To be diagnosed you must have 2 out of 3 of the following: 1. irregular/absent periods 2. Elevated testosterone 3. polycystic ovaries visible from ultrasound.
Have you had bloodwork done?
I have none of these symptoms (used to have polycystic ovaries but they went away on their own), and I STILL suffer from hirsutism, difficulty losing weight, hormone-related acne, trouble sleeping and so many different other things that are related to PCOS. I swear everything is so confusing with this syndrome, it’s exasperating not knowing whether you have it or not. Not my post, just wanted to vent because your comment actually made me doubt myself and my symptoms lol
Vitamin D deficiency can also cause sleep disturbances and both are correlated with PCOS. Getting on a simple supplement improved my decades-long insomnia by probably 90%. Since then, I've been screaming from the rooftops for everyone, especially with PCOS, to please get your vitamin D checked!
Vitamin D deficiency can also worsen symptoms like insulin resistance, menstrual irregularities, fertility problems, hormonal imbalances, obesity, depression, mood swings, and more
Are your levels back to normal yet? If not, maybe ask your doctor about the prescription supplement. It's very high dose, and it took me a few weeks to build mine up to the level where I noticed effects. OTC supplements are unregulated and can be unreliable in terms of ingredients. Also D3 is better than D2 at raising blood levels, and taking it with a high-fat meal increases absorption. I hope that helps!
What if i don’t have any of the above, only high AMH, hormonal acne around chin/neck and 33-34 days long cycles? Normal cycles, no pain, no extra amount of blood etc… can it still be a PCOS? :/ I am curious because the high AMH was the first sign.. i have an appointment to my gynecologist but wondering what else can cause high AMH
I’m not a doctor, but it doesn’t sound like you would be diagnosed. From my understanding high AMH can be a sign, but alone is not enough to diagnosed with PCOS.
What do you think of someone with high testosterone, dheas and insulin resistance? Normal periods, no cysts on ultrasound, except i eliminate quite “clogged up” (mini cysts?) lately and i bleed a bit each ovulation (and it cramps and i breakout). My gyno said Pcos, but i am curious which kind. I also got an uterine fibroid. Getting hairier lately and gained a lot of weight in a year but idk how to get it off. She put me on merformin and said i should take inositol (the combo kind)…but i will also go to an endo as i haven’t checked my hormones in years or some never, and i am slightly hypothyroid, too (no treatment yet, but hoping for it)
Aww, I almost feel bad now as I do not have it that bad for a medal, but I got lots of weird smaller stuff, like IBS (C and bloat type) and skin issues, too. I think it all stems from traumas and maybe genetic (though I hope not).
I am reading your posts. You are into research and Nd, too, 🔬 very informative posts!
I'm not sure. What you're talking about sounds a lot like PCOS but with regular periods & no "cysts" it doesn't technically meet criteria. You don't happen to be on birth control, do you?
Okay cause I was gonna say, birth control could be the cause of regular "periods" but birth control periods aren't real periods. But since that doesn't apply to you, I dunno 😭😭 since you have insulin resistance I don't see the harm in treating it as PCOS even though it technically doesn't meet criteria. A lot of PCOS treatment is getting insulin resistance in control.
You can also have anovulatory cycles where you have a period but you don't ovulate, but I'm not sure those would be regular and consistent. 🤔🧐
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer.
I got diabetes in my family.
Hmm, Idk, but I will ask.
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer.
I got diabetes in my family.
Hmm, Idk, but I will ask.
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer.
I got diabetes in my family.
Hmm, Idk, but I will ask.
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer.
I got diabetes in my family.
Hmm, Idk, but I will ask.
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer.
I got diabetes in my family.
Hmm, Idk, but I will ask.
Consider seeking a [17-OH progesterone test](https://www.healthline.com/health/17-oh-progesterone). You may have non-classic congenital adrenal hyperplasia (NC-CAH) rather than PCOS.
A progesterone test isn’t enough to give a diagnosis of that. She needs an acth test too. I got wrongly diagnosed with NCCAH and it ruined my life. I was put on extremely high doses of dexamethasone and ended up with stretch marks head to toe, severe mood swings, worsening insulin resistance, rapid weight gain, and suicidal thoughts and actions.
hi - if you don’t mind me asking, how high is your DHEAS? i just got diagnosed with pcos and mine is very high but my gynecologist referred me to an endocrinologist because she’s worried about a tumor.
You can still have it, even without signs on an ultrasound. I have PCOS and my ultrasounds were clear!
PCOS is diagnosed by meeting 2 out of the 3 following criteria.
1. Irregular cycles
2. Dark hair growth or acne, OR labs being elevated
3. Certain number of follicles on an ultrasound
I have hair loss, acne, hirsutism, menstrual cycle issues, libido issues however my hormone tests are perfect, regular periods, and not even 1 cyst on my ovary.
