I can’t even begin to tell you how many women have seen multiple doctors, all of whom have missed their PCOS diagnosis. It happens time and time again.
Before we get into the reasons this might be happening, let’s remind ourselves how PCOS is diagnosed.
The Rotterdam Criteria
The Rotterdam criteria are commonly used to diagnose PCOS. According to the criteria, you need to have at least 2 of the 3 following symptoms:
- Irregular menstrual cycle
- Signs of hyperandrogenism (high testosterone) like acne, hair growth or hair loss
- Multiple follicles on your ovaries (seen on ultrasound)
Many doctors will do an ultrasound to check for multiple ovarian follicles as well as blood tests to check for high testosterone levels (amongst other hormone profiles).
Okay, so now that we know how PCOS is diagnosed, here are 10 reasons your PCOS diagnosis might be missed.
Get your Free PCOS Starter Kit
ENJOYED & DOWNLOADED BY OVER 86,500 OTHERS
1. You are not overweight
There are many women who have lean PCOS. Their weight is normal (they may even be under weight). But, remember that although weight issues are often seen in women with PCOS, it’s not always the case and is not a diagnostic criteria for PCOS.
Now, I have heard from women whose doctors did not pursue PCOS because they were not overweight.
2. You have a regular cycle
I have not always had a regular menstrual cycle. I’m very pleased to say that I do now. Does that mean that I don’t have PCOS anymore? Of course not. You only need 2 of the 3 criteria. So, you may well have a period regularly but struggle with high testosterone levels and ovarian follicles.
3. You did not have trouble getting pregnant
This is one that I have also come across frequently. A lot of women have gotten pregnant in spite of PCOS. Especially if you have a regular cycle.
A diagnosis of PCOS doesn’t always mean fertility difficulties, even though this is very common.
4. You don’t have a string of pearls
I’m not talking about the pearls that you’d pay a small fortune to have. I’m talking about the string of pearls on your ovaries.
You don’t need to have those ovarian follicles to have PCOS. 2 out of 3, remember?
5. Nobody else in your family has it
Although there is thought to be a strong genetic component to PCOS, it is not always seen in other female members of the family. For example, no other women in my family have PCOS, as far as I know.
6. You don’t have unwanted hair or acne
I know you’re starting to see a pattern here. Even if you don’t have hirsutism or acne, you could still have PCOS. If your cycle is irregular and you have the string of pearls, you could have PCOS.
7. You’ve been on birth control for years
A lot of us have been on the birth control pill for many many years. I was on it for at least 10 years before I was diagnosed with PCOS. The hormones from the pill often mask the symptoms of PCOS. It is only when you stop the pill that your symptoms come to light and you might start investigating the cause.
8. You’ve seen loads of doctors and none of them picked it up
Unfortunately this is another very common thing. It happened to me. PCOS is becoming more widely spoken about but there is still lack of awareness about PCOS. You may well have seen a number of doctors before you were diagnosed with PCOS.
So, there you have it. Your 8 reasons that your PCOS diagnosis may have been missed.
Was your diagnosis missed? I’d love to hear your experience! Leave me a comment below.
Get your Free PCOS Starter Kit
ENJOYED & DOWNLOADED BY OVER 86,500 OTHERS
I just turned 40 this year. For the last two years, my hair has been thinning, but not so badly anyone else really notices. I’ve been fighting acne and facial/neck hair growth. Also, my periods have been increasingly irregular. I’ve only had 4 periods this year and at least one of those wasn’t just spotting. With the others, the cramps and bleeding were really bad. For the last few months, I have been experiencing frequent flushing every day. Over the course of all of this, I have seen multiple doctors, had a CT, MRI, Ultrasound, multiple blood tests, undergone over a year of laser hair removal and tried multiple medications for acne including Spironolactone which I am currently taking. Nothing seems to be unusual in my results, yet nothing seems to be working to fix any of it either. The acne on my face is not as bad and it went away on my back, but the hair is still coming back on my face and neck. Just a couple of days ago I woke up to acne all across my chest, shoulders and upper back. I’m so frustrated. I have no idea what’s going on and nobody else seems to either. I’m 40 years old, I’m not over weight, I never struggled to get pregnant (6 living children) and only miscarried once that I was even aware of. Diabetes runs rampant in my family, and I have one sister who struggled with fertility and ovary problems and another who has had multiple ovarian cysts and just had a full hysterectomy because of a grapefruit sized cyst. I don’t want to go back to my PCP or my OB and have them shrug their shoulders at me again. I don’t know what to do. Any suggestions?
I’ve just started investigating if my 15yr old has PCOS . Blood tests done but came back normal. She had her first period July 2017 and nothing since. I have PCOS and it was masked by being on the pill from 16-21. Took me 7 years to conceive after I married. I never had periods at all
When came off the pill.
