PCOS, Adenomyosis and me
1 in 10 women and those assigned female at birth live with Polycystic Ovary Syndrome (PCOS) in the UK, so why do so many women, including myself, feel so alone?
Like Mental Health conditions, not one case is similar, meaning that the condition manifests differently in each person and can be shattering to an individual’s quality of life. At current, there is no known cause or cure.
What is PCOS?
PCOS is an endocrine disorder whereby polycystic ovaries are one display of possible symptoms caused by an underlying hormone imbalance. The term polycystic ovaries describe ovaries that contain many small ‘cysts’ which can be twice as many as in normal ovaries. The ‘cysts’ in polycystic ovaries are not true cysts; they are follicles that have not matured to be ovulated, which is why there is confusion around the condition.
The condition presents many different symptoms including reduced fertility, irregular periods or complete lack of periods, heavy and painful periods, irregular ovulation or no ovulation at all, weight problems including being overweight, rapid weight gain or difficulty losing weight, anxiety, depression and mood changes, acne and unwanted body or facial hair. For some women, they may also experience hair loss or thinning of the hair.
My journey started in my teens, when I realised that something may be a problem, due to the difference in comparison to my friends, in relation to starting my period and ‘becoming a woman’, as such. I had many different symptoms in my teenage years that are normal amongst young people going through puberty, but my period didn’t start until I was 16 and then I had to wait another year until my next bleed. This was quite a stressful time for me, I was aware that there may be something unusual happening but was told by my GP that this was completely normal for someone of my age.
I didn’t have another consultation until I was 21. On the return of some recent blood results, my GP highlighted that there could be a cause for the symptoms I was experiencing and that I needed to go to the hospital for a scan. I had no idea of what to expect and was so overwhelmed by the whole experience. The doctors were incredibly friendly and sensitive, talking me through every step of the consultation and why they wanted to check a few things. I was told at this consultation that I had PCOS.
My Mental Health
Even though having a diagnosis gave me some clarity around the symptoms I was living with, I felt incredibly lonely. It felt like no one understood the intense pain and discomfort I was going through, as for many women, menstrual pain is never nice, and everyone’s pain threshold is completely different. I also struggled with my self-esteem, eating habits and body image issues, as my weight was constantly fluctuating and no matter how hard I tried to diet or exercise, it felt like sometimes this was completely out of my control.
As I grew confidence in sharing what I was living with, I found that many of my friends and people I had gone to School or University with were living with PCOS too, due to the commonality of the condition. Being able to share my concerns with others who understood the complexity of the condition brought some comfort and realisation that I was not alone.
Throughout my late twenties, my mental health started to decline, and I was struggling with Anxiety and Depression. On my journey to become better, I visited my GP to discuss the mental and physical problems I was having, and they flagged that I hadn’t had my scan routine checkup since my prior PCOS diagnosis.
Due to being so unwell, I had neglected my self-care needs and could no longer associate whether my symptoms were related to physical conditions that I have or mental. The doctor at my second scan explained that I was actually living with PCOS and Adenomyosis.
What is Adenomyosis?
Adenomyosis is a condition in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus. Adenomyosis can cause menstrual cramps, lower abdominal pressure, and bloating before menstrual periods and can result in heavy periods. The condition can be located throughout the entire uterus or localised in one spot.
This new diagnosis was very confusing, and I felt quite angry. Why had no-one spotted this before? Was this something that I had caused? Why had no one listened to the problems I had been dealing with since I was in my teens?
However, it did explain a lot of doubt around certain unexplained answers. I find that through my cycle I fluctuate between dress sizes due to the painful bloat that comes with Adenomyosis (or otherwise known as Adenomyosis belly). I struggle with severe swelling around my stomach, back, legs and ankles as a result and the pain becomes so intense that it can stop me from living my day normally around my menstruation week every month.
Life for me now
Now that I am in a much healthier place, I am hopeful for the future. I finally understand that my diagnosis’s over the years, both mental and physical, do not define me.
To take care of both my mind and body, I make sure that I am proactively doing something to support my wellbeing daily. This can be exercise; I personally love to swim, walk, dance, attend workout sessions with friends, or get outside in nature, listen to music, cook good healthy meals (and the occasional baking!) or spend time with family and friends.
I am hopeful that one day, I will have a family of my own and all the hormonal struggles I have been through up until now, will all be worth it in the end.
Help and Support
Verity – The UK PCOS Charity
Women’s Action Network Dorset
Dorset Mind – Women In Mind Support Group
You can also check out further support for stress and mental health here. You’ll find links for 1-2-1 and groups of mental health support we offer here.
If you’re in a crisis, treat it as an emergency. Call 999 immediately or The Samaritans, FREE on 116 123. NHS Dorset’s Helpline ‘Connection’ can be reached on 0800 652 0190. It’s also available 24/7.
Today’s Guest Blogger
A huge thanks to guest blogger Yasmin Brown for sharing her story of how hormone health has hugely affected her mental health.