Some days living with endometriosis can get so overwhelming. It’s when things over the last couple of months hit you like a ton of bricks. For me I’m so used to pushing through the best I can because I know if I didn’t, I’d be stuck in bed and just want to cry all of the time. People don’t understand the impact this condition has. Just imagine every second all you feel is pain and not being able to enjoy food because you constantly feel sick to your stomach. It’s the times locking yourself in the bathroom vomiting and being doubled over because of the pain being so bad hoping that nobody else in the house hears you. It’s not being able to do the basic of things properly like going to the toilet because it’s so painful or having to catheterise. Some days just doing things like showering or getting out of bed can take so much effort and energy. It’s the days spent being sent to hospital to be reviewed because symptoms are not manageable and having to get IM injections in order to stop the sickness so that painkillers can at least have a chance to be effective. It’s when the one thing you’d rather do is go to bed because the tiredness is too much and sleep is like an escape. It’s the days when you try so hard and tell people you are “fine” despite wanting to just break down into tears. It’s feeling useless because your body is completely failing you and the constant courses of antibiotics for UTI’s and kidney infections. It’s the hospital appointments and being told that x, y or z has to be an option because this horrendous condition has caused problems with how the organs function. It’s being called a “medical mystery” because nobody knows what to do because your condition is complicated and having an impact on more than one organ in the body. This is the side of endometriosis that people don’t see.
It’s such a misunderstood condition. I had someone say to me a few weeks ago “But I thought surgery would make things better for you and I assumed you were doing well now” whilst you have to explain how much of a struggle things are and them not knowing what to say. People think once you have had surgery that should be you “better” and the sad reality is there is no cure and the aim is to improve quality of life and reduce levels of pain. It’s that feeling of not wanting to be a burden and being afraid to say to people about how you’re really doing because they might get sick of you being unwell and things not getting any better. The hard thing is you don’t want to be seen as constantly being negative. It’s wanting people to try and understand but also knowing they can only do this to a certain extent. It’s having to take different medications to try and function in order to have some sort of life. Being young and having a chronic illness it changes things because you have different priorities from someone else the same age. You see other people going out and achieving things and you feel stuck and like you are there just existing and not living. People think that after a while you get used to the pain but the truth is you don’t every day becomes a constant battle and living with pain can become overwhelming.
Endometriosis is not just a bad period. People don’t see it as serious or detrimental but it has the ability to stop your life completely. You will be alive, but incapable of living and work twice as hard for half of the success in life. It’s not living at all. It should be taken more seriously and there needs to be more understanding about the condition. People need to understand that this is not a choice and control is nowhere to be seen with this condition you are absolutely powerless. Some days are harder than others and today being one of them. The one thing I would love the most is my life back as endometriosis has stolen it away from me. The hardest thing is trying to be kind to yourself when you feel so rubbish and trying to remind yourself you can get through this bad patch even if you have been there multiple times before. For me some days it’s about taking it one step at a time and even if that’s difficult taking it hour by hour but reminding myself it’s ok to do this.
