Endo 365
Ima let you into a little secret here... Sometimes I get very embarrassed about my blog- scared that it will be perceived as self-indulgent (defiantly some truth there), obnoxious, and using cliché's like a crutch. So to bring me down a peg or six, here is a blog that I never thought I would write. That's right, even this is a taboo to old twatfaceal.
IBS. Warning: This blog is to be taken with a pinch of salt... And possibly a Gin and Tonic.
It ain't mainstream sexy. In fact, it is not any stream sexy except maybe
sewer. But at war against all things taboo, here goes.
When I was first diagnosed with endo, I had no IBS symptoms, this continued for three years until I was take off GNrH for the first time. My endo was 'let loose' to see what would happen (it resulted in my school bus diverting off to hospital, and on another occasion an ambulance to school whilst I bullied the receptionist into screaming the C-BOMB with me at the top of our (my) morphine relaxed lungs (this must have been post Vagina Monologues) beside some poor souls were sitting their A Level Physiscs exam). Whilst all these frivolities kept us entertained, something godawful ransackled the shrinking violet that was my bowel. Tadar.
My IBS is as a secondary condition from my endo (Why thank you, you just keep giving). I can't help it
but there is something almost more embarrising about IBS because at least
Endometriosis sounds cool. When I am around people's house trying to
politely decline a cheese and onion pastie because I will implode, even I,
the girl born without shame, feel slightly awkward.
After I continued to get pain post re-shutting down my ovaries, my
gynaecologist referred me to the Rectoenterologists (that's their official
title) or as my brother calls them, The Party Poopers, and slightly less
eloquent; Shit Police. Although I don't know what he is laughing at; the
stench he releases they'll be after him before he can say 'ShitTheBed.'
Now IBS stands for Irritable Bowel Syndrome. It is suspected that 50% of the
population have it, although I think most people have or will experience it
at some point during their lives. Around 40% of women with endo also suffer
with IBS although my gynaecologist, and I am inclined to agree with him on
this one, believed it was more like 90%- the symptoms are simply
misdiagnosed as contributory endo symptoms. IBS is so common but we do not
realise it because, guess what, we do not talk about it. I mean, does a
curry really agree with anyone? Nervous poo? Post Alcohol blow out? All
common phrases and without realising all IBS related.
Why do we get so uptight about poo? I mean the queen does it for crying out loud.
And IBS is not really a 'thing'. It is an umbrella term essentially saying 'well we have ruled out everything else that you do not have so we're just going to give
it the blanket term of err. umm. irritable bowel .syndrome." The 'syndrome' validates it as medical you see.
So anyway, I visited the shit police and had various scans to check
everything was okay- which is was. Apart from (ironically) I have an itty
bitty cute uterus- who would think something so evil could be 'little' and
'cute'. I had all the allergy tests to rule out any intolerances causing
the pain.
And then it happened.
I had a colonoscopy.
I will never forget that day.
Having a camera up where things should only ever go down is
interesting to say the least. But at least I can die having seen the inside
of my gut... Oh wait- what? That's not on your bucket list?!
As suspected, having found no good reason, the Shit Police diagnosed me
with IBS. But it isn't all bad- as it looks like I'm going to have my
En-Suite paid for at uni.
Although I do not have any Endometriosis on or in my bowel, I had it on my
Pouch Of Douglass which are the ligaments holding your stomach together.
That coupled with my hypersensitive and messed up nervous system (good one
endo) has given me IBS. No surprise, with my IBS, I get a lot of pain and
for about a two years my bowel was utterly inconsistence (like person like..
bowel?) It isnt much better now however diet and exercise have a huge influence.
IBS is like endometriosis in that they do not no the cause and it is unlikely
they will ever cure it. You have to find your own balance.
I was then refereed to a dietician where we discovered the Endo diet I had been
following for the past year has probably put me in more pain; because
although I was not eating any wheat or lactose, I was eating loads of onion
based products with lots of veg that is all awful for your bowel,
apparently.
The FODMAP's diet was daunting at first as there is (no joke) over 100
things you cannot eat. However I preferred it to the endo diet as I can now
have lactose free dairy products opposed to nasty rice milk and co, and I no
longer had to force feed myself superfoods like broccoli.
I am lucky in that my momma was a super clever food technologist, so between
us foodies we engineered a cookbook of Alice-Friendly dishes and bakes and I
honestly have the best diet. I still have lots of salads, just with fruit
and veg that doesn't irritate me and cause me pain. If this is something you
think you may suffer from, here is a link to find out more- http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ it is just so worth informing yourself about. I am not going to pretend it is not hard work, as it is a lot of effort. But it is also worth it.
Having gone on the FODMAPS diet, I gained so so much energy. It has been one
of the highest-positive-impact things I have done and I shall be on this
diet for all of my life because it doesn't matter whether my endo packs its
bags and leaves me, this IBS is for life. But it is okay, because between this
diet, exercising, occasionally taking fibogel to regulate me, rest and
elevating myself from as many situations where I am stressed or anxious as possible, I have got this condition pretty under control. But it takes discipline and time, both
of which I am willing to surrender to as I believe the outcome is greater
than the input.
Oh and another key is when I need to fart, I do it because it relieves the
pain. And if I need to open my bowels, I do for the same reasons. I am not
saying fart in someone's face nor go in the street, but be kind to yourself
and sod the embarrassment of only going in your own home behind closed
doors.
Plus my oldest friend and I found out a fantastic game at school; like knock-a-door-run,
expect it's called fart-and-pin-it-on-someone-else. Hours of endless entertainment.
My best friend (who you will shortly be graced with a blog from) looks at me as soon as she realises, and inbetween giggeling, tells me that I'm a motherplucker and she would beat me up if she didn't know it relieves pain.
It is not easy, it is a horrible subject to ever broach with new friends
and fancies- I have found it is best to get them drunk or drug them first. I joke I joke, I kid I kid...
One of my best friend has IBS and it was something she used to be really
embarrassed about. I guess between us we have made each other feel
comfortable, confident and normal about it and she particularly has our
friendship group in stitches about her faux pas (she is much funnier than I am).
It is not embarrassing in our close friendships, we have stories that make people laugh with us, even if it does give us both a lot of pain and mean we miss days of work and feel
crap. I am so proud of how she has become to own it and not be ashamed, and
we have found that if you are not embarrassed, then no one else is really.
Also, if I am in pain, I am able to say. IBS is never taken seriously for
the pain it can cause, yet some people end up in hospital with trapped wind
and the like.
Do not underestimate or undermine IBS- It is not a killer but I debilitates and literally irritates so give it the baby wipe of respect it deserves.
If you think you may have IBS, push to be refereed just to make sure it is
nothing else, and if it is then if there is anything they can do for you.
And if you do have it, try not to be so embarrassed and ensure you are dealing with
it best you can.
All my love,
And avoid coffee,
Your Smelly Monkey,
XXXX
