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What It's Like Living With Poland Syndrome

I’m going to share with you all a very personal story that I haven’t shared with many people before. But I hope sharing it will help other people and bring recognition to a condition that many haven’t heard of.

Growing up I knew my body wasn’t “normal.” When I hit puberty my breasts were an odd shape and size. My mum always said to me “all women’s breast are uneven, yours are nothing different.” But to me I felt they were different. My right breast was about two sizes smaller than my left and had a concave area at the top, but I just learned to live with it because all women’s breasts were different shapes and sizes.

There were times I was teased for it. Never directly to my face; it was always behind my back or behind giggles and snide remarks. Particularly one pool party in year seven where we were all playing a game and I was joining in, until I noticed the attention was on my chest. I felt so uncomfortable I got out of the pool and promptly got changed.

I tried to avoid swimming sports in high school, but I enjoyed swimming. My mum did buy me bathers that didn’t show my breasts as much, one had ruffles on the chest or pleating so when I got out of the water the bathers didn’t stick directly to my chest, so it wasn’t as obvious.

I remember my mum making an appointment with a plastic surgeon with me, but after the first appointment we never went back again. It just cost way too much to be even thought about. Having grown up on a farm there were more important things to use the money on.

My boyfriends would notice it when we first got intimate and I would have “the talk” with them about how “that’s just how I was.” I used tissues, toilet paper, shoulder pads or foam padding to fill the void in my bra. I could never wear low cut tops or bring myself to being topless in front of anyone. My cleavage just looked deformed from the concave effect in my chest. I was never someone for flings or one night stands as I was ashamed of my body, and the thought of having to explain that was just the way my body is, terrified me.

Years down the track I was taken on as a BDSM submissive trainee. My trainer became curious about the reason my body was developed the way it was and did research online. One day she mentioned she thought it was something called Poland syndrome. Poland syndrome is described as: a birth defect characterized by an underdeveloped chest muscle and short webbed fingers on one side of the body. Short ribs, less fat and breast and nipple abnormalities may also occur on that side. Well, I had the breast abnormality, but not the short webbed fingers, and one side of my body was always muscularity smaller.

Now I was armed with this information of what it could be I went in search of information. I started reading online all I could. I searched Facebook groups and came across a Poland syndrome support group. I actually made some connections with two lovely ladies who shared with me their knowledge and experiences of what they had gone through. I felt relieved that I wasn’t alone. One of the ladies suggested I speak to my doctor about getting a referral for reconstructive surgery with a surgeon she had used in Melbourne. She said she had hers done via Medicare and the only expense to her was if she required pain killers. Medicare would cover the costs due to it being reconstructive (medical) and not just cosmetic for looks.

I had to wait four years on an elective surgery waiting listing through a public hospital until my name came up. By the time my name came up I was seeing a guy I had been with for two years, and he was supportive of me going ahead with the surgery. After meeting with the surgeon it was decided I was to get an implant in my right breast first, let that settle and then get a breast lift on my left.

Although I was nervous about the operation I was also looking forward to it. The one thing I was looking forward to was about to happen. I was full of nerves and anxiety but it happened.

After the surgery I wanted to get back into exercising, and I think I started back too early. The sweat which formed on my bra from exercising caused an infection. One which caused a hole where the stitches were and weren’t nice at all. I contacted the surgeon directly and voiced my concerns and asked me to come back for a check up. From there another surgery was arranged to cut the infection out and stitch it back up. This time I knew the importance of recovery time and allowing my body to heal. I tried so hard to let my body heal as it was meant to without worrying about getting back into exercise (as hard as that is). My scar is there however it isn’t visible unless I am upside down.

Eighteen months later I get another phone call from the hospital. They were ready to do the breast lift on my left side. The night before was the whole no sleep, anxiety-riddled experience just like last time. The silly thing is we were on the way to the hospital and we received a call to say an emergency case came up and they had to cancel mine. Now I wasn’t upset about this. I was glad that my case could be rescheduled for someone who obviously needed my surgeons time more than I did. My surgery was then rescheduled for the following month. This time it wasn’t rescheduled and I was in and out if hospital over night. I currently have some great looking bruises on my breast and I’m hoping the scar will heal better than the one on my right side. Fingers crossed for no infections this time and I’m definitely not going to push my body back into exercise too quickly.

Now I know my breasts won’t be exactly the same. The motto I have been using is “they are sisters, not twins.” But the first surgery did help me with body confidence. I’m hoping the second operation will only make it better. I look forward to wearing unpadded bras and feeling better in myself wearing the kind of cleavage showing clothes I have always liked or bathers without being worried about how it will cling to me when I get out of the water.

To anyone out there who thinks they may have Poland syndrome please feel free to message me to talk about it. I am happy to point you in the right direction. Also anyone who would like to talk about breast implants or a breast lift, I have now had both so I would be happy to speak about this also.

Getty image by nadia_bormotova

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