In our previous article we looked at what PCOS is and why Black and Asian women find it difficult to get a diagnosis.

PCOS can happen to any woman and each person’s experience can differ. We spoke to two women who have experienced PCOS and how this condition has impacted their lives. 

Gee Williams 

Gee was diagnosed with PCOS at 14 years old and put on the contraceptive pill to help deal with her symptoms.

Back then I did not know what PCOS was and there was not the substantial amount of information as there is today, or advocates like myself especially in the UK.

PCOS only affected me when I came off of the pill due to planning for a baby. My hormones went crazy, and I did not understand what my body was doing. I gained four stone rapidly, which affected my confidence and I started to grow a little beard under my chin. I went to my GP and was prescribed weight-loss pills and Metformin which is used to treat Type 2 diabetes.

I feel that we as Black women are not 100% understood worldwide by some medical professionals. While PCOS does not discriminate, I believe we have the worst symptoms due to mostly being raised on diets which have higher carbohydrates and less low glycaemic index foods.

The best way to create more awareness is by Doctors and medical authorities listening to us. PCOS can have severe mental health implications such as bipolar, anxiety and depression. Medical experts also need to recognise that PCOS is a severe condition and provide more resources to address the condition and its severity. PCOS is reversible but at the moment there is no cure and one day I believe there will be one. 

Victoria E.

Victoria developed PCOS at a young age. Her symptoms began at the age of 11 when her periods started. 

Similar to Keke, I used to get really bad acne on my face. It’s since slowed down and now I tend to get them only around my period. I do have whole body acne though - back, arms, chest, buttocks, even my legs sometimes. I also suffer from Hirsutism. 

I have a beard I pluck regularly and thick hair grows on my breasts and chest. I used to have a lot of hair on my legs and arms but years of shaving and waxing has meant it doesn’t grow back as thick as when I was a teenager. Also hyperpigmentation - so any acne or ingrown hair scars just stay forever. Plus I have very low immunity, so the slightest thing can give me a cold. I get chest infections almost yearly.

My experience with Doctors hasn’t always been the most beneficial and a lot of my understanding has been as a result from my own research. I went to my Doctor to discuss it once and she put me forward for bariatric surgery which wasn’t what I wanted and had nothing to do with what I was suffering. The answer is always to lose weight - while I admit it will help, however, most of the people I know who suffer with PCOS are regular weight so that can’t be the answer. So it’s likely something I will continue to research on my own or look to a community for help. 

Resources

There are some great groups that you can join to get support about PCOS

PCOS Whatsapp Group

Toke Salami has set up a Whatsapp Group to bring people together in sharing their experiences when dealing with PCOS. The group chat is mainly a support group for women who suffer from PCOS. They share their experiences and recommend possible help in any shape or form. It is a safe space for sufferers of PCOS and the aim is to create a sense of sisterhood, rather than an extremely formal feel. 

PCOS Reset Elite 

Gee Williams has created the PCOS Reset Elite Membership Club in order to create awareness and act as a support group. Every Sunday evening they host PCOS Talks on Clubhouse. You can follow them on Instagram.

For more information about PCOS please visit the NHS website.