Day 24, My Letter To Malala

Endo 365 

I wanted to share my letter addressed to Malala Yousafsi with you because A) I want you to join me in London on the 13th of March for the 'Million Woman March' to raise awareness for Endometriosis- it is the first worldwide campaign, in over 44 countries (Including places such as Iran!). It is not just supported by women, but also men and children. Not suprisingly my grandad and boyfriend have been blackmailed into doing it! B) This is a slight insight into what it is like to be a teenager with endo and C) I view this blog as more like a diary, rather than something that people actually read... 

'Dear Malala, 

I am unsure whether you will ever get the chance to read this, but I hope with every inch of faith that you do. I have recently undergone an operation that I have been waiting for for four years. During my recovery I read your autobiography- one of the things I asked for at Christmas. I am compelled to write to you because I feel such an afinity with you and your message and you are my inspiration. If I may now explain to you my story and how I have arrived to be writing this message. 

My name is Alice Smith, I live in Leicestershire and am eighteen years old. Although I am lucky enough to be born in England; into a society that facilitates every opportunity for young people, I have always had to fight for my education. Thankfully, like your parents, my mother and father have always valued education and started me off in life with the best chance with a fantastic diet and lots of educational games and exercises which I always loved doing as a kid. Aged 7 I was diagnosed with dyslexia which I have since grown up with. My dyslexia has many gifts, however I have always had to work slightly harder than my siblings to be able to reach my potential. I, in my quest to turn every adversity into a positive, am thankful for this challenge as it means I fully appreciate the importance and gift that education is. I am grateful for the skills I have and fight hard to improve those that I lack. I know education will be at the centre to my children's upbringing and that goes beyond academia, life is a learning process and I want them to be equipped to learn with an open mind as I have. 

Beyond the dyslexia, I became ill around the age of twelve. We did not realise at the time however this was the start of my symptoms of endometriosis- a gynaecological condition where the endometrial tissue grows outside of my womb and inside my body, meaning I internally bleed. I had major pain daily and when I was fourteen I was rushed into hospital fortnightly for pain relief. I would have a lot of morphine and it would take me two weeks to recover, at which point I would be back in again and the cycle would continue. This meant my attendance at school plunged dramatically and the fight for my education began again. This has continued throughout the rest of my schooling career, and my qualifications quickly became my focus. Even during my final year of A-levels I decided to sacrifice 'normal teenage' things to concentrate on achieving the results I strived towards. Unfortunately I didn't get quite what I wanted, however that is not stopping me as I have unconditional places at all my university but still continue to re-sit for my own happiness of mind. 

Although I cannot identify with the magnitude of your struggle and fight, I like to think I contextually understand the importance of education to ones life having my own experience of the desperate need to fulfil my minds potential. I have always spoken openly of the importance and privilege of education and how ones mind is our most valuable tool. 

I am currently undergoing a 'gap year' between my A-levels and studying 'International Development and Politics' at university to finally have the operation which I have been putting of in order to complete my education, allowing me to live a normal student life, a luxury I have dreamed of. The operation has been a success and I cannot tell you what a blessing it is to have behind me with university finally becoming a reality. With my spare time, I am campaigning to raise awareness for my condition, Endometriosis. There is currently no cure and oppressive taboos surrounding it. As the official 'Young Advocate' for the 'Endometriosis UK' I aim to educate and empower and I wanted to share with you your inspiration towards my campaign. You affirmed within me just how important education is and that it is the first way to disarmer ignorance and instigate change. 

You have always been the girl campaigning for education in my eyes, never the girl shot by the Taliban. I followed what I now know to be your blog for the BBC as I am fascinated by the eastern world, last year I toured the North of India. If you ever get a chance and you would like to see what I do, please feel free to read my blog. It has even reached to places such as Nigeria, Iran, India and South Africa: www.endo365.blogspot.co.uk 

I am also a county captain for the British leg of the 'Million Woman March' on the 13th of march in London. I am sure your Callander is full of far more busy things, but just incase and for being cheekys sake, I thought I might as well mention it. http://www.endometriosis-uk.org/news/register-million-woman-march-endo-37163#.Uw0dsn8gGSM 

Also, I wanted to let you know reading your autobiography, the way you speak of god and love and peace, reminded me of how a younger Alice used to feel and inspired me back into faith. 

May God bless you Malala, 

Your friend, 

Alice.' 

I am obivously not expecting her to come but if you never ask then you never get. I hope that anyone who is still persisitning and reading my internal-monologue-of-a-blog will concider supporting us on the 13th of March,

If you can not come, I will be eternally greatful if you could just tell one other person about it. I am off to Amsterdam this weekend and knowing me will be singing about it on saturday night to everyone foolish enough to listen.

That is all for now, 

Be Good, 

Al XXX

Day 22, The "P" Word

Endo 365

The "P" Word 

'The best way out is through' 


Warning: Not to be read by anyone prim and proper or particularly British. 

Periods.

You have a 50% chance of developing them. And that 50% chance is something you can do nothing about because it is decided before you are even born.

Because half of the women in my family go wappy after having children (a joy I both look forward to and a time I think fondly of in my own childhood- 'such fun') the mystical workings of women has always been discussed openly during my upbringing which is perhaps why I am so unafraid of the taboos surrounding them.

Here is a little example as to why I am writing this blog post, courtesy of Wikipedia (Yes, this is a real thing):

"Menstrual taboo
From Wikipedia, the free encyclopedia

A menstrual taboo is any social taboo concerned with menstruation. In some societies it involves menstruation being perceived as unclean or embarrassing, extending even to the mention of menstruation both in public (in the media and advertising) and in private (amongst friends, in the household, and with men). Many traditional religions consider menstruation ritually unclean." 

