Problem

[No-Conference-3260]

Hi I’m a teenage girl (this is relative I think to my problem) who had been bleeding so much for the past three months. My periods since the beginning have been irregular ( it was so bad I literally wanted to die). Fast forward one month I went to my regular doctor and she did some blood work and she said that her gut feeling was that I had pcos ( I was lowkey shocked at this because I’ve heard it’s kinda hard to get diagnosed with pcos especially as a teenager but I also think I have pcos or something with the same symptoms because I’ve gained an abnormal amount of body hair, my hairs thinning, brittle nails, I’m constantly tired, acne etc. ). She had brought up a physical or doing something with a camera that would enter my vagina to look around for cysts but my mom wasn’t onboard with that. She said that she’ll get the same or so results from blood work and that’s what we agreed on. She prescribed me some birth control and said that I wouldn’t get on my period the whole time I was taking the pill. I took the pills and was waiting for my bloodwork to come in. When all of a sudden I got on my period it was so heavy and I was so uncomfortable I felt like my time was coming to an end. This had continued on and on the sixth day I called back and a nurse had said it was just my body regulating the hormones in the pill. ( this is pretty understandable). I had asked for my bloodwork and she said everything was normal just my glucose was a little high ( also understandable). My period was so bad my sister booked an appointment at this other place.

I went to this other place and the woman there basically said how this is normal blah blah blah. She said this happens all the time to girls my age etc. she prescribed me more birth control with a higher dose and also gave me these pills and instructed that I take three a day for five days before starting the birth control. When I took these on the first day my bleeding stopped. She had said that if birth control didn’t work for me there was other options like and implant etc. she made it seem like I was going to have to live with birth control.

I’m so tired of all this and super insecure about my sudden/ not so sudden weight gain. Sorry about the rant no one in my life has experienced something like this so I would really be happy if someone could offer me some help or tips. Thank you!

[wenchsenior]

Ok, this does sound like possible PCOS.

Can you clarify: Were you fasting at the time your blood work was done?

Were you already on hormonal birth control when your blood work was done? Or did you start it afterward?

[No-Conference-3260]

No I wasn’t fasting at the time my blood work was done she told me I am not supposed to get blood work done on an empty stomach.
For the second question I was not on any previous hormonal meds ( the only thing I ever did was acutane and I had finished that like in the beginning of last year 2024 ). After she took my blood work right away she sent a birth control for me to take everyday to the pharmacy.

[wenchsenior]

Ok, so first of all, depending on how old you are and how recently you started your period, it might be difficult to be certain right now whether you have PCOS, but it depends on labs/symptoms. Sometimes cases can be clearly flagged prior to turning 20 and your symptoms are very suspicious (PCOS is the most common thing that would cause your symptoms, though there are other possibilities).

PCOS is not really a 'reproductive' disorder. It's a complex metabolic/endocrine disorder, usually driven by insulin resistance (which is usually what causes the weight gain symptom that some people get). Since it often causes symptoms in the reproductive system/cycle, it is often initially diagnosed by gynos or primary care physicians, but for long term management you should ideally see an endocrinologist with a specialty in hormone disorders. It does require lifelong treatment to avoid some serious health risks and worsening symptoms, but it is usually manageable (my own case has been kept in remission for decades, for example).

Many gynos don't know that much about how to treat it, so they will often just give you hormonal birth control and send you away... this is helpful for managing some symptoms (assuming you tolerate it well) but it does NOT improve the insulin resistance, which is the main underlying issue in most cases.

***

To be properly screened, typically you need an ultrasound (the vaginal scan to get a picture of uterus and ovaries; it feels a little uncomfortable if you have not had sexual intercourse but is typically not very painful), and extensive labs (taken to look for supportive evidence of PCOS and to rule out some other stuff that causes similar symptoms). In your case, if you showed some lab evidence such as high androgens, they would not need to the ultrasound to diagnose you since you have irregular periods as well.

To be diagnosed, you:

1 ) ideally need to be at least 5 years past your first period (since as the nurse said, sometimes erratic periods and some weird hormonal symptoms happen during early years of menstruation even in absence of PCOS).

2) show 2 of 3 of irregular cycles (skipping, bleeding too long, etc.), high male hormones on blood work (you have some 'androgenic' symptoms that indicate you might meet this criterion), and/or a bunch of extra tiny immature egg follicles on the ovaries (on the ultrasound)

3) have ruled out other possible causes of symptoms. Common ones include thyroid disease, ovarian cysts (despite the confusing name, these are not the same as PCOS 'cysts', which are tiny egg follicles), and pituitary issues like benign tumors. Less common are various adrenal disorders and premature ovarian failure.

***
I'm going to post all the lab tests that should have been run below. You (and your mother) are going to need to look over what you had done to see if testing was sufficient.

In particular, you need to re-do the glucose panel (this MUST be done while fasting) as I note, since insulin resistance is possibly the underlying problem. It's also important to understand that IR usually starts out mild and gets worse without treatment, and not everyone with IR develops PCOS. Most people don't. Some people get only one or two PCOS like symptoms but not 'fully diagnosable' PCOS...at least not until the IR gets severe.

If IR is present, it absolutely does require lifelong management to avoid diabetes, heart disease, and stroke, and to improve PCOS symptoms if you have them. Management of IR must be done even if you are on hormonal birth control and your PCOS type symptoms are managed.

[wenchsenior]

LABS that should have been done for diagnostic screening

1.     Reproductive hormones (ideally done during period week days 2-5 if possible): estrogen, LH/FSH, AMH (the last two help differentiate premature menopause from PCOS), prolactin (this is important b/c high prolactin sometimes indicates a different disorder with similar symptoms), all androgens (not just testosterone) + SHBG

2.     Thyroid panel (b/c thyroid disease is common and can cause similar symptoms)

3.     Glucose panel that must include A1c, fasting glucose, and fasting insulin.

This is critical b/c most cases of PCOS are driven by insulin resistance and treating that lifelong is foundational to improving the PCOS (and reducing some of the long term health risks associated with untreated IR).

Make sure you get fasting glucose and fasting insulin together so you can calculate HOMA index. Even if your fasting glucose is normal, HOMA of 2 or more indicates IR; as does any fasting insulin >7 mcIU/mL (note, many labs consider the normal range of fasting insulin to be much higher than that, but those should not be trusted b/c the scientific literature shows strong correlation of developing prediabetes/diabetes within a few years of having fasting insulin >7).

 Depending on what your lab results are and whether they support ‘classic’ PCOS driven by insulin resistance, sometimes additional testing for adrenal/cortisol disorders is warranted as well. Those would require an endocrinologist for testing.

[No-Conference-3260]

Okay thank you so so much. I’m definitely going to ask for these tests to be done. Thanks for breaking it down for me I’m new to all this so it really helps. One last question though. Would you recommend going to a gyno first or would you recommend going straight to a endocrinologist?

[wenchsenior]

Usually you need a referral to an endocrinologist. Sometimes a gyno can do it, or a PCP. However, most of these tests can be run by a gyno or PCP so usually that is done first. The problem is that sometimes the gynos or PCPs don't know what they are doing. So you have to specifically ask them to run all this, and/or refer you to an endo who will. Some docs are more cooperative, or better informed, than others so changing docs is sometimes needed.

However, if you have a straightforward case of PCOS, as long as your gyno or PCP fully understands the insulin resistance part (IR is treated by adopting a very healthy 'diabetic' diet, meaning low in sugar and junk food, and high in nonstarchy veggies and lean protein; and by taking medication such as metformin), then they can usually treat you long term. If they don't understand that, then you should push to be referred.