My Endometriosis journey started at the mere age of 11 when I got my first period. Periods for me were extremely heavy, and debilitating.
When I was 14 my mother suggested to me that I could have Endometriosis and explained what it was. I went to a General Practitioner and they told me what I was experiencing was fine, that it was normal to have heavy periods and bad cramps. The doctor put me on the pill to balance out my cycles and hopefully reduce my cramps. It didn’t work, but I just accepted the fact that it was supposed to be normal. Over the next few years my periods got worse, I would have to skip them on the pill because I couldn’t function a normal life when I had them. I would have to take days off school and miss important things in my life.
When I was 17 my GP referred me to a gynaecologist. The specialist pushed the idea of me having endometriosis away as nonsense. She suggested me going in for a procedure to get the Mirena (IUD) inserted. I was horrified at the idea of it but I thought it was the only thing that was going to help at the time, so I booked a surgery date. My partner, mum, and brother took me to the hospital early in the morning for the procedure. I couldn’t sleep at all the night before. I went into the theatre room and that’s the last thing I remember before I woke up. My body completely rejected the Mirena, and it made me bleed to the point that blood was running down my legs, and nothing could stop it. Naturally I have olive skin (tan) but I had turned completely pale. I could only handle having the IUD in for 5 days before having to have it removed. After I had to go on drug therapy to stop me from bleeding, I bled for three months after having the Mirena removed.
After that I had completely gave up on trying to resolve my issues with my body, and decided I would just put up with the pain. By this stage I had turned 18. My boyfriend and I were getting ready to go to his 18th Birthday dinner with his family, and I was having such severe pain in my lower back, leg, pelvis, and abdominal area that I collapsed on the ground. That was the first time I experienced such horrific pain and collapsed. Over the next few months I endured crippling pain and having to be rushed to the hospital by ambulance. I got told it was an infection or UTI. No one could figure out what was wrong with me. I finally decided to research gynaecologists and looked for one that specialised in endometriosis. I found one and booked an appointment. The gynaecologist was warm and welcoming, and listened to everything I had to say. He believed that the leading cause to my issue was endometriosis, I went in for an examination, ultrasound, and bloods. Nothing showed endometriosis, but the bloods did show I was extremely iron deficient from losing so much blood since the IUD experience. The only course of action that could be taken was surgery for diagnoses, and ferinject for my iron deficiency. My specialist explained everything to me and what was going to happen, and constructed a plan with me. I booked a surgery for a Laparoscopy, Hysteroscopy, D&C, and for my appendix to be removed. By this stage my partner and I were living together so he took me to the hospital for the procedure at 6 in the morning, stayed by my side until I had to go into theatre, and was there when I woke up. He never left my side. The specialist found endometriosis behind the right side of my uterus and heaps of adhesions. The nurses, and all the hospital staff were amazing and extremely caring. After the procedure it took 6 weeks for me to recover, and I was left with four scars. Two on my abdomen, one in my belly button, and one on my pubic bone. It was one of the hardest things I had to endure. I couldn’t walk with my back straight, I was bleeding after the D&C, I could barely walk around the house, or lift anything. For the first few weeks I had to put a stool in the shower, because I couldn’t stand up and bath myself. I am so thankful I had an amazing partner there looking after me throughout my recovery. For six months after the procedure I had to do drug therapy, which was Zoladex injections to stop my body from ovulating and the endometriosis from growing back. I suffered terrible menopausal type side effects from this treatment.
Finally, after I finished the Zoladex treatment I felt amazing and mostly pain free. I could start getting my life on track. I went back to University, started going to the gym mostly every day, eating better. I felt like nothing could bring me down. That only lasted around 3-4 months before all my pain started coming back, 10x worse than before.
The last two months.
It started spiralling out of control again and I couldn’t function a normal life. I was having endo attacks at least twice a week. The pain I was experiencing was extreme fatigue, nerve pain, chronic lower back and abdominal pain, burning sensations down my legs, painful intercourse, painful and heavy periods, bloating (extremely bad endo belly), and increased pain with bowel movements. I could barely walk and leave the house.
The past few weeks.
One day after I came back home from a lecture at uni, I was sitting down doing my work and when I got up I collapsed and couldn’t walk at all. I dragged myself to the couch to grab my phone. I rang my mum balling my eyes out so scared. She was living in a different town to me at this stage and my partner was working away. She rang my father and sent him over. I semi crawled/walked to my bed. My father came to my home, gave me my pain medication, and got me some dinner. After he made sure I was feeling better and okay he left. The pain got worse and I couldn’t walk. I rang my father and told him I needed to go to the hospital. He rushed back over, called an ambulance, and they rushed me to hospital. I stayed the night. The next day I made an emergency appointment with my gynaecologist. I explained to him my pain, and everything that had happened. He did an examination and could physically see and feel a lump. Now I had to do bloods again and go for a pelvic and abdominal MRI. The endometriosis had grown back on the left side. The lump that was found, it was sitting on my nerves and that is why I had/have been experiencing debilitating nerve pain in my legs, lower back, abdomen, pelvis, and such painful bowel movements. My specialist didn’t want to do surgery again because it had only been a year since my last. He didn’t want to put my body under trauma or risk damage to my reproductive organs again so soon. We decided for me to do drug therapy, taking Visanne for two and a half months to see if it would shrink the endometriosis and take away my pain. If it doesn’t work I will have to go back in immediately for surgery to get the endometriosis cut out again. This completely broke me, and made me feel so alone with this disease. This gave me the inspiration to start this blog, and create awareness for all the sufferers and whoever is affected by endometriosis.
Thank you so much for taking the time to read this you beautiful souls. My next few blogs will be about drug therapy, infertility (children), studying with endo, paleo diet, exercise and supplements.