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 

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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

Endometriosis and body image.

Body image is something a lot of us with Endometriosis struggle with. I struggle with this at some points and it can be so difficult. There has been days when I hate looking in the mirror because all I see is the bloat and I just feel disgusted. My endometriosis is pretty severe and my weight has fluctuated a lot.

I was put on a drug called Decapeptyl which puts my body into a false menopause the aim was to shut the ovaries down in the hope that my symptoms would ease. The drug caused unwanted side effects such as hot flushes, headaches, nausea, fluid retention and increased appetite. There was times I was just always hungry and couldn’t stop eating! I gained about 2/3 stone when I was on this drug and what was even more difficult is people would point it out to me. It would be comments like “it’s been ever since you went on that drug that you gained weight” or The “you’ve messed your body up” and comments like this would just make me want to hide. I had to come off the drug due to the fluid retention and I was so glad when I did because the side effects got better. The thing people don’t understand is you would honestly try absolutely anything to get relief from endometriosis symptoms. It is so debilitating and difficult. You find that other sufferers are the ones that understand you the most and in ways it’s comforting because someone knows how you are feeling.

The other issue that comes with Endometriosis is the bloating it is also known as “endo belly” this is uncomfortable and painful and causes abdominal distension. This has been something I struggle with especially at the moment. Some days I can look about five months pregnant due to it. It’s difficult to find clothing that fits so I always seem to go with maternity clothing as I find that’s most comfortable and you can get some lovely maternity tops and dresses. You might be thinking “why buy maternity clothing when your not even pregnant?!” the answer to that is that it’s the only thing that fits and it is stretchy so doesn’t tightly sit around the stomach like what a normal top would. I prefer the maternity range especially during flare ups and at one point I was worried about what people would think if they saw the label said maternity but now it doesn’t bother me as much because being comfortable in what you wear is so important. You do find that you get people acknowledging that you look a wee bit bloated and it does look like a pregnancy bump but I explain that this is part of the condition and there’s nothing I can do about it. The sort of advice I’ve had has been things like “why don’t you exercise, do yoga, eat healthy” you can do all that but still suffer from the endo bloat. No matter what you do it still happens and it’s all down to the inflammation that endometriosis causes.

This was one day when it was starting to flare it was painful and uncomfortable.

I am learning to love my body even though it is incredibly difficult. I find writing this is quite therapeutic as it’s the first time I’ve openly discussed this topic. This condition has caused me to focus on my weight and I have been unhappy at certain points. Endometriosis has meant that I’ve had to try different treatments to keep symptoms under control and it was hard because it didn’t just affect me physically but also emotionally too. This is a situation I’ll hold onto:

I recently had a positive body image day and it made me so happy as I actually felt comfortable in what I was wearing and a few people acknowledged it which was so nice and because I felt good it had a positive impact on my mood. 

Learning to love our bodies isn’t a process that happens overnight it takes loads of practice and patience. It’s the acceptance of these obstacles that we are faced with and trying to manage them. I’m going to finish with a quote that resonates with me “treat your body like it belongs to someone you love” Be kind to yourself and keep fighting because you are doing great!

X

Instagram - @endowarrior_x 

Post Op

I’m now one week post op. I’m feeling not too bad it’s more the tiredness and wounds still feeling pretty tender. I must admit the two nights I was in hospital I was looked after very well. My Endometriosis had grown back in several places and my bowel was stuck to my uterus along with adhesions. 

 The staff in Ward 210 were fantastic always made sure I was as comfortable and pain free as possible. The one thing I thought was really good was each staff member that looked after me actually took the time to speak to me and find out more about endometriosis and what it’s like to live with the condition. They were great when it came to the night before my op I was nervous and one of the healthcare assistants on nightshift made me a cup of tea and sat and let me offload which helped a lot. I got to know the staff quite well and what was even better the same staff were on shift post op so they knew me and I had the continuity of care . Even though the staff were busy they always took the time to come and check on you regularly and made sure that you were okay and not too sore. I felt a bit like a pin cushion at one point as over the two days I was admitted I had to get quite a few blood tests done but I knew that they needed to keep an eye on things before allowing me home. The staff went above and beyond and are an absolute credit to the NHS.

