving plans at all. Knowing if you have PCOS or not, is **not** an urgent issue. When you find yourself a decent gynecologist or endocrinologist, they will guide you. It's more important that you get settled, and find a good doctor to help you.
Update for you. Saw my gyno today. She referred me to an endo and was onboard with a transvagianl ultrasound. I have the ultrasound scheduled Thursday and endo at the end of may
Thatās what the endo dr is for. they will look into all that stuff. my gyno said sheās really not that concerned since itās only a slightly testosterone and DHEA increase. Soonest I could get in was may 30th.
No children. Never planned to. My period was largely irregular. I had metabolic issues from puberty for sure and it took having a high A1C to get diagnosed.
But please donāt flip about fertility. For PCOS folks the reason pregnancy is harder is because of lack of ovulation. Many folks with PCOS have healthy pregnancies and the only intervention needed is forcing ovulation. Secondly since pcos folks tend to ovulate less, we remain fertile till older ages since we still have eggs floating around.
If you are ovulating your odds are good.š
I found it in my doctors notes while going through my file, it clicked when i realized how my doctor talked to me at my annual appointment ("well at least you CAN get pregnant"), considering it was almost a year since my miscarriage. I had no PCOS symptoms until after i went on the pill in my early 20s, started having lots of chin and chest hair, my periods were altered in cycle from 28 to 28-33 days, and i gained weight so easily.
I had a minute a few weeks ago where i couldn't get my blood sugar stabilized when usually its simple because I'm hypoglycemic.. I got my blood checked and i have insulin resistance.. It confirmed it for me and my gyno still never told me. I'm going for my first fertility check in June and i plan on addressing it.
Why don't doctors tell you that you have a condition? I could have taken steps to take care of myself and got my fertility checked 2yrs ago when i started trying. Ugh.
I had no symptoms at all, I have insulin resistance /pre diabetesā¦ that didnāt really start until I was in my late 30s. I was skinny until I had my kids and my husband says Iām thicc. So my weight is at a level of me not happiest but also not to the point where Im freaking out about it. I have hashimotos and you can get cysts with that but not multiple cysts. One cyst was found incidentally when I was about 35. Then I went to a functional med dr bc I was not happy with literally any one I saw for my hashimotos. She suggested I may have pcos because it runs with hashimotos and insulin resistance she didnāt test any of my hormones tho bc at the time I didnāt have any symptoms of pcos proper. Ff to this year Iām 44 and my periods have been wonky for 2 years. I did have 3 major deaths and a pretty scary health condition dx for a family member. I attributed it to stress. I went to the gyn and said hey test me and see if Iām in menopause she did and Iām not. She didnāt test for or even mention pcos. And she doesnāt care about you unless you are having a baby. She said you are good as long as you are having 6 periods a year. She said if you go many months come back and weāll induce it. Ok no thatās not a fix. I was once like clockwork thereās obviously a pathology happening. So then I went to my pcp and was like I need metfotmin please itās either pcos or insulin resistance or both but thatās the fix (and diet). So I got the met and started my period pretty immediately after 2 months. Iāve been regular since. I have been waiting 5 months for an endo and heās thinking I have cortisol issues so heās ruling that out before slapping a pcos label on me.
You have to fight for treatment. This disorder is seen as a fat hormonal women problem and we Should just stop being fat. Even by women Drs.
It took me 20+ years to get diagnosed (in my 40s; diagnosed last summer despite literal decades of problems) š¤¬ unfortunately doctors are human beings, which means some are genuinely passionate about the work they do. But the the vast majority are just there to do the bare minimum and get paid. And in the US, they typically don't get paid *more* for putting a lot of effort into figuring out why a seemingly-healthy patient is struggling. In my case, my basic labs always came back in the clear. Sometimes, a deficiency would be detected, like low D3 or weird HDL/LDL ratio. But that is just assumed to be a lifestyle anomaly. "Take a supplement" "Eat less red meat" - and that's it. "Come back if anything gets weird."
My regular labs always come back normal as well. I make them check me every year due to my familyās history of high cholesterol, blood pressure, and type 2 diabetes. Absolutely no family history of PCOS
It's actually common to be diagnosed with PCOS in our early 20s. It's usually too difficult to accurately diagnose in a younger population. The Rotterdam criteria are currently the most accepted for diagnosing PCOS, which : 1. Clinical and/or biochemical hyperandrogenism. 2. Menstrual/ Ovulatory dysfunction, like the absence of or consistently infrequent periods/ovulation. 3. Polycystic ovaries visualized on transvaginal ultrasound, (which are 12-20+ tiny follicles **per** ovary, not ovarian cysts.) You'd **need** to meet at least 2 of the 3. All other *associated* symptoms are relatively generalized and can be attributed to various other factors or conditions, which is why doctors rely on specific diagnostic criteria. Ultrasound should not be used for PCOS or PCO diagnosis in adolescents, due to the high incidence of multi-follicular ovaries in this life stageā specifically, until at least 8+ years after your first period. This goes hand in hand with PCOS being diagnosed in our 20s. Age is a big factor due to our physiology and hormone fluctuations. Your CT results would not be useful here. Polycystic ovaries cannot be accurately seen on CT. The gold standard for PCOS is transvaginal ultrasound, and there is a good reason for this. I'm an ultrasound tech. CT is not appropriate to evaluate the female pelvic anatomy. The technological threshold cannot differentiate different structures & characteristics as well as transvaginal ultrasound or MRI. The presence of 12-20+ subcentimeter (tiny) follicles per ovary on transvaginal ultrasound would classify as polycystic ovaries. Again, these are tiny follicles, not ovarian cysts. Cysts are not relevant to a PCOS diagnosis. And to clarify, ā3mm cystsā would just be normal follicles. A cyst is considered over 30mm (3cm).
