PCOS Symptoms & Signs : a checklist

by SI on September 4, 2010

Poly Cystic Ovarian Syndrome (PCOS) is one of the most misdiagnosed syndromes. I was misdiagnosed. I was told that I was just obese and should cut down on the amount I eat and exercise more. I was tested for thyroid problems. I was even told that nothing is wrong with me and that if I get married everything will be fine(!).

PCOS misdiagnosed

What is PCOS?

Polycystic (pah-lee-SIS-tik) Ovarian Syndrome (PCOS) is a hormone or endocrine syndrome or group of clinical symptoms and was first described by doctors in the 1930s.

In PCOS characteristically there is an excess of androgens (male-like hormones) and lack of regular ovulation (release of an egg from the ovary). It is sometimes also referred to as “hyperandrogen anovulation syndrome” or “Stein Leventhal Syndrome”.

What are the symptoms of PCOS?

There are several contradicting symptoms that hint that you might have PCOS. Some of the symptoms will be visible to you, some only doctors can see with specialized tests. This symptom list is not an all or none checklist — you don’t have to have all the symptoms to have the problem. As I mentioned before, I don’t have any cysts, which is one of the main symptoms. But I have 11 out of the following 15 symptoms.

What you may see/feel?

  1. Infrequent, absent, and/or irregular menstrual periods (Amenorrhea or Oligomenorrhea) – 0 or few normal periods
  2. Infertility or inability to get pregnant or maintain a pregnancy. In fact, PCOS is the most common cause of female infertility
  3. Hirsutism (HER-suh-tiz-um) — increased hair growth on the face, chest, stomach, back, thumbs, or toes
  4. Patches of dark skin (almost velvety black) on the back of your neck, under arms, groin and other areas, called acanthosis nigricans (a-can-tho-sis ni-gri-cans)
  5. Acne, oily skin, or dandruff
  6. Weight gain or obesity, usually with extra weight around the waist
  7. Skin tags — Excess flaps of skin, usually found in the armpit or groin
  8. Anxiety or depression
  9. Mood swings
  10. Fatigue – very low energy level all the time.
  11. Male-pattern baldness (alopecia) or thinning hair
  12. Sleep apnea — when breathing stops for short periods of time while asleep
  13. Pelvic pain
  14. Heavy, irregular vaginal bleeding
  15. Difficulty falling asleep

What the doctor can see.

PCOS ovaries normal

  1. Multiple, small cysts in the ovaries. Polycystic ovaries are defined as 12 or more follicles in at least one ovary as seen by ultrasound. But as I mentioned in my introduction post, I don’t have cysts. You can have PCOS without any cysts and you can also have cysts and NOT have PCOS. Confusing? Ok, let me make this a little easier.
    • If you have cysts : And also have all the symptoms, then you probably have PCOS
    • If you have cysts : But don’t have any other symptoms, you might not have PCOS, but just make sure to ask the doctor if there are any problems with your cysts.
    • If you DON’T have cysts: But if you have all the other symptoms there is a good chance you have PCOS, try to diagnose it with other tests (hormone panel and/or insulin resistance).
  2. High levels of male hormones, androgens
  3. Elevated free testosterone
  4. Very very low levels of progesterone
  5. Elevated insulin levels and insulin resistance
  6. High cholesterol levels
  7. Elevated LH (Lutenizing Hormone) compared to FSH (Follicle Stimulating Hormone)
  8. Multiple hormone imbalances, commonly including:
    • Androgens (testosterone)
    • Cortisol
    • Estrogens
    • FSH (follicle stimulating hormone)
    • Insulin.
    • LH (luteinizing hormone)
    • Progesterone
    • Prolactin.
    • Thyroid hormones.

Other related articles

  1. PCOS Symptoms, Diagnosis & Treatment
  2. PCOS Symptoms
  3. PCOS Symptoms. causes & Treatment
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{ 7 comments… read them below or add one }

Samanthat April 11, 2012 at 8:07 pm

Is a low t3 and lower rande of tsh and t4 a sign of pcos???

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Kris April 29, 2013 at 5:34 am

I am 33, and I was disgnosed with PCOS about 6yrs ago. I went several years without any treatment (no insurance, etc) but last year I was put on a daily odes of Metformin and a Birth Control pill. However, neither seems to do much except control my periods. I have nearly every single symptom, and the weight, acne, mood swings, fatigue are all getting excessive. I can barely function. I have discussed this with my Gyn, but her solution is a hysterectomy. I am willing to have it, as I am done having kids, but the cost is way beyond my means right now. Does anyone know of anything else I can do to feel better???

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Amy August 3, 2013 at 5:26 pm

Kris,
I went to so many doctors that did not know about PCOS and wasted time getting treated. I gained over 100 pounds, had fertility problems, high cholesterol, high blood pressure and hair where I didn’t want it and losing hair on my head. I was exhausted all the time. Then I started having severe pelvic pain and discovered I not only had 2 uterine tumors, but endometriosis. The pain was more than I could stand and scheduled a complete hysterectomy. The doctor and I thought this would end my PCOS problems. I am no longer in severe pain, but it DID NOT end my PCOS nightmare. I finally found a doctor that really understand PCOS and was put on 2000mg of metformin and spironolactone. It is a wonderful! I’ve lost 40 pounds in 5 months, I no longer am losing my hair or needing to shave my face. My sugar levels, blood pressure and cholesterol have come down and my energy is up. Please don’t get a hysterectomy thinking it will end your PCOS. It will not. Good luck. I hope you can find a doctor to help.

