Polycystic Ovary Syndrome - Ace's Story


A syndrome related to the female reproductive area is still a taboo thing. We need to open a discussion about PCOS and talk about this. We, as women, need to discuss how our emotional and physiological pain are valid. If we don't, we suffer without a cause.

As I write this I have now been bleeding for 43 days straight. Not heavy bleeding but all my pants are ruined. It's the main reason why most of my underwear is simply black. For the last four days I've been bleeding more heavily. My face is on fire. My skin is raw and flaky. My blood sugar tends to go up and down so in the middle of the day all my energy is drained. My stomach is bloated, my body is retaining water. My mind is all over the place.

It makes me feel like I'm going insane. It makes me feel like I have no connection to my body, it makes me feel like I'm imagining every pain and every emotional drop that I have. It makes me feel like my body and I are not speaking the same language at all, like we are two people in the same room trying to make it work without understanding or really liking each other.


One day I wake up bloated and I take a shower and loose a handful of hair just by putting in conditioner. Another day I will go to sleep with so much anxiety that I shiver. My nipples hurting and my mind craving food even though I just ate an hour ago.


To sum it up, most of the time it feels like my body and I are in a very ill-fitted marriage. We try to make it work, but we probably should get counseling and think about us first and the children later.


The reason for all of this is a syndrome called PCOS.



WHAT IS PCOS


Polycystic ovary syndrome is an endocrine disorder whereby polycystic ovaries are one of an array of possible symptoms caused by an underlying hormone imbalance. The term describes ovaries that have a lot of small cysts located just below the surface of the ovaries. The cysts in polycystic ovaries are not in fact true cysts. They are not filled with fluid, they do not get bigger or burst open, they do not need to be removed and they do not lead to ovarian cancer. They are simply the follicles that have not matured to be ovulated. All of this makes the name of the syndrome very confusing. First, it was thought that these cysts were causing the conditions but now we know that they are one of the symptoms and not everyone that has PCOS have cysts.


In short, PCOS affects the way the ovaries work in relation to one's hormones. The symptoms vary but one of the major factors is irregular periods. This occurs because the ovaries are not releasing eggs.

New research shows that the syndrome may be triggered before birth by excess exposure in the womb to a hormone called anti-Mullerian hormone (AMH). For the ones that got PCOS; most likely you got it from your mama.


PCOS affects up to one in five women worldwide.


ONE IN FIVE WOMEN.


Let that sink in.





Let's go deeper into the symptoms.


Excessive facial hair growth and/or loss of scalp hair caused by excess testosterone:

Society has a lot of expectations of women's hair. Not too much, not too little, not here but there and there. It should be thick and glossy on the head, non-existent under the arms. I personally have always been quite emotionally attached to my hair. I wear it long and it is fine but thick. When I have my bad PCOS episodes it starts falling out to the point where it becomes thinner. This has happened on and off to me since I was a teenager. My doctor suggested that it was stress. It is indeed very stressful losing a handful of hair just by washing it in the shower.


Weight problems:

Such as rapid weight gain and difficulty losing weight at all. This is something that has been a big ongoing thing for me. Especially during and after puberty. I pretty soon realized that I couldn't eat as much as my peers without instantly gaining weight. Being surrounded by constant body-shaming didn't help my body either. Fat appears quickly and stays intensely on my body. Working out and eating right helps of course but only to a little extent. The PCOS not only stores fat at a great rate but also makes you crave food, especially sugar. This is in relation to the effect that the syndrome has on the insulin levels in the body. Which then leaves the blood sugar levels rocking up and down. The hormonal imbalance and the insulin rocking affects the gut as well. Resulting in random stomach cramps, acid reflux and a frequent bloated tummy.


The PCOS not only stores fat at a great rate but also makes you crave food, especially sugar. This effects the insulin levels in the body which leaves the blood sugar levels rocking up and down.

Oily skin and acne:

I've never really struggled with acne, my face breaks out very quickly if I do stray from my strict skincare routine. But I can't say that acne has been a proper downer in my life. What has been a downer for me is flaky skin. This affects my T zone. The skin starts feeling a bit raw and then it starts to burn through the day, it slowly starts to peel off. It hurts and it's very visible.


Mood swings, energy fluctuation through the day, depression:

Throughout the day I wonder what of my emotions are my own and what is actually caused by my hormones thinking they are going into PMS mood. Not that those are any less my own, they sure do feel like my own. But often when I feel a quick rage surface or a deep sadness, I do wonder what to do with it. How do I try to understand and psychoanalyse something that can be, in the large part, caused by something that's happening more within my body than within my mind.