The thing I want to push is that “We know our own bodies and when something doesn’t feel right keep pushing until someone listens.” It’s been one hell of a year as I’ve had to fight to be listened to. I knew my Endometriosis had grown back but I was told it couldn’t have and it was “phantom pains” and I had one consultant who was just going to discharge me. You know yourself things are bad when there’s times you’re having to take morphine just to get on top of the pain and have to be sent to A&E.  I fought and got a second opinion and thankfully this consultant agreed to do an MRI and plan for surgery. The truth is regardless of how many surgeries you have the Endometriosis just grows back and for some it can be within weeks or months.To any individual out there struggling with bad periods or pelvic pain please do see your GP and ask for things to be investigated further. I’m hearing more and more stories of people being dismissed and it’s wrong.  EARLY INTERVENTION IS IMPORTANT.

We deserve better.

This week I’ve realised just how much things need to change as there just seems to be no clear pathway for women with Endometriosis when attending A&E. I’ve not been doing great these last few weeks and my GP made the decision to send me up to A&E after assessing me and deciding I needed to be seen. I felt the student nurse was the only one who really listened and seemed interested. I have a feeling it’s because the label 🏷“chronic pain” is in my notes this is used for almost everything. The doctor made the decision that since I’m having surgery in August they could review me then and insisted I’d be better at home with painkillers which I was already doing in the first place but this was doing very little. I have a feeling that this is endo causing problems I suspect something is stuck and that is what is causing all the left sided pain. The one thing I wanted was to be helped and my concerns listened to. 

Just because the obs and bloods are ok it is assumed that you are “fine” when deep down you just feel totally shit. I left feeling even more deflated than I went in. A&E for myself and a lot of other people is a last resort it means everything we’ve tried at home just hasn’t worked. 

 There just doesn’t seem to be anywhere to go when your really struggling with your endometriosis. It feels at times that you are just left to “get on with it.” It feels like you just hit a brick wall because you reach a point you don’t know what else to do and the doctors don’t know either because of lack of knowledge and understanding around the condition. If only they could see endometriosis they would see how hard it is living with such a painful condition and how debilitating it can be. Imagine not being able to do basic things or  function properly. You feel useless because your no good to anyone when your in pain. If it was visible attitudes would change. 

What us individuals with Endometriosis need is a clear and consistent pathway that means that when we attend A&E about anything gynaecological related from the minute we are triaged to then being seen by someone that is experienced to some extent in gynaecology  who will then be able to come up with a clear plan. I feel like we go from pillar to post most of the time. Let’s not forget the staff who go above and beyond when your either admitted through MAU or A&E they take the time to listen and in that moment it feels like someone is on your side and actually wants to understand and do something to help make the situation your in a bit less rubbish than it is. At times it feels like your fighting a never ending battle that’s filled with uncertainty. 

Sometimes you’ve got to really fight to get the right care and treatment you need. I’ve had to do that a lot and sometimes you have to be your own advocate in this. If there’s one thing that endometriosis has taught me it’s that I know my own body better than anyone else. I had a situation a year ago when a so called endo specialist told me my pains were “phantom pains” when I told him I was worried that the endo had grown back. I knew something was wrong because it was having a huge impact on my day to day life but still he wouldn’t listen. I had to persist and eventually got a second opinion and turns out I was right to be worried. If only I was listened to a year earlier maybe things would be different today and it wouldn’t have gotten this bad. I’m not the only person out there who’s been dismissed like this I know there are loads more people out there being told similar things. Instead I’ve decided to raise awareness and let people know that they know there own bodies better than anyone else and if they’re worried about something speak out until someone listens.