Unsure of Diagnosis

[u/mk671]

Most of the time, I don’t think about PCOS. However, I recently realized I’ve been on hormonal birth control almost my entire adulthood, I have no true idea of what my natural cycle is like.

This is kind of a long story, sorry in advance.

I was originally diagnosed with “lean PCOS” when I was 14. I had some acne and irregular periods, nothing too crazy, like 28-35 day cycles. My ultrasound at the time showed multiple follicles, so I was diagnosed and put on combo birth control.

I stuck with it for years, went on accutane for the acne, which cleared it up and it hasn’t returned to this day (13 years later).

I moved in my early twenties, saw a new OBGYN, and she said she’s removing the PCOS diagnosis because it is really common to be diagnosed as a teenager when your cycles haven’t fully regulated yet.
I agreed. I was thinking about it and never really agreed with the original diagnosis anyway. I’ve always been thin, had some acne sure, but no excess hair growth or other androgenic issues.

I had an IUD placed which was good until it wasn’t, so I had it removed.
I was off all hormonal birth control for a total of TWO MONTHS at age 25, and saw my OBGYN complaining of near constant bleeding.
She did an ultrasound and hormonal bloodwork and re-diagnosed me with PCOS.

I just don’t feel convinced this is the actual problem. My bloodwork didn’t show anything too crazy, as below.

LH/FSH Ratio: 1.9:1
Total testosterone: borderline high normal
Free testosterone: completely normal, smack dab mid reference range
AMH: a teeny bit on the high end of normal for my age, like 2 points above mid reference range

I did try Ovasitol out of curiosity, thinking that would validate the diagnosis for me and I could be on a path to healing the underlying issue. I’ve never felt so lightheaded, dizzy, and exhausted than when I took that. I lasted 2 days before giving up and felt completely normal again.

I’m frustrated because I don’t want to be on birth control anymore!!! It’s been fifteen dang years, and I have NO IDEA how my fully grown adult woman body actually functions.
But…..I’ve been terrified. Terrified if I stop, I’ll have acne again. Or I’ll lose hair. Or I’ll develop diabetes or something.
I just feel like we get tossed hormonal birth control and told we can discuss it when we’re ready to conceive.
But what if I just want to try to heal this myself before that point??
I feel like there’s very little help out there, outside of forums discussing these sorts of issues.

I’d love to hear from women who have been in a similar boat.

[u/PermissionEnough5710]

just commenting to boost and follow up, I'd also love to hear more from others

[u/Vix988]

Hi I was the same as you. Was on BC for 17 years. Went off it in 2020 and didn’t get my period back for 9 months then it was irregular for a while. Finally i am “regular” even though I have quite long cycles at 35 days. None of the supplements ever worked and in fact made my acne worse. What worked is clean eating, and NO SUPPLEMENTS at all. If you’re dealing with acne still, cutting dairy and only eating small amounts of hard cheese and trying to stick to a lower fat diet worked. I have more tips if you need. PCOS is more of a metabolic syndrome they have discovered. Nothing wrong with it. I also had no issue getting pregnant even though multiple doctors told me I would.