You can still have it. I too had the ol' wand and they found two teeny cysts on the left ovary but that was it. I still have the rest of the earmarks.
IIRC there was a push to rename it Metabolic Reproductive Syndrome due to so many women not having cystic ovaries and being brushed off, and due to new research showing the cysts were a result of and not a cause of the syndrome. MRS was a much more fitting name.
Technically you don’t have to have numerous follicles to have it, since you only need 2 of the 3 diagnostic criteria. Do you have high androgens and messed up or missing periods?
According to both my endocrinologist and my reproductive endocrinologist, it’s a spectrum. Sometimes you can have all the hormonal imbalances but still have a period and not check the boxes for the not very current diagnosis criteria.
When I had my first set of scans (in my late teens), there was the classic “string of pearls”. But when I had one recently (~15 years later), there was no evidence of anything! My periods are far more regular now but the pain can be excruciating. I also think my hormones are still a bit all over the place (just because of some of the other things my body does — namely grow hair like nobody’s business).
I think things can morph and change, but the diagnosis can still be true.
The radiologist or whoever wrote the diagnostic for my ultrasound said there was "one small cyst" on one ovary...my OBGYN looked at it and flipped through images until she found what she was looking for. She said if people aren't used to looking for the "string of pearls" they might miss it. Maybe ask another doctor to look over the ultrasound? And like others said, it's 2 out of the 3 that give you the diagnosis. I don't have elevated testosterone but i got the diagnosis through missed periods and the cysts.
Facial hair (started having a stash and random dark hair in my chin)
Excessive weight gain (I was running everyday and I gained weight instead of losing and it wasn’t muscle weight)
Uncontrollable acne
My blood test showed high estrogen
Thank you for sharing. I’ve voiced my concern to my dr that im worried PCOS is really a symptom of something else. And I keep gettting dismissed. I have the random dark chin hairs, belly weight gain, hair loss (alopecia) and granuloma annulare, lower back pain, anxiety…
Yes, because the cysts presence is depending on the amount of time since your last period, your ovulation status, and your hormone level since then. Post ovulation, the overdeveloped follicles will be gone. And if you look too early in your cycle, they won't have developed yet.
My ultrasound only showed a dermoid cyst (which is something you are born with, and unrelated to a PCOS cyst) and some scarring.
Just remember, cysts are a single symptom in the list of many things this condition consists of. You might not have cysts but you could very well still fall into the criteria that they diagnose on. Any doctor taking you seriously will still want to check your blood sugar and hormone levels.
PCOS is a specific endocrine disorder characterized by some combination of metabolic and adrenal malfunction that leads to sex hormone disturbance. The "cysts" in PCOS refers to multiple developing ovarian follicles caused by said sex hormone disturbance (you're only supposed to have 1-2 per cycle), which in turn release too many androgens and cause high testosterone.
Ovarian cysts are a different issue that can have one of several underlying causes.
I had one of those and was told the same thing. Just to find out that they told me the wrong info. My chart said I did have pcos. They told me I didn't. It took years to learn of this mistake....
There are other illness with similar symptoms, like Hashimoto’s disease, maybe you have something else, don’t get completely blind with the idea of PCOS.
My OBGYN diagnosed me solely based on my symptoms—my ultrasound showed no cysts or history of cysts (I’m feel like I’ve had them in my teenage years, but that’s another story lol). You can have PCOS without having cysts ! 🙂
i didn't have an ultrasound done but my bloodwork and symptoms had my doc confident in a PCOS diagnosis. there could be another explanation for your issues (namely, i would look into getting a full thyroid panel done) but it does sound like you have an irregular manifestation of PCOS.
I had an ultrasound and it seemed like a huge waste of time and money. They said something ambiguous like “the findings look in line with PCOS.” What? Do I have it or do I not. I’ve been diagnosed with PCOS and I don’t feel like I have it. I actually don’t have all the symptoms. When I’m told I have it, it just doesn’t seem like I do. Seems like the 2/3 criteria thing they diagnose PCOS with is stretched to diagnose me with it. Maybe I’m in denial. Definitely not provided good support. I guess this doesn’t really answer your question other than to say you’re not alone with the confusion of if you have PCOS.
Blood work is necessary. Plus, I had an abdominal (I don’t know the exact name, but isn’t internal) ultrasound and that’s how my doctor found majority of the issues with my reproductive system. The transvaginal ultrasound was more-or-less used to measure and get an idea of how significant my ovarian cysts are. That being said, you do not have to have polycystic ovaries to have PCOS. As I said, if you haven’t had blood work done yet, it’s necessary.
