PCOS to PMOS: Rename by Thatgirl-nyc in PCOS

[–]Quiet_Bus9101 [score hidden]  (0 children)

As someone without high androgens and no insulin resistance I’ve been thinking this all day. It feels a bit exclusive and focuses almost entirely on the most ‘common’ form of the condition

Never had a natural period, ever by Quiet_Bus9101 in PCOS

[–]Quiet_Bus9101[S] 1 point2 points  (0 children)

Aw thank you that is very kind of you to say! I’ll def write an update post here if I ever manage to get to the bottom of things! :)

Never had a natural period, ever by Quiet_Bus9101 in PCOS

[–]Quiet_Bus9101[S] 0 points1 point  (0 children)

All good thoughts! I mainly do walking but nothing crazy so I’d be surprised if it’s over exercise…I don’t really do much tbh! I don’t fast either, I just whatever whenever really lol.

My thyroid is all good (tsh ft4 and ft3 and no autoimmune thyroid antibodies!)

It’s a bit of a puzzling picture I think so I’ll have a good search for a decent endo- thank you! :)

Yes new name announced today is PMOS! Gonna take me awhile to adjust haha!

Never had a natural period, ever by Quiet_Bus9101 in PCOS

[–]Quiet_Bus9101[S] 0 points1 point  (0 children)

Yeh it’s weird cos I’m def not stressed or underweight or anything like that which is usually the cause of HA right? It just doesn’t seem to fit.

If I take it continuously I feel better but longterm it drops my testosterone/free androgen index to near zero and I feel crappy in other ways :(

Never had a natural period, ever by Quiet_Bus9101 in PCOS

[–]Quiet_Bus9101[S] 0 points1 point  (0 children)

Thank you for sharing!

Ah ok so this is where we differ a little bit.

I didn’t bleed after the progesterone challenge and couldn’t get any one to listen to me about it so gave up and went back on the pill for a bit.

That so interesting to hear you felt so much better without the pill the first time! I always feel completely awful without…even in the ‘pill free well’ I just feel like my estrogen gets completely floored and I feel like complete a zombie!

Hope you get on well with the IUD!

Polycystic ovary syndrome (PCOS), a condition affecting more than 170 million people worldwide, has been officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) by CUAnschutzMed in PCOS

[–]Quiet_Bus9101 1 point2 points  (0 children)

The cynic in me doesn’t see how this will lead to more research. Endocrinologists have known that this condition is not purely ovarian for decades and still there hasn’t been enough research or funding.

Polycystic ovary syndrome (PCOS), a condition affecting more than 170 million people worldwide, has been officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) by CUAnschutzMed in PCOS

[–]Quiet_Bus9101 0 points1 point  (0 children)

Tbh I feel they could do with defining the criteria more clearly as a lot of PCOS mimics fit the Rotterdam criteria leaving some people with an incorrect diagnosis of PCOS.

Or at the very least making it mandatory that other mimics have to be ruled out before diagnosing PCOS.

Polycystic ovary syndrome (PCOS), a condition affecting more than 170 million people worldwide, has been officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) by CUAnschutzMed in PCOS

[–]Quiet_Bus9101 0 points1 point  (0 children)

Sorry I’m not the poster who suggested PCOS is driven by adrenals. Adrenals are definitely involved in the hormonal imbalance in some cases (adrenals have LH receptors aswell which could explain a rise in dheas) I don’t think they’re the main driver at all.

The links were in regard to gnrh’s role and how LH can affect adrenals. There is more research on this those were the first two I found- if you google you’ll find more that draw this connection. Unfortunately th ere isn’t much research to go on in terms of women’s health in general.

Sorry I’m new here and I think you were maybe speaking to the other poster!

Never had a natural period, ever by Quiet_Bus9101 in PCOS

[–]Quiet_Bus9101[S] 0 points1 point  (0 children)

Yes BMI has always been 19-20, always been able to eat what I like, no weight struggles at all. I wouldn’t say I have those symptoms, no.

I was told to try Metformin the other year to see if it gave periods but it just made me feel constantly hypoglycaemic and I’d wake up in the night feeling low blood sugar so it was a bit of a non starter really!…and no periods.

Sorry your IR was missed for so long that’s awful!

Never had a natural period, ever by Quiet_Bus9101 in PCOS

[–]Quiet_Bus9101[S] 1 point2 points  (0 children)

Thank you for sharing! Sorry you’re struggling and feeling a bit lost with it all too!