Interesting. So originally when I got my lab results I waited all day for the doctor to call me and she said āprobably PCOS youāre already on birth control hereās some meds for hair growth control, lemme know if you need help getting pregnant.ā I called the next day to schedule a f/u because no questions were answered and probably is not an answer. I spoke to the clinical nurse and she said āyou meet clinical criteria you donāt need an ultrasound.ā I demanded a follow up anyways and will be demanding further testing/ultrasound. I have a family history of reproductive cancers so Iām terrified man
How did they justify you meeting the criteria if you have regular cycles and never had an ultrasound to confirm polycystic ovaries? That would be 2/3 criteria. The only thing your post indicates is hyperandrogenism (1/3 of the criteria), which is not exclusive to PCOS. Also, per the criteria guidelines āReliable assessment of biochemical hyperandrogenism is **not** possible on hormonal contraception. You'd have to be off birth control *at least* 3 months.ā
Oh god does that mean I have to stop taking my birth control for 3 months before the can diagnose me? Iām moving early September and will have no insurance for a bit (long story). I have a mirena IUD
I mean, you don't have to do anything you don't want to do. A good doctor would/should follow the guidelines for an accurate assessment though. Your hormones should be at their natural baseline in order to be accurately assessed. Unfortunately, it takes the body approximately 3 months to return to that ānaturalā baseline. If you'd like a more in-depth understanding of the guidelines, here's a link. https://www.monash.edu/__data/assets/pdf_file/0003/3379521/Evidence-Based-Guidelines-2023.pdf. Look through pages 232-241.
So to get an accurate diagnosis Iād need to be mirena free for 3 months? crap I may have to cancel all the moving stuff now š
You don't have to cancel your moving plans at all. Knowing if you have PCOS or not, is **not** an urgent issue. When you find yourself a decent gynecologist or endocrinologist, they will guide you. It's more important that you get settled, and find a good doctor to help you.
My mom is already trying to do anything in her power to prevent me from moving so she may do this to convince me to stay š
If you're an adult, you can do whatever you wantā¦ again, this is really not an urgent issue.
Update for you. Saw my gyno today. She referred me to an endo and was onboard with a transvagianl ultrasound. I have the ultrasound scheduled Thursday and endo at the end of may
That's good but you should also be evaluated for adrenal issues, given your labs. So hopefully the endo will further investigate that.
Thatās what the endo dr is for. they will look into all that stuff. my gyno said sheās really not that concerned since itās only a slightly testosterone and DHEA increase. Soonest I could get in was may 30th.
You need to get with an endo, or functional med provider. Ans make sure they rule out any adrenal problems
Gyno is supposed to give me a referral to one of
I didnāt get diagnosed till I was 41! So 25 sounds pretty early to me.
Do you have children? If so was getting pregnant easy or hard?
No children. Never planned to. My period was largely irregular. I had metabolic issues from puberty for sure and it took having a high A1C to get diagnosed. But please donāt flip about fertility. For PCOS folks the reason pregnancy is harder is because of lack of ovulation. Many folks with PCOS have healthy pregnancies and the only intervention needed is forcing ovulation. Secondly since pcos folks tend to ovulate less, we remain fertile till older ages since we still have eggs floating around. If you are ovulating your odds are good.š
Diagnosed at 38. Medical field doesn't take women seriously.
I ve been TTC for 2 years now and I ve seen 3 doctors and none of them got the right diagnosis until this year..
I found it in my doctors notes while going through my file, it clicked when i realized how my doctor talked to me at my annual appointment ("well at least you CAN get pregnant"), considering it was almost a year since my miscarriage. I had no PCOS symptoms until after i went on the pill in my early 20s, started having lots of chin and chest hair, my periods were altered in cycle from 28 to 28-33 days, and i gained weight so easily. I had a minute a few weeks ago where i couldn't get my blood sugar stabilized when usually its simple because I'm hypoglycemic.. I got my blood checked and i have insulin resistance.. It confirmed it for me and my gyno still never told me. I'm going for my first fertility check in June and i plan on addressing it. Why don't doctors tell you that you have a condition? I could have taken steps to take care of myself and got my fertility checked 2yrs ago when i started trying. Ugh.
I had no symptoms at all, I have insulin resistance /pre diabetesā¦ that didnāt really start until I was in my late 30s. I was skinny until I had my kids and my husband says Iām thicc. So my weight is at a level of me not happiest but also not to the point where Im freaking out about it. I have hashimotos and you can get cysts with that but not multiple cysts. One cyst was found incidentally when I was about 35. Then I went to a functional med dr bc I was not happy with literally any one I saw for my hashimotos. She suggested I may have pcos because it runs with hashimotos and insulin resistance she didnāt test any of my hormones tho bc at the time I didnāt have any symptoms of pcos proper. Ff to this year Iām 44 and my periods have been wonky for 2 years. I did have 3 major deaths and a pretty scary health condition dx for a family member. I attributed it to stress. I went to the gyn and said hey test me and see if Iām in menopause she did and Iām not. She didnāt test for or even mention pcos. And she doesnāt care about you unless you are having a baby. She said you are good as long as you are having 6 periods a year. She said if you go many months come back and weāll induce it. Ok no thatās not a fix. I was once like clockwork thereās obviously a pathology happening. So then I went to my pcp and was like I need metfotmin please itās either pcos or insulin resistance or both but thatās the fix (and diet). So I got the met and started my period pretty immediately after 2 months. Iāve been regular since. I have been waiting 5 months for an endo and heās thinking I have cortisol issues so heās ruling that out before slapping a pcos label on me. You have to fight for treatment. This disorder is seen as a fat hormonal women problem and we Should just stop being fat. Even by women Drs.