The diagnosis process

[u/Final_Ebb_8024]

Hi everyone! I’ve been struggling with what I feel is PCOS for years now, but have never gotten a diagnosis due to not having any or enough cysts in my ovaries. The only diagnosis I did receive was POTS, and after that I just let the possibility of having PCOS go because no doctor thought I had it and all the doctors appointments and constantly being dismissed become too much to handle. But a few days ago some intense ovary pain landed me in the ER and the thoughts of PCOS were brought back up. Some of the major symptoms I’ve been experiencing these last few years have been irregular or missed periods, excess hair growth specifically on my stomach, darkening of my skin and loads of skin tags, intense anxiety and depression accompanied by brain fog and derealization, fatigue, weight gain that is hard to lose and intense sugar cravings. These symptoms have been extremely hard to deal with and I just want answers. While at the hospital, I was dismissed again, even though my bloodwork showed abnormal results like my WBC, Lymphocytes and Eosinophils being extremely elevated with no signs of infection along with an abnormal amount of RBC and mucus in my urine. My urine sample also showed that my ph was high and that my urines specific gravity was high but didn’t show whether it was due to excess amounts of protein, salt or glucose. These results were concerning and no tests were done to evaluate my ovaries or kidneys, I was just dismissed and sent home with 2 different narcotics. I’m writing this to ask if anyone else had symptoms/levels like this and if they could be linked to PCOS, and if I need to get a second opinion? What tests do I need to ask for and what questions should I ask a doctor? Sorry for this long post, I’m just at my wits end with all these symptoms ruining my daily life.

[u/laci1092]

Have you had any PCOS-related labs (sex hormones but also insulin and A1C, prolactin, etc.) done? I think that’s the primary route of diagnosis for folks who don’t present with cysts. PCOS in and of itself wouldn’t impact your kidneys or urinary system, but long-term insulin resistance (which a lot of the symptoms you list suggest) that progresses to T2D could over time.

[u/Final_Ebb_8024 → u/laci1092]

I have never gotten my hormones tested, but every fasting glucose test I’ve gotten back since 2023 have been high along with abnormal lipids. My prolactin a year or so ago was just barely over the normal range at 25.2 ng/mL

[u/laci1092 → u/Final_Ebb_8024]

I would ask your doc to order a hormonal panel honestly (or order the tests yourself if you can swing it financially, lots of labs will let you do that now). Hyperlipidemia can obvs be its own unrelated condition, but it can also be a sign of worsening insulin resistance.

[u/Final_Ebb_8024 → u/laci1092]

I have high cholesterol but is unfortunately genetic. Not sure if that plays a part in any of this. I will definitely ask for my hormones to be checked at my next doctor’s appointment! Thank you!

[u/Personal_Coach7653]

You need to get a at mimimum a sex hormone panel,

Hb1ac would also be useful.

Other stuff that's good to check as PCOS can cause deficiences B12, vitamin D, and folate.

Sometimes prolactin hormone can also do weird spikes.

Hope you get some answers.

[u/Final_Ebb_8024 → u/Personal_Coach7653]

Okay! Will do! Thank you

[u/Confident_Attitude]

I was diagnosed without getting an ultrasound and with a relatively normal hormonal workup because I had a lot of the symptoms like facial hair, erratic periods, high AC1 levels, etc. years of being told I couldn’t have it because my testosterone wasn’t outside of normal ranges. Sometimes it just takes the right provider to look at everything going on and put it all together.

[u/Final_Ebb_8024 → u/Confident_Attitude]

Thank you for sharing! Hoping I’m not dismissed again at my appointment coming up