I don't know about you, but reading that made me feel great about a function decided by my gender, which I can do nothing about...

A fact universally acknowledged is that periods are not terribly sexy, fun or endearing. But I can remember being twelve years old and wanting to start. I felt immature because I thought that everyone else had, and I thought it would be my ticket to adolescence. Mum and I often laugh about the conversations we had  where I was desperate to start (to the extent of praying for them...) If only we knew then.

When I 'finally' did start at thirteen, passing through the threshold wasn't the liberating, enlightening and becoming moment I anticipated. Instead, it was bewildering, painful and embarrassing.  It was my mothers birthday and I remember an alien feeling whilst coming home in the taxi from school (privileges of living in the middle of nowhere and a ridiculously long farm drive). I felt strangely tired and grumpy, like a grey cloud had taken me hostage and was weighing me down. When I discovered it was due to the moment I had been hoping for I wasn't relieved, but disappointed  at the reality of what it felt like. And annoyed with my body for not timing it better- I mean we were going to go out for a lovely meal. Sod's law.

Mother Nature 1- Alice 0.  But do not get me started on Mother Nature, because she is a callous, back stabbing cow. Where is her sorority? Loyalty? Does she know nothing of womanhood and sticking together?

I remember mum doing a typical mother laugh when I has told her as it to say 'welcome to the club darling' whilst giving me a kiss and then simply said 'Next life, I'm coming back as a man too.' 


Rationally, I knew that if you are a woman then this is nothing special because it comes to us all. So why had I it made into such a big deal? It is just a natural bodily process, like needing three meals a day and hair growth. It is part of the bodies natural workings so why do we brits get funny about it? We're more than happy to tell people 'I'm going for a wee' which is arguably too much information- yet something that is necessary for life itself, is something too embarrassing to speak of.
NEWSFLASH: Without periods, you, reading this, would not be here. Without periods, I would not be here writing. And without periods, the people who think periods are disgusting and shameful would be unable to think so, because ironically they would not be here either.
And here is another Newsflash: It is BLOOD people. We all have it in our bodies. About eight pints of the stuff. And without it we would not survive. So hows about we use our rational, and recognise that it is just another, essential bodily function like the consumption and burning of energy.

Its not like women bleed  nuclear weapons (although maybe that would be no bad thing, at least then the UN would hold conferences on our behalf and there may be a state of urgency in regards to the weapon of mass destruction- Endometriosis).

Now I am by no means saying we discuss periods at the dinner table with out in-laws (even I am embarrassed at that prospect). However, without speaking about periods and liberating the word, women will still feel embarrassed to talk about it and Endometriosis will remain unknown and never spoken about. I have just today finished Malala Yousafzai's autobiography (a heart wrenchingly inspirational read) 'I am Malala' where she talks about education being the remedy for ignorance and ultimately leading to peace. Her story and the trials she has had to overcome are mind blowing and are an example of the problems I compare my suffering to in order to contextualise how lucky my life is and makes me grateful to only be battling endometriosis. I am not undermining anyones suffering, it is simply my way to empower myself and enables me to live happily.  

She has reinforced in me how the first step is education. First we must educate people on periods so that we can then talk about endometriosis. People must be told what endometriosis is and raise awareness for the unheard of 'benign cancer'. By educating people about it is, we will break taboos. Every day, I aim to break a taboo. I am not feeling so good today, but I am continuing to, in the written form, break a taboo just by talking about it! And I haven't even gotten out of bed yet! It might be the daredevil in me but I LOVE breaking taboos. Who wants to conform and live within the self imposed, unwritten rules of what is okay to do and talk about? You are not breaking the law by talking about periods. No one has the right to place upon me what is good conversation and what is not. As long as I am not hurting anybody, I will not be pressured into assumed cultural values placed upon us since the Victorian Age!                                                                                                                    

I know my wanting to educate about this condition is nothing in comparison to what Malala is doing, however it is the same principle:
Knowledge is the key. Lets have the courage to talk about periods, if we then educate people about Endometriosis there will be a demand for a cure. No female will feel too embarrassed to talk about her symptoms, allowing access to knowledge about what is normal and what is not, and leading to quicker diagnosis time and preventing the life-devastating impact endometriosis can have on women and their partners, parents, children, siblings and so many more.          

If you are still with me and engaged (give yourself a pat on the back, I just can't help myself sometimes) then I urge you to watch this world class TED talk but a friend of mine about 'Little Red Riding Hood, and the Wolf'. Carol is the treasurer for 'Endometriosis UK'  and her TED talk leaves me speechless every time. She is educative about Endometriosis, funny, enlightening, and extremely clever because she tells it through the story tale we all know from our childhood. Thankfully, I am lucky enough to be joining Carol the next time she delivers this talk and say a few words at the end.

Here is the link: http://endometriosis-uk.org/news/endometriosis-uk-trustee-talks-tedxbrighton-37138

 If you feel half as strongly as I do about it, please pass it on.

 'Lets make Knowledge Our Legacy'. 

Have a little look at Endo UK's brill new campaign:

'Its OK to talk. Period. 'http://www.endometriosis-uk.org/news/its-ok-talk-period-37184

One last positive spin: In a weird way I also feel thankful for periods. It means I am not malnourished, it means I have lived to an age where my body can mature into this state, it means that I have the chance of babies when I am all grown up and it means that  I have been born with the organs that allow me to do so. Not everybody gets the chance to start their periods. We are lucky- In a strange Alice-kinda-way.

