May 2024

After an 18 month wait, I finally got endometriosis surgery. My first laparoscopy in a couple of years so of course I was riddled with endometriosis. However my surgeon worked his magic and by the time I woke up I had no active endometriosis left! 
Recovery took about a week and I was really surprised when I was back up and about so soon. 

In March we wear yellow

 MARCH is ENDOMETRIOSIS AWARENESS month! 

March is endometriosis action month, each year has a theme. March 2024 theme is 'could it be endometriosis??' 

1 in 10 women are impacted by endometriosis, yet so many people are still unaware of the condition. Endometriosis comes with so much ignorance as it's easier to blame another reason or illness.

This March the aim is to focus on raising awareness and making this 'unknown' common illness known! It's important that people are aware of the symptoms and are confident enough to ask 'could this be endometriosis?' This will hopefully lead to much quicker diagnoses and better care. 

Could it be endometriosis???

• pelvic pain
• painful periods which interfere with every day life
• painful sex
• painful bowel movements 
• pain with urination 
• fertility issues 
• fatigue 
• nausea

Endometriosis facts

• 1 in 10 women and those assigned female of birth of reproductive age in the UK suffer from endometriosis.¹
• 10% of women world wide have endometriosis - that’s 176 million worldwide.¹
• The prevalence of endometriosis in women with infertility can be as high as to 30–50%.²
• Endometriosis is the second most common gynaecological condition in the UK.³
• Endometriosis affects 1.5 million women and those assigned female at birth, a similar number of those affected by diabetes.⁴
• On average it takes 8 years from onset of symptoms to get a diagnosis.⁵
• Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.⁶
• The cause of endometriosis is unknown and there is no definite cure.

International women’s day

Twenty twenty four

New year, same shit!

I’m not expecting 2024 to be any different, my heart still hurts and life is hard. 

January chucks us straight in to one of the hardest processes and I still have so much physical health decisions to make.  

Twenty twenty three

There is honestly no words to even describe my 2023, it’s absolutely crazy to think how much was thrown at me. It’s even crazier to think that I’m still surviving through it all. What a year! I’m glad the years over as it’s honestly been the worst, but also it’s the last ever year that my Mum and Matty will ever be in. The thought of that breaks my heart, I honestly still struggle to understand how I lost my whole world in just five weeks.

December 2023

I got a phone call to offer me a procedure in two days, if you don’t know by now, I don’t cope with decision making on the spot, I panic and agree to stuff that I haven’t thought about. So obviously iI agreed to surgery a week before Christmas and with only two days notice.

Luckily it wasn’t anything to intense and eight hours later I was back home. I honestly don’t know how I do it, my seventeenth surgery and third one of the year! To be honest I was grateful for the sleep! The nurse came in, woke me up and was like shall we get you up and dressed, she left the room to get some stuff. So of course I turned over and went back to sleep! Anaesthetic sleep just hits differently!!

The procedure went well, now we just wait for biopsy results.

My STR Worker came to visit me the next day and asked how my week had been and I was just casually like 'oh I had surgery yesterday' like it was no big deal 😂

Sacral nerve stimulator surgeries-

Sacral nerve simulations device, SNS.

It involves the insertion of a type of “bladder pacemaker” and the treatment is usually an initial test phase followed by insertion of a permanent stimulator if the test phase is successful. The device sits at the bottom of the back and is connected to wires that are placed inside. The device connects to a medical phone, where you can change the programmes and the volume.

The device helps to stimulate the bladder nerves,  to encourage natural opening and closing of the bladder. The device being on the outside of your body meant I couldn’t bath for six weeks, which absolutely disgusted me. Thanks God for baby wipes and dry shampoo!  

September 2023

My surgeries are the main reason I wanted to get back to blogging, but I just felt like I couldn’t not mention the past few months. 

I originally cancelled my surgery for the 31st of July, it was just too soon and I knew it would just be too much for me. August came and went and I fully avoided even discussing a new date for surgery. I’d spoken to my specialist nurse and even though she completely understood my situation she was still very keen to get me in for surgery asap. The thought of this terrified me, I kept convincing myself that I didn’t need surgery, but of course it was something i needed to try. In September I had an appointment with my STR worker when I received a call from Birmingham. They offered me surgery for three weeks time, I felt on the spot, 

I was really anxious but for some mad reason I agreed to thee surgery. I had a little panic after when reality hit me and I realised i had just agreed to surgery in three weeks time in Birmingham!! My STR worker tried to point out all the positives, but as always I wasn’t convinced. I still put the blame of this decision on her as she tried to convince me it would be ok. I made the agreement to never answer a phone call again during her appointments! 😂

The week before surgery I was an absolute mess, I had Mums memorial and I neeeded to get back in my bedroom ready for surgery. I have PTSD from events in my flat and this was honestly such a hard process. Facing the place where my whole life changed. Again my STR worker tried to convince me I was strong enough to get through it, so we went shopping to get some essentials to make the room mine.  Mums memorial happened, she was honestly so so loved and then Monday came around. I
 rang my specialist nurse and told her I couldn’t do the surgery, I was to scared to face it alone. Her reply simply was to get in the car and she would be there for me every step of the way. My partners family drove me to Birmingham and I spent most of the journey trying to get them to redirect and to go somewhere more fun! But Kerry stood her ground, became as bossy as my mum and pushed me through the hospital doors! I cried about five times whilst waiting for my slot, I just wanted my Mum and Matty. My specialist nurse kept her promise and held my hand through it all. With lots of texts from my FLO, family and friends, I agreed to go down to theatre. Unfortunately as they prepped me for surgery, my observations were unstable and they agreed anaesthetic would be too dangerous. They sent urgent lab tests off and kept me in hospital. I was miles away from everyone and just didn’t want to stay so far away from home. I wanted to discharge myself so many times, I just didn’t want to be in hospital. My results showed Ecoli and I needed urgent treatment. I really struggled with the hospital stay with my PTSD, I was an anxious mess for the whole hospital admission. My surgeon was adamant he wanted to do the surgery as soon as I was stable enough, I agreed just so I was One step closer to going home. So a few days later, we did surgery take two! I was less anxious this time, I had my specialist nurse and my pain specialist was also my anaesthetist for the day and obviously I trusted my surgeon. I did become anxious though once in the prep room. I'll never understand why theatre prep is such a tiny room, yet they expect so many people in there with you. I was over whelmed by all the questions (no idea why, my anxiety acted as if I'd never had surgery before). Whilst I was on the bed telling them for the tenth time that I'd not had food, water or meds my anxiety took over and I cried.  My specialist nurse held my hand and I asked my surgeon if it was to late to back out. He got up and locked the door and then continued to stab me with a cannula. I dunno what he was actually expecting me to do I was in a bed with the railings up. 😂
 I’m absolutely terrible with the counting and never ever get past three. That waking up and the pain hitting you, never gets easier though!My pain was bad and I just remember crying and shouting to anyone who was listening to get me morphine and quickly! One of the nurses tried to reassure me she was just finding the drugs cabinet key and I impatiently shouted you don't need a key just use the door handle! Luckily she laughed it off! The joys of anaesthetic! I have so many previous anaesthetic stories it's unreal. Some are terrible, but most just laughable. 
 I always cry in recovery for my Mum, it doesn’t matter how old you are when you are poorly you just want your mum! I had a photo of them both under my pillow and I just tried to think what Mum would say if she was here. I know she would have moaned as she always did, ‘it’s ok for you, you have a lovely sleep but I’m on edge watching the clock tick by every second!’ Haha bless her! 

This was my fifteenth surgery, but defiantly the hardest. Everyone kept saying if I could have a partial hysterectomy then this surgery would be a walk in the park. I honestly don’t know what park they were on about, this defiantly wasn't a trip to the swings! 

It hurt not just physically but emotionally too. It was my first ever surgery without my Mumma by my side My first ever recovery on my own, I was so anxious of what the recovery involved. As always I was super grumpy after surgery and I told everyone to leave me alone as they tried to do the 15 minute observations, get me food and drink and give me medication. Mum would have told me to stop being a madam, but we all know I wouldn’t have listened anyway.  

