How do I know if I have PCOS, how do I get diagnosed?

Polycystic ovary syndrome, also known as PCOS, is an endocrine disorder that affects approximately 1 in 10 women. It is characterized by the presence of multiple cysts in the ovaries and, depending on its impact, can have different consequences such as very short cycles and hormonal imbalances leading to acne, increased hair growth (hirsutism) and hair loss. PCOS is the leading cause of infertility for menstruating people of reproductive age, which is why it is worthwhile to get diagnosed with PCOS .

PCOS in a few words

Polycystic ovarian syndrome (PCOS) is also known as ovarian dystrophy , polycystic ovarian disease or Stein-Leventhal syndrome .

It is caused by a hormonal imbalance of ovarian and/or central (brain) origin. It leads to an overproduction of androgens, male hormones such as testosterone, which promote the development of male characteristics. These hormones are usually produced in small quantities in the female body.

Contrary to what the name “polycystic ovarian syndrome” might suggest, PCOS is not characterized by the appearance of cysts on the ovaries… These are not cysts that are observed during the ultrasound, but small follicles that accumulate in the ovary instead of continuing to grow. No follicle becomes dominant and no ovary is released: this is anovulation.

It is the most common endocrine disease among menstruating people of reproductive age, with PCOS affecting 5 to 10% of them, from adolescence to menopause. It is also the leading cause of infertility.

Symptoms and signs to watch for

There are many symptoms that may indicate the presence of PCOS :

• Acne: Caused by hormonal imbalance, acne can be boosted, especially just before menstruation. A common symptom of PMS, it is also a symptom of PCOS;
• Increased hairiness (hirsutism): with the increase in androgen hormones in the body, hair growth increases in new areas: tops of the hands and feet, moustache, areolas, back, buttocks, etc.
• Hair loss: Increased testosterone levels may be responsible for hair loss. If you experience this symptom, it may be important to seek medical help;
• Weight gain: Increased male hormones can lead to significant and unexplained weight gain: if you notice that your weight is moving even though your lifestyle habits have not changed, this may be a symptom to present to your healthcare professional;
• Painful periods: Painful periods are one of the symptoms of PCOS. If your periods suddenly become more difficult to cope with, this may be a sign of a problem: don't hesitate to consult a healthcare professional;
• Change in menstrual cycles (shorter, longer, heavier periods): A sudden change in your menstrual cycles (especially in length and flow) may be linked to PCOS;
• Anovulation, amenorrhea: The absence of periods should alert you: if a pregnancy test confirms that you are not pregnant, consult a doctor. Amenorrhea is a symptom of PCOS;
• Other symptoms linked to hormonal imbalance: significant fatigue, increased PMS, mood swings, etc.

Each of these symptoms, considered individually, can be indicative of different diseases and disorders—PCOS is not the only explanation. Likewise, each of these symptoms can vary in intensity and be different depending on your menstrual cycle. Therefore, if you experience any of these symptoms, do not hesitate to consult a healthcare professional. Below, we explain how PCOS is diagnosed.

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Getting Diagnosed with PCOS: Understanding Everything

The diagnostic process for PCOS is easier than that of endometriosis , another gynecological condition that has been particularly discussed in recent years. In this section, we present everything you need to know about diagnosis.

The health professionals involved

Healthcare professionals involved in diagnosing PCOS are:

• The attending physician: Because he or she knows your entire treatment journey, your attending physician is the first point of contact to support you in your PCOS diagnosis;
• The gynecologist: PCOS is a condition that particularly affects menstrual cycles and female sexual organs, so the gynecologist is often specialized in this syndrome. Some gynecologists specialize in PCOS;
• Endocrinologist: PCOS falls under the purview of gynecology and endocrinology because it is linked to hormonal dysfunction. An endocrinologist is therefore the other specialist best able to identify the symptoms of PCOS.

We recently developed a directory of healthcare professionals recommended by our community (and by you) for their kindness and professionalism.

