Polycystic ovary syndrome is a hormonal condition that affects the ovaries: ovaries become enlarged and contain fluid-filled sacs (follicles) that surround the eggs. This often prevents the release of an egg, so ovulation does not take place. PCOS affects 1 in 10 people with a uterus, 200 million people worldwide. It is important to note that despite the name of the condition, those with PCOS do not usually produce cysts, but rather follicles.

It is undiagnosed in up to 70% of cases and even when an investigation begins, attaining the diagnosis can take quite some time. Menstruators with PCOS will usually develop the common symptoms of PCOS during their late teens or early 20s, although this does not align with the age of getting the diagnosis. More than half of those with PCOS do not have any of the symptoms, impacting on the time it takes to reach the diagnosis.

 

The symptoms that one may notice include:

• irregular periods or no periods at all
• difficulty getting pregnant as a result of irregular ovulation or failure to ovulate
• excessive hair growth (hirsutism) – usually on the face, chest, back or buttocks
• weight gain
• thinning hair and hair loss from the head
• oily skin or acne

If you have any of these symptoms and are worried about PCOS, consult your GP.

Excessive hair growth (due to increased testosterone levels), hair thinning and acne have led to a common dismissal of the difficulty of living with PCOS as ‘cosmetic’. This is due to assuming that those living with PCOS are only affected in ways that deem them less beautiful in the eyes of society. The reality is that PCOS is not an issue with cosmetic appearance, but rather a condition that affects physical and mental health. The difficulty of getting pregnant and the uncontrollable changes to the body means that 34% of those with PCOS have depression and 45% have anxiety. Bulimia is also developed by 6% of those with PCOS.

Not everyone diagnosed with PCOS identifies as a woman. In recent years, the case has been made to move away from seeing it as a gendered condition, and instead of an intersex one. Some people living with PCOS and identifying as non-binary or trans have admitted that they have hesitated to disclose their gender identity through fear that they will not be listened to or respected as a patient. This is unacceptable. The gendered perceptions on health conditions adds further strain to raising awareness and to obtaining adequate medical support.
read more on this here https://helloclue.com/articles/cycle-a-z/what's-it-like-to-have-pcos-when-you're-trans

The exact cause of Polycystic Ovary Syndrome is unknown but has been assumed to be hereditary. The lack of understanding of the causes of PCOS is just one of the reasons we need to more openly discuss the condition and prompt more research. Arguably coinciding with the lack of information is the lack of treatments. There is no cure for PCOS but medicines are available to treat symptoms such as excessive hair growth, irregular periods and fertility problems. And if fertility medicines prove ineffective, LOD may be recommended. This is laparoscopic ovarian drilling that uses heat or a laser to destroy tissue in the ovaries that is producing androgens such as testosterone. However, it can be argued that these treatments are more of a band-aid effect; whilst they alleviate symptoms, they do not cure the condition. Like many health conditions that lead to weight gain, many of those with PCOS are simply advised to change their diet and exercise habits, dismissing the fact that the weight gain is uncontrollable.

Additionally, PCOS can be a precursor to type 2 diabetes, high cholesterol levels, varicose veins and sleep apnoea (when your breathing stops and starts in your sleep). There is also a 9% greater risk of endometrial cancer in people with PCOS. From this, it is clear how severe PCOS is for those living with it. But it should not be the responsibility of daunting lists of related health conditions that emphasises the urgency of more research and funding. Anything that makes life more difficult, should be explored seriously and carefully to help appropriately support those with health conditions like PCOS.

More research will lead to greater awareness, which will go in hand with reducing stigmas associated with PCOS. These stigmas often lead to feelings of shame and decreased self-efficacy, usually linked to an internalised social expectation of reproducing. Some may feel a loss of feminine identity and sexuality. These stigmas deter people from discussing their condition and from perhaps getting counselling. By raising awareness of Polycystic Ovary Syndrome, we can collectively break down the stigmas and become more attuned to the symptoms. There is nothing shameful about PCOS nor menstruation. Menstruation stigmas have long inhibited open discussion about periods and changes to periods, which can make going to the GP with period problems seem embarrassing. Being more open with periods and related health conditions is essential to making life with PCOS better and to making sure a diagnosis is obtained.

 

For more information on PCOS, here are some helpful sites:

nhs.uk/conditions/polycystic-ovary-syndrome-pcos/

verity-pcos.org.uk/

bupa.co.uk/health-information/womens-health/pcos

pcosaa.org/

helloclue.com/articles/cycle-a-z/what's-it-like-to-have-pcos-when-you're-trans

 

 

If you have anything you’d like to know more about, maybe I can help! Drop me a message at womensrep@ljmu.ac.uk