I finally got out of bed after a nap and some toast. I was straight up on my own despise the nurses telling me to not move without them. I went to the bathroom to examine my surgeons handy work. I was actually doing ok, I was up and dressed, learnt how to use my device and thought I was winning at recovery….. until the next day and the anaesthetic and pain relief had worn off. Driving home from Birmingham was a painful journey. I had three wounds at the bottom of my back and it hurt to sit or move. My pain was so intense, I really struggled with recovery at first. My Mental health nurse rang the next day and I just remember telling her I felt like I’d been ran over by a double decker bus.  She laughed and was like you do sound very groggy. Don't know what she was expecting, wasn't even 24 hours after surgery.   
I literally can't remember any more of the conversation and I guess that's why they tell you to not make decisions or anything important after anaesthetic! The first week was really hard, I honestly couldn’t even get out of bed on my own. My GP ended up getting me a carers package to help me,  obviously I was really grateful for the help but this was just another reminder of what I had lost. It shouldn’t have been strangers looking after me, I just wanted my Mumma and Matty. Most of the carers were lovely though and they really helped.  It took me about two weeks before I could move about on my own. I was so lonely during my recovery, I couldn’t get up and do anything and I obviously didn’t have the support I was used too. 

By the third week I started bladder training, I did my first wee in four years which really made me get my hopes up, but as days went by it started to show that the surgery wasn’t going to be successful. I was gutted, I put everything in to this. Setting alarms every hour to wee, only drinking juice or water, constant monitoring. By the fourth week I was passing blood and we decided to make the final decision and agreed that surgery had failed. I was annoyed I went through all this pain, recovery and effort for absolutely nothing and I still needed another surgery yet to remove the device. We began to discuss options and where this result left me. I was super fed up, it didn't matter how much I tried to stay strong and how much I went through, it just never was enough. Something else would always go wrong. I cried on the phone to my FLO and I just remember her saying ‘you never ring me with good news.’ I was just like, I never have good news that’s why!

Throughout all this i was still having support for my mental health, every day was exhausting. If I wasn't struggling with my physical health, then I was suffering with my mental health. I’m so grateful to have had support professionally though, our FLO always says to me that she isn’t much help, when I’m sobbing on the phone to her but honestly I wouldn’t have gotten through the past few months without her and my mental health support. From therapy, skill work and just simply listening to me as I cry, trying the best to convince me that I’ve got this. I’m still yet to be convinced but I’m sure my STR workers not gonna give up until she has me a 100% convinced.

In the middle of all this madness I had my first Birthday without them to deal with. I was spoilt by my in law family, the day was hard but as always I was super grateful for all the love and support. 

November 2023

Back to Birmingham for my second surgery, this was the first time I had seen my consultant since the first surgery and we reconfirmed that the surgery had failed. We discussed next steps and he asked me if he could do some extra bits during surgery. I told him I was grateful for the extra sleep, so go for it.  Surgery lasted four hours and I was very groggy when I came round. I did text my best friend telling her I felt really rough and she was just like ‘’mate you've just been cut open.” Not sure how I was expecting to feel after a four hour surgery! I wasn’t sure what had actually been done, my specialist nurse did come and see me but I just kept falling back to sleep, so she gave up an said she would see me tomorrow! I was much more groggy this time and when I got the update of what surgery I had done the pain made sense. They did a urinary dilation, stretched my bladder, removed some polyps and did some biopsies.

Obviously I was super impatient and wanted to be back home and no amount of persuasion from the hospital could convince me to stay another night. The journey back from Birmingham always feels so much longer than going! The pain from sitting in the car was horrendous, but whoever invented heated car seats is honestly a genius!!

My STR worker rang me the day after, I don't remember this conversation either. Just that we agreed I needed sleep 😂 

This time although the pain in my bladder was severe, I managed to cope with the recovery. 

The longest wait was the stitches all coming out, because I was just so desperate for a bubble bath. 

Here I made a decision to leave future plans for my physical health for the new year and to focus on therapy and treatment. Of course nothing goes to plan for me, so this quickly changed. Im sure one day I'll share fully my mental health journey over the past few months, but right now I need to focus on my well being. 
I’m currently waiting for tests and to start getting ready for a bladder removal. Right now I don’t have the energy or strength to even think about this decision but I’m sure I’ll have updates soon. 

There is some extra gross photos on the photo page!

July

I’m struggling both mentally and physically. Life is currently the hardest it ever has been. My griefs so real and I just find it so hard to understand this madness. I’m really suffering with my pain still and I just couldn’t take anymore, it was all to much for me to deal with. I cried to my GP and we agreed on trying a few months of prostap injections. I wasn’t keen on going back through medical menopause as the symptoms are quite rough, but right now I just couldn’t cope and it seemed the only option that would give me a little bit of relief.  

Grief

I always thought grief was just missing someone. The truth is missing someone is only half of it, there is so much more to grief that you don't realise I guess until you go through it yourself. 
Nobody talks about the physical symptoms:

• Stomach pain
• The tightness and heaviness in your chest
• Fatigue, drained and achey  
• Feeling like you can't breathe
• Struggling to concentrate 
• Memory struggle and feeling confused 
• Increase or decrease in appetite 
• Insomnia
  
  Nobody talks about the survivors guilt, the low self esteem, the hurt you badly hold from not being able to prevent the situation. 

Then it’s the things you’ve got to do, no matter how broken you feel you’ve got to get up and carry on for them. Registering the death, letting people know, closing all the accounts, organising the funeral. Each step making this bad dream reality  

My grief is still very raw and I'm still working through the process of accepting and dealing with my losses and the trauma that came with them. Everyone keeps telling me that it gets easier, but right now it feels like my life will never ever get easier or better.

maybe  one day I'll feel able to share my full story.

But what I do know is that grief makes you feel the loneliest. Theres people around you, but they aren't the people you want or need. Whilst you're missing that special person, you can still feel alone in a room full of people. 
I honestly know that without our family liaison officer (flo), I wouldn't be here writing this. She picked me up when life was the darkest. Unfortunately the mental health system is as broken as me and it took a lot of referrals and arguments for me to actually get any kind of support. I had completely given up but my FLO wouldn't let me quit. Melt down after melt down, she picked me back up. 
Eventually after being declined by so many services, I finally found a service that actually offered me the support I so desperately needed. Being passed around made me feeel like nobody actually cared and it took me two visits of me refusing to talk for them to convince me that they cared about me and my well-being. 

I felt completely abandoned when the short term service passed me on to long term support. The thought of trusting someone new again makes me anxious. 

Right now there really isn’t much else to write about. My loss is still very real, i hurt every single day.

It still hurts me every time I have to turn to somebody else for help, I’ve been the luckiest girl to have such an amazing relationship with my Mumma and my Matty and I’ve never actually needed to rely on anybody else. 

At the hospital mum cuddled me in her arms, I sobbed and said ‘I’m going to be left all on my own with no family.’ She cuddled me tighter and said ‘baby girl just remember family isn’t always blood. Family are the people standing with you when you need somebody the most.’. 

Mumma also rallied a little group, speaking to them all individually without me knowing. She wanted to make sure I was left with the second best people. (Mumma and Matty will always be number one)

And then suddenly my whole world broke

The day me and you, became just me!
I dont think I'll ever be able to understand how one day we were looking to the future and the next day yours and our future was snatched away. I'll never forget walking in to your moms house for the first ever time on my own, your mom gave me a huge hug and your little niece came running over saying 'Auntie Nikki are you sad now silly uncle is a star in the sky!' 🥺🥺 

I'm not ready to go deep in to everything, but that day broke me. I couldn't sleep or eat, I struggled to even get out of bed. My life as I knew it was ripped away from me. The only thing I wanted was my Mum, I just wanted my Mum to hold me and tell me everything will be okay. But everything wasn't going to be ok and mum was also in hospital with a lung illness. 
June went by in a whirlwind, tears, horrible decisions, final goodbyes and the funeral. 
I honestly didn't think I could cope with anything else, I was broken. 
Just as I thought my life couldn't get any worse, I got the second lot of shattering news. 

And then, it hurt all over AGAIN!

The day before my partners funeral, the hospital rang me to come in urgently about Mum. I honestly don't know what I was expecting, but it defiantly wasn't the news I got. Mum was deteriorating fast and they made the decision to stop treatment and to move her to palliative care. Mum still looked well and I just couldn't understand this decision.

After I'd said goodbye to one half of support team at his funeral, I spent the week at the bed side of the other half of my support system. On the 13th July my Mumma slipped away 

In just five weeks I had lost my whole world, my support system, my future, my belonging. I was alone, my two favourite people had been snatched away from me. My heart couldn't even begin to process the situation I was in and my brain just hoped none of it was real. 
I was 26 and was about to plan and organise my second funeral. 

Birmingham hospital

I finally met my consultant, I went in all prepared with my notebook full of every medication I'd tried, how often I need to be on antibiotics, how severe my pain is and so on.

