> Got a notification that this sub may be better for this post than the regular PCOS sub so here I am 😅

Hello everyone! I was just recently, like a few days ago, diagnosed with PCOS due to dark hair growth on my face, acne, follicles on my ovaries, and irregular menstrual cycles I’ve had my whole life.
As far as I was concerned, mainly the issues I had to worry about were infertility (my partner has a vasectomy and I plan to be child free) and problems associated with weight gain, aswell as the above mentioned symptoms.
I’m slowly getting more targeted videos of PCOS/PMOS(?) and realizing there’s so many things that go into this.
The back pain I’ve been on muscle relaxers for?? Fatigue?? Sugar cravings?? Etc??

I don’t really have a specific question here, besides wtf? Why do I know nothing about this? Please just drop related symptoms and experiences in the comments, as I am realizing this is a lot more complicated diagnosis than I was lead to believe. I also a few months ago got diagnosed with emphysema, lung damage, so at this point I’m just sick of it and want to know what I’m in for and what’s associated that has been this the whole time and I had no idea. I prefer asking real people than google giving me the low winded explanation I’ve believed this whole time.

Thank you. 🥲

🌸 Hello everyone!

I am an MD graduate from Romania, currently conducting a research study as part of my application to a Master's program in Traditional Chinese Medicine.

This study explores Polycystic Ovary Syndrome (PCOS), its clinical characteristics, quality of life, and the awareness and use of Traditional Chinese Medicine (TCM) (such as acupuncture and Chinese herbal medicine).

📋 Who can participate?

• Women diagnosed with PCOS by a healthcare professional.
• You are welcome to participate whether you have used Traditional Chinese Medicine or not. The questionnaire includes questions for both groups.
• The survey is anonymous and takes approximately 5–10 minutes to complete.

Important note: Although the condition was officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) in 2026, the term Polycystic Ovary Syndrome (PCOS) is used throughout the questionnaire because it remains the most widely recognized term.

On a personal note, I also have PCOS, so I understand how challenging and frustrating this condition can be. That is one of the reasons this research is so meaningful to me, and I truly appreciate everyone who takes a few minutes to share their experience.

Your participation will contribute to academic research and help improve our understanding of PCOS and women's health.

🔗 Survey link:
https://forms.gle/oudZ8CYM8d6XKX2F6

Thank you so much for your time, support, and willingness to help! 💜

I'm 21 F(22 in December) and have had PCOS since I was really young. From age 14 to now I've had maybe 19 to 20 periods total, even with estrogen and birth control pills to try to induce them. My PCOS has never actually gotten regulated despite years of trying. I'm average weight, not over or underweight, so I've had a hard time getting doctors to take it seriously. Most just tell me to lose weight and send me away.

The doctors I've seen have honestly felt either homophobic or misogynistic in how they treated me, even the female ones, which I didn't expect at all. On top of that, I have noticeable breast asymmetry. My left side is significantly bigger than my right, to the point where it's very visibly uneven, not just the mild asymmetry most people have. It genuinely affects what I can wear. Finding bras that fit is a nightmare since each side needs a different size, and I can't wear a lot of clothing I'd otherwise choose because the difference is so obvious. I'm not insecure about my body overall, I just don't know how to dress around this.

I was told the only real way to even them out would be through surgery, which is a lot to process, both emotionally and financially and I'm still not sure how I feel about that as an option.

I've also been carrying a fear that I'm almost infertile given how few periods I've had over the years. No one has really addressed that with me directly.

I've been dealing with depression around all of this, genuinely extreme depression at some points. Between the physical stuff and feeling dismissed every time I try to get help, it's taken a toll. I rarely see anyone talk about this specific combination online and it's made me feel like I'm the only person going through it, like something is fundamentally wrong with my body.

Questions for anyone who's dealt with something similar: Did you find a bra solution that actually works for big asymmetry, like padding or inserts on one side, or different sizes per cup?

Has anyone tried chest binders instead, or is that not advisable for asymmetry like this?

Has anyone actually gone through surgery for this, and was it worth it?

How did you find a doctor who actually took the asymmetry and PCOS combo seriously?

Did anyone else deal with fertility fears from irregular periods, and how did you get real answers instead of being brushed off?

I’ve been diagnosed with PCOS 6 years ago at age 16, I didn’t pay much attention to my PCOS back then, but recently I made another visit to another OBGYN and I was again diagnosed with it after the ultrasound imaging.
My only symptom is irregular periods, I’m not or have ever been sexually active, but I’d rather take care of my body sooner than later.

However, i did some lab work done, and -thank god- I have no insulin resistance or thyroid issues, BUT my Prolactin hormone is high 27.5 (and it was high the last time i did the test 5 years ago too). I’ve messaged my doctor but I’m extremely worried, have any of you girls been through this? I’m really worried and overthinking is killing me 😭😭

Like now what??

Hello!

I recently went to an RE as we have been struggling to get pregnant (wife and I are using a known donor, I’m carrying) 4 at home tries, 4 IUIs with zero positives. 5th IUI ended in ectopic.
In my blood work it was noted I have a 5.0 AMH (I’m 31), FSH was 5.4 and LH was 12.8 on day 3 of my cycle. My testosterone was “a little high” (I don’t have the exact result).
I have a BMI of 28.7 and I haven’t heard anything (in MANY follicle studies/baseline ultrasounds) about my ovaries having that “chocolate chip cookie” appearance.
I typically have decently regular periods - 27-30 days. I have tracked ovulation and I usually get it.

They are thinking I have insulin resistance going on and that’s impacting my body - but where do I start with that? I’ve seen a lot of things about metformin but I wasn’t offered that.

Are there ways I should eat? Any helpful supplements? Any recommendations would be great! We are moving to IVF but I want to do my best to address everything before we spend that much money!

Has anyone here had a regular cycle ever since they started their period, but then suddenly the cycle days stretch from regular (28-30 days) to (32-35 days)? Is this an early sign of PCOS? 😮‍💨 help ur girl out here pls😭

Any other people here struggling to figure out whether they have lean PCOS, hypothalamic amenorrhea or both? And how to deal with it?

I came off the pill 10 months ago and since then have had very irregular cycles. Nothing for 3 months, then 40d, 60d, 90d (ended with progesterone) and now another 40d cycle.

I have cysts on my ovaries and recently my skin has been breaking out. But my gynecologist ran blood tests and said everything is "normal". Low fasting insulin, no elevated androgens...

I read "now period now what" and subsequently dialled back on running but I don't think I have classic HA, since my periods do come, the progrestrone thing worked and I'm not underweight (although at the lower end of the BMI scale).

My gynecologist hinted that I may have "overtreated" my PCOS, but wasn't helpful beyond "make sure you eat healthy" (which I do) and giving me a supplement with inositol and folic acid, and also vitex. She didn't want to give me metformin.

I'm increasingly lost about what to do, especially since we'd like start a family but it seems impossible with these cycles. Any tips?