Thread by @vagina_museum

It's #PCOSAwarenessMonth! This is going to be a long thread which we'll add to throughout September to give you a crash course in the basics on polycystic ovary syndrome over the month...

PCOS is an endocrine disorder (hormonal disorder/imbalance) which is very common - about 10% of cis women and people with ovaries have it. That means millions of people have it in the UK alone.

PCOS is called this because many people with PCOS have polycystic ovaries - multiple, small cysts on the ovaries which are caused by follicles which don't mature enough for an egg to be released.

The polycystic ovaries are not the cause of PCOS, they're a symptom of it.

In fact, up to 20% of people have polycystic ovaries, but not everyone with polycystic ovaries has PCOS.

Likewise, not everyone with PCOS has polycystic ovaries!

PCOS is an endocrine disorder, which means if you have PCOS, you might have some differences in your hormones, such as a higher level of androgens like testosterone (so-called "male hormones", although all ovaries produce androgens!).

Other differences in hormones if you have PCOS can include:
-higher levels of luteinising hormone (which stimulates ovulation)
-lower levels of follicle stimulating hormone (which stimulates ovulation)
-lower levels of progesterone (regulates thickness of uterus lining)

-lower levels of sex-binding hormone globulin (which regulates testosterone levels)
-resistance to insulin, which regulates glucose in the blood and causes the body to produce more insulin to compensate

These differences in hormones can cause the symptoms of PCOS, which include:
-irregular or no periods
-irregular or no ovulation
-fertility difficulties (becoming pregnant can be harder)
-extra body hair
-weight gain or difficulty losing weight
-acne
-hair thinning or loss

People with PCOS are more at risk of some health conditions such as type 2 diabetes, depression, heart disease, sleep apnoea and endometrial cancer... but with monitoring and treatment, these risks can be reduced.

Next week, we'll tell you a little more about diagnosis and treatment of PCOS - stay tuned!

PCOS TRIVIA: the first description of a patient who probably had PCOS appeared in 1721 by physician Vallisneri: "Young married peasant woman, moderately obese and infertile, with two larger than normal ovaries, bumpy, shiny and whitish, just like pigeon eggs."

Today we're going to talk a little bit about getting diagnosed with PCOS. If you've seen anything in this thread so far about symptoms and it resonates, or if you're worried about your gynaecological health in any way, please see a doctor!

Although it's a common condition - about 10% of people with ovaries have it! - getting a diagnosis of PCOS can be difficult. In an international survey of women with PCOS, over a third reported that it took more than two years to get diagnosed.

Almost half of the women in the survey reported having seen three or more medical professionals in getting their PCOS diagnosis.

So if you think you might have PCOS, you may need to be persistent and advocate for yourself.

On the NHS, you need to meet two out of three criteria to receive a PCOS diagnosis.
1. You have irregular periods
2. You have higher levels of androgens like testosterone
3. Scans show that you have polycystic ovaries

In looking at irregular periods and hormone levels, you'll also need to be tested for other conditions which can cause these things to rule them out, for example underactive thyroid or menopause.

(we'll talk a little more about PCOS and menopause later this month because it's worth discussing, but PCOS symptoms persist beyond menopause and it's harder to diagnose!)

On the NHS, you won't always receive an ultrasound scan examining your ovaries to diagnose PCOS. If you meet the other two criteria, you won't need one! Also, as we mentioned earlier, not everyone with PCOS has polycystic ovaries.

PCOS is frequently diagnosed at around puberty, when symptoms such as irregular or no periods and excess body hair first become apparent. It's also more frequently diagnosed if you're trying to get pregnant and having difficulty.

But symptoms can become apparent or noticed at any point in your life. If you're worried that you might have PCOS, please raise it with your doctor.

This is what a polycystic ovary looks like on ultrasound - the dark blotches are small egg follicles which didn't grow to ovulation. 20% of people with ovaries have polycystic ovaries (though not all of them have PCOS, and not everyone with PCOS has polycystic ovaries)

There is no cure for PCOS. Treatment for PCOS focuses on managing symptoms and reducing the health risks associated with it. As PCOS is a complex condition with many different symptoms, these treatments can depend on your needs and what works for you.