I was completely heart broken by this appointment. So many people had told me this surgeon was the best, this surgeon will fix everything and give me a better quality of life. Yet here I'm sat with the surgeon discussing that my pain is long term and even having the surgery it's unlikely to change my pain. My pain will be part of my life no matter what, however I could still try the surgery to try and stimulate my bladder. If this was successful then my catheter could be removed, which would hopefully cut my infections down and would hopefully ease the pain even if only a little. 
I agreed to consider the surgery, in the mean time my consultant decided to refer me to a top pain specialist. 
I met with the specialist nurse yesterday (31st May). We had a full discussion about the sacral nerve stimulator surgery. The pros and the cons, the risks, the ifs and buts. Matty was super intrigued with the device and literally asked my nurse every question going. When she said to bring notes I don't think she was quite expecting a questionaire! I still wasn't sure about surgery, there was so much to it. Two surgeries and a long recovery. I spent therapy questioning the surgery, everyone just kept telling me that I'd make the right decision for me. 
Eventually mum and Matty both convinced me to try the surgery. They promised me I wouldn't be alone during any of this. They'd both tell me I was strong enough to get through it and that they'd both be at my side. I was stressing about the recovery, the bed rest, the no showering, everything looked so daunting to me. However mum and Matty are both my support system and I know with them two at my side I can get through anything. 

May 2023

2023

2023 started as 2022 ended. My pains unbearable and I honestly struggle to get through day to day. I was having cbt to try and stable my mental health and also to try and come to terms with the intensity of my pain. Life was a constant battle between me needing more pain relief and the dose just not being safe in the community. Anything basic was just impossible, I needed help with simple tasks that come with every day life.
By February I just couldn't take the pain anymore, I was severely depressed. I had no life, my whole life was dictated by pain. By this point I had been on the surgery list for two years. My Gp was constantly writing to them, I put in complaint after complaint and eventually my consultant offered me an appointment in April to see if there was anything he could put in to place whilst I wait for my surgery. 
I felt like I mentally couldn't take anymore, but my Mum and partner kept me going. I honestly didn't know what was wrong with me, I'd cry at nothing, I couldn't think, I'd just stare in to space and be zoned out. My GP referred me to the local mental health hospital, where we decided a change in medication would be helpful. I've been referred to a higher up therapist and I continue to battle through both my physical health and my mental health. 

The last option  

So if the last few weeks have taught me anything it’s that life’s to short, ignore what others think and go out there and live your best life.
For the past four years I’ve let Betty the bag control my life. Specially after a nurse called me disgusting and Betty dirty.
I’ve avoided swimming, shorts, dresses, camps anything that would basically mean me uncovering my catheter.
Yesterday I did a thing and went out in a dress and today I’ve been even braver and gone swimming.
In reality no one cares and those that do don’t matter, (either that or the Welsh are nicer)🤣 Betty the bag will probably always be a part of me and im done with letting her steal my life! 💛

Happy birthday to betty the bag- Suprapubic  7/2/23

Lets normalise catheter use!

We all have to wee, it’s a human basic need like eating, drinking, sleeping, etc, ‘Normal’ people have their bladder on the inside, but some people need a bit extra help. I’ve spent the week going through hell and back, being stabbed and poked to have a catheter inserted to my stomach, this bag ‘unfortunately’ hangs on the outside of the body, which can often be seen, betty the bag helps me to live my life, she’s my extended bladder. She’s not dirty and she defiantly doesn’t make the ward look messy as a nurse just told me. So I’m sorry she doesn’t look pretty, but She’s my quality of life. Next time I’ll still stick a pretty bow on her!

So firstly let me point out that it is NOT your fault that you're using a catheter. Normalising catheters has become very important to me lately, specially since my suprapubic catheter. I used to feel judged about needing a catheter, to the point I'd hardly leave the house or I would wear baggy clothes so that you couldn't see it. 

I've been in two main situations, the first one being when catheter life was really new to me. My bag was very full and I asked in a shop if I could use their toilets, whilst showing a disability card and a card proving the need of toilet urgency. The assistant was very rude to me at the time, however after complaints I did get an apology from the main area manager.

Secondly was very recent, I was in hospital (the last place you ever think you'll be judged for a medical condition). The health care assistant was rushing around tidying the ward bay ready for the doctors rounds. When she came over and started attaching my bag from the night bag without asking. (I'm 25 and more than capable of looking after my catheter and even if I wasn't you should at least ask or explain what you are doing.) I explained id like to keep the night bag as I had just had surgery and was struggling to get around the ward, her reply was 'oh they look messy for the doctors round'  Well I'm sorry my medical needs don't meet the criteria of your pretty ward. 

Let's talk catheters!

I just wanted to make a quick post about normalising catheters-

What is a catheter?

A tube inserted in to the bladder to drain your wee

How?

An indwelling catheter can be inserted into the bladder in two ways:

• through the urethra, the tube that carries urine from the bladder to the outside of the body. This is called urethral catheterisation 
• through a small hole in the abdomen a few inches below the belly button. This is done in hospital under local anaesthetic or a light general anaesthetic, and is called suprapubic catheterisation.

Utrethral or suprapubic???

Urethra pro

-Easily removed

-Easily inserted, no need for operation or hospital admission

Urethra con

-The urethra may become damaged

-The balloon can damage the bladder neck

-Uncomfortable

Supra pubic pro

-More hygienic, suprapubic area is easier to access and to keep clean

-Larger size catheter can be used, preventing catheter blockages

-Less intrusive

-Easier for sexual activities

-No risk of urethral trauma

-More comfortable, specially for wheel chair bound, comfier to sit.

-Reduces the risk of catheter contamination

-Reduced pain on catheter change

suprapubic Con

-Takes longer to reverse, but the hole will eventually heal.

-hypersensitivity around the suprapubic catheter site.

-Discharge, the wound needs dressing.

-Bladder spasms

-Risk of Haemorrhage, including haematuria and intra-abdominal bleeding

-Abdominal pain and risk of possible injury to abdominal organs

-Risk of infection, including uti and wound site infection

2022-

During lock down I have no motivation to blog at all, I've not had much to write about or discuss. 

However I really missed blogging and I find it helpful to express my feelings and problems, so for my New years resolution I'm going to be blogging at least once a month!

Twenty twenty two!

2021

December 2021

so I'm going to try and sum my year up in a quick blog. The year started quietly with another lock down and then in March I had bladder surgery which was a miserable fail. The plan was to get my catheter out two weeks after, which happened but then a week after I went in to retention, didnt pee for sixteen hours, twelve hours in a&e and a catheter placed back in. With the covid delays I am still waiting for my post surgery review. However since then I have had three trials without my catheter but all of them failed, so betty the bags stayed. 
Hopefilly I'll see my urologist in the New year and we'll have a plan because I can't cope with all these kidney infections and the pain of this bloody tube. 
When life opened back up, once I was double jabbed I decided to stop shielding and booked a surprise trip to Birmingham for my pruners birthday. The trip was brilliant but it ended with us both getting covid. With me being vulnerable it hit me hard and I need oxygen and treatment to help me through. Since then I've been super nervous to do much and to get out and about! 
On a positive this year we had two new family members 

I T ' S O K A Y T O T A L K S U I C I D E        9/11/2020

Unless you've been in a similar situation yourself, you will never fully understand the feeling. Some say its the cowards way out, however to some its the only way out! But it shouldn't be, nobody should feel that the only escape is to end their life. Nobody should feel that alone, that they feel they have nobody to talk to. Nobody should feel that the worlds to big and their disappearance won't be noticed. it is so easy to get side tracked in your own life, thinking I'll message or visit them tomorrow. Sometimes that tomorrow never comes, sometimes that day you're to busy will be somebody else's loneliest and darkest day. Sometimes that day you put off visiting a family member or friend, that day may be their last. So if theirs one thing you do today, offer that stranger a smile, offer that friend who's been down lately a chat and cup of tea. But most importantly don't assume that everybody is and will be okay because they've said so, or because they've not said otherwise. Sometimes the biggest smile can cover the darkest pain.