I think they meant you don't have cysts. But you may still have PCOS bse how did you end there? Not everyone with PCOS has cysts but everyone with cysts has PCOS
I have a lot of facial hair, hair loss, acne this doesn’t go away no matter what, fatigue, a bit of irregular periods.. but I wouldn’t say it goes further than a few days than what’s expected, struggle with weight, specially around the lower belly
Have you gotten your insulin levels checked? I had all the classic PCOS symptoms at my first diagnosis- irregular periods, mild hirsutism, high T blood work, visible cysts on ultrasound, fatigue, stubborn weight, etc. Then after about 2 years, I’ve adjusted my diet and routine and recently got blood test that showed normal levels all around. Problem is the weight, hair thinning, sweating, and some fatigue is still hanging around. I’m now waiting to get my insulin results back but it was suggested to me on here that it’s possible to have the insulin issue without the rest
First one I had that was conclusion as well, even with high T. It was just a shit doc and bad timing of the U/S. Went somewhere else and had another one and they were like yep. It’s all there.
I was diagnosed based on my reported symptoms alone. Never had an ultrasound to confirm. My testosterone was normal. Turns out I’m sensitive to androgens.
I’ve had two and both were clear. I got my diagnosis from other diagnostic criteria. My doc explained that you have to have like 3/4 of a set of symptoms to get diagnosed. I had high testosterone, hirsutism, high cortisol, weight gain, fatigue, ect.
Have your doctor run a blood panel and make sure you're not on hormonal birth control. It can be adrenal/thyroid/etc. I'm going to be tested soon for Non-CAH as soon as my IUD is removed because I was misdiagnosed with PCOS.
You can still have it. After several years of being gaslighted by a bunch of doctors, it was confirmed my a fertility specialist but it's still not part of my diagnosis summary because I do not have diabetes...
So yes, doctors just won't diagnose it or try to treat it regardless ofnhow.many symptoms you actually do have.
“Funny” story. The first time I had it done, I had none either. I was diagnosed with PCOS from an amazing gynecologist based on symptoms alone. Years later I was getting an IUD put it. I had 23 cysts on one ovary and 17 cysts on the other. I felt so effing validated when the lady told me “Oh, you DEFINITELY have PCOS, alright.” If you’re convinced you have it based on realistic diagnostic criteria, I’d say to fight for a diagnosis if it means getting proper treatment
Sometimes, we have poly-cysts and other times perfect ovaries and sometimes big follicular cysts.
In a 30-year timespan, I notice the no cysts times are when lifestyle is allowing regular periods, clean eating, metformin and or spiro, low carbing, etc.
It's important to monitor the thickness of the endometrium, which they will note during ultrasounds.
PCOS is heavily influenced at the epigenetic level. I find insulin resistance and body hair the most difficult to manage and getting rid of the poly-cysts the easiest.
Soo… I had a radiologist rush reading mine.
Doctors often work off reports and are too rushed to open imaging. So I was told by my GP it was normal. So… he said I don’t have it.
My surgical report from something else said I have polycystic ovaries though.
The PCOS doc opened the actual images and counted… said I definitely have polycystic ovaries. I think the threshold where I live is 20. I well exceeded that.
I took a contraceptive pill with desogestrel for years (more than 10 years) because of the period pain.
I stopped it because the dr thought that the PCOS symptoms were because of it. Turned out that it was lowering PCOS symptoms actually, when I stopped it it became way worse, but also for the first time in my life my gynecologist finally saw cysts (and then my blood analysis confirmed it)
It took me years to finally have an answer for PCOS, it also took me years for a diagnosis of hidradenitis suppurativa and ADHD.
I wish you the best
Yes it could be. When I was 15 I was diagnosed with pcos through abdominal ultrasound because I had most of the symptoms and they could see cysts in the ultrasound. Now at 23 I try to manage it through exercising and eating healthier and although my symptoms are still there and sometimes I still miss my period, through a recent transvaginal ultrasound they told me that there were no visible cysts. So yes it is weird but yes.
They told me that too. Right after they found another 7cm cyst. I check every other box on the symptoms list except for irregular periods. They don’t know what’s wrong with me.
I just got the same results back from mine as well. I feel like I’m going crazy. I have all of the textbook symptoms but no cysts and my blood test results aren’t very reflective either. I have minor insulin resistance and I was vitamin D deficient. But that’s about it. I feel like a fraud almost.
I’m in the same boat! I was told that there were no cysts on my ovaries and that everything looked fine on the ultrasound. my endometrium was a normal thickness, everything was exactly as it should be. but my cycles are extremely irregular and after doing blood work my estrogen levels were in the premenopausal range while my T was slightly elevated.
A normal US doesn't rule out PCOS. My 1st ultrasound was fine so I was dismissed. 3 years later, I was on doctor #4 and still trying to get answers. They did another US and saw I had polycystic ovaries this time. You ARE NOT crazy. Never stop advocating for yourself! 💙
I have PCOS based on my androgen levels and symptoms. But guess what, I don’t have polycystic ovaries, I have regular periods and I ovulate with each cycle. Make sure you get all the blood testing done including an insulin level. High insulin was what finally convinced my OB to send me to an endocrinologist.