All my love,

Al XXX

P.s I DARE YOU to say the 'P' word before you go to sleep tonight, pass it on...

Day 16, Pain Management

Endo 365

Unfortunately I have taken a slight turn for the worse and have been in a fair amount of constant pain for the last six days having started my first cycle in four years! I'm in a strange but exciting transitional period right now where it feels like i'm going through puberty again for the first time (Sorry for the graphic details- taboos are my target. Plus if I can talk about my extremely 'embarrassing' periods than ANYONE can) I thought it would be appropriate to write a blog on pain management and the tricks of the trade that work for me- if nothing else to remind myself! But do not worry because it is me and I am always happy ultimately.

For those of you who do not know, I have a common condition called Endometriosis which causes me great deal of  pain and discomfort every day. Before it was under control, I would be rushed into hospital fought-nightly aged fourteen in a labour-like state, attached to a morphine drip for pain management. I am aware of being melodramatic however anyone that really knows me will testify that when it comes to my endometrial pain I an quite tough. I remember the worst pain attack Iever received   and the only time I ever gave my pain score as a screaming ten, and my body was in such a state I genuinely thought I was dying. Thinking about the pain I was in makes me go cold and it is impossible to justify or articulate.
               Although thankfully I very rarely suffer these out bursts now, I still spend the first half hour of every day in bed mentally sitting out my pain before I get out of bed and usually scoff down painkillers with my first cup of green tea of the day. In fact funnily enough I am in quiet pain now just writing this blog (I call 'quiet pain' the constant pain which I am able to act normally with, its like an in-joke with myself, I know I am in a fair amount of discomfort but no one else does- except special people who can tell the signs like me singing or making the occasional cat sound..)

Six months after being diagnosed with Endometriosis I was referred to a pain consultant who was brilliant and we discussed medication and lifestyle options to make everything more bearable for me.  The thing is, not everyone is the same, its about trial and error; finding the balance and creating a routine that works for you.
All the stuff to follow is what, through time, gives me the best quality of life. This may be useful for fellow sufferers, for people who suffer with pain in general or just to give you a little perspective of what it is like.

The Medical Route
I avoid painkillers until they are reallly necessary, and ironically when the pain gets bad enough for me to resort to taking them, they are no longer effective upon the pain anyway. Funnily enough I have just been to see me GP about 'the delicious cocktail of painkillers' I have been supping over the last two weeks and we are in agreement and excited about my future without having to take painkillers before I get out of bed each morning and maybe even having days where I take none!
When I was just 14 I used to take 28 pills a day. That is right, 28. I started doing a little campaigning then to try and raise awareness for endo and posted a picture (below) of all the pills I took in one month. It made an impact and even now when I look back at the picture its hard to believe a fourteen year old would consume all that in one month, and yet it was me. I now take far less, I will take these but not every day anymore:  paracetamol, naproxen (The big brother to ibuprofen), buscopan, nortriptyline, fybogel and tramadol and I used to be on monthly injections of GNrH to induce a false menopausal state and stop ovulation and the growth of my endometriosis. Codine and Cocodomol are enimeys to my stomach and I am almost always violently sick after taking them. I trialed the first ever drug made for Endometriosis called 'Visanne' which we had to buy in from Canada. Although it has brilliant results genrally, it did not work for me. Worthwhile researching if you suffer Endometriosis and are looking for alternatives.

Positive Thinking
As I mentioned in my last blog 'Day 7' (assuming you have not had the misfortune to read it), I partook in a pilot NHS scheme about three years ago for teenagers living with chronic pain. Pain is like a negative circle.
        In layman's terms (the only way I know): When you're in pain, you become distressed. When you are distressed, your pain becomes magnified by your body. If you think positively and think of good memories or the things that make you happy, your synapsis excrete serotonin which means your body absorbs the happy hormones and less of the pain messages end up being delivered to your brain.
Along with deep, steady breathing, this method encourages your body to release its natural pain killers (which at their best are not too dissimilar to a modest dose of morphine) and genuinely  make a difference.
Likewise, getting upset, anxious, nervous or adrenaline,-good or bad, always becomes a catalyst of pain. Naturally (like my mother) I am some what highly strung. However something I love about my endometriosis is that it has ensured I retain enough self-control to overcome being a stressy cow and forcibly makes me into a laid back person because I have learnt to let things go or I will cause myself pain.
Mind over matter my dears, mind over matter. 

Baths, Hot Water Bottles and Applying Presure
As with any pain or ache, heat is a great friend. Hot water bottles are great because the provide heat for specific areas and also apply a bit of presure. I find that having some weight on my stomach really helps; i've ended up with all sorts of people sat on my stomach in the past. It is also a brilliant way of meeting new people... For a period of time I have a bath every night as I find it really does do a lot for me. I also love using Himalayan pink salts and have an amazing company to recommend if anyone would like a referral. When at home or sat down in the office, I will happily have a hot water bottle on my front and back as it is minimal input for a good, comforting result.

Sleep
It is so conflicting because I am quite often kept awake with the pain, but I find my pain levels considerably more bearable if I have a good amount of sleep. For example, I had a mini pain attack on friday and one the saturday night my body was so exhausted I slept for 13 hours straight,  after a long sleep in the afternoon. It is hard when pain causes you fatigue and insomnia all in once as Endometriosis often does, but grab the sleep where you can, and ensure you take a tens machine, hot water bottle and good book to bed.