Chronically ill + Covid                                                21/6/2020

what a crazy year!!!
Apologies- I'm so sorry this is my first blog this year, the truth is I've been struggling and just haven't seen the point in writing! I promise I will do an update blog very soon, but for today I want to dedicate this blog to living with a chronic illness during this national pandemic. 
**Before I start though I'm just going to point out a few things.**
All my blogs, posts, pictures, etc are for Endometriosis awareness, I only ever tell my story to promote awareness, because together we can end ENDometriosis. I fully appreciate the difficult situation we've ALL found ourselves in this year and I defiantly am not saying the corona virus alone isn't important, hard, upsetting. Also I'm defiantly not 'slagging' the NHS or the emergency services, keyworkers etc everyone's come together amazingly and I fully appreciate everyone's efforts. I am simply putting my view out there, of what living with a chronic illness during this pandemic has been like for me.
Let me go back to when Corona was just something we heard on the news from other countries. I was in hospital having surgery the day that hospital got its first case of the virus. I was just being taken back to my ward after surgery when security walked past with a lady suited and masked or an 'astronaut' as my anesthetic brain told the corridor. The corridor was cleared so they could pass and Everyone in the hospital was amazed at this first patient.... a week later shops shut, schools closed, people were ordered to stay home.
I think my first struggle from the results of this pandemic, was being 5 days post surgery and not being able to see my GP. Social media was full of facts, myths, lies, statistics and fear was put in us all. Then came my government letter, putting me in the severely at risk category, although I'd already been home due to surgery I started my twelve weeks isolation on the 23rd of March. The situation was scary enough, but then hearing the 'you are at risk of severe difficulties if you get corona' or seeing 'protect the vulnerable, protect the NHS' on every advert was even more terrifying. So that was that, twelve weeks in the house started, twelve weeks without going out, twelve weeks without family, twelve weeks without my doggies, twelve weeks without routine medical care. On the 24th my nan got rushed to hospital and due to these lock down rules she had to suffer her last journey alone. the same day my Nan passed away. Not being allowed to see my Grandad was heart breaking. My Nans funeral got limited to ten people, I was all for breaking my lock down to attend. However, I got diagnosed with pyelonephritis and was warned not to leave the house as the risks were far to high.  Being the only close family member that didn't attend broke my heart, i had to watch my Nans funeral through an online link.
A week later I sat and cried on the phone begging for my doctors to let me have an appointment, due to their rules I was advised to go the walk in, who got me transferred straight to A&E with suspected sepsis. (For those who's hospital has different methods, our hospital is split in red and green sides. Green is clean, temperature below 37.7, no chest or breathing problems, Red is corona symptoms and temperature.) The walk in transferred me to green, but on arrival they tried to divert me to red because I was burning up with a fever. This idea terrified me, severely vulnerable and on the red side. I started with a panic attack and tried to discharge myself, which obviously isn't advised when questioning sepsis, however at that point the thought of sitting around corona  scared me more than sepsis. Mean while the hospital doors are full of people traveling to clap for the NHS, (i'm all for the clap but do it from your door step) People are ignoring rules, sneaking in extra daily exercise, etc. I know this has played a huge part on vulnerable people, so many people have died from underlying problems,  so many elderly people suffered alone in pain, because they're to afraid to attend the hospital. It wasn't until a few days later, when i couldn't manage my symptoms at home that i found out how supportive the NHS were being. I had my own room in a&e, whilst they admitted me they changed my ward because my usual ward had a covid patient and they weren't taking the risk. My anxieties of somewhere new were there, but i honestly had nothing to worry about.
And although my nurses still come home to me and I now have open access at hospital, Its been fourteen weeks now without seeing my GP, which is very rare for me, my surgery follow up treatment got cancelled, my psychology appointments no longer happened. It's crazy to realize how much the normality affects us when its no longer there. However I have recieved amazing support from the Government/Council, sending me food boxes, offering to get my prescriptions, weekly phone calls. My old psychologist even sent me some weekly puzzle books, with letter saying 'I know you're stuck inside, but don't be stuck inside your head.'
Like many, covid has had a huge impact on my mental health. I cry daily, my moods low and I'm super grumpy, but what we all need to remember is our normality has gone, our routines are no longer, our social outings don't exist. Its completely normal to feel fed up, lonely, isolated, there really is support out there though, I've found loads of online support, from book clubs to animal crossing forums. Even though were isolating alone, nobody should feel alone.
I think the hardest thing for me is this lock down lifting. I completely understand that we have to get back on with our lives and life has to get back to normality, but were all taking it at different paces. I am aware that some shielders (depending on illnesses) have now been allowed to carefully lift their quarantine, however my consultant as advised that i continue to shield as he feels its far to early and wants to see if and how a second wave will happen and he's the one that knows me best so. These 'bubbles' having barbecues and garden parties, or those support bubbles meeting up and sleeping over etc, make me super jealous. Don't even get me started on those who have and continue to break the rules.
I have noticed though as rules loosen, the support has started to slack. So as you begin to lift your isolation, enjoy it but remember all around you are the vulnerable. So when you're going on your bike ride, collect your neighbors prescription, when you shop for your family bubble barbecue, pick some food up for the lady down the road who is still isolated. When you do your weekly live bingo in the garden instead  of online, remember the lady who still shielding,  who's alone, who's spent her weeks looking forward to Friday live bingo.

Apart from hospital stays and an urgent shielding house move, Tomorrow will be fourteen weeks of isolating, i've spent that much time stuck in with my cats, I'm convinced one day i'm going to wake up meowing myself.

Be kind, stay safe
As always my contacts are on here and always open!

New year, same me, same illness                   31/12/19

Christmas      24/12/19

Summer 2019

Betty the bag                                                                                                                                       29/8/19

The only people that should be ashamed, are the ones making you feel ashamed

Endo what??                                                                               June2019

April 2019 started with saying Goodbye to my best friend. After seven years of fighting heart and lung disease, the main man went to sleep on the 5th of April. My jasper was much more than a pet, he was there for me when I was upset, there to cuddle in my arms when I was poorly and just generally there to make you smile. He'll be missed millions, but my babies at peace now pain free.​

On the 8th of April I had a bladder procedure, which consisted of 12 injections straight in to the bladder. The procedure itself wasn't to bad, however I ended up back in hospital the day after with a raging infection​

I have started self catheterising as my bladder nerves are severely damaged. My first appointment in the catheter clinic was horrendous, I struggled with the attention and I was super embarrassed. However my catheter nurse is lovely and really does look after me.

Apart  from that my months have been full of infections, hospital appointments and rest really. I've been in and out of hospital for iv antibiotics. 
I have an MRI scan next week just to make sure its okay to go ahead with another surgery. My boyfriends new puppy was born on Tuesday, they are absolutely beautiful and I can't wait for her to grow so we can take her home! (what's his is mine.)

My only limit is Endo

February 2019

Fake it till you make it

Just a very quick blog, another important thing to me is mental heath and as today is #timetotalk I just wanted to post a quick blog. 
Why in 2019 do we still feel it’s okay to discriminate against mental health? To judge people? Ignore them? Exclude them? Bully? Isolate? Talk down to them? 
Why is it okay that people with mental health should feel isolated? Alone? Vulnerable? Unsupported? Unloved? 
Why is okay that people feel that the only answer is suicide? That only way to stop everything, is to end everything? 
And why is it okay that people are made to be ‘stupid’ or different or a failure because they suffer with mental health? 
Why are people judged for seeking help and getting support? 
For the last few years I’ve really struggled with my mental health. I’ve had days where I’ve struggled, days that are okay, days that are pointless and days that are so damn hard. I always felt I had to be bigger and better than mental health and always refused support. But since my partial hysterectomy, when everything’s been to confusing, I found my strength to complete a years of psychiatry.  It took me a while to realise that I wasn’t weak and that what I’d done was pretty damn brave.  But I look back now and think why was I so bothered about asking for help, and you know why? Because there’s so much stigma to mental health. So many judgmental comments. But if we had the flu, we’d be okay to contact a doctor? Or if we broke our arm, it would be normal to go to hospital? So why isn’t it ‘normal’ to get support for our mental health?? 
From one sufferer to another, I beg you to ignore the stigma, ignore the judgmental comments, the looks, hold your head high and reach out to the support you deserve. 
And to one sufferer to a bully, you probably don’t understand what they’re actually going through and in fact you’re so damn lucky to not understand their problems. So be happy, live your own life and help to end the stigma. Next tome you see someone miserable, smile at them, tell them everything will be okay, hold your arms open, offer them a brew, just let them know that somebody just one person cares and you that one person could be the only reason that persons still here! 
’ll do another post next month on endo and mental health but for now hold your heads up high, smile to the world and fake it till you make it! My contacts are on here if anybody needs a listening ear ☺️All the best you lovely people, keep smiling 💜

November 2018- Nobody understands

October 2018- Endotivity

I know i have not posted on here as much as i like to and I've completely failed with my monthly blogs. It wasn't until today that I realized, I haven't been posting on here because i've not had nothing new or positive to write about. But today i remembered exactly why I started blogging...  Endometriosis isn't positive, endometriosis is a horrible, vile, exhausting and isolating illness and we shouldn't have to hide the negativity and sadness we have from it! we are strong independent women and people just understand the way we live and the way we are made to feel! So for my first blog in a while, I want to write about my life exactly with endometriosis, no hidden truths, no fake smiles, exactly what us women with endo go through on a daily basis....   apologies for the lengthy blog, I just have so much to let out and share!