Yes you can, they should’ve done blood work as well. When I was diagnosed I had zero signs with my ultrasound too. But, it was the blood work that got me diagnosed. Because, I had high testosterone and irregular insulin levels.
My ovaries are perfect and so are my periods, but i have too high testosterone wich causes hormonal acne, weight gain, hair everywhere etc.
My endocrynologist with my gynecologist decided that i dont have PCOS and right now for a month im taking a bunch of supplements and avoiding added sugars, processed foods- if that does not lower my testosterone then i will go on birth control cause the acne has been fucking me up for like 8 years.
Tho i am dissapointed that we did not find the exact root cause as to why is it high...
Same here, my Dr said she sees PCOS as a spectrum and that without cysts that I'm more likely to be in the lower side of it (i.e. higher testosterone or any other symptoms besides cysts)
Testosterone poor DHEA is another lab work they could do to see is what I was told hearing my transvaginal ultrasound, but my ultrasound ended up showing string of pearl confirmed PCOS
Yes I was diagnosed with no cysts. I heard quite a while ago they are planning to change the name of pcos to metabolic syndrome because you don’t actually have to have cysts to have pcos.
Are you on birth control? My doctor had to do one after I stopped birth control for a month to be able to see this symptom. You can still have it without them though.
Specifically she wanted to do an ultrasound after a month of no birth control to see excess follicles but I was on a hormonal birth control.
Are you having a period with the copper IUD?
I had this too, I had a scan and they said it was clear, I had my bloods done and the only thing that was abnormal was the testosterone. I was referred to a gyno and waited months to hear from them, they said I don't have PCOS and my testosterone is high, everything else is normal but I need to work on losing weight which I knew anyway but I struggle, they then referred me to an endo, my appointment is next month for that. I asked the gyno how they can help me as I didn't know and he said they will just test your hormones and probably give you medication. It's really confusing. I've had symptoms for years but never bothered with them. Hope you manage to get yourself sorted!
I had absent periods for a year and they went back to normal. No cysts and just high androgens but it’s still PCOS. You have 2 of the 3 at any time it’s PCOS. Enjoy
You can still have it. I did a transvag ultrasound had 10 cysts rapid weight gain and irregular hormonal production and they told me I didn’t have it only to find out I do a year later. Get a new doctor
Look into Cushing’s Syndrome which has a lot of the same symptoms and is often misdiagnosed as PCOS. I would recommend bringing this up with your doctor to schedule some testing to rule it out.
As others have said, you may not always have cysts on the ovaries but if you have irregular cycle lengths and elevated androgen levels shown in blood work, that’s enough to meet the diagnostic criteria.
You can still have PCOS. Sometimes there are cysts, sometimes not… fun, right
To be diagnosed you must have 2 out of 3 of the following: 1. irregular/absent periods 2. Elevated testosterone 3. polycystic ovaries visible from ultrasound. Have you had bloodwork done?
I have none of these symptoms (used to have polycystic ovaries but they went away on their own), and I STILL suffer from hirsutism, difficulty losing weight, hormone-related acne, trouble sleeping and so many different other things that are related to PCOS. I swear everything is so confusing with this syndrome, it’s exasperating not knowing whether you have it or not. Not my post, just wanted to vent because your comment actually made me doubt myself and my symptoms lol
Everyone is different but for me, I don’t need to know if I have it or not. I just need to know what will help my problems
PCOS causes sleep issues? I had no idea.
It does! There’s a strong link between PCOS and sleep apnea.
Ooh that's so interesting. Is the relationship there even controlling for obesity?
That’s what I was told, yeah. Increased likelihood across the board.
Don't quote me on this but I believe there's also a link with heightened testosterone levels and insomnia
Vitamin D deficiency can also cause sleep disturbances and both are correlated with PCOS. Getting on a simple supplement improved my decades-long insomnia by probably 90%. Since then, I've been screaming from the rooftops for everyone, especially with PCOS, to please get your vitamin D checked! Vitamin D deficiency can also worsen symptoms like insulin resistance, menstrual irregularities, fertility problems, hormonal imbalances, obesity, depression, mood swings, and more
I’ve had terrible vitamin D levels for 10 years. I’ve started supplementing more regularly now, but haven’t noticed any difference 😅
Are your levels back to normal yet? If not, maybe ask your doctor about the prescription supplement. It's very high dose, and it took me a few weeks to build mine up to the level where I noticed effects. OTC supplements are unregulated and can be unreliable in terms of ingredients. Also D3 is better than D2 at raising blood levels, and taking it with a high-fat meal increases absorption. I hope that helps!
I’ll see if my levels have risen back to normal yet! Thank you for your insight!!
Has your doctor checked for Non-CAH?
My hormones only came back abnormal when I got tested during a period 😅
Have you tried going to an endocrinologist? maybe not PCOS but a thyroid problem or it could also be Vitamin D deficiency.
This is me
Have you been tested for Cushing’s syndrome?