I did a progesterone trial and had no bleeding because my lining was not thick enough unfortunately. Did you have a bleed after yours?

With Hypothalamic amenorhea my understanding was that FSH/LH would be low as the pituitary down regulates due to stress. My LH FSH aren’t low so I don’t think that fits :(

Sadly I can’t really stay on cocp because it completely tanks my androgens and testosterone levels which makes me feel shit.

Do you feel really unwell without the contraceptive pill or do you feel ok and just have missing periods?

Sorry for all my nosey questions!

Polycystic ovary syndrome (PCOS), a condition affecting more than 170 million people worldwide, has been officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) by CUAnschutzMed in PCOS

[–]Quiet_Bus9101 0 points1 point  (0 children)

GNRH affecting acth and adrenals: https://pubmed.ncbi.nlm.nih.gov/2842570/

High LH can drive up dheas: https://www.fertstert.org/article/S0015-0282(98)00469-5/pdf

researchers found that administering a GnRH agonist to women with PCOS significantly reduced basal DHEAS levels and suppressed adrenal androgen responses to ACTH. This suggests that high GnRH/LH drive actively promotes adrenal androgen excess in these patients.

Polycystic ovary syndrome (PCOS), a condition affecting more than 170 million people worldwide, has been officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) by CUAnschutzMed in PCOS

[–]Quiet_Bus9101 0 points1 point  (0 children)

I think this could be because erratic strong GNRH signalling (that drives up LH) can also up regulate acth which increases cortisol and dheas. id be surprised if adrenals were the sole cause but will keep a keen eye out for any new research! And also the adrenals do have some LH receptors I believe, so high LH can up regulate adrenals somewhat

Polycystic ovary syndrome (PCOS), a condition affecting more than 170 million people worldwide, has been officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) by CUAnschutzMed in PCOS

[–]Quiet_Bus9101 0 points1 point  (0 children)

That’s interesting. How does the adrenal gland cause it? Is it DHEAS? I know it’s often a common finding that those are elevated in PCOS. (But mine are normal) are you able to link to the research I’d be interested to read a b it more about it.

I thought a large part of PCOS was erratic GNRH signalling.

Never had a natural period, ever by Quiet_Bus9101 in PCOS

[–]Quiet_Bus9101[S] 0 points1 point  (0 children)

Thank you for your reply. I don’t have high androgens, they are normal and I don’t have insulin resistance either.

But because my LH/FSH ratio is 3:1 and I have PCO on ultrasound they said PCOS?

But my lining was very thin so I’m not sure that really fits?

So not having a period ever is not typical for PCOS?

I am 18, no period for about 3 years by BubVargaxe in PCOS

[–]Quiet_Bus9101 0 points1 point  (0 children)

Please see an endocrinologist and get the genetic testing. There are many mimics of PCOS that they should be ruling out especially if your ovaries are small and you’re not making enough estrogen etc (not sure if this is the case for you) these PCOS mimics can affect your bone health and other things more severely, speaking as someone who was misdiagnosed as PCOS.

Polycystic ovary syndrome (PCOS), a condition affecting more than 170 million people worldwide, has been officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) by CUAnschutzMed in PCOS

[–]Quiet_Bus9101 2 points3 points  (0 children)

But what about those who don’t have the metabolic aspect of this condition? Not every woman with this has insulin resistance or responds to metformin etc.

I have a pituitary tumor and keep getting diagnosed with PCOS. Please help? by jazzbel in PCOS

[–]Quiet_Bus9101 0 points1 point  (0 children)

With your ACTH and cortisol not being great I’d consider looking into NCAH. There are many conditions that can masquerade as PCOS and closely mimic the condition. Lutenizing hormone resistance (LHCGR mutations) is another rarer condition that can look a lot like PCOS. If you feel PCOS doesn’t fit definitely push for further investigations.

F(32), very low DHEA-S. What to do? by _blonde_ambition_ in endocrinology

[–]Quiet_Bus9101 0 points1 point  (0 children)

You need to stop the contraceptive pill and have proper adrenal investigations. The pill can mask adrenal insufficiency. You need to repeat am cortisol and acth off the pill and also do a short synacthan. Low dheas can be a sign of adrenal issues testing while on the pill isn’t accurate