PCOS story: Dr Amina Hersi

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Photo of Dr Amina Hersi aka The PCOS DrHi everyone – Amina here. I am a general practitioner (GP) and supporter of Verity PCOS charity. I was diagnosed with polycystic ovarian syndrome (PCOS) around 7 years ago.

I had a long path to diagnosis, unfortunately, that is not unusual. I was initially diagnosed with an under-active thyroid. The symptoms of this have a lot of overlap with PCOS: I had irregular periods, weight gain and problems with thinning hair. Initially, my thyroid was thought to be the culprit. So when I started medication to replace my thyroid hormone I was expecting my symptoms to be reversed especially the 10kg I had put on in only a few months.

It was frustrating, to say the least, and I found myself eating less and exercising more to shed the pounds. This led to unhealthy behaviour regarding my weight especially restrictive eating and excessive exercise. I was unaware of the association between eating disorders and PCOS. I found myself doing more and more drastic things to lose weight that were unhealthy and damaging to my body.  This behaviour and the stress of medical school led to another mental health manifestation of PCOS: anxiety. I developed severe anxiety and panic attacks were happening multiple times a day. My anxiety was so overbearing that I lost hope of ever feeling ‘normal’ again. 

I decided enough was enough and I tried to be kinder to my body. This unsurprisingly led to sudden weight gain. It seemed no matter what I did I could not shift the pounds.  I had a routine blood test done abroad and my fasting glucose came back ever so slightly abnormal. The rest of my trip was overshadowed by the fear that I was diabetic. As soon as I returned to the UK I made an appointment with my GP. 

One of the first things he said was “you are overweight”. “I know” was all I could say. But I explained that I was active, that I didn’t eat excessively but I could just not shift the weight. I’m not sure he believed a word I said and I just felt very blamed.  After explaining PCOS was a worry, I had my pelvic ultrasound.  Only one of my ovaries was polycystic but this along with my irregular periods and signs of insulin resistance (thankfully I wasn’t diabetic) meant I was formally diagnosed with PCOS. 

Even though I knew about PCOS and had some background knowledge, my diagnosis brought endless tears. Unfortunately in medical school, we were never taught about how PCOS can affect each individual so differently. I believed I was infertile and no amount of facts could convince me otherwise. 

I had a close friend who was diagnosed at the same time. But our symptoms were so different, she had none of the weight gain. Her periods were frequent and mine were sparse. She had acne whereas I did not. This was when it became clear that people have such different symptoms and it wasn’t a case of one size fits all. 

Once I was diagnosed I was started on the contraceptive pill to regulate my cycles. This, however, just seemed to make things worse. My mood, in particular, was very sensitive to the pill and I decided to stop.  Not long after this, my GP started me on metformin and I lost weight very quickly. Unfortunately, the side effects of abdominal pain, nausea and vomiting were just too much for me to cope with so I stopped this too. 

Here we were again at another impasse. I felt stuck, destined forever to be overweight with no way out. So I went back to the GP and this time I asked to see a specialist. I felt my thyroid and PCOS were having a combined effect on my weight problems and it left me feeling so exhausted. This is when I saw an endocrinologist. 

He was a pleasant doctor but he gave the impression that I would only need him if I was trying to conceive. It was disheartening to hear him say “if you continue to gain weight you’d be close to qualifying for a gastric bypass”. This is not what I wanted to hear from a doctor. I didn’t want an operation to be the only way out. 

Around this time I was completing my training to be a GP and I started looking into the work of Dr Jason Fung who advocates for lower carbohydrate diets in insulin resistance. His book the obesity code just made sense. He highlighted how insulin is ‘obesogenic’ (i.e. causes obesity) and that weight problems with people who are insulin resistant are not their fault. I felt vindicated, for the first time I accepted that things were not my own doing. With what we hear and see on social media and even from our doctors. Obesity is considered to be a problem for the gluttonous and the lazy. But in PCOS it can be SO INCREDIBLY HARD to shift the pounds. It can feel like a losing battle. 

I had a lot of success with a low carbohydrate, high protein diet. I have fallen off that wagon so many times but we are human and health journeys are full of peaks and dips. Reading about insulin resistance triggered me to read more about PCOS.

Now that I work part-time, I have been able to study more about PCOS. Social media is a place a lot of us look to for inspiration and guidance. I saw so many pages with large followings about gluten-free and dairy-free diets for PCOS. Some of these pages were selling supplements too and I saw that sometimes they gave out advice that was potentially dangerous. 

This is when I decided to set up my educational Instagram page: @ThePCOSDr. I wanted to make posts that had information about the many questions I would come across online. I wanted my page to be evidence-based and so I often spend a lot of time researching things before I post. Having my medical background and being a PCOS sufferer means my content has a good mix of both perspectives. 

Here are some of my favourite resources that I have used when researching:

I hope to continue making posts on PCOS to make other people’s journey’s a little easier.  I always recommend doing your own research too. It is crucial if you want to understand your PCOS symptoms and how to improve them. I hope the resources above will help you with that quest for knowledge.

I have been on the receiving end of the classic “lose weight and your symptoms will improve” advice but this is easily given but not easily achieved. Furthermore, there are people out there with PCOS who do not have weight problems. 1 in 10 women will suffer from PCOS and that means there must be people out there who are undiagnosed. Diagnosis is half the battle as you can’t fight a condition you don’t know you have. 

This condition is more than irregular periods, acne and hair problems. It is related to diabetes, fertility problems, endometrial cancer and heart disease. Education is so crucial if we are to prevent serious complications of a disease that many view as harmless. That is why Verity is doing important work in raising awareness.

I want to advocate for PCOS sufferers to my colleagues in medicine too! For us to recognise and discuss this condition properly with our patients. Having PCOS and managing it is a journey and I am still on my path to wellness. I have come across some great information along the way and I aim to share it with you all. 

With love 

The PCOS Dr.