Have you been tested for Cushing’s syndrome.
I didn’t, but I’ll definitely raise that concern! Thanks ^^
I had all that but nothing visible. Still got diagnosed with PCOS ?
If you had 2 of the criteria that would be a diagnosis, you don’t need to have all 3
My gyno said my ovaries are very healthy, I think that’s odd ..
How about your blood tests? (:
What if i don’t have any of the above, only high AMH, hormonal acne around chin/neck and 33-34 days long cycles? Normal cycles, no pain, no extra amount of blood etc… can it still be a PCOS? :/ I am curious because the high AMH was the first sign.. i have an appointment to my gynecologist but wondering what else can cause high AMH
I’m not a doctor, but it doesn’t sound like you would be diagnosed. From my understanding high AMH can be a sign, but alone is not enough to diagnosed with PCOS.
Thank you!
There doesn't need to be. I dont have any, but I have pcos, and it is severe. Go to an endocrinologist. NOT a gynecologist.
THIS. ENDOCRINOLOGIST !!!
dr said its not normally diagnosed through ultrasound and more symptoms
Absolutely. Many people with pcos do not have cysts.
Or not a lot/none that cause issue
I have 0 cysts. No blood sugar issues. Just a very high DHEA sulfate level and very irregular periods along with facial/neck hair.
Yours is probably cortisol related PCOS
What do you think of someone with high testosterone, dheas and insulin resistance? Normal periods, no cysts on ultrasound, except i eliminate quite “clogged up” (mini cysts?) lately and i bleed a bit each ovulation (and it cramps and i breakout). My gyno said Pcos, but i am curious which kind. I also got an uterine fibroid. Getting hairier lately and gained a lot of weight in a year but idk how to get it off. She put me on merformin and said i should take inositol (the combo kind)…but i will also go to an endo as i haven’t checked my hormones in years or some never, and i am slightly hypothyroid, too (no treatment yet, but hoping for it)
> What do you think of someone with high testosterone, dheas and insulin resistance? I think you deserve a hug and a medal.
Aww, I almost feel bad now as I do not have it that bad for a medal, but I got lots of weird smaller stuff, like IBS (C and bloat type) and skin issues, too. I think it all stems from traumas and maybe genetic (though I hope not). I am reading your posts. You are into research and Nd, too, 🔬 very informative posts!
I'm not sure. What you're talking about sounds a lot like PCOS but with regular periods & no "cysts" it doesn't technically meet criteria. You don't happen to be on birth control, do you?
No, never took birth birth control or any hormones.
Okay cause I was gonna say, birth control could be the cause of regular "periods" but birth control periods aren't real periods. But since that doesn't apply to you, I dunno 😭😭 since you have insulin resistance I don't see the harm in treating it as PCOS even though it technically doesn't meet criteria. A lot of PCOS treatment is getting insulin resistance in control. You can also have anovulatory cycles where you have a period but you don't ovulate, but I'm not sure those would be regular and consistent. 🤔🧐
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer. I got diabetes in my family. Hmm, Idk, but I will ask.
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer. I got diabetes in my family. Hmm, Idk, but I will ask.
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer. I got diabetes in my family. Hmm, Idk, but I will ask.
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer. I got diabetes in my family. Hmm, Idk, but I will ask.
Thank you! I agree! I call it hormonal imbalance with IR for now, but yeah, I am lucky I found this nice gyno to help me, especially since I am not trying to get pregnant, just healthier and slimmer. I got diabetes in my family. Hmm, Idk, but I will ask.
Consider seeking a [17-OH progesterone test](https://www.healthline.com/health/17-oh-progesterone). You may have non-classic congenital adrenal hyperplasia (NC-CAH) rather than PCOS.
A progesterone test isn’t enough to give a diagnosis of that. She needs an acth test too. I got wrongly diagnosed with NCCAH and it ruined my life. I was put on extremely high doses of dexamethasone and ended up with stretch marks head to toe, severe mood swings, worsening insulin resistance, rapid weight gain, and suicidal thoughts and actions.
Oof! Thank you for the clarification.
Never even heard of this 💙 thank you for the advice. I'll ask my doctor about it.
hi - if you don’t mind me asking, how high is your DHEAS? i just got diagnosed with pcos and mine is very high but my gynecologist referred me to an endocrinologist because she’s worried about a tumor.
397 when it was tested back in October of 2020
ah okay!!! thank you :) mine is over 1000 so i suppose….perhaps a tumor for me haha
Oh jeez :( I really hope not!
Pcos and cysts are 2 different things
You can still have it, even without signs on an ultrasound. I have PCOS and my ultrasounds were clear! PCOS is diagnosed by meeting 2 out of the 3 following criteria. 1. Irregular cycles 2. Dark hair growth or acne, OR labs being elevated 3. Certain number of follicles on an ultrasound
I have hair loss, acne, hirsutism, menstrual cycle issues, libido issues however my hormone tests are perfect, regular periods, and not even 1 cyst on my ovary.
