Anastasia’s PCOS story
“Why does it all hinge on weight loss when the weight is a symptom not the cause?”
Too young for a diagnosis
Anastasia had always suspected that something wasn’t right but spent most of her youth trying to hide from her symptoms. At age 19, a friend had mentioned to her that her hairy arms could be a sign of a hormone imbalance but she was loathe to get it checked out while living in Greece.
“If I managed to get a GP appointment there, it would be for an acute thing and not for being hairy. It’s also just not something that’s pleasant to discuss – how hairy you are. I didn’t know who to go to and I didn’t even want to discuss it with my parents because I felt like they wouldn’t understand”.
So, for many years, Anastasia managed her symptoms by herself and went onto the pill. Eventually, by this time living in the UK, she did go to a GP but she was told that she was too young to be seeking a diagnosis and she should come back if she found it difficult to conceive later in life. From this point on, she fought an uphill battle to be heard and have her symptoms looked at seriously.
“What’s it like to feel hungry in a normal way?”
Anastasia did go on to have two children but she continued to have PCOS symptoms, such as unwanted hair, weight gain and exhaustion. However, because she had conceived without medical intervention and she had a regular cycle, PCOS was repeatedly discounted as a possible explanation for what she was experiencing.
“They told me with absolute certainty that yes, I was seeing symptoms of PCOS but I didn’t have PCOS. That sums it up nicely because if you don’t have problems with an irregular cycle or excessive pain or with fertility, if you’re not actively trying to conceive, they don’t want to address it. It begs the question why? Obviously, having children is a massive life choice and a big loss if you don’t manage to have the kids you wanted, but it’s a health issue that you have to live with whether you have kids or not”.
After her second child, Anastasia’s symptoms became a lot worse and she was struggling to manage.
“I didn’t have a sweet tooth in general, but the need for sugar around 4pm was so bad that if I didn’t listen to it, I would be on the floor dizzy and sweating. It was only when I monitored my blood sugar while having gestational diabetes that I understood what had been happening all those years. One minute you’re not hungry, five minutes later you’re hungry, ten minutes later you feel like you’re going to die. It’s very fast and shocking. I’ve had to walk out of meetings. I’ve had to crawl out of bed because I was shaking and sweating so much I had to have a spoon full of sugar. It affects my energy and my ability to interact with my children, I’d fall asleep on the sofa or bring them home from school and be unable to cook dinner. I would be constantly exhausted. Then I was on antidepressants for a while and the ones I was on had the side effect of normalising blood sugar levels and I wondered if this was what it was like to feel hungry in a normal way?”
Getting a diagnosis
Anastasia went back to the GP and demanded further tests. By this point in her life she felt that she was better equipped to advocate for herself, she had done lots of research and she knew what to say and what to ask for. This wasn’t something she would have felt able to do in her 20s. So she was finally sent for an ultrasound that confirmed she had PCOS. By this time she was in her late 30s.
Unfortunately, Anastasia’s diagnosis has not led to treatment that works for her.
Just an aesthetic problem
Anastasia isn’t able to go back on the pill because of her family medical history and has therefore been told that the only way to manage her PCOS symptoms is to manage her weight.
“I used to manage my weight in a host of different ways which having young children has made impossible, including keeping my stress low or eating intuitively, whereas now I have to cook three meals a day and I’m very stressed and tired. With all those factors by which I managed my weight before being taken away, it’s become impossible to feel healthy and I’ve been pondering what to do about it for years because my GP said I wasn’t big enough for metformin. I don’t feel like I should wait until I’m obese to get treatment. So now only very restrictive diets work which have their own draw-backs and I’ve been stuck between a rock and a hard place.
“I understand that many people have worse PCOS symptoms than me, but I feel like the system has turned it’s back on me because it perceives my problems as aesthetic. But being overweight and having hair on my chin I feel are real markers of not being feminine and growing up with these things, I would conceal them, deal with them quietly and feel ashamed of them. So the question is why are these things dismissed as aesthetic when it’s well known that they tie in with depression and anxiety, and poor blood sugar management that can lead to diabetes? It’s a precursor for a lot of other things and a precursor for fertility as well. Why not address these things early?
“Even when I was referred to a lifestyle advisor rather than just a weight loss service, she said that she didn’t have much advice for how to live with PCOS apart from that it’s really hard. She advised that she could recommend restrictive diets but it’s unlikely I’d be able to stay on them. So when everyone just agrees that it’s very hard but it just is what it is, what does that mean for me? Am I just an inherently broken, flawed person who is stuck in this body that is working sub-optimally?
“The only solution ever given was the pill and this seems like an option just for your youth. I didn’t even know what it did. I just thought I was in a better time of my life, particularly in terms of my physical appearance, and going off it reversed a lot of that. This is why I’ve been asking to see someone and find a solution for me now, but it seems that living with reproductive health issues is just a given for women. If you have them, you just have them. Because if it’s natural for Eve to give birth in pain, it’s also natural for you to be in pain on your period and have menopause. All of these things are natural and therefore unimportant. There’s a lot of things that we’ve made better for humans, we’ve given ourselves shoes, we’ve given ourselves chemotherapy and operations that save lives so why is it just natural for women to be in pain, to feel uncomfortable in so many different ways?”
“I just want to feel human again”
Having not received the help she wanted from her doctors, Anastasia has been experimenting with natural remedies and supplements to find a balance that she feels is working for her.
“I recently started an inositol supplement that I’d heard mentioned before but didn’t take seriously to begin with. I immediately noticed that it curbed the intensity of my cravings and the extreme highs and lows of blood sugar management in such a way that I ended up following up and finding the right dose for me. I’ve been wondering since if this is how other people experience hunger? Is this how other people experience their bodies? And if so, what a cruel joke for a GP to tell me to limit carbs and do more exercise when they don’t know what it feels like to have an impending feeling of doom and weakness every day at 4pm unless you have sugar. What a cruel joke to put it down to will power when there’s the experience of never having any energy or just a general sense of confidence in your body’s relative stability. Using a supplement has made me wonder why there isn’t a service that helps you to try and test all these different things that might work for you, to try to give you the experience of a person with a metabolically stable body. Why does it all hinge on weight loss when the weight is a symptom not the cause?
I feel angry that I had to live like this and just be told to lose weight without understanding that if I don’t eat I feel like I’m going to die. I can’t talk or move. I felt locked in a pattern of walking uphill and never getting to the top. I hope that the effects of the supplement last because it’s actually life changing to be able to just feel hungry and eat maybe an hour later rather than going onto red alert and needing to eat immediately so you don’t pass out. I finally feel human again.”
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