My Story…

This is my story – in it’s entirety.

This was my tipping point, the point where I realised I could not continue the way I was going. This was the start of something new.

Nobody really knows how much anyone else is hurting. We could be standing next to someone who is completely broken, and we would never know. Everyone you meet is fighting a battle you have no idea about

So, be kind – always. With yourself, and others…

This is my story.

In order for me to truly blog about changing and thrivingfinding my glow. I felt I had to share how I lost it in the first place.

I established in my first blog that before my operation I was an extremely unhealthy person. Truth be told I was just exhausted, fed up and desperate for a new lease of life. Surviving.

I used to glow and be such a positive person. I was enthusiastic, used to dance through life just loving it, I seemed to take everything in my stride. My grandma used to call me her sunshine, she told me I shone on others and made them feel warm. So how did I get thriving to surviving?

I used to be one of the healthiest people I knew. I was a professional dancer/singer. I ate brilliantly, exercised every day and really looked after myself. My first job was in Israel, it was amazing! I was 18 years old, working 1-2 hours a day, staying in a beautiful resort completely free, whilst during the day sitting in the 40 degree sun – bliss!

Israel

I had always enjoyed performing as a hobby but soon after I started this contract (as amazing as it was) I realised that this career was not for me. I was doing the same thing day in day out, I was losing my passion for my favourite thing to do in the world (performing), and I was being restricted. I also wanted stability, I didn’t have the guts to not know where my next job was coming from.

All of my friends that work in the performance industry now – I take my hat off to you. You must be the strongest most driven people I know, I’m so proud of you.

Aerial view of London and the River Thames

 

I left Israel and moved to London. I stayed there 5 years in which time I went from working as a hostess for a large hospitality company (sitting guests down at tables) to within 3 years being a regional brand/training manager for the same company.

These were some of the best years of my life. I met some incredible people. I was learning, every day, at a rapid pace. Not just about business but about people. My colleagues were so multi-cultural, I listened to their stories and understood their backgrounds from all over the world. We all encouraged each other, we all became like family. I loved it!

I loved my job. I helped people. Everyday. I felt like I had found my forte, I would go to different cities every week and help train and support different people. I made them more confident in themselves, I made them believe they could achieve more. I encouraged people to set their personal standards higher, which in turn raised the business standards. As a result the customers got a better experience, the company made more money and I got rewarded – ace!

The only negative was it was very unhealthy! I had taken up smoking in London, I drank a lot of coffee and caffeinated drinks like monster and red bull, worked late nights/early mornings (typical hospitality hours), I ate when I was hungry whatever was around (Usually fast food or leftovers at work) and eventually one day it caught up with me.

I had gone from doing something that I knew in my heart wasn’t right for me – and being really healthy. To doing a job I totally loved – and being very unhealthy. I was young, I didn’t put my health high up on my priority list, when I was Ill I took antibiotics or painkillers and carried on…that was normal was it not?

I had suffered with repeat water and pelvic infections for years, I had them from when I very first started my period in my very early teens.

Everyone woman remembers their first period… Yes, I am going there, I am taking about periods – ha!  I sort of have to when I’m discussing endometriosis…I said I would be honest.

It was a big change in my life – I had become a woman (and it was bloody painful). I mean just horrendous.

My first experience was like a bleeding horror film, definitely not what I was expecting.I remember flooding my Nanas’ spare bed in agony whilst my parents were on holiday. I remember the pain and crying my eyes out and my lovely Nana looking after me with a hot water bottle and a cuppa.

I didn’t know at the time that these pains were not normal, neither did I have any idea at all what I would end up experiencing in later life! I just learned to deal with it, took pain killers and just moaned at my poor mum for a year – sorry mum. I went on a contraceptive pill soon followed by a contraceptive injection at 12 years old to try and control the pain and bleeding.

