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(!).
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?
- Infrequent, absent, and/or irregular menstrual periods (Amenorrhea or Oligomenorrhea) – 0 or few normal periods
- Infertility or inability to get pregnant or maintain a pregnancy. In fact, PCOS is the most common cause of female infertility
- Hirsutism (HER-suh-tiz-um) — increased hair growth on the face, chest, stomach, back, thumbs, or toes
- 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)
- Acne, oily skin, or dandruff
- Weight gain or obesity, usually with extra weight around the waist
- Skin tags — Excess flaps of skin, usually found in the armpit or groin
- Anxiety or depression
- Mood swings
- Fatigue – very low energy level all the time.
- Male-pattern baldness (alopecia) or thinning hair
- Sleep apnea — when breathing stops for short periods of time while asleep
- Pelvic pain
- Heavy, irregular vaginal bleeding
- Difficulty falling asleep
What the doctor can see.
- 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).
- High levels of male hormones, androgens
- Elevated free testosterone
- Very very low levels of progesterone
- Elevated insulin levels and insulin resistance
- High cholesterol levels
- Elevated LH (Lutenizing Hormone) compared to FSH (Follicle Stimulating Hormone)
- Multiple hormone imbalances, commonly including:
- Androgens (testosterone)
- FSH (follicle stimulating hormone)
- LH (luteinizing hormone)
- Thyroid hormones.