Beth's Endo Journey

By Beth

My journey with endo started in 2011 when I was 12. I was so excited when I got my first period because I thought I had started to become a woman. Little did I know what a rollercoaster I was about to go on. My first period was extremely heavy and painful. Unsure if that was normal, I went to the Dr and they told me I needed to give it 6-12 months to sort itself out and get into a normal rhythm. I got to 3 months and couldn’t take it any longer. I was missing out on school and couldn’t participate in anything during those weeks when I was bleeding and in pain. I wasn’t able to get out of bed, I couldn’t eat because of the nausea and I just started to shut down. I didn’t want to see anyone and became more and more isolated from the world. I was put on the pill which helped minimally. I was still bleeding all the time and couldn’t get rid of my pain. I then ended up in emergency because the pain was unbearable. I was told it was just an ovarian cyst and I needed to go home. I went home still in pain and unsure of what to do. The emergency room then became my second home. The pain was getting worse and worse and no one would listen. They just made it out like I was insane and there was absolutely nothing wrong. I was just faking it and it was all in my head. I found it hard to keep going and fighting when I just kept getting knocked down. I ended up getting my appendix taken out by an amazing general surgeon who informed me that while operating, he found a very large amount of blood pooled in my Pouch of Douglas and pelvis. At this point I had been bleeding for 3 weeks so thought it may have been because of that. I was very wrong. I was then advised that I needed to see a gynaecologist urgently.

I was seen by a so called wonderful gynaecologist that was apparently one of the best. I got my hopes up thinking she was going to help me. Again, she denied that there could be anything wrong and refused to operate. After sitting in her clinic crying relentlessly because I had lost my life to this pain and bleeding and it had gotten to the point where I was self harming because I just wasn’t coping, she finally agreed to operate but told me she wouldn’t find anything. I definitely wouldn’t have endometriosis. I was way too young. My surgery was booked in and a couple of weeks later, I was back in her waiting room. Results had come back and much to her disgust and dismay, I had endo. I was the second youngest she had ever seen with diagnosed endo. She told me that she cauterised it so I wouldn’t have any more issues. She lowered the dosage of my pill and sent me on my way. If I had anymore issues, I was to just see my GP.

My GP was disgusted with her treatment and referred me to another gynaecologist. Thank goodness for her because I then saw Dr Graham Tronc who performed my third surgery and removed endo from my bowel, bladder, uterus, Pouch of Douglas and fallopian tubes. It was everywhere. He then diagnosed me with Adenomyosis at the age of 13. After my first appointment with him, I felt that the biggest weight had been lifted of my shoulders. He confirmed that I was not actually insane, I just knew something was wrong and needed to keep fighting. To some it seems ridiculous to say this but that man saved my life. Because of him, I got my life back. In the space of 7 years, I have had 12 surgeries, seen every kind of doctor, too many ED visits to count, lost friends and family because they simply just didn’t want to understand nor did they care and I lost the life I used to love to live. I made the choice to stay on this earth and from that point on, I started to get my life back.

Even though I went through hell trying to get a diagnoses, being relentlessly bullied and self harming, I never lost hope. My Mum became my best friend and we walked through hell and back together. We stayed positive even though it felt like the world was against us. Although we were told numerous times it was just in our heads, we kept fighting and we kept positive. Like the saying says, “if you don’t laugh, you cry”. And if we didn’t laugh, all we would do is cry constantly. I managed to find the most amazing guy that has stood by my side the whole step of the way. He took me to my gynaecology appointment 3 weeks after we started seeing each other. It’s a pretty minor thing but to me, that meant the world. The amount of support he has shown has blown me away. I never knew someone could be that supportive and be a teenage male. What we all need to remember though is that it’s ok to cry. We shouldn’t feel ashamed for crying. However, we need to remember that being positive can and does help. Even if we have to pretend or imagine that things will get better, do what you have to do to keep that smile on your face. Treat yourself. Buy that chocolate you normally wouldn’t eat, buy that cute dress that makes you feel confident. Do whatever you need to do. The most important thing we need to remember no matter how bad life gets, be kind to yourself. You deserve it.

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