I used to really heavily bleed and by going through various pills/injections it was the only way to keep myself going. College years were mortifying – Stood in a ballet class in light pink tights and boom! The worst happens and your running out the room as fast as you can before everyone sees the total mess down the inside of your legs. Luckily my friends at college were incredibly supportive and I’m still very lucky to have them in my life now.

College 1

So these water/pelvis infections and horrendous periods continued all through my most important growing up years. I used to get told “you’re a dancer you aren’t drinking enough water” “you aren’t eating the right foods to fuel your body” and the doctors always said the same thing “you’ve got a small urethra”. I do! Ha! They weren’t lying – I went for a camera in my bladder once as a teen to find out what the problem was, I remember screaming and uncontrollably crying when they tried to put this tiny thing in and me bleeding for days after – apparently I had a small urethra (pee hole).

You are now all thinking seriously could this get anymore daft!

So now every time I went to the docs with a water infection, (literally 2 infections a month) that was the excuse. Until – one day a few years later, I collapsed at work.

My bladder infection (that I seriously just don’t think went away for about 3 years) because I worked too hard and loved my job had turned into a kidney infection and by body just said no. Not doing this. Stop now. It was about a week before Christmas 2011. I went in the hospital, they told me I had a kidney infection and I had to stop and rest, two things I’ve never been very good at doing! So I went home for some mummy TLC for Christmas early, dosed myself up on Tramadol and antibiotics, got better, then of course – went right back to doing what I was doing before – Working silly hours, coffee and cigarettes and I just didn’t take the hint.

My body told me I needed to change and I didn’t listen. I promised my mum I’d drink more water and look after myself more but that soon switched back to red bull…again I collapsed at work.

This time was at a work party. I thought I was drunk or someone had spiked my drink?! I was falling about everywhere and projectile vomiting and I’d only had two drinks, but this time it didn’t go away?!

A whole week I spent on my own in a hotel room in London and I still couldn’t get hydrated and I couldn’t shift this sickness. I reluctantly (because I’m usually too stubborn to get help) rang my sister in law, got on a train, (in the beyond gross state I was in), and went home. Spewing the whole way – delightful. My sister took one look at me and took me straight to A&E! She said I was green. I thought I had gastroenteritis, or had yet another kidney infection.

It turned out I was pregnant and had severe morning sickness…

Lilly baby 1OH.MY.DAYS.

My body HAD to stop now. There was no question. My life had changed forever in those few words “having a baby”.  I was going to be a mother?! Me?! I rang my best mate and after quite a few bleeps and ‘Ha! You are joking right!’ she said – ‘this is not you’. She sat on a bench and cried for me. She couldn’t get her head around it. Safe to say my mind was well and truly blown.

I know what you are all thinking – Why did I not know?

Firstly I was tiny, far too thin, I didn’t show until about 7 months down the line. Secondly I had been taking a contraceptive pill by his point for 10 years! So I didn’t have periods?! No bleeding, no cycle, nothing?! My sister will tell you my face in that hospital room was not a pretty picture. I felt like the walls had come in on my face and literally knocked me out, I genuinely thought with no period it was totally impossible – it was possible.

My pregnancy I was totally in denial of what was going to happen me and spent the whole 9 months trying to hide my stomach. I got towards the final stretch and endured a particularly bad bout of pre-natal depression. I was a single mum, I was leaving a job I absolutely loved, a lifestyle that wasn’t great but that I enjoyed so so much and I was going to have a baby I felt that I could give NOTHING to. Not a family, a home, nothing – just me.

This poor child was coming into the world to me – and I wasn’t good enough.

There is a reason for me divulging all this information, telling you the back story. All of this time from a young girl of 12 to a mum to be at 23 I struggled with Endometriosis. I kept going, focused on the positives and got used to the pain because emotionally I was doing ok so I could handle it. It was slowly grinding me down and my glow was slowly wearing off particularly throughout my pregnancy.

If I’m going to talk about finding your glow – I need to share how I well and truly lost mine.My grandma, my best friend, my absolute rock of my life had a stroke just before I gave birth to Lilly, the time where I needed her the most.