I'm not going to lie my life has been pretty miserable these past months, I have really struggled, physically, emotionally and socially. For those who think us endo sufferers only suffer for five days a month because its only a 'bad period,' couldn't be anymore wrong. The truth is, we can suffer 24/7, we can bleed constantly for days, we can go weeks without a bleed, we can get headaches, joint aches, back aches, depression, nausea, fatigue, we can do days in bed where we don't even have the energy to get dressed, we can sometimes go weeks without any problems, we have mild flares, we have intense flares, we sometimes need hospital admittance's, we sometimes need a week off work and sometimes we just need everyone to accept and see us for who we are. Every day is different, every endo story is different, everybody's treatment is different, but that doesn't mean we don't all suffer the same. 

му ℓιfє ωιтн єи∂σ
I believe that my life is completely different to how it would be, if I wasn't to have endometriosis. 
I've changed the way I live, feel, believe, act, I've changed my dreams, my career choices and my plans, to cater for Endo. I have grown up quickly with endo, I don't take life for granted anymore and I have realized that life is much more important than silly people. 
I sometimes think that 'I am endo,' and although I have to make a lot of decisions judged on having endometriosis, I am not ENDO. I might have endo, but endo doesn't have me. 

ᗪᗩY TO ᗪᗩY
I struggle with endometriosis daily. It isn't something that affects us once in a while. It affects our daily activities, our decisions, even to the point of when we don't have enough energy to shower or what foods endo can cope with today.  Endo doesn't just affect me physically, yes I suffer with pain most days, whether it's excruciating or mild. I suffer a lot with daily activities, which means I miss out on a lot of plans. Even things like going out for a meal, or the cinema, can be such an extreme task when you're suffering so much. Isolation and loneliness is also a huge part of endometriosis, it is so easy to feel left out or not included because you can't physically manage the same plans as everyone else. It is easy to feel alone when stuck in your bedroom poorly. Emotions are usually running high during a flare because of hormone imbalance. I suffer a lot emotionally, because I am super touchy. I also care far to much and I put other people's need before my own not considering the hurt to follow! It's also normal to feel sad and upset, when you're run down and poorly.  

mᎾᎾᎠs
My moods are honestly erratic, I think i'm literally the only person who can be happy and laughing, to crying over something silly like no tea bags. haha
I was diagnosed with depression about five years ago now, not long after an operation during college. I've gone through lots of different feelings, emotions, medications and therapy. I have silly mood swings over silly stuff. I push people away and I tell everyone to leave me alone, when deep down all I want is to be held close and told everything will be okay. I've spent this last year at psychiatry, understanding and working with my emotions and feelings. It's okay to be upset and down over a factor that fits the situation, after all a chronic illness is such a huge deal. However being down over something silly, isn't healthy. And although I have a long way to come, I am slowly understanding and learning how to deal with my emotions. I am slowly finding other ways to express my emotions and to let out my feelings.

ᕼIᗪIᑎG EᑎᗪO
'shameful secret' 
For some silly, ignorant and uneducated reason endometriosis is treated like a shameful secret. We hide so much about it, yet you'd never hide a cold or a broken arm? We feel like we have to put a smile on or cover it up, so that we aren't made to feel unclean, or making others feel uncomfortable. We suffer such intense pain, such horrific bleeding and even things like your uterus bleeding into the abdominal cavity causing intense discomfort. However we cover it up with a smile and use the biggest lies of, 'i'm ok' or 'its just a stomach ache.' 

ᔕYᗰᑭᗩTᕼY
It may seem like us sufferers want your sympathy, we don't! We don't want you feeling bad or gutted for us. We want you to accept us for who we are, understand us and just support us. 

ᏢᎬᏒᎥᎾᎠs
'It is normal, periods hurt a lot.'
As a confused hormonal teenager, I had no other information to go on than what everyone told me. 'you just have bad periods, it is normal.' Yet the way you feel is completely  different to your friends. I was forever being told I was putting it on or making it up, because nobody should be as poorly as I was with just a 'bad period.'

ᏒᎬᏞᎪᏆᎥᎾᏁshᎥᏢs
I'm not going to go to much in to this, even with endo some things in life are private. I am currently in a happy relationship. However it isn't always easy. I suffer with so many personal feelings of not being good enough, for filling my role or being able to offer as much as others could.

fυтυяє
For me personally the future completely terrifies me. I am 22 and have already suffered enough, I've already discussed a full hysterectomy, so the thought of where I will be in 20 years to come, freaks me out. I know were meant to live for now, live day to day, but when you have so many dreams and plans, its terrifying to wonder what will be and what the future holds. 

ｉｎｖｉｓｉｂｌｅ

Invisible illness they say! I may look completely healthy to you, I don't have a plaster cast, I don't have bandages, I don't have rashes. But what you don't see is the scars and adhesion's attached to my organs. 
If this was on the outside of my body, then wouldn't you notice and understand my daily pain?

Its just a bad period                                               August 2018

 Life with Endo-
  Living with endometriosis takes away a lot of them 'normal' aspects of life. Us woman don't always show our suffering because we feel the need to be brave, put on a smile and get on with our day. 
I may not look poorly on the outside, but what you don't see is the affects of my organs inside. You don't feel the effects it has on us physically and you certainly don't understand the effects it has on us emotionally. 
I spend my days fighting against my own body to try and live a normal healthy life. 

June 2018-      Endometriosis is exhausting

I won't moan about everything, but I thought I'd do a quick update on  June.
So the first of June started with one of the most miserable days, which marks four years since I lost my friend, my uncle and my hero. 
So the 12th started with an A&E visit, because I experienced the most horrendous pain. As usual I got fobbed of with it just being an endo flare, go home, take pain relief and rest. Luckily I had a medication review on the Friday and after being super stubborn I went. The doctor wasn't happy with my observations, my temperature was to high and my heart rate was way to fast, The doctor also couldn't touch my stomach without me crying. So he rang an ambulance and admitted me straight to hospital. The surgeon saw me straight away and with the help of a scan and stomach x-ray diagnosed me with a bowel obstruction. My surgeon considered surgery that night, however when all my tests came back my bloods, showed infection and inflammation were far to high and that it would be dangerous to operate because of infection. So a bed on 106, IV antibiotics, fluids and pain relief, lots of rest and fabulous nurses looking after me. 
<<<----- During my hospital stay I met somebody that understood my whole life story. Somebody who understands my tears, my anger, my sadness and basically my daily life. . We spent hours just sharing our stories. I also had a huge temperature spike right before bed and she opened her curtain at the bottom to 'keep an eye on me.' Bless her, what a true endo sister. When you find someone that suffers with the same illness, there really is an instant connection. 
After a long, tiring and scary week in hospital, suffering with the most horrendous infection, with an almighty endo flare and a period. My veins collapsed from weakness and lots of needles and tests, i finally got home with antibiotics and bed rest. The infection was caused from a stomach obstruction from Endo and infected scar tissue!
I just wanted to point out how amazing the staff are on the ward. They've looked after me since I was 16, always remember me, put up with my moods, my strops and my tears and always know how to keep me positive. 
Matty came down to look after me and Mumma was my rock as usual. However by Monday and my doctors check up, my temperature was back at the 40 mark and my heart rate was 136, so back to hospital I went. To be honest Monday was the most poorliest I've been in ages and i honestly couldn't wait to get home to my own bed! So i'm back on antibiotics, stronger pain relief and lots of rest.
Hopefully I'm back on the road to recovery and NO more hospital stays PLEASE. I've had to cancel a few psychiatry appointments with being poorly, but I'm back on track with a double appointment on Wednesday and I see my Endo specialist the week after to discuss where we go now!
On my few spare days from being ill,  i've tried to get on with my life as much as possible. We went to the fair with my Princess and her best friend. And me and Matty have continued to make our relationship stronger and make lots of new memories.
July is a busy month, with psychiatry, a wedding, Gynae appointment, Asthma specialist and Urology. I am also doing an Endo research project on Thursday to raise awareness. I'll hopefully post more next week.
I'm going to leave it here as my bed is calling, however if there's only one thing you remember from this blog, then let it be: That you are not to blame because you have Endometriosis, it is NOT your fault. You are so strong, you fight your own body on a daily basis and you also put up with ignorant people that just don't understand. 
I know some days, you'll feel like you can't carry on anymore and that all this is to much. But please remember you are much stronger than Endo. Endometriosis may continue to grow, but we will also continue to fight! Endo takes enough away from us, don't allow it to take your life. I'm sure I've already shared my details, but they are all on the contact page, if anybody does need a sister to talk to! 