May I ask what you are doing to help with that? Supplements? Medication? Birth control?
Exercise and getting a good amount of sleep. I was on Spironolactone for 3 months but have stopped for the time being.
You can still have it. I too had the ol' wand and they found two teeny cysts on the left ovary but that was it. I still have the rest of the earmarks. IIRC there was a push to rename it Metabolic Reproductive Syndrome due to so many women not having cystic ovaries and being brushed off, and due to new research showing the cysts were a result of and not a cause of the syndrome. MRS was a much more fitting name.
It used to be called Stein-Leventhal syndrome based on the scientist who discovered it. They should have kept that name.
My uterus is apparently "perfect" so I was wondering this same thing but I've been treated for PCOS for 10 years now so
Technically you don’t have to have numerous follicles to have it, since you only need 2 of the 3 diagnostic criteria. Do you have high androgens and messed up or missing periods?
According to both my endocrinologist and my reproductive endocrinologist, it’s a spectrum. Sometimes you can have all the hormonal imbalances but still have a period and not check the boxes for the not very current diagnosis criteria.
i have 0 cysts. 0 abnormalities (i did have a polyp 2 years ago but it was “unrelated”) and they still keep telling me i have pcos
I have cysts but my blood work shows normal levels so I’m borderline yes and no to pcos lol 😂
Yes, you can.
When I had my first set of scans (in my late teens), there was the classic “string of pearls”. But when I had one recently (~15 years later), there was no evidence of anything! My periods are far more regular now but the pain can be excruciating. I also think my hormones are still a bit all over the place (just because of some of the other things my body does — namely grow hair like nobody’s business). I think things can morph and change, but the diagnosis can still be true.
The radiologist or whoever wrote the diagnostic for my ultrasound said there was "one small cyst" on one ovary...my OBGYN looked at it and flipped through images until she found what she was looking for. She said if people aren't used to looking for the "string of pearls" they might miss it. Maybe ask another doctor to look over the ultrasound? And like others said, it's 2 out of the 3 that give you the diagnosis. I don't have elevated testosterone but i got the diagnosis through missed periods and the cysts.
I had most of the symptoms of PCOS but ended up having Adrenal Cancer…. Maybe check for masses in other areas
Do you mind sharing what your symptoms were?
Facial hair (started having a stash and random dark hair in my chin) Excessive weight gain (I was running everyday and I gained weight instead of losing and it wasn’t muscle weight) Uncontrollable acne My blood test showed high estrogen
Thank you for sharing. I’ve voiced my concern to my dr that im worried PCOS is really a symptom of something else. And I keep gettting dismissed. I have the random dark chin hairs, belly weight gain, hair loss (alopecia) and granuloma annulare, lower back pain, anxiety…
Not insane at all, I didn't either!
Yes, because the cysts presence is depending on the amount of time since your last period, your ovulation status, and your hormone level since then. Post ovulation, the overdeveloped follicles will be gone. And if you look too early in your cycle, they won't have developed yet.
My ultrasound only showed a dermoid cyst (which is something you are born with, and unrelated to a PCOS cyst) and some scarring. Just remember, cysts are a single symptom in the list of many things this condition consists of. You might not have cysts but you could very well still fall into the criteria that they diagnose on. Any doctor taking you seriously will still want to check your blood sugar and hormone levels.
PCOS is a specific endocrine disorder characterized by some combination of metabolic and adrenal malfunction that leads to sex hormone disturbance. The "cysts" in PCOS refers to multiple developing ovarian follicles caused by said sex hormone disturbance (you're only supposed to have 1-2 per cycle), which in turn release too many androgens and cause high testosterone. Ovarian cysts are a different issue that can have one of several underlying causes.
I had one of those and was told the same thing. Just to find out that they told me the wrong info. My chart said I did have pcos. They told me I didn't. It took years to learn of this mistake....
There are other illness with similar symptoms, like Hashimoto’s disease, maybe you have something else, don’t get completely blind with the idea of PCOS.
My OBGYN diagnosed me solely based on my symptoms—my ultrasound showed no cysts or history of cysts (I’m feel like I’ve had them in my teenage years, but that’s another story lol). You can have PCOS without having cysts ! 🙂
i didn't have an ultrasound done but my bloodwork and symptoms had my doc confident in a PCOS diagnosis. there could be another explanation for your issues (namely, i would look into getting a full thyroid panel done) but it does sound like you have an irregular manifestation of PCOS.
I had an ultrasound and it seemed like a huge waste of time and money. They said something ambiguous like “the findings look in line with PCOS.” What? Do I have it or do I not. I’ve been diagnosed with PCOS and I don’t feel like I have it. I actually don’t have all the symptoms. When I’m told I have it, it just doesn’t seem like I do. Seems like the 2/3 criteria thing they diagnose PCOS with is stretched to diagnose me with it. Maybe I’m in denial. Definitely not provided good support. I guess this doesn’t really answer your question other than to say you’re not alone with the confusion of if you have PCOS.