I lost her and I lost my glow completely.

Lilly 2013

When Lilly came it was instant love, she was totally perfect in every way but I felt like I still had to live my life the way it was? I felt detached from my baby. It took the doctors and my parents a while to persuade me that all my baby needed was me. But I don’t think I realised this until quite a while after she was born.

I couldn’t prioritise work/baby/me, I struggled emotionally and made some very bad decisions particularly in that first 6 months. I just didn’t know what I was doing?! I had no idea what I was letting myself in for at all, and I didn’t have granny to talk to, I was grieving.

My way of combatting that was sticking to what I know best – work! Routine, work and money. When Lilly was 4 months old – I went back to work. With it came the tiredness, coffee, cigarettes and crap lifestyle. Except this time I had to go home and put someone else’s needs before my own – Lilly’s.

I would easily say that year was the most difficult year of my life. It was a mental illness pre/post-natal depression that I was in complete denial about and wouldn’t get any help for. I was grieving and I topped off with what can only be described as a disability.

I didn’t know what this disability was yet, but I knew that there was something going on with me that completely wasn’t right and I was hell bent on finding out what. By this point, emotionally I was shattered, I was struggling to find the will power to carry on and most of all I was sick of the pain!

Whilst pregnant I obviously stopped my pills/injection that had for 10 years kept my bleeding under control, and by control I mean I didn’t have periods, I didn’t bleed at all. After having Lilly my periods came back and my body went crazy. I mean completely crazy. THE most difficult year of my life. Endometriosis at this point for me was a disability. It was uncontrollable, I couldn’t manage the pain and took over my body. Even more frustrating – I still didn’t know I had it.

Bleeding, agony, horrendous periods, not being able to breathe through the pains for what felt like the whole month, every month. Before, during, after it was just a vicious cycle! Pretty much every month I couldn’t go to work for 2/3 days minimum because of my periods?! I mean was I being a complete wuss?? Surely this can’t be right?

Not only that but the bladder and pelvic problems came flooding back, infection after infection, over and over. Hospital trips pretty much every month through pain or infection or I needed a catheter in cause my pee hole just shut closed? Totally embarrassing – but when you can’t pee you have no choice!

What was happening to me? Why was this so much worse? Headaches, migraines, aching back, aching body, pain and bleeding during constantly, but most of all I felt utterly exhausted and depressed. I had a one year old (a beautiful totally amazing one year old), I worked full time and had all this going on around me.

Always be kind – some people around this time were not kind to me. I hope one day you read this and see how your unkindness could have pushed a young woman over the edge – very easily.

The only incredible thing to come out of this year (obviously other than my gorgeous little girl) was I met my man, my rock. My gran always said ‘the lord gives and the lord takes away’. He took my grandma, but thank goodness he gave me Rob.

I mean come on – not exactly the best year for him to come swooning in the poor bugger! For some reason he stayed – and I am truly blessed to have him. Safe to say he knows me inside and out. I helped him how I could with issues he had but I don’t think he will ever know how much he helped me. I was no longer my Grandmas’ sunshine. I wasn’t lighting up at all. He gave me love when I needed it the most – When I was on the edge and in the dark. I love you.

me and rob

I kept going because I’m strong willed, my family and Rob gave me some strength, positivity, happiness and they supported me. They got it now, they saw me suffer and they tried to encourage me to focus on things that made me happy. I had to carry on for my daughter’s sake, I could not fail in front of her. I would not allow it.

After a stupid and pretty mortifying amount of times going to and from the hospital and doctors I finally got a referral to a gynaecologist to have a look at what on earth was going on with me.

The first thing he did was a smear test. I was 23.