Metformin ans various drugs didn’t work. Eventually hormone injections did it in 7wks. I became a Mum age 30. I never used contraception my whole marriage . Then at 40 I discovered I was pregnant and again at 41. Miscarried both times. My periods became regular and mostly I have 10-12 cycles a year. It’s so weird that my friends are going g through the menopause and I’m
Just getting my periods sorted at 45! I do get a few symptoms and my periods are heavy and painful but generally I can manage with symptoms . Just hoping can get some answers
For my daughter. As doctors didn’t want to know with me , until I was ready to have a baby.
My PCOS was diagnosed 2 weeks ago at age 64 when my psychiatrist sent me for testing of my testosterone levels. It came back HIGH. I had lost so much hair on my head that I was wearing a wig. (When I was in my late 20’s I had so much hair, looked like Farah Fawcett hair!). Two gyns (one who specializes in reproductive endocrinology, my cousin) still couldn’t figure out what I had. I had even gone to a fertility specialist in my late 20’s (my cousin) when I was married & she told me not to be concerned. Suffered from severe cystic acne until age 40, when I was put on ACCUTANE. But, occasionally had to see dermatologist for cystic acne medication and later for hair loss medication. Suffer from depression, insomnia, sleep apnea & now realize it’s all connected to PCOS. Thanks for your website.
I have hair on my face since before age 20. I had four miscarriages and three births although almost lost my last son. I started gaining weight more hair terrible terrible periods. Wouldn’t have a hysterectomy. I just kept getting worse. No Dr really check to see why Type 1 diabetic after being misdiagnosed and almost dying three times. Gluten intolerant fibromyalgia trigeminal neuralgia. Arthritis. My body is a mess!! Exercise,quit eating,you’re lying you do eat! Depression! Low vit D Dr couldn’t figure out why. Dry eyes! Hair loss,chest hair! Could go on and on! Dr finally when I was 56 diagnosed me with PCOS! Felt like the bottom dropped out of my world! What I will never get better? No! And you will probably not lose weight ever. 300 lbs not acceptable! So you’re not going to help time for me to take charge of my life. I can’t take a lot of medicine due to allergies food environmental also! Been studying found supplements,people that understand and changing my diet back! So hopefully will at least gain some energy back mental clarity and just feel better for who I am. Time to break out.
I have had irregular periods. Then I missed my period up to 6months. I did and ultrasound and it said I have pcos. I was put on metformin and Yasmin contraceptives. My period regularized. Since 2 months ago I missed it 1 month then it came back by itself. Since last week my doctor gave me back metformin and yasmin contraceptives again. I started taking them. I went to do an ultrasound today and the ultrasound is saying my ovaries are fine. Now I am confused
My doctor failed to notice the signs earlier so i only found out i had it last year after
things got really out of control..
I have found information like this invaluable, with so little information available from the medical profession!
I stopped having periods for 10 years, but only very recently been diagnosed with PCOS, showing no other immediately obvious symptoms. Dissatisfied with the lack of information, I have been trying to take control of this, with tweaks to my diet and lifestyle, plus seeing a naturopath and acupuncturist.
They have explained with additional tests that my adrenal levels are way off (stress), which has been the cause of my hormonal imbalance, and therefore PCOS.
Now trying to balance out my body, fingers crossed. Even though you can tell these things intuitively, the knowledge is much more powerful. There should be wider education of this!
I went to a doctor about my hirsutism, and she just dismissed it as something that happened when women get older. In the end it was actually an aesthetician who suggested I might have PCOS (though I had had my suspicions for many years) when she was giving me a facial and noted my hormonal acne. Rather than get the brush-off again, I went back to the GP and pretended a ‘doctor friend’ of mine had noted my symptoms. I felt sure the GP would take this more seriously than if I said it was a facialist, and I was right. I got referred for the scan and it confirmed my multi-cysted status. Unfortunately getting the diagnosis does not even mean you will necessarily get good treatment from a doctor; so many PCOS concerns are brushed off and I had to take treatment into my own hands. More doctors could do with learning to recognise the early signs and also to understand how distressing and life-altering a condition this is.
My ob/gyn dismissed my concerns about pcos when I said I have a pretty regular period. I have many of the other symptoms (acne, hirsuitism, weight gain, pre-diabetes), and actually had the diagnosis suggested to my by my regular doctor. Should I insist on testing for it at m my next visit? According to the Cleveland Clinic, 20% of women with pcos have regular cycles…
This site is SUCH an eye opener! I’ve known I had cysts for roughly 14 years now, but blamed their flare-ups solely on accidental dairy consumption; Up until today I had been blaming all my symptoms on severe dairy intolerance. And ACTUALLY again, up until today I only knew my sister also suffers cysts, and didn’t know she tested positive for PCOS.
Are you able to tell me which of these symptoms is linked to PCOS? Some of them I feel are obvious in connection to just straight dairy intolerance (perhaps you know otherwise), but I’m now more curious about my other symptoms, even though their occurrences follow on the coat tails of accidental dairy consumption.
