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What is PCOS?
PCOS stands for Polycystic Ovary Syndrome which is a hormonal disorder that affects 1 in 10 women and AFAB individuals in the UK. Common hormonal dysregulations within this syndrome can cause polycystic ovaries that contain many follicles that have not matured to be ovulated (they are not actual cysts) as well as irregular levels of hormones relating to the menstrual cycle i.e. testosterone, oestrogen.
Due to these imbalances, symptoms of having PCOCS can show up as having painful periods, irregular or a complete lack of periods, difficulty in conceiving, excessive facial and body hair, acne, thinning hair – ‘male pattern baldness’, difficulties with weight and mood. PCOS cannot be cured, only managed. Despite it being so common and having the ability to extremely negatively impact individuals, there is very little emotional and practical support for those looking for a diagnosis or to manage their symptoms of PCOS.
When were you first diagnosed with PCOS?
S: I was diagnosed with PCOS in 2015. My life before my diagnosis was miserable.
I have always had heavy, painful and prolonged periods for as long as I can remember. I grew up in Jamaica where sex education at the time was minimal. I had no knowledge on periods or reproductive health issues and therefore assumed it was normal to have painful and prolonged periods. Because of this, I avoided seeking help and instead turned to traditional remedies to ease symptoms. This is a common practice within my culture to use traditional remedies for illnesses we perceived as ‘minor.’ I have always had the perception that periods were meant to be painful and there are available methods both conventional and traditional methods.
Because of this, I endured the pain for many years without proper medical intervention. I thought to myself—what will I say to the GP?—that I can handle what is thought to be a natural occurrence experienced by many females or people with uteruses. Also, my own fears and inherited stigma, and misconception around periods also delayed my willingness to seek help.
Traditional remedies have always helped to manage symptoms of heavy periods but it does not treat the condition. Instead, it provide a temporal fix to what can be a sever condition. Therefore, the pain and discomfort continued until it became unbearable. At that point, I had multiple GP appointments regarding heavy menstrual bleeding—in which contraceptives and anti-inflammatory medicines such as ibuprofen was prescribed to help managed heavy bleeding. However, my symptoms persisted, at that time; I felt a diminished sense of femininity.
After many years, and many consultations—I took it up on myself to research factors that can cause heavy, painful and prolonged periods. My symptoms were similar to that of PCOS and for the first time I felt relieved. I presented my findings to my doctor who happily agreed referred me to a gynaecologist for a Trans Vaginal scan followed by a blood test to measure my hormone levels. The results confirmed what I had suspected all along: my ovaries were displaying signs of polycystic characteristics.
Meeting with the gynaecologist was a turning point in my journey. She took the time to explain what PCOS is, its potential impact on my life, and ways to manage its symptoms. She addressed my concerns about facial hair growth and provided valuable advice on managing PCOS through dietary changes. While there may be no cure for PCOS, the doctor reassured me that adopting a healthy lifestyle could significantly alleviate my symptoms.
C: I came off the contraceptive pill at the start of 2016 and found myself without a period for an entire year. After various trips for sexual health screens and pregnancy tests I went to the doctors and after 10 months of no menstruation they stated they would run some tests. I had blood tests to test my thyroid and hormonal levels and was booked in for a Transvaginal Ultrasound to look at my ovaries. I will always remember after the ultrasound was finished, pulling up my pants and trousers and asking the specialist what she thought it was. She continued looking at her computer inputting notes and stated “it’s probably PCOS.” I didn’t know what that was. I went into the toilets and googled it. The first thing that came up was the word ‘infertile’ & then ‘problems with fertility.’ I was 23 at the time, I had never really considered having children before. I now found myself faced with a possibility of not having that choice in a biological sense, which was pretty upsetting. I had to wait over the Christmas holidays and at the start of the New Year I was sent a letter asking to speak with the GP and there was given my official diagnosis. I was put back onto the pill to experience regular cycles again, given a yellow pamphlet on PCOS and advised to practise a healthy lifestyle in order to manage the symptoms.
A: I have only been recently diagnosed with PCOS, at the start of May 2023. I initially went to my GP after moving from the contraceptive patch (which I had been on for 7 years) to the hormonal Mirena IUS, as I had started to notice symptoms such as increased facial hair growth and minor increase in spots around my chin. My GP explained to me that it was likely that these effects were not from the IUS, but rather, a ‘positive effect’ from coming off the contraceptive patch. As the contraceptive patch contains oestregen and progesterone, and the Mirena coil only contains progesterone, the oestrogen in the patch had reduced the facial hair growth and acne, and as I no longer had the increased oestrogen, these symptoms had come back.
I initially went for a blood test, and this came back with no evidence of PCOS. My GP inquired if I would like to undergo further tests, and I agreed, so he sent me for both a vaginal ultrasound and normal ultrasound. I received a call from the GP about 2 weeks after the ultrasounds, and they confirmed that the results showed that my left ovary was clear, but my right ovary had growth of over 20+ follicles. The combination of my facial hair growth, acne, irregular periods when I was younger, and the results of the ultrasound confirmed my diagnosis of PCOS. After sharing my diagnosis, my GP inquired if I would like a referral to a dermatologist for my facial hair growth and acne, which I confirmed I did. Furthermore, I discussed my current diet and exercise regimes with my GP, and they gave me some advice on how to lessen the impact of PCOS in the future.