Many people believe that living with endometriosis only affects you during your menstrual period. Endometriosis can cause pain constantly. However living with endometriosis doesn't just stop at pain. Living with endometriosis comes with many other factor.
If endometriosis is severe then it can affects every aspect in a woman's life.
Career-
Endometriosis makes it hard for women to carry out every day tasks, no matter how easy or hard. Women who can't go to work because of bad pain and cramps often face problems at work, as well as having feelings of guilt and shame.
*Relationships
Family -
Partners-
Endometriosis often causes painful sex. 
It can also lead to problems when family planning which can put a strain on a relationship. 
*Social effects
Friendships-
Emotional effects-
Endometriosis affects many women's self-esteem. The recurring pain often leaves ladies questioning and doubting themselves. Often young women with severe symptoms find it hard to develop positive relationships with their own body.
Chronic pain often leads to tiredness, moods and depression. 
Physical-


Finding ways to enjoy your life and not let endometriosis completely rule it involves lots of difficult decisions. 
I've come to accept that I will be in pain on a daily basis. However I have also learnt about how important it is to stay positive. I need to stop allowing endometriosis control my life!

March is Endometriosis month - 2018

​So as many of you know March is the month us endo sisters come together to make this silly illness known. 
​Firstly though- My months update- The last few weeks have been ridiculously hard and I have really had my strengths pushed. February ended with a BSGE appointment and 'another' therapy assessment. Those of you that follow my blogs will know how difficult I find it to talk openly about myself (hence why I started these blogs) and also how anxious I get meeting new people. So to put them together, not only talking to a stranger but talking to a stranger about myself was really a huge deal for me.... And then March started with having to do it all again, with meeting a new therapist. I won't go to much in to Psychiatry, as I want to keep it personal until I feel I am 'finished' and am 'ready' to share my story. However I have really struggled starting psychiatry, I don't know what was worse meeting new people, talking about myself or actually accepting help. I've found it so hard since starting and some days I am doubtful I will even get through them. But the accomplishment I feel for managing to do something i told myself i never would, is what makes me want to carry it on.


Anyway... This is my third year joining in with the 'endo march awareness challenge' and although i make a huge effort to spread yellow awareness daily, i am hugely passionate about this years campaign of raising awareness in schools and to young people. School was where i started with my struggle, but of course it wasn't diagnosed so i was always got told I was either faking, attention seeking or it was all in my head. And if that wasn't bad enough i fought to keep my place in a main stream school and to study and sit my GCSES despite the countless times I was told id leave school without any grades.
Periods and gynae related are often things we find 'dirty' or are ashamed to talk about, until my diagnosis i wouldn't have dreamed of talking about my experiences and symptoms. But it really is okay to talk period! I often wonder if i was aware of this unknown word 'endometriosis' could my diagnosis have been any quicker?
I think it is so important that the community is aware of the illness, so that we can end the ignorance. Endometriosis should be discussed, it is not normal to have killer cramps and endometriosis is not just a painful period.


I remember the day i got my diagnosis and a consultant was telling me I have this illness that I couldn't even say, let alone understand. I didn't know what to do, or where to go next. However luckily my BSGE research consultant introduced me to endouk, where i then went on to instagram. I've met some amazing, strong and supportive endo sisters and chronic warriors. I am so grateful for all the support I have received through the endo community.
​
I apologise that this blog is rushed and boring, i'm struggling at the minute. Aprils will be better, i promise. Have a lovely Easter

Endometriosis awareness month

'Do mad people get endometriosis or does endometriosis make you mad!?'

So considering February starts with February 1st which is #timetotalk day. I wanted to make this months blog mainly about mental health!
I'm not going to lie I've really struggled my self these last few weeks, I am so grateful for my old therapist and my psychiatrist for putting me a new psychiatry plan in place!
Why are we ashamed to talk mental health? Is it because we are embarrassed? Scared? Think we are failures?
Well let me tell you, there is no right or wrongs way to manage your mental illnesses. You are not less of a person for needing medication or having to go to therapy multiple times. If something helps your mental health, stick to it, take the time to do it. Don't stop, no matter what other people think.


Mental health is so common, it can affect anyone. The trouble is nobody wants to talk about it and that makes everything worse!
'Stigma or discrimination attached to mental illnesses presents a serious barrier, not only to diagnose and treat but also for acceptance in the community'


The other week I saw an endo sister post, 'do mad people get endometriosis, or does endometriosis make you mad?' Although worded completely wrong, I completely understand the link to this. It is medically proved that endometriosis is linked to depression, self worth, low moods etc.
Women with endometriosis are at risk of developing anxiety or depression caused by the symptoms of the disease and also the length of time of the diagnosis. On average it takes between 7 and 10 years to diagnose endometriosis, the effects of not being listened to can lead to fustration, anger, sadness. Having your life put on hold because of these symptoms which haven't been diagnosed and according to many doctors are 'all in your head' is exausting. Ladies with endometriosis often suffer chronic, invisible pain, financial problems, relationship breakdown, worries about fertility, effects from treatments, frequent surgeries and hormonal therapy.
Is there really any wonder endometriosis and mental health is connected? So no my friend, you aren't mad, you are one of the strongest people going, you fight a battle every day that 80% of people have never heard about, never mind understand! So if you need a week off work to recharge your batteries, then that is fine. If you need to scream and cry, go ahead, if you need antidepressants, don't be ashamed to take them and if you need therapy, be strong, be brave and get the help you deserve!


The most important thing to help, is your support system. Never ever suffer alone, I am lucky enough to have a couple of amazing close friends. Don't be ashamed to ask for help.
My contacts are in the about me, but if you need any love or support then my Instagram is @endoprincessxx or nikkix96@icloud.com You really are never alone!
'I want to live in a world where no one feels ashamed to talk about mental health!'

New year 2018

Hello lovelies, I do apologise I am super late with January's blog. Life has been pretty shit just lately.
So first of all Happy New Year to you all! I wish you all the happiest and healthiest year as possible!

I am not going to go into every little detail, but my new year goals didn't go as planned! My health has been bad and so has MH. I started the year with spending New Year's Day at the out of hours doctors, with a raging infection and then a few days in hospital the week after!
So much to 'new year, no more hospitals' who was I kidding, that of course wasn't going to happen!
I have also joined back slimming world in January, although I'm really lacking motivation and it isn't going great! On the 19th of January, I attended my first camp since my diagnosis. I really was nervous with already being poorly and not knowing how endo was going to behave. It was a fab weekend though and even turned into a camp in the snow!
I saw gastro this month too and started on some new tablets!
The month ended with a new psychiatry assessment, which I must admit was absolutely horrendous and I'm pretty sure I cried all the way through it! However I finally have a plan in place and really am hoping this will help!
Then February also started with hospital visits and an infection.
I think that is about it for this month, I don't think February can be any worse than January but we will soon see! Keep smiling lovelies. X

Lets end endo!

I was excited to find out that this year’s endometriosis campaign is to educate girls about endometriosis.
Endometriosis starts at any age, you are not to young to have endo.
I couldn’t begin to tell you how many doctors, well people in general have told me, that I am to young to be this poorly, or I’m to young to be on all these medications, I’ll never forget the argument I had with my gp about her doubting I was having an oophorectomy, because I was far to young. Defiantly made her apologise when she scrolled up to my specialists letter.
Endometriosis is such an horrendous illness, the symptoms, the side affects, he appointments, the tests, the medication, the emotional side to it. The whole thing is scary and exhausting. Nobody should feel alone about endometriosis.
I’m so excited over this year’s campaign, because during my school years I went through so much trouble and ignorance.
I was constantly told I was faking, because I hate school and just didn’t want to go in. I was told I wasn’t capable of being in a main stream school and should attend a specialist medical school. I was told I didn’t have a diagnosis so I was fine. My deputy even told me I’d never get my GCSES and I wouldn’t get in to college. I had no support at all through High school and at that point my medical problems were still a mystery. I remember never talking about my problems, or periods as it was all embarrassing and dirty.
I also remember the day I got diagnosed, I couldn’t even say the word never mind know what it was. Imagine how much easier it would be if you had already heard about endo, were aware of the symptoms, how it makes people feel. Imagine how supportive you could be to a friend diagnosed, once you’ve been educated.

