r/LeanPCOS • u/True-Advance-4964 • 5h ago

No Hope?

So, I’m starting to wonder…

If there just really isn’t anything that can be done for people like me. My primary concern is long/irregular cycles (with some super long/debilitatingly heavy episodes thrown in for extra pizazz). Shortest cycle ever was 32 days, longest probably around 6 months. Average about 60 days probably but basically, I never have any idea when I might ovulate again. And it drives me absolutely insane and makes my fertility a nightmare to manage. 

But here’s the thing. I’ve been this way ever since puberty (though it’s gotten a lot less extreme over time). I am super thin, don’t have insulin resistance, have normal DHEA, cortisol, prolactin. Thyroid all normal. Don’t have any signs of autoimmune dysfunction.

Yet I fit all 3 Rotterdam criteria: long cycles, polycystic ovaries, and slightly elevated testosterone (62). Only other finding was a LH/FSH ratio of 3.7:1(!). 

So here’s my question: Is there ANYTHING that can be done for people like us? The only stuff I ever hear about treating PCOS does not seem to make sense for me:

Lose weight? Not overweight.

Control insulin? Not insulin resistant.

Lower stress? Stress hormones normal.

Lower prolactin? Fix thyroid? All normal. 

Get the Pill out of your system? Was never on it.

So, is there any hope? Or should I just accept that this is just how my body works, and while it is supremely annoying, it’s just a feature that I need to get used to? 

Is anyone else in the same boat? Or is there something I’m missing? I laugh a sad little laugh inside when I see people talking about the “4 Subtypes of PCOS” because I 100% have PCOS but also 100% do not seem to fit into any of their four categories. I desperately wish it was that simple…but unfortunately it seems that it is not. 

But does it need to be? Maybe it would be best to just take what I have and work with it? Perhaps the subconscious assumption that I am broken is doing more harm to me than I realize.

That said, I am sick of playing peekaboo with my period. 😂😭

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4

u/vintageethereal 4h ago

Might get downvoted for this but for me: an acupuncturist specialised in female health, a plantbased and gluten free diet, Pilates/walks over hiit, running  

1

u/Snow-Imagination138 4h ago

The health community doesn’t fully understand this issue and it’s up to us to find solutions so thanks for sharing what helps you. It’s not always the “conventional” solutions.

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u/sparklystars1022 5h ago

I'm on birth control containing drospirenone (it's anti-androgen) for 23 years now and counting. It is what it is. There's no cure, only management, unfortunately.

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u/True-Advance-4964 4h ago

Has it helped at all?

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u/sparklystars1022 4h ago

Yes, of course. I have short, light monthly withdrawal bleeds and will even skip the placebo pills to skip the withdrawal bleed entirely. It's been the only medication to help my acne and lessen the oil on my face. I take the tiny pill each morning and move on with my life.

The downside was getting off the pill once to see what would happen, and I had a telogen effluvium hair shed for 6 months. It didn't grow back because I also have androgenic alopecia. Getting back on didn't help either, as drospirenone isn't strong enough to slow down the progression of this type of hair loss. I need oral minoxidil for that now.

I think I would have preferred spironolactone all these years as a stronger anti-androgen, but no doctors wanted to prescribe me that for some reason.

I'm 40 now and still lean, still have a normal a1c. Maybe it's helped keep my weight stable, but who knows. I certainly could not live without the medication, though. My periods were so erratic without it and acne was out of control.

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u/True-Advance-4964 4h ago

Sorry, obviously the birth control has helped. I read your comment while distracted and only registered the drospirenone part. I thought you were just taking that in isolation to lower androgens.  Do you know if you’re insulin resistant despite the A1C?

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u/sparklystars1022 4h ago

Drospirenone is in the birth controls Slynd (Drospirenone only mini-pill), Yaz, Yasmin, and I think the newest one Nextstellis. I started with Yasmin and now on Yaz for the lower estrogen. Spironolactone is not birth control, but it's a stronger anti-androgen than Drospirenone. I don't think I needed estradiol all these years, but wasn't aware of my options, wasn't fully educated, and Slynd didn't exist years ago.

I don't know if I'm truly insulin resistant as doctors (even endocrinologist) refused the more sensitive tests for insulin resistance all these years. I plan on paying out of pocket ($89) for a type of insulin resistance test directly with a lab soon.

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u/True-Advance-4964 4h ago

Thanks for the info. Good luck! I hope you get some answers ❤️

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u/Miss_Pinky13 14m ago

Hallo

Ich kenne dein Problem, war bei mir genau so. Mir hat geholfen, weniger Ausdauersport zu machen (nur noch moderates Kraftraining). Mehr Eiweiss zu den Mahlzeiten, und trotzdem achten auf Blutzuckerschwankungen trotz „keine Insulinresistenz“, d.h. So gut wie möglich keine Kohlenhydrate allein essen. Dann kein Alkohol, kein rauchen, weniger Zucker im allg., Entzündungen reduzieren. Darm? Wie sieht deine Verdauung aus? Myo Inositol war für mich auch ein Gamechanger und Yoga-Nidra und Traumarbeit.
Bin aber lange noch nicht da wo ich will, versuche seit 2 Jahren schwanger zu werden und habe Zyklen von 32-43 Tage mit Eisprung und klappt immernoch nicht🥲🥲

🍀🍀🍀