A diagnostic tool: the Rotterdam criteria

The diagnosis of PCOS has long been a matter of debate. In December 2013, the American Society of Endocrinology published its recommendations for the diagnosis and management of this condition. In 2014, the European Society of Endocrinology followed suit. The Rotterdam Consensus lists three key criteria for diagnosing PCOS:

• Clinical hyperandrogenism (hirsutism, acne, androgenic hair loss) or biological (abnormally high testosterone levels);
• Menstrual cycle disorders, with rare or absent ovulation (oligo-anovulation or anovulation). The Rotterdam criteria established that cycles shorter than 21 days or longer than 35 days were considered dysovulatory;
• Large ovarian volume (greater than 10 mL and without the presence of a cyst or dominant follicle) and/or a significant number of small follicles detected during a vaginal ultrasound.

In France, the diagnosis of PCOS requires the presence of at least 2 of these 3 criteria.

Tests for diagnosing PCOS

Since there are many symptoms of PCOS, there are three tests that can be used to detect it:

• Hormonal assessment: this assessment focuses on different hormones (FSH / LH, androgen hormones, etc.). Blood tests are carried out at different times during the menstrual cycle;
• Pelvic and/or abdominal ultrasound: ultrasound is often offered to study the size of the ovaries. These may become enlarged (1.5 to 3 times the “normal” size) in cases of PCOS;
• Laparoscopy (rarer): Laparoscopy involves observing the interior of the abdominal cavity, the uterus, the ovaries and the fallopian tubes. It can reveal significant ovarian activity linked to the disease (large ovarian volume and a large number of small follicles).

Specialized hospitals

Some hospitals have specialized in the diagnosis and treatment of PCOS.

• Nîmes University Hospital, Metabolic and Endocrine Diseases department : the University Hospital offers comprehensive support for the diagnosis and treatment of PCOS;
• Saint Joseph Hospital, PCOS department: the Institute of Medical Gynecology at Paris Saint-Joseph Hospital offers care.

✋ Does a hospital near you offer a diagnostic and treatment pathway specific to PCOS? You can let us know in the comments, by email, or by sending a private message on Instagram. We'll update this article.

Getting Diagnosed with PCOS: The Journey

If you have some of the PCOS symptoms detailed earlier in this article, and more specifically in our article on PCOS symptoms, it may be worth considering PCOS. This is also the case if you're planning a baby but haven't been able to get pregnant after several months of trying.

1. Appointment with your primary care physician: First, it's a good idea to see your primary care physician. Because they know your entire medical history, they will be best placed to offer you a suitable diagnostic pathway. They will recommend you to a specialist: either a gynecologist or an endocrinologist;
2. Appointment with a specialist, gynecologist OR endocrinologist: after having gone over your medical history with you and discussed your menstrual cycle, the gynecologist will suggest several tests to confirm the diagnosis of SPOK:
   1. Hormonal assessment: this must be done in a laboratory between the second and fifth day of the menstrual cycle (or, if you no longer have your period, it is induced by a progesterone-based treatment administered for 10 days);
   2. Pelvic and/or abdominal ultrasound: ultrasound allows the size of the ovaries to be studied and ovarian activity to be assessed;
3. Appointment with the specialist: Once the tests are completed, you will see your specialist again. Depending on the results, they will be able to make a diagnosis – PCOS or not. If you have PCOS, they will prescribe a new test:
   1. Metabolic blood test: PCOS increases the risk of metabolic syndrome (overweight, high blood pressure, blood sugar disorders) and type 2 diabetes. This is why it is necessary to supplement the hormonal assessment with a metabolic blood test when PCOS is confirmed.

💡 Are you trying to get pregnant and can't? It's important to seek medical help for yourself to make sure everything is going well. However, consider your partner too: they should also seek medical help. Indeed, more and more research suggests that sperm quality/fertility declines due to our lifestyle.

What tests and exams should I take?

There are generally two tests and examinations required to diagnose polycystic ovarian syndrome: your specialist will ask you to undergo a hormonal assessment and a pelvic ultrasound . In some cases, a laparoscopy may be suggested.

Hormonal assessment

The first test suggested to determine if you have PCOS is a hormone test. Since PCOS is an endocrine disorder, it involves checking the various hormone levels in your body.