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Geraldene July 23, 2013 at 10:22 am

hi,I’m 30year old indian female,im diagnosed with idiopatic intercranial hypertension for the past 2years,im slowly losing hope in living,this is my second marriage I dnt have kids,i have had dark armpits nd thighs from the age of 14,like patches,no matter what perfume or roll on I use,i break out in a bad dirty smell,i have breaking out with bad boils under my arms nd inner thighs I don’t know what to do,now its on my back,but my armpits are really bad and thighs,i have irregular periods,and I don’t know why I can’t have a baby,pls pls help me its embarrassing,i am over weight,which I’ve tried dieting and the fat around my stomach just won’t go down,im currently 116kgs I have been bigger due to my chronic meds I lost a few kills but nothing extrem,im constantly tired,im obese,i don’t know wat to do,the doctor checked my t my cholesterol level is very high,i have bad black marks on my face from pimples,i ave a lot of black marks on my body please help me facial hair grows soo fast,im tired of being ashamed of my body I hate my body thank u 4 listening godbless…

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Daniyah Bat Yahuwah July 29, 2013 at 6:17 am

In 1994, I gained a huge amount of weight, went from 130 lbs to 210 lbs within a matter of 3 months. My period stopped for over 2 yrs & I had discharged coming out of my breasts. I went to the Dr to find out what was going on & then had seizures due to the high dose of Risperdol (sp?) I was on, I was misdiagnosed & put on meds I did NOT need. They told me that I had cysts in my breasts, & they squeezed the rest of the fluid out, as it had popped within me. I continually had pain in my lower abdomen region near my ovaries. I also suffered from migraines. My dr ordered a CBC & tested my Prolactin level & found it to be abnormally high. So then he decided to give me an MRI & found out that I had a cyst on my Pituitary Gland, which caused my periods to stop all together. Then he decided to put me on a female hormone to try to get my period to start. That didn’t work. Then he put me on birth control, which, after a few months of that, it came back. Due to my not having my period for 2 yrs, osteoporosis started settling in my bones, & in Jan 1997, as I was jogging to get to the bus stop in time, I stepped down too hard on my left leg & split my tibea bone from my knee down to my ankle & the top area left crumbs of bone fragments in my knee area, w/a LOT of fluid surrounding my left knee. After about 2 wks, I went back to my orthopedic surgeon, & he decided I needed surgery b/c it wasn’t healing correctly. He put a plate w/2 screws into my left tibea bone, & cleaned out my knee of joint fragments & had to wear an immobilizer for 3 mos, & had to be in a wheelchair b/c I was in too much pain to move. (I wasn’t on any pain meds at all, except for Ibuprofen!) That halted all efforts at getting rid of the cyst on my pituitary gland. In July 1999, I was in a car accident, injured my neck & low back. In Oct 1999, I had a strange symptom hit me, horrible pain in my right side head, down to my neck & fingers, along w/numbness/tingling. I went to the ER but they told me I was “too young” to have a stroke & sent me home w/o examining me. Then I got married in Jan 2000, & 10 days later, it happened again but on the left side. I went to the ER AGAIN & was told the same thing AGAIN! I was 30 yrs old. My Primary Ph.D. however, ordered an MRI STAT & found lesions in the white matter on left side that matches up to my having a stroke. I was in the process of moving to NY so he told me to get a neurologist there to continue my treatment, which I did. That neurologist told me that I needed surgery to remove the cyst, which would require him having to go up through my nasal passages to get to it to pull it out & through. YIKES! The cyst on my pituitary gland had pushed up against my optical nerves causing me to have horrible migraines in my eyes & forehead region. The neuro Dr tried giving me different Rx samples for migraine meds, but ended up having a horrible reaction to Topomax, it made my headache WORSE instead of better. I thought my head was going to blow up! I told my neuro about it & he did a series of MRI’s on me each day during the week just before Palm Sunday. On Palm Sunday of 2000, as my hubby & I were at church, I couldn’t focus b/c the pain was horrible! When my hubby & I came home, he laid his hands on my head & said: “Tumor, in the Name of Jesus, I rebuke you & command you to get off my wife’s brain, in Jesus’ Name & I cast you back into the pit of hell where you came from! IN Jesus’ Name I command it done RIGHT NOW! Amen!” Immediately, I felt an unbelievable vibrating warmth enter into my eyes, move throughout my brain, it felt almost like tired eyes that burned but didn’t hurt, then move to the back of my head & out my neck. The next day, I had to get another MRI so my neuro Dr could look inside of the cyst to see if he’s dealing w/liquid or solid matter. In his office, they give the MRI’s then immediately look at the results & give me their diagnosis, but that day, he behaved quite strangely. He placed all the films from both states next to each other, then grabbed up another neuro dr & had him look at the images. Then he told me that the cyst is GONE & tried to give me the Dx of migraines. I said: “Hallelu’YAH!” & asked him if he believed in miracles. He said impossible. I then told him that I’m a Christian, I believe Jesus is the Son of G-d, & that HE healed me through my husband’s hands, as he prayed for me to be healed & that even my migraines are gone & I won’t be needing him nor his practice any longer! & left! I then went to an OB/GYN & was given the bad news that my fallopian tubes were badly scarred & that it’d take a miracle for me to get pregnant, as I struggled w/getting pregnant. I had continually gotten 1 thick hair that sprouted out on the left side of my chin, that I would pluck once it was noticeable & long. On 9/16/01, as my hubby & I were visiting his friend’s worship center, a lady came over to us, whom I didn’t know, & laid her hands on my head & prayed quietly for me, in the Holy Spirit. She then laid her hands on my abdomen, back to my forehead, over to my hubby’s forehead, then back to my forehead, & abdomen, then walked away. I didn’t feel that same warm tingly feeling as I did when my hubby prayed for me, but I was STILL HEALED! About 1 wk later, I woke up every morning at 3 am to pee, which was NOT normal for me. Then 2wks later, I began throwing up after eating foods I really like, or b/c of certain smells, & thought I had a stomach virus that was going around. My friends kept telling me that I was pregnant but I didn’t believe them. So, 1 day, while I was at college taking Criminal Justice, everywhere I looked, I saw pregnant girls/women, which I thought was quite odd, but decided I’d buy a test & take it the next morning, just to prove them wrong. However, I found out I was wrong b/c the test immediately came up as positive! I was dumfounded! My baby girl was due on Father’s Day of 2002, but arrived 5 wks early the day before Mother’s Day! She was a tiny peanut w/long feet, at 4-lbs, 8-oz; 18″ long! I was in labor w/her for 1 wk & 14 hrs of hard back labor & no epidural! She stayed in the hospital for 6 days & was discharged to me! She’s now a healthy, vibrant 11 yr old girl! 3 yrs & 4 days later, my son arrived, ON HIS DUE DATE, weighing in at 8-lbs, 9-oz; 23″ long! I was in labor w/him for 1 hr & 14 mins & again did not get an epidural! He’s now a healthy vibrant 8 yr old! What brought me here to this site, however, has to do w/my daughter, as she’s been struggling w/pain in her lower right abdomen, a burning pain that hits her w/o warning. She has yet to get her 1st period. (Thank G-d!) Her pain comes & goes & is infrequent. It woke her up this morning, but now the pain is gone. She doesn’t get the pain daily, but it will hit her suddenly & then leave to not come back until a month or more later! That’s why I’m here trying to figure out what’s really going on. I know that when I’m ovulating, I would have really bad pain about 1 wk before I get my period, on the side I’m ovulating. I also found out from my ob/gyn that my uterus is heart-shaped & slightly tilted, which could’ve been the reason for why I had problems in my pregnancy, as I had to be on bedrest for the 1st 1/2 of my pregnancy, although that was an impossible feat the 2nd time around, as my hubby is on the road 5 out of 7 days every week & I had to care for my exuberant 2 yr old daughter while pregnant w/my son!
My message to everyone here is this: We have an AWESOME CREATOR WHO is our Heavenly Father, WHO sent HIS SON, JESUS, to bare all our sicknesses upon HIMSELF, took the payment for our sins ~ DEATH ~ & nailed it to the cross! On the 3rd day, HE rose from the dead & is seated at the right hand of HIS FATHER in Heaven. HE KNOWS what we need, but we must be willing to cry out to JESUS, WHO is the ONLY WAY to HIS FATHER, & pour out our hearts to HIM, & HE WILL ANSWER your PRAYERS! For G-d SO loved the world that HE gave HIS ONE & ONLY begotten SON, that whomsoever believes in HIM will NOT perish but have EVERLASTING LIFE! John 3:16.

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Hannah Halford August 29, 2013 at 4:20 am

Im 19 and two years ago I was diagnosed with endometriosis, however ive been researching PCO and all of the symptoms add up to what I’ve been experiencing. However last October I had a lap done, which they confirmed endometriosis. Was wondering if they would of seen PCO? I have extremely irregular periods (cant remember the last time i had one!) My hair is very thin, my weight is up and down but I can’t seem to keep the weight off! I have excess hair on parts which are extremely embrassing, constant stomah cramps, very bad mood swings and im constantly tired I have no energy what so ever.
Thanks

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Natalie November 6, 2013 at 4:40 pm

Nope. A doctor did a lap on me & found endometriosis but missed the PCOS. By the time I found a new gyno who was willing to do a complete hysterectomy (I’m 36 yrs old) my ovaries were the size of my entire uterus and cervix when you put them next to each other. Request the blood tests to find out if you have PCOS and the ultra sound too. Do not give up. We just found out today that my 15 yr old has PCOS. There are a lot of us out there. You are not alone.

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