What I wish people knew about endometriosis

March is endometriosis awareness month so I thought I would share a post about it. I am aware it is now April, but it was mid-March when I started writing! I am not a professional, and everyone is different so if you need advice, contact your doctor. I have been trying to write this post, but I want to make sure I do it justice. I am going to be sharing what I wish people knew about endometriosis.

What is endometriosis?

Endometriosis is a chronic illness where cells similar to the ones lining the uterus are found in other places of the body. The cells in a uterus shed during a period, but these cells have nowhere to leave and so build up which causes inflammation, pain and scar tissue formation. It is a long-term condition, that can affect anyone born female of any age. It impacts around 1.5 million in the UK, which is 1 in 10 people.

8 things I wish people knew about endometriosis

It’s not just a bad period

The pain is debilitating, but there are so many others symptoms too. The fatigue causes me to not be able to do anything for days. Then there are also leg aches, backaches, brain fog, nausea, diarrhoea, constipation, bloating, pain urinating and pain during sex. Different people have different symptoms. We are not being dramatic.

In terms of medicine, paracetamol does nothing for me and I have recently discovered that ibuprofen/naproxen should not be taken without a stomach protector if you take it regularly.

Every day looks different

I do not only get pain during my period, I get it on most other days as well. I have to always carry a heat pad in my bag because I never know when I will get bad pain. This is particularly hard at uni.

Some days I am absolutely fine, other days I cannot get out of bed. I have been so busy lately with going to uni early and staying late and my body is so exhausted. I am burnt out, and I know it will take my body longer to recover. When I get back aches and leg aches, they are a tell-tale sign that I have not been getting enough sleep. I have to rest longer than most people, but that is something I just have to accept and find a way to cope with.

Brain fog is a real issue

I get the worst brain fog when I’m on my periods, days when I am fatigued and have worked too much. When I have a brain fog day, I am totally out of it. I may physically be there, but I have no idea what is going on and can barely form sentences. My brain just switches off and there is nothing I can do but rest.

It is so frustrating mentally

There are days when I just want to scream and cry about the fact that I have endometriosis. It is so difficult and I get so upset that it stops me from studying as much as I want to or missing out on things socially. I seem to be constantly on the phone with the doctor about it. And there is such a massive lack of understanding about endometriosis, I feel like I am the only one advocating for myself when it comes to speaking to the doctor. Did you know that it is as common as diabetes? And yet, there is not nearly the same amount of information. It is not in my head, but it does get me down a lot.

There is no cure

There is currently no cure for endometriosis. While there are things that will help to manage it, it will not go away. The most common treatment that doctors steer you towards first is contraception. They seem to practically refuse for the conversation to go further unless you have tried multiple forms of contraception.

I’m always thinking about it

Even on good days, I will be thinking about the lack of symptoms I am having and will wonder why that is. That sounds a bit odd, but I’m always fatigued so it’s strange when I’m not. But really, I am thinking about what I can eat and drink, and whether going out will tire me out too much. I’m currently in my final year of uni, and although I am doing a master’s next year, I am really concerned about getting a job. I want to work in conservation but that is really physical, and I’m worried that I won’t be up to it. I haven’t ever had a job because I have always worried about taking too much time off from Endo.

I need to plan everything in advance

Planning in advance is a must for me because it gives me the best chance of being able to achieve whatever it is. For example, if I want to go out with friends, I will try to take it easy beforehand and after to ensure I am well enough. If I have an assignment, there’s no way I can leave it until the last week because I might be ill. Sometimes I feel like I have to work a lot harder than other students and get less than I want to achieve.

I have to constantly advocate for myself

I feel like I am constantly on the phone with the doctor asking about a new symptom or a new problem and it can be so hard when you constantly have to bring up endo yourself. I have to mention it every time because otherwise, they don’t mention it. One time I was asking about fatigue, and a doctor told me it was normal to have naps. I don’t think it is when you are only 20! Don’t get me wrong, some doctors are nice and helpful but there are also some that aren’t.

My friends and family are mainly understanding but sometimes I feel like they don’t understand how tired I really get. Obviously, they don’t know, because they aren’t going through it. But sometimes I need someone to look after me because I just can’t do it myself. I have been forcing myself into lectures because I don’t want to miss out, but it is honestly so hard.

What is something you wish people knew about endometriosis or chronic illnesses?

A few months ago, I wrote a guest blog post about coping with endometriosis if you want to take a further look. I also tend to (over)share on Instagram about coping with endo/endo life, if you are interested 💛.

Best wishes, Cx