Endo Struggle

It's what's on the inside that counts


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Still aching

Well I should be leaving the house for work now, but woke up an hour ago, with a dodgy stomach still. That’s me in bed for the day then, after making a phone call to work. I hate having to let people down. I always think they’re imagining me like this, and how can I make myself seem more ill, even though I am actually ill?! 

  


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Pain like before

I feel like my period is about to start, which is impossible. But the pelvic pain and cramps in my abdomen just feel awful tonight. Tucked up in bed with my microwave heat pad, watching  TV and hoping I feel better for work in the morning, I’ve only been there 3 weeks, don’t want to be on the sick already. Another dose of Anti Diahorrea med taken.

 

It’s more than likely something I’ve eaten; too much chocolate, the cabbage with dinner yesterday, a few slices of wholemeal bread, I can’t really tell from my food diary. My intestines are bubbling & popping, feels like they’re twisting tightly inside me. I’m so glad my Doctor appointment is finally here on Friday. 


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Endo March 2015

Yesterday (28 March), I travelled to London with my partner to take part in the 2015 march to raise awareness of Endometriosis. An hour on the train and then a four mile march past some of the most famous landmarks in the capital city, around 100 of us possibly, it caught the attention of 1000’s hopefully.
It didn’t feel hard work at the time, but follow the walk with a trip around Harrods and today I ache all over.  But, if I’ve made just one person find out more about the illness, by handing out some leaflets, then I’ve achieved something worthwhile.  I managed to talk to a few other inspirational ladies who’s joined the march, we swapped stories, talked about our journeys, from being diagnosed, to GP and hospital treatment, which varies greatly depending whereabouts in the UK you happen to be living.  We also talked about how we were feeling during the march, the aches and pains, but the underlying feIMG_4082eling that the pain was worth it, if it helped  women who may discover their symptoms could be Endo related.  But, one thing I did take away is that things don’t come cheap for small charities like Endometriosis UK.  Just to be able to have a small park where a registration area could be set up and we could have a pre march speech cost the charity £250!!!! £250 which has lined the pockets of the City of Westminster Council (like they don’t have enough money), which could have been used to print more awareness leaflets, or allow more hours of the Endo helpline to be open. On speaking to one of the Trustees of Endometriosis UK about why we couldn’t take  a group picture in Parliament Square, it appears you need to furnish the City of Westminster with £500!!! For a charity who support 1 in 10 women in the UK, with just 4 people. They may as well have come and stolen all our wallets!!!  Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs. Maybe if they allowed a free photo and it generated more money for the charity, that £8.2bn could start to come down.

To find out more about Endometriosis and the UK Charity supporting those with the illness visit their website


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Afghanistan Service of Commemoration

Today in London there is a service of commemoration for Veterans, and British soldiers who have lost their lives in Afghanistan. There are also services taking place at barracks across the country.

It’s also my wedding anniversary, and coincidently I’m married to a Veteran, a veteran of not only Afghanistan, but Iraq and the Balkans. It’s fitting that families are also invited to this service, as although they may not be on the frontline, they are doing their part and trying to keep things together back home, often alone and with little or no support. My husband wanted to attend the service, but with his new civilian job he’s unable to, also a strange balance of emotions celebrating your marriage and commemorating your service and comrades.

I know there will be people who shrug nonchalantly, with a disregard for what forces have done, or those bleating on about it ‘not being our war’, or ‘what about the civilians who died’ (they will always die in wars, and are also remembered). I somewhat agree with the ‘not our war’ bit, I didn’t agree with us joining in.  But, the fact is we did, and we should still remember those who had no choice, they couldn’t pick and choose their wars, they just followed orders and went where the government wanted them to go (more like where the war monger Tony Blair wanted them to go).  I wonder how many of these keyboard warriors and armchair protagonists bother to look further than the TV news or newspapers. I’ve been lucky enough to be able to speak to British members of the PRT (Provincial Reconstruction Team), find out about their jobs rebuilding and supporting locals, Military Veterinary Surgeons helping local farmers to look after their animals welfare, ensuring they are fit and able to sustain an income for their families. Engineers, who as well as supporting the troops, have been rebuilding local schools, medical centres, bridges. It’s not just about the war, it’s about trying to make the world a better place and protecting the vulnerable from evil and injustice.

Say what you like about our forces but remember, ‘You weren’t there man!’

Crown Copyright – Soldiers of 1st Battalion The Duke of Lancaster’s Regiment


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The first aid box

Years ago when I first moved out of home and lived on my own, I had a tiny little first aid kit in a bag, which I also shoved a box of paracetamol in, just in case I had a headache. Slowly over the years that kit grew, into a small box, a bigger box, a biscuit tin, a kitchen drawer, a shelf in a kitchen cupboard, right about now, with a house of 3 I’m at two shelves, and one of those is just for all my medicine, which I’m trying to fit back into a biscuit tin! You should see me when I go away for a night, if I’m away for longer than 4 days I practically need a small carryon suitcase for medicine. I wonder if any of it actually really works? I know some of it does as it’s prescribed to me for a reason. But some of the other stuff, I’ve just bought because the description of what it does or how it helps matches the kind of thing I’m after. I wonder if sometimes in fact it just makes things worse.


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Could there be a new treatment for Endometriosis in the future?

Maybe it’s too late for me, as I took the big decision to have a hysterectomy, but could there be another treatment for Endometriosis around the corner in the UK? Well there is ongoing research happening in the UK, but would the government or in fact the NHS, be willing to pay for it?

ValiRx Plc (AIM: VAL), a life science company with a focus on cancer diagnostics and therapeutics for personalised medicine, is pleased to announce that it has received patent approval by the UK Patent Office regarding its lead therapeutic compound VAL201 for a further indication in endometriosis or hormone induced abnormal cell growth in women. This follows on from and complements ValiRx’s earlier announcement this week of the successful first results from VAL201’s clinical trial (announced 24.02.15).

http://www.valirx.com/valipharma/products/val-201/