When I feel a quick rage surface or a deep sadness, I do wonder what to do with it. How do I try to understand and psychoanalyse something that can be caused by something that's happening more within my body than within my mind.

I've often had times of deep sadness, it hits in waves. After being diagnosed with PCOS I have a better way of understanding of when my sadness is from my soul hurting and when it's perhaps more from my body hurting (even tho it's very much all connected). When I get sad these days and low I first start talking to my body. Is it swollen? Am I loosing more hair than usual, is my skin hurting, are my ovaries sore? If my body is calling out with the symptoms of a bad PCOS episode, it's easier to tackle some of it in ways that help me be less hard on myself.


It is, for example, hard to feel my random anger pop up and feel myself losing my temper with people I care for. Then only see a bit of blood in my panties and not counting that as a period, meaning I then feel bad about not being patient with my loved ones. Now I know better and it soothes my guilt.


I've always been quite manic, experiencing ups and downs. It's hard to pinpoint it to one thing but looking back PCOS has definitely had something to do with my swinging mood and melancholy.



Last but not least (and not at all the end because there is so much more that this article is doesn't tackle)


Infertility:

Here is the thing that weighs perhaps the most heavily on women with PCOS and that is infertility. This is the part that I never really thought about until I got diagnosed with PCOS. I'm not in a place in my life where I want children. With age, I've started to think that maybe in the future future future I will have one. A part of me feels extreme sadness at the thought that I might have a very difficult time getting pregnant. A part of me is scared to death that maybe I won't be able to. , it even makes me feel like “I am very much useless”. Even tho I know as a woman I don't need to have, or be able to have, children. The thought of all of this still breaks my heart.


Infertility; the thing that weighs perhaps the most heavily on women with PCOS ... There is something in that fear that makes me feel “less of a woman”, it makes me feel like “I don't work correctly”



WHAT NOW?


There is no cure for PCOS, some doctors recommend going on the pill. For me I don't see that as a solution. I don't need to add more hormones to an already hormonally unstable body. And the pill works by making women not ovulate. Which makes that suggestion, which most doctors have given me, absolutely ridiculous.


There is also a drug called Metformin. It usually is prescribed to people with type 2 diabetes. It helps your body process your insulin better. I've tried that twice, both times were very hard on my body and in the end, I gave up because of extreme side effects.


There are ways I've found that help my body cope. I eat healthily and I move my body around. I stretch it and I drink a lot of water. When I see that I'm having a bad episode I take supplements to build up things my body might be needing. I write a journal to take care of my emotions. I talk about my feelings to keep my soul in balance. I've been dealing with this for a long time without knowing it, I've got good training by now. But the thing is, sometimes I just want to fucking say I FEEL ABSOLUTELY HORRIBLE.


The idea that females are hysterical, especially about their own bodies, dramatizing their experience with fake expressions of pain and distress is still an idea that is alive and normalized in our world.

It's a circus act, a ridiculous balancing act, trying to be real with your own thoughts and also trying to keep yourself positive so that you keep doing your best at taking care of yourself.

It's weird to see how a lot of my health problems are completely normal to me. When in fact they are not normal, they have, are and will inhibit me in multiple ways.


PCOS affects 1 in every 5 women.


I want you to think about that. Had you heard of PCOS before reading this article? I hadn't heard of it before a year ago. Why not?


HOW can a syndrome that affects so many women be so unheard of? I don't have the answer to that. I do however have my own thoughts about that. A syndrome related to the female reproductive area is still a taboo thing. It isn't talked about as much. It isn't a nice subject, it isn't pretty. The idea that females are hysterical, especially about their own bodies, dramatizing their experience with fake expressions of pain and distress is still an idea that is alive and normalized in our world.


We need to talk about this, we need to open a discussion about PCOS. We as women need to discuss how our emotional pain and physiological pain are valid. If we don't, we suffer without a cause.


Written by Ace

Illustrations by Edda Karólína (@eddakarolina)

Ace (@aslaugsifgudjonsdottir) is an Icelandic photographer/writer that lives in London. In her work, she focuses on the female body and the female experience as an every changing landscape of emotions, memories, and power. Alongside her solo projects, she is also the co-founder of @unprettyzine.

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