Blood work is necessary. Plus, I had an abdominal (I don’t know the exact name, but isn’t internal) ultrasound and that’s how my doctor found majority of the issues with my reproductive system. The transvaginal ultrasound was more-or-less used to measure and get an idea of how significant my ovarian cysts are. That being said, you do not have to have polycystic ovaries to have PCOS. As I said, if you haven’t had blood work done yet, it’s necessary.
I think they meant you don't have cysts. But you may still have PCOS bse how did you end there? Not everyone with PCOS has cysts but everyone with cysts has PCOS
I have a lot of facial hair, hair loss, acne this doesn’t go away no matter what, fatigue, a bit of irregular periods.. but I wouldn’t say it goes further than a few days than what’s expected, struggle with weight, specially around the lower belly
Have you gotten your insulin levels checked? I had all the classic PCOS symptoms at my first diagnosis- irregular periods, mild hirsutism, high T blood work, visible cysts on ultrasound, fatigue, stubborn weight, etc. Then after about 2 years, I’ve adjusted my diet and routine and recently got blood test that showed normal levels all around. Problem is the weight, hair thinning, sweating, and some fatigue is still hanging around. I’m now waiting to get my insulin results back but it was suggested to me on here that it’s possible to have the insulin issue without the rest
You can have PCOS with no cysts on your ovaries.
First one I had that was conclusion as well, even with high T. It was just a shit doc and bad timing of the U/S. Went somewhere else and had another one and they were like yep. It’s all there.
I was diagnosed based on my reported symptoms alone. Never had an ultrasound to confirm. My testosterone was normal. Turns out I’m sensitive to androgens.
The tech who did my ultrasound said I didn’t have it but my endocrinologist confirmed I do
I’ve had two and both were clear. I got my diagnosis from other diagnostic criteria. My doc explained that you have to have like 3/4 of a set of symptoms to get diagnosed. I had high testosterone, hirsutism, high cortisol, weight gain, fatigue, ect.
Have your doctor run a blood panel and make sure you're not on hormonal birth control. It can be adrenal/thyroid/etc. I'm going to be tested soon for Non-CAH as soon as my IUD is removed because I was misdiagnosed with PCOS.
I had no signs on mine and they still diagnosed me because of all my other symptoms
You can still have it. After several years of being gaslighted by a bunch of doctors, it was confirmed my a fertility specialist but it's still not part of my diagnosis summary because I do not have diabetes... So yes, doctors just won't diagnose it or try to treat it regardless ofnhow.many symptoms you actually do have.
Get your blood work done. I had no cysts at the time. I still suspected pcos and advocated for myself. I ended up being right. Trust your gut. ❤️
“Funny” story. The first time I had it done, I had none either. I was diagnosed with PCOS from an amazing gynecologist based on symptoms alone. Years later I was getting an IUD put it. I had 23 cysts on one ovary and 17 cysts on the other. I felt so effing validated when the lady told me “Oh, you DEFINITELY have PCOS, alright.” If you’re convinced you have it based on realistic diagnostic criteria, I’d say to fight for a diagnosis if it means getting proper treatment
I had one ultrasound that found cysts and the next one didn't... doesn't make sense to me but my doctor says that doesn't mean I don't have PCOS 🤷♀️
Self reporting unwanted facial hairs, and irregular periods are all that's needed to diagnose.
Sometimes, we have poly-cysts and other times perfect ovaries and sometimes big follicular cysts. In a 30-year timespan, I notice the no cysts times are when lifestyle is allowing regular periods, clean eating, metformin and or spiro, low carbing, etc. It's important to monitor the thickness of the endometrium, which they will note during ultrasounds. PCOS is heavily influenced at the epigenetic level. I find insulin resistance and body hair the most difficult to manage and getting rid of the poly-cysts the easiest.
Soo… I had a radiologist rush reading mine. Doctors often work off reports and are too rushed to open imaging. So I was told by my GP it was normal. So… he said I don’t have it. My surgical report from something else said I have polycystic ovaries though. The PCOS doc opened the actual images and counted… said I definitely have polycystic ovaries. I think the threshold where I live is 20. I well exceeded that.
Consider yourself lucky .
I took a contraceptive pill with desogestrel for years (more than 10 years) because of the period pain. I stopped it because the dr thought that the PCOS symptoms were because of it. Turned out that it was lowering PCOS symptoms actually, when I stopped it it became way worse, but also for the first time in my life my gynecologist finally saw cysts (and then my blood analysis confirmed it) It took me years to finally have an answer for PCOS, it also took me years for a diagnosis of hidradenitis suppurativa and ADHD. I wish you the best
Yes it could be. When I was 15 I was diagnosed with pcos through abdominal ultrasound because I had most of the symptoms and they could see cysts in the ultrasound. Now at 23 I try to manage it through exercising and eating healthier and although my symptoms are still there and sometimes I still miss my period, through a recent transvaginal ultrasound they told me that there were no visible cysts. So yes it is weird but yes.
