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I wish I had known about Endometrosis sooner!

At the age of 13, I felt something was not right with my body. I kept complaining of sore back, leg pain, thigh aces, bladder pain, sore calf muscles, bloating and feeling emotional. I told my mum – my back hurt so much! Mum had no idea what was happening to me. One day I realised that I have my period. I told my mum of what I was going through and she clicked that my back and other pain could have been related to my period. Due to lack of knowledge and education back in school, I had no idea what my body was going through. The pain started getting worst month by month and my second period continued for 15 days. I felt as if I had no energy to walk and do anything, yet I had to go to school. Over the months my period cycles were irregular, and I would bleed for so many days. I have had constant bleeding for 32 days and I could not tolerate the pain level. I felt horrible and helpless. I had to attend school and was not allowed to take days off. People thought I was normal, and nothing was wrong with me but inside of me knew what the heck I was going through. I was being told by people that pain is normal, and I felt embarrassing leaving class as everyone would know that I have my period and I am in pain. One day my parents took me to our family doctor who gave some injection to stop bleeding. Till today I don’t know what that injection was, but it did stop my period. Once my family Dr prescribed me of birth control pills with the intention to help regular my periods. After few years, I figured out the actual purpose of BCP that I was taking to regular my periods. There was no education and learning at school on this topic. I started putting on some weight and my periods continued to be heavy. I used to be anaemic all the time and was also give Iron injections on a regular basis. My parents were so worried, and this is something we could not discuss with any other relatives or friends in society as period problem is considered something major in our community especially back in those days. I believe it is still something people don’t openly talk about! Why not? It should be openly discussed and there should be awareness. When I turned 16, my parents took me to a gynaecologist who suggested an ultrasound scan (external scan), not internal due to my age being 16! The scan results were normal. I was again put back on BCP (just a different brand). Pills were giving bad many side effects, so my parents took me to different specialist who changed the medication (again BCP, just a different brand). Here the Dr told my parents that once I have kids, this problem will go away and that it is very normal in growing girls. The side effects continued, and my mum could see that the medications were not helping me, so she asked me to stop the medications. In these many years, Doctors never mentioned what the side effects would be! It was mum who could see my body was not right. I have had the worst teenage life. Best years of my life were spent in stress and pain. Constantly thinking about when my next period will be! I could not make any plans. Well! this is a story of my life. It is still the same I moved to NZ in 2004 and the period problem moved with me too☹ Here is NZ, It took number of GP visits, number of ambulance call outs and after hours visit (due to very bad period pain) before I was referred to a gynecologist in 2006. After few months of being on BCPs, specialists then said that I may have “ENDOMETROSIS”! What? Endometriosis! never heard of this term before. He gave some pamphlets to read and booked me in for surgery (Laparoscopy) . 2007 was when I had my first surgery and few Endometriosis were removed. Nothing changed for me after the surgery. I also went with IUD option (Mirena) but the Mirena was taken out after a year as it was causing really bad side effects with constant cramps. Later I was also put on Metformin to help with insulin. I tried so many home remedies, Indian and Chines Herbal medication but nothing worked on me. I am 32 now, and I have had 3 surgeries so far. Employers / organizations have now started to understand and there is little awareness of Endometriosis in NZ. My work is very supportive and has allowed me to work from home when I don’t feel well. The people (including male and female) I am surrounded by, they still don’t know what Endometriosis is or no one is even interested to know what it is. This is not a topic people are even willing to discuss. I just wish I had more knowledge and there was more awareness back in school days. I wish I could easily talk to my friends. Sadly, none of my friends even know what I had gone through or what I still go through. People have said its all in my head, it is my body so rather than complaining I must learn to manage and learn to live in pain. I have often heard “you look fine” nothing is wrong with you! How do I tell them that everything is wrong in my body? I had no idea what Endometriosis could take out of my life. I am pretty much in pain all the time. It just hit me from nowhere. It is amazing how all Endo sufferers put on smile on their face and get on with their normal routine. Only us warriors know what’s hidden behind the scene and the pain that we live in. We are all so brave and strong to fight this battle. I have never given up and I look forward to a new healthy morning every day. Keep Smiling! Don’t forget, your smile makes someone else smile😊

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