Follicle-stimulating hormones (FSH) and luthenizing hormones (LH)

This assessment is carried out using a blood test taken at the beginning of the menstrual cycle (between the second and fifth day). If you no longer have periods, you may be offered progesterone treatment to induce them.

Hormone testing measures the levels of follicle-stimulating hormone (FSH) and luteinizing hormone (LH), two hormones secreted by a gland located in the brain (the pituitary gland). These hormones both play a role in the menstrual cycle. Follicle-stimulating hormone and luteinizing hormone control the ovarian cycle, and their levels vary throughout the cycle.

Normally, the basal level of LH is lower than the level of FSH. It increases during the menstrual cycle. If you have PCOS, the opposite happens: the basal level of LH is higher and does not increase mid-cycle, as it should to trigger ovulation – this is the reason why your cycles are disrupted, or even why you no longer have your period. This is called an FSH / LH ratio inversion.

Androgen hormones

The assessment also measures the level of androgen hormones (testosterone, androstenedione, and SDHA). It is elevated in women with PCOS, and it is this abnormally high level that causes certain symptoms such as hirsutism or hair loss. The hypersecretion of male hormones is a factor in weight gain. However, we now know that weight gain can increase the risk of infertility linked to PCOS.

Other hormones

Finally, depending on the situations observed, other hormonal dosages are requested in order to eliminate other pathologies responsible for symptoms similar to those of PCOS (prolactin, TSH, 17 hydroxy-progesterone, urinary cortisol, etc.).

Pelvic or abdominal ultrasound

A pelvic and/or abdominal ultrasound allows the ovaries to be observed.

These are:

1. determine the size of the ovaries : it is normally larger in the case of PCOS, between 1.5 and 3 times larger than normal (generally an ovary is the size of an almond);
2. show the large number of small follicles : when there are more than 12 small follicles, it is generally considered that this is not normal;
3. measure the size of the follicles: small follicles (between 2 and 9 millimeters in diameter) show that they are not continuing to grow and that this is therefore abnormal;
4. observe the ovarian volume: in the case of PCOS, the latter can be significant (greater than 10 ml) while not presenting any dominant follicle.

Although these characteristics are quite specific, an ultrasound alone cannot diagnose PCOS. Some women may have similar findings without actually having PCOS. This test complements hormonal assessment.

Laparoscopy

Some healthcare professionals may, in addition to ultrasound, recommend laparoscopy, also called coelioscopy. The surgeon, through incisions made in the abdomen, slides cameras to observe the organs.

This test, which literally means "looking at the walls," is used to inspect the inside of the abdomen of menstruating women to measure and observe the ovaries and the endometrial lining. It is also sometimes used to confirm a diagnosis of endometriosis.

The importance of diagnosing and monitoring PCOS

PCOS is a chronic condition, ranging from mild to severe, that impacts those who suffer from it. Various illnesses are associated with PCOS, which is why it is essential to get diagnosed and monitored.

Why get diagnosed?

Because PCOS isn't serious in itself, you might be tempted not to seek a diagnosis. After all, is it really a big deal not to get your period? If that's what you think, here's why you should get tested.

• Understanding your body: Are your irregular menstrual cycles bothering you a little, are you still confused about how your hormones work, are you gaining weight without explanation... all these symptoms could be related to PCOS. What if this was your answer?
• Living better with your menstrual cycles: You may have become accustomed to painful and irregular periods, fatigue... but have you ever considered that you could live without these different symptoms? By getting diagnosed, you will have access to medical solutions to limit these symptoms! Note: there is no specific treatment for PCOS today. Treatments are essentially symptomatic (we treat the symptoms rather than the causes).
• Considering a baby project: KSPO is particularly debilitating when trying to conceive. In fact, it can sometimes cause infertility when it's severe or not detected early enough. The sooner you treat it, the more answers and alternative solutions you'll have to help you conceive!

Contain and counteract PCOS-related diseases and disorders:

Obesity, type 2 diabetes, high blood pressure, endometrial cancer... various health complications can be linked to PCOS. Getting diagnosed and then being monitored can help protect yourself from these diseases.