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 feeling 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

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.

Awful Periods – Could It Be Endometriosis?

http://www.huffingtonpost.co.uk/dee-armstrong/endometriosis-awareness-week_b_6790130.html

Endometriosis : the condition doctors take years to spot

Great article by Louise Scodie in today’s Independent

It does make you wonder if it takes so long to diagnose in the UK, do doctors, and people in general, really know much about the disease.

Endometriosis : the condition doctors take years to spot

Hysterectomy

Well, after all the rigmarole in April and the gallons of KleenPrep, they did a laparascopy in June and guess what…. Then Endo was back.  They had gone in really as I’d agreed to a hysterectomy. I was only 39, but it seemed like the best option. Judging from what they found it probably was the best option. My Left ovary was pretty much smothered in Endometriosis, so much so they could barely see it.  My bowel had become attached to my uterus via adhesions, and the Endo was back on my urethra too.  No wonder I was in so much pain!

Well now I’m without my vital female organs I actually feel a lot better pain wise.  Although my digestion is still a bit of a nightmare, but I think thats probably just stress! We moved back to the UK from Germany in September and its just been one enormous headache…. or stomach ache. I’ll probably end up with a ulcer or something now.

Bloated

That’s one thing you never realise & is never mentioned in the symptoms or side effects of #Endo.
Tonight I feel about 6 months pregnant. I know this as I’ve been pregnant, I can also compare my cramps to contractions, as I know how they feel too. I’m so bloated I need to sit down to take my socks off. It aches too & is so uncomfortable. The heat pack is out again.

Epetition

With so little known by people about Endometriosis, yet it being such an agonising, debilitating illness, it really does need to be considered. http://epetitions.direct.gov.uk/petitions/61832

Where it all began

To be honest, I’ve no idea.

But, in January 2013 I was diagnosed, and that’s when it all began.

I’d never heard of Endometriosis until I Googled my symptoms, heavy periods, bowel problems, severe menstrual cramps, needing to wee lots! Sounds like it could have been all kinds of things, but Endometriosis came up in a search, so I clicked on the link to a website. As I read through the symptoms it sounded just like that! So armed with this information I finally went to the Doctors to look for the answers.  Firstly they wanted to rule out IBS (Irritable Bowel Syndrome), so sent me off to hospital for a Colonoscopy (luckily I was asleep for that). The preparation the evening before was like some kind of digestive torture… drinking some revolting liquid, that looked like wallpaper paste and probably tasted the same, then imagine the worst most spicy curry you’ve ever had… yeah, that’s the feeling, I left a good book in the bathroom.

Anyway, the next day, after a frantic drive to the hospital with a spare pair of trousers, they made me drink more drink and finally I was empty! They put me on my side in a bed, said something to me as I watched a blank TV screen, then I was asleep. My next memory was being woken up, and told soon after by the doctor my bowel was fine and there was no IBS, so the next step was the Endo.

I went back to my doctor and they booked me in to the hospital for a Laparoscopy after Christmas, which was nicer than going in just before. If you check out the link you can see what that’s all about, it’s slightly less harrowing than the thought of a colonoscopy, but way more painful afterwards (surprisingly). The pain could have come from the fact they filled me up with gas so they could see most of my lower internal organs, removed the Endometriosis that they found, put a drain into me down by my hip, and when they pulled that out…. FFFFF……..K, if I’d ever had a sword pulled out of me, I imagine that’s how it feels!

So, they’d found the Endo, that’s great, well not really, but it just meant that it wasn’t all in my head, there really was something growing inside me. I even got to see pictures of it (nice). I wish I’d used my smart phone to take pictures of the pictures now, just so I could share them with you! They’d found this endometrial tissue growing outside of where it should, it should grow in a woman’s womb, but for us unluckly 176 million, it grows all over the place, for me it was on my bowel, urethrae, peritoneal cavity and they blasted some cysts off my ovaries too.

Well now I knew I had it and it was all gone, that was great, I could get on with things…….. no. What I’d not read up about was the fact that there is no cure, and it will just keeping growing back for the rest of my life! That’s just brilliant, an illness I’ve never heard of and which is probably one of the most embarrassing to try and explain to everyone! Lets see where it could go from here!