Everyday is a new lesson

[EndoEm]

I often think that when someone is diagnosed with endo there should be some handy information book. Not just about all the different treatments, but about the everyday things. Endo affects every single aspect of my life, often in ways I didn't expect. For example, before endo a trip to the theatre would involve: buy ticket, go to theatre. Going to the theatre now is akin to planning a NASA space mission. When I first got ill I stopped going anywhere or doing anything as I hated letting people down. Eventually I decided to go ahead and plan things and if I'm not well enough so be it.

My other half bought tickets to the theatre as a xmas present. So yesterday I paced myself, went to bed early, and made sure I didn't overdo it today. I dutifully packed my bag with drugs. Made sure I didn't drink too much so I'd be less likely to need the loo.

We arranged a lift so I could be dropped at the theatre door. So far, so good. But then, we followed the signs for the balcony (where we were seated). Herded through like cattle we approached the staircase. Eight flights of stairs later I made it to the top, pain building and cussing my other half for buying seats so far up we shuffled to our seats. I then necked a handful of codeine as my other half muttered the fateful words 'Oh look! There's a lift!' *face palm*

On the plus side, being so far from the stage meant the vibrations from the sound was pretty bearable.

So my lesson today was: look online and check accessability before you go to a new place!

Meds:

36mg codeine (stupid stairs), dulcoease, cerezette, forgot to buy loratadine

[Sunflower846]

I think it's shocking how they leave us to find out information our selfs. I was diagnosed 29th nov 12 and after a MRI scan and back to my gynae app was then told I needed to go on the temp menopause as I still have lots of endo left after my op. was given no info on it not even about side effects and my doctor has heard of thd injection but knows nothing also, what are you suppose to do when u can't even trust them to help. Thank god I found this site as its so amazing to chat to others who understand. I totally understand what you mean about the toilet thing, I had to plan things to make sure there was a toilet. Murder isn't it! Xx

[EndoEm in reply to Sunflower846]

I had the thought as I was sat in the pharmacy. There were all these books about common ailments like diabetes, stroke, epilepsey, depression, and yet endo affects around 1 in 10 women and there was nothing!

I have a stack of leaflets from the hospital explaining a CTscan, an ultrasound, a laparoscopy, a colonoscopy etc, but nothing on endo!

All the useful things I've learnt have been from my local support group and this fantasctic website.

[Sunflower846]

That's so true. There is the endo uk site where u can get leaflets n posters to put up which I'm going to do in surgeries around me and hopefully other places aswell. Terrible when its apparently so common x

[jalo69]

Well done EndoEm for not letting EndoMinx stop you anymore from living a life. Like you i have put off lovely walks,going out and standing for any length of time, etc with my friends because its painful to go too far. I feel like a moaning Minnie and it always sounds like an excuse but it so hard to really make people understand how it really feels. I remember doing The Race for Life just before being diagnosed. Im not a jogger but i did a bit of that and a bit of fast paced walking then half way around i had an exruciating pain in my hip ,leg groin area. Frightening but i worked through it. I had a similar experience when i walked with my class of children on a wellie walk. I had forgotten an inhaler and had to run back for it how i got there and back without collapsing i have know idea, but i did it. This was because of my ovarian cyst,since having that removed i dont have such intense pain but i do still ache and have to take Boots Pharmacy in my handbag on every trip!! Youre right, the information on Endo is very limited. Only 2 weeks ago i was sat in the waiting room waiting to specialist Gynea. A leaflet was displayed behind a glass case, but in a rack full of leaflets not one for Endo! Hope you enjoyed your trip and look forward to many more.xxJ ;))

[Lillil]

I am so happy and so annoyed! So annoyed as a few days back I wrote a ridiculously long blog that said it was published then crashed- i'd invested a lot of time, effort and emotion into it and had even said inspired by EndoEm'! And then I'm so happy as it was pretty much what you have written here! As a newbie to the world of endo I was saying the same. I feel like there should be some kind of handbook that as soon as you are diagnosed with endo you are given...with all the top tips and about the journey you will go on...i said wouldn't it be great if we all wrote one together- do you think we could? It would be amazing!

The chapter I would have liked to have read last night is how to still enjoy a chilled out family, sunday dinner. I lay the table all set and I look at my place- a heat bag for my back wRming the chair, a heat bag for my lap for my achey hips. Squash not wine to take my meds with. Alongside my knife, my buscopan, peppermint oil, paracetamol and macanamic acid.

In the hallway, ready in my bag, for "emergency, major pain" my tramadol, spaee heat patches, tens machine and mini pillow incase i need to lie down somewhere in a ball quickly.

Meanwhile I decide whether to take codiene for likey pain that will arise and discuss in my head whether the spasms my body are about to get will be offset by having codeine which will make me constipated which will be offset by so much veg which will help my ibs that will give me the opposite problem, so the codiene might help that too!?!?

Everyday is different, i never know the right answer, so sometimes just have to hope and pray and roll with it whilst learning and then regret it whilst writhing in pain

I will become my own expert eventuallyxxx

[EndoEm in reply to Lillil]

Snap! I also have a shelf in my cupboard for 'Oh my god I'm dying pain'! I also find it hard to balance all the drugs effectively. I also have ibs so have to balance the codeine with senokot and dulcoease.It's such a delicate balance that half a tablet too much senokot and my ibs goes haywire.

Really feel like we're left to battle this on our own, and become our own doctors!

I took too much senokot this weekend so I'll be spending my evening contorting my body to try and free the trapped gas. Good job my other half has a sense of humour!

Hugs xx