These 4 seem obvious to me:
*Severe gas, painful and acrid
*bloating and distention in the abdomen
And these 2 I now question:
Foggy brain, with an inability to focus as well as before consumption
Complete and utter exhaustion with unshakable lethargy
And, of course, directly linked to PCOS would be the abdominal pain; which dogged me for 5 long years after puberty, and before my realization of dairy intolerance, and then for 10 more years while I sorted out just exactly what dairy intolerance meant to my body.
My husband and I also had difficulty conceiving. We now have one beautiful little 4 year old daughter, but it took a heart wrenching and confusing year and a half to finally conceive (This was while still weeding out all my dairy issues. Cysts and dairy were only vaguely connected in my mind at the time, because cheesy pizza was still sometimes too tempting to turn down). I get patches of whiskers, mostly on my chin, which is blotchy and scarred from nearly daily plucking. I also have wads of hair that come off my head (luckily not in patches) every time I shower, that eventually sent me to the doctor to test for thyroid problems (nothing on that front, so I’m fortunate in that department as well).
Unlike you, the prospect of getting diagnosed holds no fear for me. I’m actually immensely relieved and a little perversely excited to finally have a NAMED issue! It also means that if my daughter gets it (Given our family history, I don’t hold out much hope of her avoiding it) she will be able to get a quicker diagnosis, and has someone who will know how to handle it and all it’s various quirks (as well as some amazing foods that make it so she won’t miss the dairy quite so much). I can barely contain this elation! It’s been such a long twisty journey.
Thank you so much for this website! I will be calling my doctor today!
I’m so glad you found it so helpful, Julie!
This was so helpfull. I was diagnosed with pcos in my early twenties but when trying to get pregnant, my fertility doctor said I did not have pcos. I have irregular cycles, excessive weight in my mid section, hair in places it shouldn’t be and acne on my arms and back, as well as difficulty loosing weight.
I was so confused when the doctor said I did not have pcos, but I will keep this in mind and bring it up after I have my baby. I’m 31 weeks pregnant 🙂
Over the years I’ve spent thousands of dollars with GP’s, OBGYN’s, even oncologists to try and find out why I was having irregular bleeding. I went through painful operations like 2 endometrial biopsies and colposcopies, ultrasounds, blood work, you name it. All to have doctors say I was healthy. One OBGYN even told me I was just going to have to deal with the bleeding issues. Then years later the acne kicked in, so I found myself running to a dermatologist to help me solve that issue. Recently I got smart and went to an endocrinologist who did thorough blood tests. He checked all my hormone levels. Come to find out I have hypothyroidism and PCOS! Make sure you work with a good endocrinologist if you are having any of the problems that could be associated with PCOS or Hypothyroidism. Now I can finally have a targeted approach to treating my symptoms.
I was diagonosed with PCOS in my middle- late teen years. I have the same symptoms right now at age 22. I got blood tests and an ovarian scan & they told me it was all normal & that I have no sign of any cysts/PCOS but I know that they are wrong because I have irregular periods, facial hair, hair in places where they shouldn’t be on a female. I used to have bad acne as a young teen – late teen years but have cleared. I try to take maca powder & other medicines to help with PCOS/health condition also I have hardly any energy/feel exhaustedly tired most times.
I live in a rural area amd seeing your GP is hard enough let alone getting an ultrasounds when the cysts are present. Sometimes the waitlist for an ultra sound is up to 6-9 months and 2 years to get seen in the Womens clic.
After 7 years of trying to get diagnosed with PCOS and many Dr apt, wait lists and reschedule ultrasound Apts, I have basicly given up on getting my diagnosis. The Dr’s make me feel like it’s no big deal and one even told me I’d grow out of it. In my 20s I had all 3 symptoms of criteria but now in my 30s my menstrual cycles have become more regular and only show 2 out of 3 symptoms for diagnosis.
Finding this site has been such a relief and wealth of information. Dairy for example…I choose cereals for quick meals when work is crazy and boy is it crazy right now! This week alone I have had a bowel of cereal twice a day every day, no wonder I feel like crap and had a flear up of symptoms!!! There are many changes in my near future.
Thank you sooooo much for putting well researched information out there and also making it easy to understand.
My PCOS was not diagnosed when I was in my early 20s by two different Dr’s because my FSH and LH hormones were within normal limits. Because of this they never checked progesterone levels even though my cycle was wildly irregular. I felt like I was making a fuss over nothing. I wasn’t diagnosed until nearly 5 years later after trying to get pregnant for years. It was only last year I found this website and understood how to control my symptoms. After being on this PCOS diet for 6 months I found myself pregnant naturally, two weeks before starting IVF. I’m now typing while cuddling my 9 week old daughter. PCOS definitely needs to me more widely understood by GPs so they can send people in the right direction!