What is like currently living with PCOS and what have you learnt?
S: Armed with newfound knowledge and support, I embarked on a journey to manage my PCOS. I started by making dietary changes, focusing on a balanced, nutritious meal plan. Regular exercise became an integral part of my routine, aiding in weight management and overall well-being. Additionally, I explored various natural remedies and traditional medicines to ease the pain and nausea associated with PCOS. Though, other life stressors can sometimes put me off track, I still maintain a sense of happiness simply because I am now aware of condition and can easily make adjustment when necessary. Living with PCOS has taught me the importance of self-advocacy and perseverance. Despite the initial difficulties in getting diagnosed, I found solace in knowledge, support, and lifestyle changes.
C: After my diagnosis it felt quite isolating with a lack of information and support, so I just ‘got on with it.’ I had regular periods and I wasn’t looking to start a family. I remember speaking to a friend a few years later who asked if I was receiving any emotional support for it and I was quite surprised by that as it had never been raised as an option. Yet again half of the population will experience reproductive health concerns and struggles and there is a societal expectation that it’s normal and we need to ‘get on with it’ – tampon adverts I’m looking at you here. Over the years I met more people living with PCOS and learnt that it can affect people in different ways, show up in different symptoms. I have a friend who shaves her face every day, my hair has began thinning now. But to have that person who I can speak to and share experiences with is affirming and positive. I learnt through a podcast and another friend that a lot of people are told they cannot have children by health professionals, becoming lax on contraception and end up falling pregnant. After reading ‘Period Power’, a book on the menstrual cycle, I learnt that bleeding while on the pill was not real period blood but pharmaceutically induced. I decided that if I did want to have a family or make that choice later on in life, taking steps now could hopefully lead to more positive health outcomes and an easier experience down the line. I came off the pill and began fertility cycle tracking. A lot of women with PCOS may have irregular or regular-ish periods but not necessarily ovulate as well. After 3 months I finally had a period and began tracking. I now have a cycle lasting usually of 35 days/5 weeks where ovulation does take place. I also joined a PCOS community that offered a 30 day free programme covering nutrition, exercise, emotional wellness. There I learnt my anxiety could be due to the hormonal dysregulation taking place in my body due to people with PCOS experiencing higher levels of cortisol and what I could do to minimise this. Now after 7 years post diagnosis, I feel informed and knowledgeable about PCOS and how it specifically affects and lives in my body. I have my own personal network of support and know of nationwide and global ones out there. I’m also happy to now provide coaching support for clients in SASH around their PCOS and symptoms.
A: Currently, I experience very little clear side effects of PCOS, bar the facial hair growth and minor acne, and I just treat these with hair removal techniques and regular spot cream, while waiting for my dermatology appointment. As I have only recently been diagnosed, it is hard for me to clearly see what the impact of PCOS is going to be on my future general and reproductive health, so it is something that I am going to make a conscious effort to monitor. I was also lucky to have a pretty good experience with my GP all throughout my diagnosis, and he did not attempt to discredit my symptoms or experience – rather, he actively pushed for further testing when the blood test results came back all clear.
What advice would you give to others either looking for a diagnosis or living with PCOS?
S: It is essential to trust your instincts and persist in seeking medical attention when something feels off. While the road to diagnosis may be long and challenging, remember that you are not alone. By sharing my story, I hope to empower others facing similar challenges and remind them that they have the strength to overcome and manage PCOS. Remember, you are not defined by your condition, but rather by the resilience and determination with which you face it.
C: I would hope that now gaining and receiving a diagnosis can be a more positive experience my own 7 years on. There’s more discussions and knowledge around PCOS these days. To be diagnosed with PCOS you need to display 2 of the symptoms listed at the beginning of this post. Know that you will need blood tests and a Transvaginal Ultrasound, tell your GP to give you those. Don’t listen to misinformation around infertility, PCOS can make it harder to conceive but not impossible. Look for PCOS support networks if you do not have any personally. There is a lot of information out there, and it will take time to figure out what applies to you with your specific experience of PCOS and the symptoms you will have. Please refer yourself to SASH if you would like emotional or practical support on gaining a diagnosis and/or on how to manage your PCOS symptoms.
A: My one piece of advice for people looking to be diagnosed with PCOS is to push their GP to get both the blood tests AND the ultrasounds – my diagnosis would not have been found out if not for the vaginal ultrasound! Furthermore, be sure to follow up with your GP about any concerns you have, as PCOS can oftentimes be a confusing diagnosis– I have spoken with mine at least 2/3 times since to clarify a couple of questions that were not addressed in my initial diagnosis phone call.
What now?
While there are marked improvements, PCOS still requires more awareness and support from health practitioners and in society, which we can see from a lack of research and resources available. By bringing awareness we at SASH hope to see quicker and more improved experiences of diagnosis and support around living with PCOS for all!
Need support
If you are struggling with your PCOS symptoms or need support with gaining a diagnosis, SASH can offer you support and advice. We offer counselling and coaching to offer emotional and practical support in relation to PCOS and managing symptoms. We also offer a chaperone service for appointments and can help advocate for our clients.
You can get support from SASH here.
Related sources:
· Verity