I had the smear one week and within a week I was back in the hospital, I had CIN 2 abnormal cells and HPV virus. That’s what it said in my letter, I had NO idea what was going on?! I was like – do I have cancer?! Is that the issue? Why would I have these dodgy cells? Do I have an STD? What the hell do I tell my partner?! I thought you had smear test at 25? All these questions – but really all that mattered was that I got rid of them! They did biopsies and burnt them away. The biopsies showed that they were actually CIN 3 – the last stage of cells before cervical cancer.

So listen here ladies – 23 was when I first had a bad smear. The UK standard age to have a smear is 25 – thank god I had one early. I will always campaign for this to be changed (that is for another blog) but never miss your smears!!

Following the smear – it only got worse.

I went back to my lovely gynaecologist 3 months later, he asked me how I was and if that had helped the procedure I had done. The answer was NO. If anything (although I was relieved I didn’t have bloody cancer) I still felt terrible in fact probably much worse! I had to sit there in TEARS and plead with my gynaecologist to please sort me out. Find what on earth was wrong. So a full year later of being told it may just be heavy periods and again more trips to the hospital and infection after infection I finally got some answers.

I had a laparoscopy done at 24, (a camera inside my belly button), to have a look at what was going on in my womb – or so I thought. I was going in for the morning for “investigatory” surgery. A few days off work whilst the anaesthetic wore off and done.

I was also about 6 weeks off from doing ‘Sister Act’ at the Harrogate Theatre, I was the lead! Whoopi! It was the best thing I could have done, I got back on a stage as a hobby. The people I was doing it with were the most wonderful, supportive, just inspirational people and I couldn’t wait! My mum and my other half pushed me to do it and it really did give me some glow back.

Sister Act 2015

But…it was then that the doctors found it. Great timing.

After 12 years of suffering and not knowing what was wrong I was diagnosed with Endometriosis and Adenomyosis. I had NO idea what this was at first but once I understood – everything made sense.

In my case my camera inside my tummy showed that I had had Endometriosis for years (12 to be exact). I won’t go into detail because we all have google. I’ll tell you in simple terms what this meant for me…

My womb was attached to my pelvis which explained the pelvic infections.

My ovaries, tubes and womb were stuck together which explained the excruciating period pains.

My womb was stuck to my bowel and bladder which explained the years of constant water infections/IBS and bloating.

I also had endometriosis on my cervix. It’s not proven but I’m convinced this lead to my HPV and cervical cells so young.

The Adenomyosis meant that my womb lining was too big which explained the monstrous bleeding every month.

Finally – IT MADE SENSE.

My amazing gynaecologist did the surgery there and then. He found it and he treated it the best he could. When I say I was stuck together these are called adhesions, where the scar tissue joins. This most likely happened when I was pregnant and my womb grew. It stuck to everything and pulled everything back in with it. He separated the adhesions and removed as much endometriosis as he possibly could and I was so unbelievably grateful.

So that took it to 12 years. 12 years of suffering it took me to get a diagnosis.

And lord knows if I hadn’t have had that smear test done by coincidence I may not be here to tell the tale. I’ve been extremely lucky.

By now I also had an incredible man and a gorgeous crazy step son. A lot of women who suffer with Endometriosis are not able to have children, it greatly de-creases their chances so for me to have had one beautiful baby girl was amazing.

The first question I asked when I came round from the anaesthetic was – can I have a baby? We wanted a baby together, to have that amazing experience of bringing a child into the world in a loving relationship, doing it all with someone. Neither of us had had that. I loved my man more than anything in the world, I was desperate to give him that. I wanted to link our gorgeous crazy four some together. We were in no rush – but this changed everything!

The longer we left it, the more unlikely conceiving would be.

I obviously let myself recover from the surgery and myself and Rob decided that I would have a coil put in. This was suggested by the doctor as the best way to stall and slow down Endometriosis. I took the advice and we decided that I would have it taken out when our kiddies were a bit older and we were ready to complete our family.

Unfortunately no more than a month later it started again. The pain (even though I had no periods?!) was excruciating. I started hurting going to the toilet again and I just knew, even though this awful coil was in that it was coming back.