Exercise
This is something I have always done and every specialist I speak to urges that I continue. Due to the internal bleeding, it is important I keep active so that my organs don't stick together. I can always tell if I have not been exercising for a while as I can feel the pain afterwards. The endorphins released via exercising work just like the positive thinking does re your synapsis. The greatest reason that I find exercise helps with, is the mind. I am always mentally so much stronger when I regularly exersise  and that is half of the battle won. Exercise is a brilliant stress and frustration outlet and I tend to find problems resolved in my head and heart after a tough run. It doesn't have to be a marithon either. It could be a gentle swim or even walking the dog.

Alternative Hippie Medicines
Believe it or not- I don't actually use any. I have tried a few and they did not work for me. I have friends that they do work for though. Like I say, different things work for different people.

Siblings
Preferably younger as they are easier to emotionally black mail into making cups of tea and fresh hot water bottles.

Tense Machine- My Secret Weapon
I can not quite remember how I came into buying a tense machine, I think it may have been my Granny- who is a retired sister and living medical dictionary. This machine is my love, my joy and my baby. It has become like a comfort blanket to me. A tense machine is mainly used by women during labour as a form of pain relief that isn't medication. It essentially pads that are attached to a battery powered box by wires- people used to think it was a life support machine or that I had diabetes (?) , I told myself it was a fashion accessory. I can see why it would be fairly embarrassing to wear in public as it was difficult to wear under a lot of clothes and I had wires hanging everywhere, people would stare and ask questions- but surprise surprise. As long as it relieved my pain and I could continue with my education, I would have practically gone naked if it would have helped.
A tense machine works by sending lots of little electric shocking into an area of your body that hurts (I will always have two pads on either side of my lower abdominal and back).
The electric shocks simply intercept the pain message going to your brain. It is beautiful and the electric shocks also encourage your body's natural painkillers to release which is probably why I find it so much more effective than all pain killers bar morphine.
I have a few friends with painful periods, after trying mine, most have bought them (I should be on commission I know) because they really do make an impact. You can try a cheap one first from boots, they usually start at around £15 and if they work, move onto a more reliable one. The one I have now and use all day long currently and have done over about three years was £50 and worth every penny a hundred times over. You cannot put a price on peace.

Diet- My Second Secret Weapon
I was on an endo diet for a year which helped, however I have since been on the FOBMAPs diet for 18 months which has been life changing. The endo diet cuts out all foods that your body uses to produce hormones which the endometrial tissues feed off. The rational behind it being that if you stop the production of oestrogen and the like, the endometriosis cannot grow. There is lots online about it and it is absolutely worth a go. It is essentially a vegan diet without soya. My new diet is mainly to tackle my sexy IBS and I cut out all gluten, lactose, onions, garlic and about 80 other small things, but mainly those four. After the year on the endo diet, I find this one a breeze to stick to and it had dramatically helped my pain levels (we discovered a fair amount of my daily pain was from my IBS caused by the endometriosis on my internal ligaments). I love my diet, I eat lots of salads and fresh stuff because I cannot pick food up on the go and nothing toxic comes near me (except the odd G&T- but I know people who consider it to be a medicine in its own right, and I remain as ever open minded). The only issue with this is eating out and explaining to people what you can and cant eat without sounding crazy or like a total diva- neither of which I mind or are particularly untrue.
I would whole heartedly recommend this diet to anyone- you have nothing to lose by trying this or a tense machine. My mother was a food technologist and between us (her creating, me tasting, I can take no credit) we have fine tuned some damn good dishes, so if you would like some recipes, email me: alice.smith@marriottfarm.co.uk


My lasting thought for you all:

Pain is demonstrative. I know I am impossible to handle when I have had a rough day and am fed up of telling people "I'm fine." Pain is isolating, debilitating, fustraiting, heart breaking, depressing, faith destroying and can rot a person to its core. Please bare with anyone who is in chronic pain, it is a long and unforgiving road, often not at the person suffering's fault.

To my friends and family, I am sorry for all the times I have been insufferable and angry. Thank you for sitting with me while I cry and for rubbing my back, thank you for being patient with me when I didn't deserve you to be. Thank you for listening to me cry and giving me support and hope. I hope this is in my past and you only have the best Alice to enjoy in our future.

Keep an open mind and give everything a fair go because you never know what will work for you. And whatever it is, when it does, it will be beautiful.

All my love,

Al XXX

Day 7

Endo 365

I could not sleep last night due to a little pain, this is not uncommon upmongst sufferers, which is ironic because normally the pain results in chronic fatigue too... When this happens I generally start reading, then my brain begins to wonder and I become a geek. I either begin reading up on conspiracy theories (brilliant for opening your mind and imagination, but rather a slippery slope), or I start philosophising. Last night I did both. I learnt a lot more about the Kennedy's and I collected more quotations for my 'Little Book of Motivation.' Upon this enlightenment, I wrote the following statement intending to start my blog with it today: 

'I am sorry, I have to start by getting a disgusting notion off my chest: I am so lucky with my life, it has the perfect balance.

 I live in a time and place that allows for opportunity, education, choice and freedom of speech. I have never feared for my life or known of true suffering. Living in England, there will always be food on my table and a roof over my head. However because of the burdens I carry endo and otherwise,  I am living in context to the whole world, a privilege life, but am still able to see the bigger picture (if I may be so bold). It would be easy to exist in a middle class microclimate where my biggest problems are boys and the lack of clothes in my wardrobe that I currently favour. Instead I live in the amazon. I don't just see the colours in HD- I practically smell them. These two things combined; my luck at being born in England and my experience of hardship, have equated to a comfy existence with perspective. There is no greater seat to be sat in. 

