This is Endometriosis

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.

Endometriosis and Mental Health

*** TW does mention suicide***

I think with Endometriosis people don't realise just how much of an impact it can have on mental health. This is one bastard of a condition. When I was first diagnosed I didn't realise just how much my life would change. It’s a condition that’s just going to stop your life completely. Sometimes it is having to cancel plans, being dismissed by doctors or being confined to your bed having to take morphine because it’s so bad or other days being sent to hospital to get on top of symptoms. Sadly, this has become my normal and I know this is what life is like for a lot of people with the condition. You just feel like you are basically just existing. Some days you can feel so fucking devastated by this condition. The one thing that helps the most is the love and support of those around me. 

I'm hearing more and more about individuals with endometriosis sadly passing away due to suicide. This is honestly heartbreaking. It's sad that it can get to that point because the situation just gets unbearable. It's sad hearing that some people feel they they just don’t want to be here anymore. Not everyone who feels this way wants to die they've just got to a point when it's got far too difficult to cope with. Support when living with endometriosis is so important. I always like to think that when people feel low or just need to vent that they feel they can always come to me. I care and will listen. I may not be able to do anything to help or take the situation and make it better but just being there is enough. If I had a magic wand I would make things better for so many individuals out there. You don't have to be a counsellor to be there for someone with this condition just showing understanding and compassion is enough. Check in on your friends or loved ones with endometriosis ask them how they're doing and let them know you are there if they need to talk. Your support can mean a lot especially when someone is struggling.

Remember it’s ok not to be ok. There is support out there you don’t have to struggle with this on your own. I’m sending a hug and lots of love to those who are struggling currently. 

I'm only ever a message away you can get me on Instagram @endowarrior_x 

x

Support is available via the Endo Warriors West Lothian page on Facebook and if you request to join the group your request will be approved 💛

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Shout - 85258

Endometriosis Awareness Month Challenge

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❤

Children in Scotland Conference

I’ve not really wrote on this blog properly but have mostly been using my awareness account on Instagram but I think getting back into writing in my blog. March is Endometriosis Awareness Month and it has been quite busy. I’ve been mainly preparing for the Children in Scotland Learning Week conference which starts on Monday (22^nd) I am delighted that they have included Endometriosis in the programme. The presentation is a mix of my own experience and also other people that were willing to share their experience with me. Some of the responses I’ve had have been quite sad because of the dismissal and fight people have had to put up in order to get the right care and treatment.

On my Instagram I receive so many messages from people who have the condition or are going through the process of diagnosis. I have had this account since 2015 and it was just the start of my journey with the condition. I have also had people message to tell me that they like my account because it’s honest and shows the reality of this condition.

The main focus of my presentation in Learning Week is to raise awareness but also give professionals/organizations who work with children and young people an idea of symptoms to be aware of and how they can help but also get that child or young person support. Menstrual Wellbeing is so important and is something that should be implemented in the PSE curriculum in Scottish education. Girls are starting periods as young as 11 years old. People might think that teaching a 12- or 13-year-old about periods isn’t appropriate but girls need to know what they are experiencing but also what’s normal and what isn’t. Some of the girls I spoke to are currently at school and the support received is very mixed. I have tried to give suggestions in my presentation and hope that anyone that’s attending that works in education will hopefully take these on board or come forward to discuss further. I also highlight how early intervention is important because if there is a delay in diagnosis like what I’ve had it can have a devastating effect on every aspect of life.

If anyone has any questions or wants to chat further you can contact me on the following:

Instagram - @endowarrior_x

Twitter - @dionnemcfx