Something was not right. I had my routine smear test (I was having them every 6 months due to the cells) and they had been negative since the last time thank goodness.

The one just after my 25th birthday – positive. CIN 2 cells again – back I went.

More lasering had and now I was worried – seriously worried. Why did I have them again? If I’ve had my cervix burnt again will it weaken? Can I have children? Is the endo coming back too quickly? Will I need more surgery?

After much deliberation and to be honest through total fear of the unknown we were left with a choice. Wait – and I might not be able to have any more children because something was obviously not right or we take the coil out and crack on, try and have a baby. By this point I was desperate for a baby. Rob’s baby. For our family to be complete.

The thought scared me a lot, I didn’t think I would be able to conceive that nothing would happen because my tubes and ovaries had endometriosis on them. But my surgeon was great. He assured me that after the surgery and the good clear out he did that now was the best time to try, and so we did. Out came the coil and by some miracle one cycle with not even a full blown period (Thank god) and we were pregnant!

I cried…a lot. We couldn’t believe it! We were having a baby but I have to admit I was worried sick. All the way through I was anxious encase something were to go wrong. I did have a lot of issues. I contracted early, from 32 weeks which was exhausting with two older kiddies to look after. My labour had to be induced but in the grand scheme of things – we had a son!

Ronnie baby 1

A beautiful son! So I didn’t care.

I knew everything was going to be stuck again. I knew I’d be badly for however long it took me to get referred again or get a new appointment but….I’d had a baby, and we were so lucky. A beautiful baby boy that completed our family and I’m thankful every day for him.

You can imagine what happened next – pain. Exactly back to how I was before.

I went back to the gynaecologist who said he would have to do more surgery, so I asked him straight, how can I stop having surgeries?! I couldn’t put one foot in front of the other without my womb dragging because I was stuck together. I was worried sick about getting cervical cells and not catching them in time. I struggled to push my kids on the swings. I couldn’t run or go to a dance class.

My quality of life, but more importantly my children’s quality of life, was suffering.

I told him my family was done and this was ruining my life. He told me that a pretty sure way of stopping the Endometriosis being made worse in my case was to get rid of my periods because of the Adenomyosis (which is why my periods were so heavy) the two combined was just going to take over- there is only one way to get rid of periods, get rid of my womb.

My mum had hysterectomy a couple of years previous for similar reasons and I had seen her struggle for years. Similar scenario to me so I sat there at 27 and asked him (Pretty much begged him) for a hysterectomy. I had my family which I was so lucky to have, I can get rid of the periods, stop the pain and start a fresh. I can stop worrying about cervical cancer because he would take my cervix too – hallelujah! He explained my Fallopian tubes would have to come out, no big deal for me. My ovaries needed to stay otherwise I would have gone through the menopause at less than 30 years old, the long term effects of that may not have been great. But everything else was going to be out.

I remember this lovely man sitting there and saying to me “my darling I have seen you suffer if you are sure that’s what you want, I’ll do it”.

So I said yes! Do it! As soon as possible and I cried, I hugged him, I cried for a good 2 days after on and off in relief! Thank god this was going to end!

I had to go on Zoladex injections for a while to see if HRT worked with my system (just encase I needed my ovaries taken). Zoladex was a whole different experience but I persevered.

I went back for my check up on the 15th Of December 2017 and god bless him less than a month later I’d had the phone call and here I am.

I’m 28 years old and this morning I had a full radical hysterectomy. No womb, no cervix and no fallopian tubes, all adhesions un-stuck and Endometriosis removed and I’m done.

Hospital photo

My new life begins today – I have been given the chance to start a fresh and I am going to take it.

…I‘m going to find my glow.

 

Thank you for taking the time to read my story – it is long – but I promised myself I would be honest and if I was going to share it would be in its entirety.

If anyone has been effected by any of the above please contact me using my contact page and I will be happy to be someone to talk to. I’ll happily share any information I can in the hope that this will help others. Don’t struggle alone.