I really do believe it is important to educate people about endometriosis. Not to scare them, but to make people aware. Endometriosis is an invisible illness, but it’s an illness so many people suffer from alone!

Fortunately I took everything what got thrown at me, as a goal to prove wrong. I knew I wasn’t going to let them dictate my life. If I wanted it bad enough then I would fight and I would achieve.
I am 21, I’ve had 8 operations and a partial hysterectomy, I’ve seen six different gynaes, I’ve paid private, I’ve gone through medical menopause. I’ve cried about my future, I’ve considered quiting college, I sat my exams at home and hospital. But here I still am, fighting and living my life!
Nobody should go through that alone.
Yes life with endo is hard, but I’m no different? I am still capable. I’d also like to use my experience to help and educate others and to support others going through similar.
Let’s end endo

A new adventure

For the past few months I've felt like I haven't for filled my job role, so I am starting the new year with a new job.
I'm super nervous as I'm going back to a permanent position and I'm so worried about letting people down and failing.
So many people have told me that I am in the wrong job, that I shouldn't work with littles ones and germs with an auto immune illness. I have thought about it a few times, but then I always struggle to find a career I would enjoy doing if it wasn't with children? Also if I change my career plans because of my illness, am I not just letting my illness win!?

People tell you to be as honest as possible with your employees about your illness. I will be honest I didn't mention a thing until I knew my position was secured. Although it shouldn't happen so many people discriminate against illnesses. However once I was offered the job, I was completely honest with my new manager. I think its important that they are aware and understand your illness fully. It is much better if something happens for your works to already be aware, than just suddenly find out about an illness because you need emergency time off. It is completely up to you how much detail you give and who you tell, your manager should be completely professional and only the basics should be told to the people who actually need to know.

Work can be hard and sometimes it seems easier to just get on with struggling than making a fuss. However it is important that your works accommodate for you. Such as working from home, less hours, comfier chair? I simply explained about my follow ups and scans and to ensure my manager is aware that appointment will need to be scheduled into my rota. However some bosses will not be eager to cater to your needs, so don't feel guilty about going above their head, explain your condition and why you need the accommodations. Some illnesses are classed as disabilities so needs have to be met.

Every work place has bullies, people find it so easy to judge and comment especially over an invisible illness as they don't always see the symptoms. Harder said than done, but try not to take it to heart. If you feel comfortable enough, explain your situation, a lot of judgmental comments are just from ignorance. Keep a note of any comments and dates and times, so that you have it all noted for when you need to take it to your manager.

Make sure you look after yourself! You can't take care of others, if you don't take care of yourself. I am such a pain for skipping meals and not drinking enough. So I am going to try and start with three small meals a day and back on my advised 2 litre fluid intake. Sleep is important to and I am hoping that once I am in a better working routine, my sleeping routine will get better. Remember to follow doctors orders, don't put of an appointment because you 'don't have time.' As soon as you start to feel poorly, address the issue. Putting off care and seeing a Doctor can cause complications, more days out of work and a longer recovery time. Use your days off to recuperate.

Battling a chronic illness is physically and mentally exhausting. It is important that you have a good support system. It is completely normal to feel sad or angry about what is happening to you, but dealing with these emotions is key!

Being prepared is important, everybody calls my bag the mary poppins bag. It is always full of everything! I always make sure I have pain relief, headache tablets, hormone tablets, cool and mist spray, towels, fan, tissues, brush, charger, spray, list of medications. You never know what you may need there and then. I am also going to invest in some sticky heat pads ready to start my new job.

Do the most difficult tasks when you are most able and hold back simpler tasks.
Don't be ashamed to ask for help.
On a good day prepare for the next day- meal prep, get your outfits ready.
Stagger your holidays- Pace your leave for when your body needs a break, make time for you and what you want to do with your day.
Emergency supplies- Keep useful things in reach, painkillers, heat pads, chocolate.
Take breaks- Make your breaks worth while.
Dress comfortably- loose clothes will help. I already have my slippers ready to take on my first day!
Remind yourself of why you keep working- Think of your goals and what you want to accomplish. Remind yourself about how important working is to you.
Sick leave- Don't feel guilty about taking time off.

Never ever forget that you are more than just your illness. You are not the disease you are battling!

October 2017- your illness does not define you, your strength and courage does!

Just a little update of life-
​So November ended with a couple of hospital admissions, as I have bad adhesions on my bladder and bowel. So been referred for treatment for that. A scan shows that my bladder isn't functioning properly, so another scan in two weeks and a joint appointment with gynae and urology. I have had some of my tablets changed again, waiting for results to monitor my immune system and see what treatment I start from there. As I really need something for my auto immune, as I literally pick anything and everything up!
It's been a rough few weeks where everything has just got to much and I've not known what the right decision is.
Although I have absolutely loved working where I am, I've realised I have sacrificed my career and my plans to cater for endometriosis. It's taken a few horrible comments to make me realise but after a cry I've realised that its time to stop taking It to heart and to get on with my life.  Why am I not following my career dream? In case I get admitted in hospital? In case I'm poorly and need a day off to recuperate? Or what if I need another operation? The likely hood to all of them is possible with a chronic illness, but they aren't going to stop me no more. Why do I allow others and myself to put me down? Make me feel like I aren't capable of my job? Make me feel like I aren't included?
​After lots of tears and strops I have finally decided to move on from my bank position and to go onto a permanent position, where I will belong in a room and have my own key children! I absolutely can not wait to start my new adventure in January.
​With a few wonderful peoples help I've learnt that I shouldn't be sacrificing my life because of an illness. My illness does not define me, I am not my illness!
I'm not going to lie I am a little bit gutted to be leaving, I feel like this job has really shaped me. It really has made me realise that I am not to settle for second best, if you're going to do something you might aswell do it a 100%. It's taught me not to take so much to heart and that there really is some opinionated people, but they really don't matter. Who are they to judge me and my life?? However I have also met some fabulous ladies, that have listened to me, laughed with me and that have even believed in me,  when I haven't believed in myself. I know if it wasn't for my manager, my deputy and my work bestie I would have given up a while ago! I am super grateful to them for supporting me, believing in me and well just giving me the chance! Literally can not believe I have two weeks left, after considering quitting since coming back from my operation, I've finally gotten over my anxiety and have been brave. It really is the best time of the year to enjoy the last two weeks with my kiddies though!!
​Huge thank you to my old manager for giving me the opportunity and my new manager for absolutely everything over the past five months. I know you tell me 'it's my job, I'm there for my staff' but you really have been more than 'there' for me and I will forever be grateful for that! I'll stop whining now, I promise ;) My work bestie, who I've really only known for a few months, yet can make more sense out of my life than I can! Thankyou for everything lovely, for letting me cry on you, just listening to me, for your most amazing advice and for just being you! And of course my work girlies, I've absolutely loved working with most of you and thank you for all your support.
​This will probably be my last update of the year. I really am looking forward to spending Christmas with my family and most loved ones, after spending last Christmas in hospital! Its been a year full of ups and downs, I've gone through a lot, positive and negative but all that have helped to make me the person I am today. My manager told me last week that I am a completely different person from the person I was at the beginning of the year. Being as stubborn as I am, I obviously argued, But thinking about it she really is right (as always).
​Thank you to everybody who has supported me this year, been there for me, messaged me or simply just given me a hug when needed! And also for those who have just helped me to prove you all wrong and to be stronger and better. :)
​Have a fabulous Christmas, remember if you haven't achieved what you wanted to do this year, there is always next year! And as I've decided- you really haven't failed life unless you don't dance the funky chicken at your 75th wedding anniversary.

