Here, Maureen talks about managing the condition, why PCOS needs to be given more attention and coping with heavy menstrual bleeding due to fibroids
During my teenage years, I didn’t realise what was going on in my body and I was unaware that I probably had polycystic ovary syndrome (PCOS).
I had noticed that my periods were slightly irregular, but I wasn’t comfortable talking about it with my doctor. I had some facial hair and acne but it wasn’t severe. I started gaining weight in my 20s, having been an active and slim child. There is a lot of stigma surrounding PCOS and weight, but people of all sizes can have the condition.
I realised I had PCOS after reading about my symptoms in a medical book at my local Waterstones. I pieced it all together. I went to the GP and got blood tests done and I was told at 29: “Yes, you have PCOS.” The name polycystic ovarian syndrome – the word cyst scared me because I thought: “Do I have ovarian cancer? Do I need to have the cysts removed?” I now know ovarian cysts are different to PCOS. I was given the combined pill, but it just made everything worse for me and made me gain weight. I know it helps many women, but I felt bloated and had pains in my legs.
I was married at this stage and realised there was an issue with my fertility because we were trying to conceive and not having any success. But my weight then became the barrier to accessing fertility treatment on the NHS, because my BMI was too high. I felt blamed but now I know the condition causes weight gain and realise that it wasn’t my fault.
As I entered my 40s, my energy levels dropped. I saw an endocrinologist and he was the first person I found who understood what I was going through. I tried metformin to see if that would help, but I found it difficult to get on with, so I now use inositol for PCOS, although there’s little research on it.
Then I experienced heavy bleeding due to a fibroid and polyps. The bleeding was so heavy that I couldn’t go out very much. I went to work and came home and was exhausted because of the anaemia. No one tells you about heavy bleeding – how heavy is heavy bleeding? If something’s not normal for you, then you need to ask about it. It can be very debilitating, worrying about your clothing and leaking.
I also had endometrial hyperplasia, which is a thickening of the womb. This can lead to a higher risk of developing womb cancer, and I had treatment to manage this. Not all women have an awareness of the link between womb cancer and PCOS. This is something that we try to improve through my charity PCOS Vitality, sharing information so that people can seek help early. I had two biopsies which, fortunately, were clear, and I had treatment to remove the fibroid and polyps.
Listening to women and understanding their experiences is really important so we can enable a more person-centred approach to dealing with PCOS and fibroids. I say to women: “Write down what’s important for you in your stage of life.” If you’re younger, you might be more focused on fertility, but at my age you might be more focused on general health and wellbeing. Just concentrate on one thing at a time because it can be an overwhelmingly complex condition.
I self-manage my PCOS today by focusing on preventative health. I take inositol, vitamin D, magnesium and selenium. I check my own blood pressure, cholesterol and blood sugar, as PCOS increases the risk of certain conditions, such as diabetes. I still need the odd laser treatment, which has helped me with excessive hair growth, and I take time to look after my mental health and destress. I also do a lot of physical activity.
PCOS is a lifelong condition, which isn’t just about fertility, and that needs to be highlighted – we are women first, and mothers second. I find in women’s health generally, there’s a great focus on obstetrics, and less focus on gynaecological health.
There are some positives to PCOS though. My bone health is above average for my age, so that’s the androgens, known as male hormones, working. And I don’t experience hot flushes. It’s made me a part of a shared community, and it’s taught me the importance of my health and to take care of myself – hopefully I can inspire others to do the same.
For more information about PCOS, visit our information page.
To learn about some myths surrounding PCOS, read our article by Consultant Gynaecologist Miss Lisa Webber.
For International Women’s Day, we are calling for greater awareness and education about menstrual health and period problems, and raising funds through the Big Give’s matched funding campaign from 8 to 15 March. If you would like to donate, please head to our Big Give page.
Update! The Big Give Appeal has been extended until 12pm on Tuesday 22 March. While we have reached our target of £20,000, you can continue to donate and help us to launch our new campaign on period problems!