When I was eleven, my extended family and I were getting ready to go away for the weekend. Getting excited, I thought I had better go to the toilet before we left, not knowing the chaos about to ensue. I looked down and saw red. Confused, all I could do was scream. My mum came running in to find out what was happening. She told me that I was having my period and not to worry, it happened to all women.
At first, everything seemed pretty normal, but as time grew on, not everything was as it seemed. At fifteen, things started changing. The cramps and pain were growing worse, and the flow kept getting heavier as each period passed. Concerned, I went to my doctor and explained what was happening. He told me I probably just had an infection and put me on antibiotics. The antibiotics had no effect, and a month later, I was back again, complaining. I told him the antibiotics were not working, and the pain was growing constant. He changed my antibiotics, which again, had no effect.
Month after month, I would go back and complain that nothing was changing, and month after month, he would prescribe me different antibiotics. After a few years with no changes, my mum suggested we go to a female doctor. At the first visit, my new doctor listened and sent me for tests and ultrasounds. Nothing came up in the tests or ultrasounds, but after consulting with another doctor, they said there was a chance I had something called endometriosis. She referred me to a specialist, and he decided that I would undergo exploratory surgery. They found that I did, indeed, have endometriosis.
A lot of the pain is usually during your monthly cycle, but mine was constant. After they rid the cysts and lesions from where they were scattered inside, we all sighed with relief, thinking that the worst was over. We were wrong. Two weeks after surgery, I started bleeding again, but it didn’t stop. Months passed, and different medications would not stop the bleeding, until finally we found a contraceptive pill that worked. The pain never left. It was just growing more intense as time went on. Struggling to get out of bed, I would call into work sick. Months went by with more doctor and specialist appointments, with them shaking their heads and not knowing what to try next.
Eventually, my specialist decided we should try inserting a Mirena. A Mirena is an IUD that gets inserted into your pelvis. It acts as birth control and, for some, a treatment for heavy bleeding. At first, the Mirena seemed to be doing the trick, although the pain was still there. Three months later, the pain started getting worse again. This time it was so intense, my partner had to rush me to the hospital. All they could do was give me painkillers and send me back to my doctor. Painkillers rarely take the pain away. Walking into my doctor’s office, I always see how stressed she is. She doesn’t know what to do or how to help me anymore, and they are running out of options.
I don’t want to have a hysterectomy as this age. I still want to have children one day. In two months, I am booked in again to have exploratory surgery, so we can hopefully find what else I could have. This is my second surgery this year alone. I hope more than anything this is something they can fix easily. It has taken over my life. I lost my job, I can’t work and I can’t do half the things that I used to do. I couldn’t have gotten this far without the love and support of my family, my partner and my friends, as well as the dedication and commitment of my doctors and specialist. The depression and anxiety that come along with this disease are intense and overwhelming, but you have to take each day as it comes and try not to let it get the better of you. People don’t understand because it is an invisible disease, and they think you over act it. One day, I hope they can find a way to help everyone that suffers. I know each person’s story is different, but I’m available for anyone that feels that it is too overwhelming and they need someone to talk to.
New South Wales, Australia.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.