Learning to say no without feeling guilty

'what if i fall?' But darling what if you fly

Be strong enough to stand alone, smart enough to know when you need help and brave enough to be able to ask for it!
​Why is asking for help or going to others for support such a big problem?!
Many people will often offer it without even thinking about it. Yet to us chronic warriors, just to ask for help is such a big deal? I used to feel that I'm supposed to be 'strong,' I'm suppose to live with this, to get on with it, to cope, to deal with it, to be able to manage and to live life like nothings wrong. But is that really true?
​There really is so much negativity when it comes to chronic illnesses. The misdiagnosis's are bad enough, getting fobbed from one doctor to another, being told different stories. Not being believed, being made to believe your symptoms are in your head. Then school/college friends,  colleagues. There is always that  'letting someone down.'  You'd push endo as much as you can, carry on although the pain is ridiculous, get on with the day like nothing is wrong, all because of the fear of 'failing' and letting others down, not being good enough.
​I used to be so secretive about my illness, not many people knew about endo or my constant battle with chronic pain. I guess this was my way of protecting myself, avoiding the judgmental comments as much as possible. It has only really been the last two years that I've started to talk about endo and still I've always been careful to how much I open up and to who.
​Since the count down of my operation, having my op and recovery, I've started to care less about opening up more.
I've really struggled these last couple of weeks, since going back to work. It's taken me the past few days to realise why I've found it so hard, when I love my job, I love my place of work and the girls are fabulous. I'd become so emotional when someone would say 'you know where I am' or 'how are you doing?'.  It was only today whilst talking to my manager that I realised that actually it's probably the first time since my diagnosis that I've actually properly been supported. Yes I've had my family and close friends. But to actually be viewed as a 'team member' and not just 'somebody who's always ill.'
​I've actually felt comfortable enough to open up to my work girls, to talk about everything  I've been through without feeling judged. I've found myself questioning what I'm doing with my life, that I feel I haven't gotten to where I should be. I've now realised that my illness isn't a problem, yes they'll be challenges, they'll be hurdles, but just like I always have without realising, i'll get through them!  
I've struggled with quitting my full time job, to go to bank staff. Not feeling good enough, like I'm achieving enough. But maybe its because I have settled for second best? Maybe I gave up on myself. I've always been hard on myself, when everythings not gone to plan. I've always blamed myself. ?It was the end of the world for only getting C's in my GCSES, I remember the melt down I had over sitting my exams at home, doing some of my placement hours on a friend rather than at settings like it says in the book. Not stuck out my jobs for long. But in reality, I passed all of my GCSES, when I had more than half my time off school, I passed my qualifications whilst going through four operations and a life changing diagnosis, I've done the job I qualified to do (again with another three operations thrown in) and somewhere i'd like to say that I've made a difference on a child and their families life. I went through the most horrendous surgery at the age of twenty.
I've had melt downs over the last week or so, I've cried, I've questioned what i'm even doing with my life, I've convinced myself and others that I'm a failure and that I'm not capable.
​It's taken me major surgery, lots of strops and melt downs and supportive people to actually realise that I need to get control back of my life and kick endos butt. It may have taken my teen life, my college experiences, my ovary and whatever else, but it hasn't taken my life!
It's taken me ages to write this, I've deleted it and re wrote it so many times. But I suppose my point is, don't let it take you seven years like it has me, to realise how strong you are, how incredible you are and how appreciated you are! Next time one little thing goes wrong, think about how many things you've already gotten through even if they weren't exactly how you planned? 
 The amount of times I've asked my manager over the past few days, 'but what if?' 'what if I fail?' 'what if it's to hard?' 'what if I don't like it.' Ive always received the same answer, 'if you can go through all this, then you can get through anything.'
​I've been lucky enough to have somebody believe in me, to remind me how strong I actually am and how much I've already gone through.
I never realised how hard life actually is. When leaving school you look at college, uni and then working in that perfect job you've always wanted. Nobody tells you about the side tracks, the hiccups, the bits that knock you off plan. I got to a point where I stopped trying, I stopped living my life,  because I believed that endo would take over anyway. I'm so grateful to have had the realisation of 'you may have given up on yourself, but others haven't given up on you!' It was literally just that little kick from my manager, that I needed!
​I'll be forever grateful to everybody who's supported me through some of the worst things I've gone through. My mum, my best friends, the ward nurses, the patients that have kept me going and I'm still in contact with now, endosisters, my surgeon and his amazing manager,  judgmental people for letting me prove you wrong, my old manager for giving me a chance, my work girlies who are amazingly supportive and of course my new manager for believing in me and knocking some sense in to me.
​There's always someone out their to support you. so don't be stubborn like me, make sure you accept peoples love and support. I honestly wouldn't be where I am today without other people's support. And I probably wouldn't even be here if it wasn't for my therapist and my best friend.
​I've began to realise that we all need a little bit of support to help us to stay strong and that really is okay!
​Life may be ten times easier without endo, but would it still be as valuable? would I still be as grateful as I am? Would I be as strong as I am? Of course not.
Endo is my story, endo is what has made me emotional, strong, confident and the person I am today!
​Remember- You may fall down nine times, but you'll stand up ten!

October 2017

October has been super busy!
​The month started with a really bad uti, kidney infection and thrush. I saw my consultant on the 4th of October. He said he was really impressed with how far I have come and how proud of myself I should be! I also popped in to work on the 3rd of October, one of my little girls cried because I was going home. So I knew it was time to get back to it! So on the 9th I started back work. I'm trying to keep my shifts as short as possible, sometimes its a struggle and I find myself in bed by 7oclock,  but I'm super happy to be back at work!
​On the 14th, I celebrated my 21st Birthday! Defiantly aren't mature enough to be 21! It was a lovely weekend with family and close friends!
​I have my 10 week review on the 31st! I cant wait to see where we go next.
​This month I also covered a few shifts at our companies other nursery. For those of you that know me you know how change is for me, I really don't do new environments and new challenges. However the girls were all fabulous and the children are adorable!
​THROWBACK-
​3 years ago on the 1st of October was the start of everything! Although I had already suffered for years before I was always told it was in my head. Until three years ago when I got rushed in to a hospital with a misdiagnosis of appendicitis, which actually turned out to be endometriosis. As horrifying it was, I was so happy to get a diagnosis.
​2 years ago I spent my 19th Birthday in hospital. It was horrible to be stuck in hospital and in so much pain. But the support and love was absolutely amazing! I still remember the stay and the staff! To wake up with banners on my door, birthday cards on my table and a little cake at lunch time! It's little things like that, which make this horrible illness a little better.

​It has been a super long six weeks, with lots of complications, infections, medicines, strops and tears. I'm eight weeks through to full recovery and although I’m still a little bit sore, I couldn’t be happier to be getting back to normal and back to work.
It is defiantly the most horrendous thing I’ve been through and although endometriosis is a life long illness, I really am hoping all this makes a difference! I couldn't have got through all of this without the support from everybody. I wont lie, its been hard and I've constantly been an emotional mess. It's now time to take control and to get my life back on track!
​
If it's anything things like this teach you, its who your real friends are.
Also never be scared to talk periods, fertility and all that lady stuff! Endos a horrible disease and no one should go through it alone!

Goodbye summer, Hello Autumn

Be prepared

So I have just started to pack my hospital bag, yes I know I have a month but I like to be organised.
​It made me think though, what do you actually pack for an operation? There is never no guideline, no instructions of what to take or not to take, no advice or no help. I have experienced this lots of times before though, so fortunately have an idea of what you need with you in that place! However I can imagine if it was your first operation how daunting and confusing this process may be.
​So here is just a quick list of ideas that I will be taking with me.
Operation hospital bag-
🎗️All of your own medications
🎗️Pyjamas or nightie, I have both packed. Remembering to keep them loose and comfy.
🎗️slippers
🎗️Dressing gown
🎗️Underwear, ladies don't be ashamed to have granny pants packed they will be the comfiest,
​🎗️Change of comfy clothes
🎗️Reading glasses if you wear them
🎗️Toiletries-
​Tooth brush and toothpaste
​Flannel and a hand towel
Shower gel
Shampoo, I have normal shampoo and dry shampoo packed.
Deodrant and body spray- nothing wrong with smelling nice in hospital.
Sanitary towels
Hair brush, comb, pocket mirror and bobbles
​Lip balm or Vaseline, hospital air is always dry
​Baby wipes
​🎗️​Some loose change, not to much.
​🎗️​Throat sweets- the tube in theatre can sometimes cause a sore throat.
🎗️Earplugs, ​I personally never bother but I do know lots of people that take earplugs for sleeping.
🎗️​Heat pad- My electric water bottle is my new best friend!
🎗️​Something to stop you from going insane- I personally have my journal and some pretty pens, my ipad, a book and I'm sure people will visit with magazines. Don't forget your phone and chargers.
🎗️​A cushion to put against your stomach for the journey home and I will also take a blanket for in the car.
I will be staying in hospital for a few days so I have a case full, however a basic day operation list may look similar to:
ALL of your medications you are currently taking, including over the counter ones too,
Dressing gown,
Slippers,
​Reading glasses are important as you will have to read and sign forms.
​comfy/lose clothes to slip in to after, remember your stomach will be very sore,
​Reading material- Book/kindle/ebook/magazine
​Cushion to put against your stomach for the journey home.
​Leave any valuable at home

Living with endometriosis