Because of this I live a bigger, happier fuller existence. Perspective is my key to rationality, advice and happiness. Perspective is so often overlooked but it is what gives us hope and strength. 

Perspective is the fruit of adversity.' 

So it has been exactly a week since my operation- happy one week birthday to my shiny new tummy. Paaaarrty. 

The pain is very bearable. I partook on a pilot NHS scheme about three years ago for teenagers living with chronic pain. It was ran by two fantastic women, a pain specialist nurse and a child psychiatrist (Can I say 'Paaaaarrty again?). In all seriousness, it was well worthwhile and I hope they are still running the sessions because it taught me some strategies to deal with my pain which I still use today, and thinking about it probably contribute to my disgustingly positive outlook on life too (which isn't instinctive but learned). 

Pain is like a negative circle. When you're in pain, you become distressed. When you are distressed, your pain becomes magnified by your body. If you think positively and (I cant even type this with out cringing) think happy thoughts, your synapsis excrete serotonin which means your body absorbs the happy hormones and less of the pain messages are delivered to your brain. Because I am so... Me, I think my body is blocking out a lot of the pain. And because I don't have as much pain as I thought I would, I become even happier. I have found this principle is easy to follow and incorporate into my life for more than just pain. 

I have just thesaurused  (new word made up by Alice, you heard it here first) 'positivity' because I am fed up of using it, but that really is the only suitable word. Perhaps its time for another new Alice word, if anyone has any please feel free to email me. ANYWAY, if you remain positive with an open mind set it becomes infectious, I have met so many people that have inspired me because they accept life as it is and enjoy everything so much more. It is all cumulative. I really do feel the same about negativity; law of attraction. 

A week on I feel strong, and look forward to reviewing the results in six months. Where there is life there is hope:

"No matter how good or bad you have it, wake up each day thankful for your life. Someone somewhere else is desperately fighting for theirs." 

I am not saying I go through life like a robot, never upset, the last six months of 2013 were very tough for me due to family issues and losing the friendship of two people that I loved unconditionally and still do. Rationally, I know this is pathetic in comparison to the children of Syria, I know that, but it didn't stop the grieving process. Rejection is never easy, be it your firends or your body. Allow yourself to hurt and then turn it into a positive. People often remark 'It okay for you, you are stong'. As I have proven, I am no stronger than anyone else, I simply have a little more practice and years of dealing with my endo. Have faith in yourself because if you are feeling angry, tell yourself 'the four most comforting words: This too, will pass." 

Positive thinking is a discipline and a process, and if it isn't second nature to you, give yourself time, life is a learning curb. Or if you are like me it is more like a series of mountains, lots of ups and downs because you set yourself a challenge. Give yourself time to learn to think positively, 'fake it until you make it.' 

The point I am trying to make is that you can empower yourself to think positively and for the best, it is a choice and often goes against human instinct. It is not always easy, and sometimes it takes a long time to truly believe it. Even though I practiced positive thinking in my everyday life and it gets easier and easier, the last six months were beyond a challenge that some days I didn't win. You cant always explain how you feel so don't beat yourself up for feeling low. Endometriosis is tough. There were days after I had been diagnosed and I was coming to terms with what endometriosis meant to my life that I used to wish I had cancer, because at least then there would be hope of a cure. I am ashamed, but I know I wasn't the first and will not be the last. Be honest with yourself about how you feel, then gently persuade yourself to see the lighter side. Our emotional intelligence is like all of life: a journey. Because I have been in that place, that bitter low, it has given me the gift of perspective that allows me to be happy and to be positive now. Indeed, you must have the bad times to feel the good, and continue to peruse the good. Give yourself space, time and forgiveness to see the positives in your situation- life is so much better when you do. 

I always wanted to do something good with my endometriosis. However I knew I had to wait until I was ready, happy and accepting with my situation ensuring I passed on the best message and believed it. It takes time. Don't rush it because you'll rob yourself of its becoming. 

Breaking Bad is good- however the none conformist in me resents watching it because everyone raves on about it. Tomorrow I have a local rag interview talking about the 'Million Woman March', urging all people to sign up and march with us in London to make a stand about endometriosis: http://endometriosis-uk.org/news/register-million-woman-march-endo-37163#.UvkRYX8gGSM 

A week into my new life and I am sat in front of a fire having a pyjama day with a bottomless teapot of  'Lady Grey', reflecting and restoring myself ready for my exciting new journey and the rest of my life. 

Thank you once again to everyone who has visited or brought me flowers or even the emails! I have been overwelming and you have no idea of the impact it has. 

If you ever need some advice, alice.smith@marriottfarm.co.uk 

All my love, 

Al XX

P.s Today I have had my first (and favourite) glass of wine and candle lit bath. Life is getting back to normal 😍🙈

Day 4

Endo 365

So far my recovery is going well: I have received six bunches of flowers, two books, 3 boxes of chocolate, mints, hippie tea bags and a manicure and a pedicure. I have had at least tree visitors a day and have started 'Breaking Bad'. This has been a particularly productive week for me. Oh and an operation.

 Between the emails I have received from girls or partners or women suffering asking for advice,  or from gaining contact with lost friends, or from the notion of this operation finally being behind me, or maybe all three, I feel so happy and light. And I haven't even taken any morphine yet today! Please don't feel like I wont respond or have more important things to do than reply to an email from you because the biggest dilemma of my day currently is whether to have eggs scrambled or poached for breakfast. I have time, give me purpose and I will meet it with pleasure.

