Esther, 22, experienced irregular periods for nearly 10 years before she was diagnosed with polycystic ovary syndrome (PCOS). The condition still affects her everyday life, but she’s not giving up her search for answers.
Here, Esther shares her story as part of our “Just a Period” campaign.
‘I started my period when I was 12. It was never regular, but I thought nothing of it. By the time I was 16, I was alternating between being on for a week, then off for a week. I’d had zero period education, so I went to my doctor and was put on the pill.
That lasted a few months but then – due to other things going on in my life - I lost a lot of weight. I came off the pill and then my period stopped completely. I thought it was because of the weight I’d lost, that somehow it was my fault. I always believed that if I led a healthier lifestyle, it would come back.
Gradually, I put the weight back on and two years later, I got my period back. But this time it was a constant bleed for six weeks. I was really worried about the blood I was losing and thought I was ill. Something definitely wasn’t right.
I went to the doctors, and 10 months after blood tests and a scan, I was finally diagnosed with PCOS. But they didn’t give me any information about what the diagnosis meant or any treatment options.
They did tell me it might affect my fertility in the long run, but that didn’t bother me at the time - I was 18, and starting university was my whole world. My period was the last thing on my mind.
I had a constant bleed for six weeks. I was really worried about the blood I was losing. Something definitely wasn’t right
I went back on the pill for a few years, but as I started getting interested in ‘lifestyle medicine’, I wanted to try to get my cycle back on track naturally. So I came off the pill about 18 months ago - then didn’t have a period for six months.
I hadn’t lost any weight this time round, which I thought was a bit odd. I needed to get to the bottom of what was going on, so I went back to the doctor. They asked me why I thought I had PCOS! It turns out my initial diagnosis had been dismissed by the NHS; I’m not sure why.
Months of being referred for scan after scan followed, but in the meantime I got my period back so I didn’t know if I needed a scan or not - no one could really tell me what was happening.
Plus, as a student, I was bouncing around different addresses, so my referral letters were often sent to old addresses or my home address instead. I got lost in the system.
Today, I have a copper coil fitted but it’s purely for contraception. I still don’t get regular periods, just a lot of spotting. It’s so annoying!
I do triathlons and swim a lot, but I never know if or when I’ll bleed. When I’m planning holidays, I’ve got to pack for every scenario. And I still ruin all my underwear.
I know I need answers, but it’s really difficult trying to see the same person for each appointment. It takes so much time to organise, it’s exhausting. And the onus is on YOU to sort things out.
I keep meaning to go back to my doctor, but I’m worried about being dismissed all over again
I’m tired of getting my hormones tested, but no one can tell me what the results actually mean, or being referred for yet another scan. It feels like the knowledge about PCOS just isn’t there.
I keep meaning to go back to my doctor to talk about treatment options, but I’m worried about being dismissed all over again. I know it’s going to be hard work, which puts me off. It’s a nightmare.
In the meantime, I’ve decided to take things into my own hands and do as much research about PCOS as I can. Unfortunately, I found lots of false information about diets and weight loss online - as a 16-year-old I would’ve been really vulnerable to that sort of misinformation. That’s why trusted sources online are so important.
I’m now trying my best to manage my irregular periods through diet and lifestyle. In fact, the whole experience has motivated me to study women’s health. I’ve just finished my degree in nutrition, but the long-term plan is to go back to university and do a masters.
Looking back at my experience, I wish someone had told me PCOS isn’t caused by your lifestyle; it’s something you can just be born with. I’ve never had a ‘healthy’ period, but that’s not my fault.
PCOS is a condition that can be treated - I just hope I can find the right treatment for me.’
If you can relate to Esther’s story, you could have a medical condition that needs treatment. Always see your doctor if you have any concerns.
Find more information and advice in our periods information hub.
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From the moment Zaynah started her period, she experienced severe pain and heavy bleeding that impacted her education. It took over five years for her to get her diagnosis of endometriosis and adenomyosis. Now, Zaynah is raising awareness of the different gynaecological conditions by supporting her friends on their period journey.