The Lost Girls - Adeno and Endo in Teens
By Chelsea Timandi
Chelsea's Story of how endometriosis and adenomyosis robbed her of the moments of her childhood and adolescence, and how she's fighting back.
To be a 9-10 year old means playing outside, being with friends, getting involved in active sports and enjoying the last few years of primary school. For me as a 9-10 year old, I got my period, I was sick, I was exhausted and on top of that I was being heavily monitored for my worsening scoliosis. This was the very start of my journey into the abyss of illness and misdiagnosed medical conditions which turned my young life into a whirlwind.
Here I was turning into a woman at such a young age having no idea what was happening to my body. I was very upset and confused about it and felt so insecure questioning why was this happening to me but none of my friends. I was so distressed over hitting puberty so early which I wasn’t prepared for mentally or physically. Girls at school absolutely couldn’t wait, I on the other hand wished it would just go away. My body knew what was about to happen to me and was sending me warning signs and signals that would ultimately completely change my life. I remember from when I was about 7 years old till about 9 I would get excruciating leg and hip pain which at the time we thought were just growing pains. It was so bad I had bags of ice going from my pelvis to my ankles to ease the agony.
The best way of describing Endometriosis and Adenomyosis pain is like having contractions inside your legs as well as your uterus, which I now understand was the pressure from my uterus radiating down. All the girls around me at primary school were still so childlike, girly and playful whereas I was exhausted all the time, couldn’t even run at this point, hated to play any kind of sport and was in complete denial of what was happening to me. Most other girls around me didn’t hit puberty till year 7 or year 8, whereas I was worrying in year 5 if I was going to bleed all over the chairs at school! I was in a constant state of self consciousness not wanting the other kids or teachers to know what I was going through.
My bleeding had become so prolific I would stay up most of the night during my periods to just sit on the toilet and let it bleed because it would make its way all over my bedsheets every night. If I didn’t do that I would still stay up all night and just stand up in my room because I was too scared to lie down. Keep in mind I was 10 years old doing all of this! Just a little girl.
After dealing with 7-10 day extremely heavy periods from age 10 they continued to get worse now with every single month. I was now in year 7 and I will never forget my first memorable flare up. We had an excursion and it hit me and I could barely stand up so I was pacing up and down until I gave up and went to the bathroom and cried and screamed with no sound. It was so excruciating I threw up and it was radiating from my uterus to my knees and back, I was shaking and so weak I sat on the toilet and made a pillow with my bag leaning on the wall until I thought I could get up again. From then on again, it got worse and worse for two years I stayed home every month and the same routine, crying, screaming, not being able to stand, eat or even move. All I had was Panadol and nurofen and it didn’t even touch the pain. It was getting to the point of affecting my everyday life now as an 11 year old girl I couldn’t go to school, I gave up my passion for violin which evolved over 7 years, my education was suffering and I wasn’t caring, I could barely see friends and I was in the hospital every few months.
Fast forward 4 years now after trying the implanon, ponstan, panadeine forte, pill after pill after pill nothing worked and I was getting worse by the day, I had a period that went from year 9 until the end of year 11. Yes, nearly 3 whole years STRAIGHT of a period. This has been the story of my teenage years to this day. I am now 16 and yes I might not get a flare up everyday like I used to, and my laparoscopies have definitely helped but I am still so sick. I now can’t go to the shops, I can’t work, be with friends, family or school without paying for it severely when I get home. These diseases have been so evil to me they have brought on fibromyalgia, depression, IBS and suspected Postural orthostatic tachycardia syndrome. I am now so sick that every time I eat I get shooting pain that makes me want to scream, every time I do any sort of activity I need to rest in bed and sometimes I cry because my whole body is so sore, diseased and weak. The only way I can try to describe it is like I have been poisoned. All I seem to ever remember as a pre-teen and a teenager is fighting with my own body every single day until I breakdown. I constantly have to act and force myself to do normal teenage things to try to continue a normal life but my body simply does not let me. I fight so much harder to do things non-sick people do and then be in agonising pain a few hours later.
Endometriosis and Adenomyosis ruins lives yet we still fight every day to beat it.
You can follow Chelsea on Instagram here
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