I am in a spot of pain, but why wouldn't I be? I have just had a fair amount of matter cut from inside my stomach! And to a degree, I am quite uncomfortable from the carbon dioxide they pump into you during endo surgery, to separate your organs so the camera can see everywhere. Every time I stand up, the gas that hasn't been absorbed rises to my shoulders and its like constant stitch! I believe this to be a good enough reason to remain lying horizontal on the sofa all day... And Of course, there are a few niggeling worries about whether this operation will be a success, how I will react to the Marina Coil, but only time will tell. I firmly tell myself 'Its not time to worry yet,' (Thank you Atticus Finch) and 'We will cross that bridge when we come to it' (Thank you Mummy).

 I resist the urge to google 'outcomes for Marina Coil' because like with endometriosis, I will probably find horror stories. There is no point witnessing bad reaction stories, reading that negative stuff wont impact how my body works with the Marina, it will only worry me and possibly subconsciously make me look for symptoms that aren't really there. Google is brilliant if you want to find out what Madonna's full name is (Madonna Louise Veronica Ciccone) but is a near force of evil when you are venerable and impressionably researching subjective accounts of medical horror stories. Don't do it. Just don't.

So on the whole, I am very happy and excited for my future. For those of you who know me, or have read my '-3 Days' blog, it will come to no surprise that I have been slightly overdoing it. I had pulled open one of my wounds because I lifted more than I should have. Don't worry, it was a good job its happened because its not too serious and it was a lesson well learnt. It is just rather frustrating to not be able to make yourself a cup of tea!

But all in all I am good. Very good. And very happy.

So now that i've filled you all in with my progress, I thought this blog may have a educative theme as I realise I have never properly introduced you to my 'old friend': Endometriosis.

Meet Endometriosis. 'It' is tissue matter that sheds blood monthly. 'It' is a bit bitter because for unknown reasons, 'it' doesn't take residence in the womb with all its other tissue that bleeds cyclically, producing the blood which becomes the woman's period.

Because Endometriosis squats where 'it' shouldn't, like the bowel, bladder, ligaments, lungs  and even the brain, when 'it' bleeds in cycle with the normal tissue, it results in internal bleeding, with nowhere for the blood to go.

This causes great problems, organs cannot work properly with this foreign matter. Endometriosis should only be found in the uterus. As a result, women are punished. Blood pockets are left which mess with organs and their messages to the brain, the nervous system, sticks all the organs together, Irritates IBS, chronic pain, leaves scar tissue, wrecks nervous systems and immune systems because your body is always inflamed with the blood, fighting itself trying to constantly absorb the internal bleeding. The worst bit is that it can attack the very point of the female reproductive system: it is the biggest cause of infertility.

Other symptoms include: Painful sex, painful ovulation, anaemia, miscarriages, heavy periods, painful periods, bloating, fatigue and many more depending on the individual.

World famous specialists and professors have no clue what the cause of endometriosis is because there is no correlation between  symptoms, treatments or cures. Some people develop this snide, evil condition at the age of 50, and some people like me, are born with it. Some people have sever symptoms, but when they are operated on are only seen to have light endometriosis, where as a woman can have no symptoms, come to the time when she wants to have children, struggle to conceive, then under investigative surgery, found to be riddled with with this 'benign cancer'. Do you know they have even found endometriosis in still born baby girls and men!

Because no one knows what causes this condition, there is no cure. I personally think these two factors are what makes it so unpopular for people to specialise and research in; there is little hope of a satisfactory result and cure. It is seen medically as an almost lost cause and constant losing battle. But why?

WHY? 

It effects 1 IN 10 women. 

It is THE BIGGEST cause of infertility in the Western world. 

It may not be a killer but it has ruined so many women's lives, and that of their partners, parents and children.

It creates unquantifiable damage and has intolerable impact upon those landed with this condition.

I know without it my life would be totally different. I would travel the world four times over, have a dynamic and varied career all over the world, settle down late having lived, and then have my children. Because of this condition, I have had to take a gap year that near broke my heart. Because of this condition I wont be able to travel to where I want to this summer because the hospitals wont be sufficient if I need them. Because of this condition I wont have as successful career as I am capable of because I will have to have lots of time of work, and my children young. Because of this condition I wasn't able to have normal teenage years, I was burdened and restricted. I cant do what I want without considering the impact my endo will have on it.

And because of all of this, it gives me, and every one who suffers from it, loves someone who suffers from it, or someone with a decent agenda, purpose to fight. Purpose to educate everyone who will listen about 'conniving wolf'. Purpose to empower those effected; never letting society's silence make them or you feel embarrassed. No woman has done anything wrong to contract this, it is not the result of smoking or unprotected sex with strangers, it is DNA.


It may be unfair, and it may be frustrating, and it may be bloody painful, but we have a responsibility to make it better for future generations. I don't want any granddaughter to feel embarrassed or ill informed. I am never going to be endometriosis' victim because like a bully, I am standing up to it. And I am standing up to the 'British Stiff Upper Lip' too because we no longer life in the Victorian Age, this is the 21st century and I bleed. Which woman doesn't?

I have broken my vow of not sounding like a sketch in the 'Vagina Monologues' but hey ho- needs must.

The 'Endometriosis UK' charity have so much information and support, here is there web address: www.endometriosis-uk.org

If you've found my blog useful in any way, have a look at the events section and look into the 'Million Woman March'. It is something I am very passionate about and I'm going to be there, it would be amazing for everyone to make a stand together, and get endometriosis on the map.

