March is Endometriosis Awareness Month. I have been taking part in some of the March challenge which is a post every day on social media but this has been a bit difficult to stick to for a number of reasons. I was diagnosed with stage 4 endometriosis in 2016 and since then it has been a constant battle. When you are first diagnosed, you are made to think that if the endometriosis is surgically removed that should be you better and that it’s one surgery done right. Unfortunately that’s not the case as it grows back and it can do very quickly and it could mean going through multiple surgeries. Since 2016 I have had 3 surgeries for this condition and after each one I have had a few months relief before the symptoms return with a vengeance and the endometriosis grows back. I have been put on the waiting list for surgery number 4 and this is happening hopefully in the next few months as we are trying to find suitable dates for both surgeons to do a joint case. You would think having had surgery before it would get easier each time but it never does the hardest part is the uncertainty of it all.
The worst part of living with endometriosis is how unpredictable it can be. Some days I am able to do things and then the next day I can be stuck in bed unable to do anything due to the pain being so bad. The pain is always there and some days it requires me to take stronger painkillers for breakthrough such as morphine to try and get on top of it. The amount of times I’ve spent doubled over in so much pain vomiting because it’s that severe or the nights lying awake when everyone else is asleep because I can’t get comfortable and feel like I’m being stabbed repeatedly it’s so intense. I had someone ask me how I would rate my pain out of 10 (10 being the worst possible) and I said 6/10 other people would see that as unbearable whereas to me that is at a manageable level and I can somewhat function. People don’t understand the emotional toll that being chronically ill can have it’s exhausting being in pain constantly and feeling rubbish all of the time. There are some days when I just feel totally devastated by this condition and that’s really difficult but it’s the love and support of those around me that get me through those days. This condition is scary and it’s when it starts to have an impact on other organs in the body and how they function. My endometriosis has progressed and this is probably the worst it has been in a while. The hardest thing is dismissal hospital for me is a last resort but when I’ve had to go I’ve been seen and told to go home and try the basics again like hot water bottles or strong medication because theres nothing they can do to help and you do leave feeling quite deflated. However, I’ve had experiences when I’ve had to go through NHS 24 they always ask me “what’s worked for you in the past you’ve been in this position many times before and know better than us?” and they always do what I suggest like give me IM injections and then review things once that’s had time to work. Sometimes it feels like you know the condition better than what the doctors do. It does feel like when you do get to a point when your endo is a bit more complex to manage you are passed from pillar to post because nobody knows what to do with you.
The Children in Scotland Conference starts tomorrow and this is the first time I have shared my Instagram with professionals and organizations that work with children and young people. I use my Instagram to not only raise awareness but also show the reality of what living with this condition is like. It started off as a place for getting support through the diagnosis process but since then it has grown and I’ve met so many amazing people on it and I receive numerous messages from people. I’ve had a few thank me for posting because it makes them feel less alone and my profile is honest and captures what this condition is like. I’ve had messages from teenagers who are struggling with symptoms and look for advice or someone to speak to. The account has also taught me that it’s ok not to be ok and the most important thing is getting support from others. Endo can have a huge impact on mental health. I’m always here for anyone that needs support or someone to talk to. It’s a shit condition to have but you don’t have to do it alone❤