As we tell you about PCOS treatments, we want to preface this by saying not every recommended treatment works for everyone, and sometimes you might need to try several different things. You might also need to try different doctors to find a doctor you feel understands your needs.

In PCOS patients with a BMI of over 25, weight loss by diet and exercise will be recommended. This can be helpful - losing about 5% of body weight will restart ovulation and reduce symptoms in many cases. It can also reduce some health risks including diabetes and heart disease.

However, weight gain and difficulty losing weight is itself a symptom of PCOS, and can also be a side effect of some medicines prescribed to treat other symptoms.

But if your BMI is over 25, your doctor will almost definitely recommend it.

Very irregular periods, when you're only having your period a few times a year, comes with a risk of developing endometrial cancer (cancer of the womb lining). This can be managed by taking contraceptive pills to induce regular bleeding.

Another option if contraceptive pills don't work well for you is the hormonal IUD, which keeps the lining of your uterus thin even if you don't get periods.

Some contraceptive pills are also used to address the excess androgens in PCOS which can cause excess body hair and acne! One pill in particular is frequently recommended, called Dianette, which contains oestrogen and an anti-androgen.

Other options for addressing androgen levels include some other types of contraceptive pill, and anti-androgen medicines such as spironolactone. A cream applied to the face which slows hair growth might also be recommended.

However, treatments such as contraceptive pills and anti-androgens aren't right if you're trying to get pregnant. The contraceptives, obviously, stop pregnancy from happening, and anti-androgens aren't recommended if you're trying to get pregnant because of effects on the foetus.

PCOS is one of the most common causes of infertility and fertility difficulties. Fortunately, there are treatments available if you're trying to get pregnant with PCOS.

The first line of treatment is usually a medicine called clomifene, which encourages ovulation.

Another option is a drug called metformin which is used to treat diabetes (and can lower insulin levels if you have PCOS, too). It's been found to also encourage regular periods and ovulation and lower risk of miscarriage if you do get pregnant.

Other ovulation-stimulating drugs might be considered, as well as fertility treatments like IVF or minor surgery called laparoscopic ovarian drilling, where the ovary is zapped with a laser or treated with heat to remove some of the androgen-producing tissue.

After menopause, HRT can help treat symptoms of PCOS (as well as the menopause symptoms!)

So ultimately, there's no one treatment for PCOS which works for everyone - it depends on your body and your needs, in particular whether or not you want to get pregnant!

(btw if you have PCOS and you're NOT trying to get pregnant, listen to your body for changes as you might have a risk of being pregnant anyway: being overweight, having irregular periods and thinking you're infertile are risks for cryptic pregnancy!)

https://twitter.com/vagina_museum/status/1433048414141431809

PCOS FACT! PCOS was historically called Stein-Leventhal Syndrome after gynaecologists Irving F. Stein and Michael L. Leventhal, who first described the condition in 1935.

What causes PCOS?

The short answer is we don't know. No exact cause has been pinpointed, and there may not be a single cause.

PCOS is a complex condition and it can be difficult to sort cause from effect. We know it's a hormone imbalance, but what causes the hormone imbalance isn't clear.

For example, insulin resistance is common in PCOS - and insulin resistance can cause the ovaries to produce more testosterone, but not everyone with PCOS has insulin resistance!

Some cases of PCOS might be linked to genetics - PCOS runs in some families, and twin studies have found that many identical twins are both affected by PCOS. But no gene has been linked to PCOS yet.

It's estimated that there's a 50:50 chance of passing on the PCOS gene, and some evidence that this gene expresses in cis men in families as early male pattern baldness.

But genes aren't the whole story - some studies have linked PCOS with certain medications such as valproic acid, diets or environmental pollutants like organochlorine pesticides, but none of these factors are a single cause.

Other factors like stress and being overweight have been linked to PCOS, but again, it's unclear whether these are causes or symptoms. Basically, PCOS is complex!