Email me: alice.smith@marriottfarm.co.uk

All my love,

Al XXX

P.s I had porridge in the end  

Day 1, The Beginning

Endo 365

'The Adult Butterfly'

I have just woken up to my rather beautiful gynaecologists right hand man who went through in detail how my operation went yesterday.

Bare with me- this blog may not be particularly flamboyant as I still have a fair amount of morphine in my system. Thinking about it... Nurse...!

Little bit of a biology lesson so you are all aware of what happened to me:

WARNING, IF YOU ARE A QUEEZY PERSON DO NOT READ

First, a cannula is inserted into my hand so things can be injected directly into my blood stream. I am then anethatised or 'put under'- I had a lovely anaesthetist who said 'sweet dreams' to me just before I slipped into my sleep. Whilst in the theatre the team made small incisions into my stomach through my core muscles and pumped me full of gas so they could easily access and navigate around my organs with the camera. The camera allowed them to see everywhere in me close up and in great detail so they then become aware as to where and what was needed to be done. They then, with the view of the camera, began to use a scalpel to remove the endometrial cells and the tissue surrounding them. Once they had taken away all the endometriosis that they could see, they sucked up all the blood produced from the endometrial tissue when they bleed and then used some jazzy spray to prevent adhesions. They then ran a blue dye through my Fallopian tubes to ensure there was no damage and blockage and inserted the mirena coil as the next stage of treatment for me and instead of GNrH.

I have three new beautiful, petite scars. They removed all the endo that they could find yesterday and interestingly, when I was fourteen having the laparoscopy where I was diagnosed, the consultant only lasered away the endo where she dared (I wouldn't recommend laser to anyone). We know they left endo on my Urethra and Pouch of Douglas, although my endo had grown more in more places since, there was little on my Urethra or Pouch of Douglas, which means the GNrH must had dissolved some of my endo. I owe so much to GNrH. I know my teenage years were still different to most, but not to the naked eye. I managed to finish my education, retain a social life and learn to drive. I may have been chronic fatigued until a year ago and still wake up in pain every night, but hopefully that stage is over now for five years or so, where this operation may need to be repeated again until after I have my babies, then I will conclude this story with a full hysterectomy.

Do you know 'hysterectomy' literally translates as 'to remove the hysteria'. Amazing.

I am feeling very mentally strong and upbeat. My Fallopian tubes were completely clear when they put the dye through them, which made me cry with happiness and relief when I was told. I have to fight the tears every time I think about it.

If I were a 'normal person' I would be on my way home now. However here is a spot of useful information to those people who ever have an operation; apparently it is completely normal for your bladder to go into shock in reaction to being anaesthetised, meaning you cant pass water. For some people this may never happen, or only last for ten minutes but I am usually take 24 hours. This happened to me with my first laparoscopy and we assumed it was because they had been routing around in my tummy. However, I had the exact same reaction when I had my tonsillectomy- and I'm pretty sure they don't access your tonsils via your tummy button... Anyway, because I, like my mother, react to anaesthetic like this, I am now on my second catheter since yesterday (terribly sexy I know).

The most undignified moment of my life (of which there have been many I can assure you) was at the innocent age of 14, with a strange man (a gynaecologist at the hospital who I hadn't met, not a hobo they dragged off the street) fitted my first ever catheter, and had the battle to fit into XXL gloves. Feel free to laugh, I certainly do.

I am looking forward to seeing all the friends and family who are wanting to visit, It is something I pull great strength from. Thank you for the support again. Thank you to the staff at 'The Royal County Surrey Hospital' who have been phenomenal. It is a whole new world in compared to what I have been used to in Leicestershire.

I feel very bright in myself and I think it is because of this blog keeping me mentally astute. Never underestimate the power of your brain.

What I am looking forward to: 

Having normal hormones... I have been a menopausal woman for so long it is going to be interesting to see how my body and moods change. It will be interesting to see how my body reacts to the marina coil- I am just thinking positively right now.

I am looking forward to less pain. I also suffer from IBS (again, another sexy one) which is due to my endometriosis messing around with my bowel and my nervous system. Hopefully the symptoms for this will decrease and give me less pain all around.

I look forward to recovering, this period of time to read and sleep and see people and not rush about like a lunatic.

I am looking forward to being able to have children! :D

This is my turn to have some good Karma.

Just because I may not be 'suffering' from endometriosis in the same way as I have been, that does not mean I intend not to fight for the cause- as Martain Luther King said; "Our lives begin to end to the day we become silent about the things that matter." 

I am so happy, the climax of my gap year is now behind me. Once I am recovered I am free to go traveling and go to uni. Yesterday we indeed, 'a job well done.'  

Day 0

Endo 365

'The Chrysalis' 

Today, I am having my endometriosis excised, my fertility tested and a marina coil implanted and the next phase of treatment. 

Today is a privilege. 

When people hear my story genuinely and kindly remark  'how sorry they are' for me, I give them my spiel.

This is my spiel: 

Ultimately, it will not kill me, I am greater than this condition. Also, I am lucky that I live in a time where we are medically aware. Okay there is no cure but If I were born 200 years ago, I would be happily tucked about in a mental asylum having seemingly unprompted screaming fits every two weeks. And if I were born 400 years ago, I would be burnt at the stake for witchcraft. I could be in Syria right now where I would think operating on my endometriosis is at the lower end of their hospitals agenda. 

Thank you for your messages, it has amazed me the essays I have got from people I haven't spoken to in years! Things like this shows who really cares about you, and who are genuine, that is always a good lesson to learn. Today I have woken up positive, strong and fuelled with adrenaline. I go into hospital at 12:30. If I am any state later I aim to dictate to mum a little blog to keep you all informed. 

