My name is Alexandra and I am a sea kayak guide and activity instructor. Endometriosis does not define me or rule my life, but the impact it has sometimes feels like it’s in control and not me. I was diagnosed with endo when I was 18 and instead of starting my first year of university, I was on the benefit sitting on the couch at home. I had already been working full time for a year and throughout that I saw a bunch of doctors who gave me different pain killers and sent me on my way. Most of them just told me I had a low pain tolerance (I do my own Brazilian waxes!!). It was only after going for a kidney scan due to severe back pain, that a tennis ball size cyst was incidentally found on my left ovary. I was referred to a gyno and I showed up having done my research. I said yes to surgery, knowing that was the only way to actually diagnose.
After months of calling in sick and crying on the couch, I went in for surgery and they found and “burnt off” all the bad bits and inserted a Mirena. So instead of starting uni I was recovering. It took 2 weeks to move properly again and I felt like I’d been gifted a new body. I decided then and there that I would take every opportunity and not let anything health related slow me down. But that was when I was feeling healthy. 2 years post surgery I was halfway through studying outdoor adventure and my symptoms started to return. I went to the doctor and he said “it’s not endo because you had surgery and you’re cured” so he gave me pain killers and sent me away. Back to square 1. I made an appointment with a new gyno and I was put on the pill. It helped manage the pain for a while, but after about 6 months it wasn’t so effective. I missed out on so many things I wanted to do and I had to re-schedule assessments. What hurt the most was I knew people didn’t believe me because they couldn’t see anything wrong. I’ve been so scared to tell people because I felt attention seeking. I always tell people not to worry because it’s a waste of brain capacity. But I guess I’m a hypocrite. I’m only human and I worry about how this disease will affect my future, Will I be able to have children? Do my chances of conception decrease every day that I’m not trying? Will my disease be passed down to them if no one related to me has the same thing? Will I be able to continue working in the outdoors? Will I lose my income because of not being able to work? Are other people judging me because they can’t see what is wrong?
Obviously there’s always going to be someone out there who has it worse. You can’t let that thought alter your mindset or invalidate your feelings. Anything you feel matters to you and you can’t ignore your own struggle because of anyone else. I know that if I broke my arm, people would give me get well cards or want to sign my cast to show their support. With something they can’t see and don’t understand, people don’t know how to show support, It’s not their fault and there is always someone out there who knows exactly what you’re going through even when you feel alone. I know that I affect people around me with this and its hard when people just tell me to “think of the positive” when I’m struggling that day. It makes me feel like they think they’ve helped immensely and all the struggling I did alone was for nothing. But any way people try to help is helpful because at least they are trying. My friends have no idea how to help and try to compare how bad their period pains are. Or ask what they can do to help but I have no idea what I need. Probably a new body.
It is now 5 months since my first surgery. The last 3 years have been hell. I am currently in between appointments with various specialists deciding what to do. I have had a positive diagnosis for thoracic endometriosis. That means that it has traveled through my diaphragm up into my chest cavity. When I asked if this was possible 3 years ago I was told by medical professionals that there is “absolutely no way that could ever be possible.” So I have no idea what happens next but I’m not going to let it control me. Even when I feel like I need a day on the couch, I want to get up and go for a small walk. Even in that whole week of pain, if I get up and do something to make myself feel good and active only once I will be proud of myself. Since I decided to take every opportunity, I feel like I am more in control. I still have to make really hard decisions to miss out on things, but looking after myself is my number 1 priority. So no, I don’t get to do everything I could if I wasn’t ill, but I still choose to do things to make myself happy. I went for a month around Europe. Even though during that month I went through my whole supply of pain killers to get through, I still did it. I was scared a couple times that I would miss transport due to not being able to walk because of pain. But that’s the kind of things I had to plan for and in life, s**t happens.
Even though I have a currently incurable disease, I feel lucky that I pushed so hard in the beginning for a diagnosis. I feel lucky that my parents set up a health insurance policy for me before any of this came about. I feel lucky that I have had supportive employers that have given me time off when I needed it. I feel lucky that I have been able to take opportunities to do exciting things. I feel lucky that I have the time feeling like death on the couch so that I appreciate all the time I have out and about. So basically, I have no idea what happens from here, I might have to get cut open, I might have to trial more hormones. No idea but that’s life and I just have to roll with it.