Featuring the St. Lucia Endometriosis, PCOS, and Adenomyosis Support Group

September is Polycystic Ovary Syndrome (PCOS) Awareness Month around the globe. PCOS is a serious genetic, hormonal, endocrinal, metabolic and reproductive disorder that affects women and girls. It affects the proper functioning of the ovaries and their ability to release a fully developed egg, which means that ovulation does not take place.

Common signs and symptoms of PCOS include irregular periods (extended or none at all), excess facial and body hair, male pattern hair loss, severe acne, small cysts in ovaries, insulin resistance, weight gain, infertility, and anxiety and depression. Symptoms may range from mild to severe and some women do not have any symptoms at all.
PCOS is the leading cause of female infertility and can lead to lifelong complications and other serious conditions including obesity, Type 2 diabetes, cardiovascular disease, heart attack, stroke, endometrial cancer, uterine cancer, liver disease and severe depression and anxiety. Statistics from the USA show that 50% of women with PCOS will develop Type 2 diabetes before the age of 40 and women with PCOS are at 3x more risk of developing endometrial cancer.

The exact cause of PCOS is unknown, but it often runs in families. It is also related to abnormal hormone levels in the body, including high levels of insulin. Whilst there is no cure for PCOS, the symptoms can be treated. Maintaining a healthy weight by exercising regularly, and eating a healthy, balanced diet can improve some symptoms. Medicines are available to treat excessive hair growth, irregular periods and fertility problems. A surgical procedure is also available in respect of fertility, and with treatment, most women with PCOS are able to get pregnant.

Nonetheless, PCOS is a chronic and complex condition as it affects women their whole lifetime and permeates every facet of their life. It is not just reproductive but significantly impacts their mental health and social development. The combined symptoms can really affect a woman or girl?s self-esteem. It affects all aspects of womanhood and can affect or even prevent relationships. These are some of what makes PCOS difficult to manage for most women.

Raising awareness about PCOS underscores the crucial importance of sexual reproductive health (SRH), and the challenges we still face in this regard. Whilst we often think about SRH rights in the context of the more controversial issues of contraception, abortion, and the like, it is much broader and more fundamental and there is inherent danger in viewing SRH through too narrow lens.

UNFPA aptly defines good SRH as ?a state of complete physical, mental and social well-being in all matters relating to the reproductive system.?

In order to achieve and maintain sexual reproductive health, women and girls must have access to accurate information and to health and support services.

PCOS demonstrates this deficiency in our society. The experience of many women reveals that symptoms of PCOS tend to begin in adolescence. Girls often sense that something is wrong, but their symptoms are not usually recognized or diagnosed as PCOS until early adulthood. For some, they are only diagnosed when they experience difficulty trying to conceive. The reality is that although PCOS affects more than 1 in 10 women globally, some 50+% of women with PCOS go undiagnosed or misdiagnosed. However, an early diagnosis, healthy lifestyle changes and medical treatment can help reduce the symptoms and the risk of other serious diseases and this is why it is incumbent on us to ensure that women and girls have access to information and appropriate resources to enable them to cope with the condition and thrive despite it. Here lies the intersection of PCOS and SRH.

St. Lucia Endometriosis, PCOS, and Adenomyosis Support Group

Adiscussion with Ms. Rovin Fevrier (Founder) and Ms. April Louis of the organization St. Lucia Endometriosis, PCOS, and Adenomyosis Support Group (formerly Endo758) was very eye-opening as they offered insight from their own work and experience.

One key insight is that women in the Caribbean are, because of socioeconomic issues such as crime, poverty and lack of social welfare systems, particularly susceptible to PCOS. Caribbean women tend to be exhausted, overworked, and to eat not for nutrition but survival because they carry more of a burden within the home and outside. These situations impact mental health and well-being including stress levels, depression and anxiety, all of which are hormonal and can lead to insulin resistance, a trigger for PCOS. Therefore, managing PCOS requires lifestyle changes for Caribbean women.

Their consensus is that sufficient attention is not being given to PCOS and other reproductive health issues at the public health level. They identify the stigma attached to SRH and lack of access to accurate information as a major impediment to managing PCOS.

They are of the view that SRH is extremely stigmatized in our society on many levels. It is social and cultural in that it is considered a private issue and women and girls are generally unwilling to speak openly and publicly about such issues. It therefore also becomes political and economic, and even impacts research. When a topic is seen as unworthy or taboo, the necessary systematic ? legal and policy changes at a governmental level are not prioritized.

They recommend that we need, as a country, to attack the stigma and create an atmosphere where women feel secure and comfortable to speak about SRH issues and to get help when needed. For example, we need to change the culture where a young girl visiting a gynecologist is associated with being sexually active and negatively labelled and is therefore deterred from doing so. The importance of SRH and accessing those health services needs to be normalized from the onset of a girl?s menstrual cycle for the earlier detection of symptoms and diagnoses.

They also identify SRH education as lacking on many levels. They stress the importance of doctors moving beyond just treatment to educating their patients about their diagnoses by providing information about the condition and how it will affect their life and quality of life. In respect of conditions like PCOS which manifest differently in individuals, and which traverse several specialized areas of medicine, it is also important for medical staff to self-educate and keep up to date with new research and findings.

There is also a need for public education, starting from the primary and secondary school levels about reproductive health and issues and conditions relating to it, which tend to be overlooked. It ought not to be the case that a woman, upon receiving a diagnosis, does not even have the foundational understanding of menstrual or reproductive health to enable her to understand her condition.

They also note that government intervention is needed at a policy level. Of concern is that are no statistics in relation to the prevalence of SRH conditions such as PCOS, Endometriosis or Fibroids in St. Lucia and little, if any, in the region generally. Data collection takes time, financial and human resources which many organizations like theirs do not have. When there is governmental support through policy and legislation, then these resources are made available and decisions are made at the state level that will impact the wider population.

Ms. Fevrier and Ms. Louis corrected a few common misconceptions they have come across in working with PCOS:

1. Women who have PCOS do not necessarily have cysts.
2. Not all women with PCOS are overweight or have irregular periods.
3. Women with PCOS can become pregnant.
4. Having a child will not cure PCOS!
5. Infertility is only one potential symptom of PCOS.
6. Having severe menstrual or reproductive health issues is not normal!

Both Ms. Fevrier and Ms. Louis agree that as a society, we need to stop normalizing and downplaying reproductive issues. They recommend self-care and constant self-affirmation as important for managing PCOS. For any woman or girl coping with a reproductive health issue, they want you to know:

? Take one day at a time and forgive yourself
? It is going to be alright
? You are managing this as best as you can
? You are worthy of love
? You are worthy of attention
? You are beautiful
? You are deserving of everything good this world has to offer you
? Don?t doubt your self-worth
? You are not alone
? Your down day is not your last day
? Do not stop; you may pause, stretch, or even cry, but get up again
? You are going to get through this on the other side

By Kimberley Williams

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