'The things we fear are not undefeatable by their nature, but by our approach...'

See you at the other side, where I will emerge from my surgical chrysalis.  Plus I am wearing my lucky pants, so the world really is my oyster. 

All my love, 

Al XXX

-1 Day

Endo 365

'The Last Supper'

I have just waved goodbye to my family, house and chickens and am en route to Surrey in preparation for tomorrow. On the eve of my operation I feel excited, prepared, and of course, emotional. It is such a strange notion to think the next time I see my brother and sister, I will be rid of the thing that has been central to my life for so long. I have been looking forward to this near mystical operation for so long that it is weird it is finally happening. Very weird, and I don't think it will fully sink in until I wake up tomorrow post op.

Going into tomorrow, I feel very strong and mentally solid thanks to last weeks space to think and write. I already feel bigger and beyond my operation and I think being prepared and strong will ensure the best results. My body will instinctively fight and cope better than it would do if I were in a negative mind set. It is at times like this that I am always so grateful for the things I have had to overcome throughout my life, because it has become instinctive for every essence of me to fight. I will not run, I will not burry my head in the sand, I will not give up, I may doubt myself and capabilities, but that only ensures I fight all the harder to compensate.

There are only two concerns on my mind:

1) This will be the first operation where my mummy wont be able to sleep beside me... I am not looking forward to being alone in hospital, I am an extravert and find comfort in company, especially that of my Matriarchs. Thankfully my best friend Suzy is coming down to give me her support. Thank you suzy, it is invaluable and I am looking forward to you being there to hold my hand whilst I scream, and video me when I am savouring the delicacy of laughing gas. You are the best and I am very lucky to have such a loyal friend. I have been overwhelmed by the response to my blog, and messages of love and support for my op even from people I circumstantially lost contact with years ago.

2) My fertility. To those of you who don't know, endometriosis is the biggest cause of infertility. Thankfully, the last time I was 'opened up' (such a glamorous phrase) I had no endo on my Fallopian tubes or ovaries. However, because of all those horror-like blogs I read, written by poor women who had the most dreadful experiences, the prospect of not having children quickly became my biggest fear. As a impressionable and venerable fourteen year old trying to make sense of a this alien condition she had just been diagnosed with, reading those angry blogs nearly broke me. If you ever feel like that, and god knows everyone is entitled to at times, I urge you to express yourself and then do not publish it,  you never know what reaction you will instil in others.

Being the eldest child of three, I am naturally fiercely protective, and the prospect of not having my own babies was more devastating to me than my diagnosis. I scold myself for every having thought like this now, however when presented with the prospect of being infertile at such a young age, I felt pointless as a woman. In what world was it fair or just that I was going into labour twice monthly, the worst part of having a child, then never being allowed the best bit? It was the most upsetting aspect of this condition for me, which I know is silly because there is no evidence to suggest I am infertile. Over time and many teary nights, I eventually came to terms with this notion of logic. I was aware that I could adopt, but you always want what you cant have. I wanted to have my own child, to see my husbands eyes reflected in the face I made. I want to feel my baby grow inside of me. I am ashamed to say adoption wasn't an option for me.

And then, something very special happened to me in February 2013- Februarys seem to be a big month for me. I was on a school trip, touring the north of India. We were in Dharamsala on the Tibetan border in the Himalayan Mountains. We visited the Dalai Lama's monastery, walked through the sacred mountains and finally, visited his school for orphans and Tibetan refugees who would never again be reunited with their family. When I saw these children, toddlers and babies without a mummy, without a place they could call their own home, I wept but felt like a wight had been lifted; I had an astonishing realisation that these beautiful, precious children need what I can so easily give. I felt such love for them that I realised it doesn't matter whether they cary my genes or not. This realisation brought such gushing relief, for the first time since I read those poisoned blogs, I realised I would be okay. As long as there are children in this world that need a loving home, I will be fulfilled as a mother. The rest is science, and we all know I'm an artsy type.

My advice for today: 

I wish every woman and girl who even sheds one tear over the possibility of not carrying their own child could feel the peace I feel about it. However I think it is a grieving process, and then a beautiful realisation blossoms in its place. Please don't think you will never be a mother because there are so many worthy, innocent young lives out there in need of someone like you.

The more people who know I have endometriosis, the more women tell me they once had it. It never amazes me how many women it effects, and more so, how many of them were told they would never conceive... and yet go on to have three, four children!

What I have learnt is that no expert consultant ever knows, or can conclusively guarantee anything with endo- it is still such an unknown quantity. So lovely ladies, never, ever give up hope.  Hope can work wonders and is the best anecdote sometimes.

Tomorrow I shall wake up for a light breakfast, go for a swim, write and reflect upon what the end of this era means for me. If you are having a tough time, write. It works wonders. If you are having a good time, write. It is nice to reflect and savour those times when things aren't so easy.

Shall I let you into a secret? 

I have a 'Motivational Scrapbook' where I log all the quotes I read that inspire me, challenge me, offer comfort to me, and give me strength when I need it. I also create my own when I am in a particularly philosophical mood. This book was the first I packed today and I hope some day it may bring comfort to my grandchildren. I urge all people, any people with health conditions or otherwise to do this because it is a brilliant creative output and will become invaluable to you in times that you may need to rely on your own mental resources.

I am now going for the 'last supper' of my life as a caterpillar before I embark on my surgical metamorphosis, with a beautiful, quiet, peaceful tummy.