Chelsea's Endometriosis and Adenomyosis Story
By Chelsea Timandi
Yes, I’m a teenager and I have Endometriosis and Adenomyosis.
My name is Chelsea Timandi, I’m 16 and I have Endometriosis and Adenomyosis.
All my life I haven’t had the most amazing health. I had my tonsils out when I was 4, scoliosis treatment with a brace up to the age of 13 and my first period at age 10. For ages I was told that I would probably get my period when I was around 12-13 because that's the average age, but I got it when I was 10 and still in primary school. I didn’t tell anyone for a while because I was extremely embarrassed and had no idea why I got it so early. I still remember when I was in year 6 I went to my friends house and I was bleeding so heavily I bled on her couch. For about a year I didn’t have any pain but I had extreme bleeding which I still do. In year 7, I remember I had my first memorable period pains that I had to walk around hunched during a presentation we had to do and I went to the bathroom and cried for a while because it was so bad and I didn’t know what was happening to me. I just told everyone I had a stomach bug, but even back then the pain went throbbing down my legs and back and made me extremely nauseous. While this continued, in year 8 and 9 every time I had a period I had to wrap my jacket around my waist because having 3 pads stacked up wasn’t enough and I would bleed through my uniform every single time.
In 2016, I was 13 and my family and I went to Europe. This time, I didn’t have my usual ridiculous 6-7 day period, it lasted about 3 weeks. We were thinking that I had to go hospital in Dubai to get my appendix out. I was extremely nauseous the whole time of the trip and bleeding still, extremely heavy and now the new symptom of stabbing that went from the right side of my pelvis down my whole leg. Every time I spoke, laughed, moved or walked it would happen and I had to lie flat on the bed to avoid it. When we got back to Australia my mum took me to a gynaecologist at my GP and who said it sounded like endometriosis. I was 13 at the time, and she questioned me about being sexually active! We then saw a specialist and tried about 10 different pills with her and nothing worked, of course, including the implanon in my arm which did nothing. It was getting to the point now that I bled every single day and had a flare up every single day. I went to work at the time, McDonalds, and I was in so much pain, every chance I got I squatted in the corner with my head in my legs or I would tear up while I was serving people because I was in so much pain.
It was then time to see a new specialist because it was getting insane, I was missing 2-3 days off school every week and I honestly felt like I was dying. My dad found my amazing specialist, Dr Graham Tronc, online and I went to see him a few weeks later. On his website it said he also diagnoses women with adenomyosis, something I’d never heard of and from research it said only women with children can have it so I was in denial. After minutes of listing my symptoms, Dr Tronc scheduled a laparoscopy and a hysteroscopy 2 weeks later (8th of November 2017). I was then diagnosed with endometriosis, only a little was found and he suspected adenomyosis, as my uterus was much larger than normal. 1 week later I was diagnosed with adenomyosis by MRI.
Although I don’t have much Endometriosis, my adenomyosis is very active and you can have little endometriosis and have the drastic symptoms I have or stage 4 endometriosis and feel nothing. It's different for everyone. Getting diagnosed was the biggest relief for me but also horrible at the same time. 2 months after my first surgery, the pain got really aggressive again. My specialist suggested it was my Mirena settling in which makes sense, but 6 months later it was just getting worse and worse. It got to the point I was taking panadeine forte, tramadol and endone every single day and again, barely going to school. From all of this, I developed quite severe depression. I don’t know anyone like me who goes through everything I do and still goes on with life acting like everything is ok when in reality, its been the hardest years of my life, its mentally and physically the most exhausting thing a women in my situation will ever have to go through. I’ve had extremely high pain tolerance and have my whole life. I’ve fractured things in my ankle and thumbs and don’t even cry, I pretend it didn’t even happen but the pain with endometriosis and adenomyosis is the most excruciating pain I've ever experienced in my life. It wakes me up in the middle of the night, its the only type of pain that makes me cry and scream, its made me develop fibromyalgia, I feel it in every single part of my body when its happening, the only thing that can help it is a good dose of panadine forte, tramadol etc to just knock me out.
On the 25th of April this year, I had surgery again, saw that adhesions had sprouted all around my pelvis and my uterus being extremely sensitive. My specialist said as soon as he put a tool on it, it started contracting, so the mirena was a big no. ever since that surgery I feel so much better. I don’t get as many flare ups, however I still do bleed everyday, cramps everyday but I’ve gotten used to it. Fatigue, nausea, whole body pain are all a part of it I've learnt to accept. I've had a hard time at my school dealing with the affects of having these diseases. I face lots of discrimination and judgment by teachers. None believe I have a right to take the elevator instead of the stairs simply because they cant see my pain. I’ve gotten screamed at by many teachers asking to explain why I’m so sick that I have to be in the elevator and they cant see it so I shouldn’t be in here. I also have people use it against me, and say that I use my diseases as an excuse to stay home, and I’m ‘very high maintenance’. Yes, I am ‘high maintenance’, but I’m sure anyone who’s going through the extremes I am at age 16 would be too! I’m never a girl to ask for sympathy, anyone who knows me closely knows that. I always hide my pain rather than show it. For girls like me, its more pretending to act ok rather than to act sick. And I will never stop spreading my word about these diseases because I know how incredibly strong girls like me are, no matter the judgement I get from people who will never understand the extent we secretly go through.
Teenagers most certainly are affected by these diseases. This is my story as a teenage girl with Endometriosis and Adenomyosis.
You can follow Chelsea on Instagram here
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