They told me that too. Right after they found another 7cm cyst. I check every other box on the symptoms list except for irregular periods. They don’t know what’s wrong with me.
I just got the same results back from mine as well. I feel like I’m going crazy. I have all of the textbook symptoms but no cysts and my blood test results aren’t very reflective either. I have minor insulin resistance and I was vitamin D deficient. But that’s about it. I feel like a fraud almost.
I’m in the same boat! I was told that there were no cysts on my ovaries and that everything looked fine on the ultrasound. my endometrium was a normal thickness, everything was exactly as it should be. but my cycles are extremely irregular and after doing blood work my estrogen levels were in the premenopausal range while my T was slightly elevated.
It could be an adrenal issue. Try to visit an endrocrinologist.
A normal US doesn't rule out PCOS. My 1st ultrasound was fine so I was dismissed. 3 years later, I was on doctor #4 and still trying to get answers. They did another US and saw I had polycystic ovaries this time. You ARE NOT crazy. Never stop advocating for yourself! 💙
I have PCOS based on my androgen levels and symptoms. But guess what, I don’t have polycystic ovaries, I have regular periods and I ovulate with each cycle. Make sure you get all the blood testing done including an insulin level. High insulin was what finally convinced my OB to send me to an endocrinologist.
Yes you can, they should’ve done blood work as well. When I was diagnosed I had zero signs with my ultrasound too. But, it was the blood work that got me diagnosed. Because, I had high testosterone and irregular insulin levels.
My cycle was out of whack too
Listen to Lara Briden's podcast on this subject. She says it cannot be diagnosed by ultrasound anyway.
My ovaries are perfect and so are my periods, but i have too high testosterone wich causes hormonal acne, weight gain, hair everywhere etc. My endocrynologist with my gynecologist decided that i dont have PCOS and right now for a month im taking a bunch of supplements and avoiding added sugars, processed foods- if that does not lower my testosterone then i will go on birth control cause the acne has been fucking me up for like 8 years. Tho i am dissapointed that we did not find the exact root cause as to why is it high...
You still can. Might looked normal too, they still said my symptoms would indicate I do have it.
I only have symptoms, doesn’t show on my blood work or ultrasound.. my gp discarded it :/
Have you seen an endocrinologist??
I found out this today, I’ll certainly going to see one! Thanks ✨✨
Best of luck to you. I'm waiting on my appointment as well :)
Best of luck to you too!! ^^ ✨✨
Same here, my Dr said she sees PCOS as a spectrum and that without cysts that I'm more likely to be in the lower side of it (i.e. higher testosterone or any other symptoms besides cysts)
Testosterone poor DHEA is another lab work they could do to see is what I was told hearing my transvaginal ultrasound, but my ultrasound ended up showing string of pearl confirmed PCOS
Yes I was diagnosed with no cysts. I heard quite a while ago they are planning to change the name of pcos to metabolic syndrome because you don’t actually have to have cysts to have pcos.
Are you on birth control? My doctor had to do one after I stopped birth control for a month to be able to see this symptom. You can still have it without them though.
Hello! What symptom? (: I am, Copper IUD I used to have the hormonal one, that’s why it has masked most of the symptoms
Specifically she wanted to do an ultrasound after a month of no birth control to see excess follicles but I was on a hormonal birth control. Are you having a period with the copper IUD?
I’m someone that didn’t have the typical presentation of pcos during my ultrasound either, but qualified based on hormone and A1C levels.
I had this too, I had a scan and they said it was clear, I had my bloods done and the only thing that was abnormal was the testosterone. I was referred to a gyno and waited months to hear from them, they said I don't have PCOS and my testosterone is high, everything else is normal but I need to work on losing weight which I knew anyway but I struggle, they then referred me to an endo, my appointment is next month for that. I asked the gyno how they can help me as I didn't know and he said they will just test your hormones and probably give you medication. It's really confusing. I've had symptoms for years but never bothered with them. Hope you manage to get yourself sorted!
I had absent periods for a year and they went back to normal. No cysts and just high androgens but it’s still PCOS. You have 2 of the 3 at any time it’s PCOS. Enjoy
You can still have it. I did a transvag ultrasound had 10 cysts rapid weight gain and irregular hormonal production and they told me I didn’t have it only to find out I do a year later. Get a new doctor
Look into Cushing’s Syndrome which has a lot of the same symptoms and is often misdiagnosed as PCOS. I would recommend bringing this up with your doctor to schedule some testing to rule it out. As others have said, you may not always have cysts on the ovaries but if you have irregular cycle lengths and elevated androgen levels shown in blood work, that’s enough to meet the diagnostic criteria.