Losing my MRI-virginity

In all the time that I have been trying to cope with the onslaught of Endometriosis and its painful symptoms, I had never had an MRI. Heard about them, wondered why I was never offered one, but never actually had one. I know, shocker.

Well that changed.

I was sent to see a bowel specialist at the request of my gynaecologist after he found my bowel had fused to my womb and my Pouch of Douglas (Google it) had been completely obliterated by adhesions.

My Bowel Guy ordered an MRI scan. He also put me on a list for a sigmoidoscopy – which is just code for Colonoscopy but they don’t want you to get all freaked out in the room, so you just freak out at home with in front of your laptop screen.

Anyway- the MRI. I’d seen them on tele and I had spoken to people who have had them in the past. Isn’t it funny? As soon as you mention a medical thing, the masses are like “Yes, I had one of them for my hip/liver/pelvis. It was no problem, it’ll be alright!” I know their hearts are in the right place and they have the best intentions but it can be incredibly overwhelming.

My MRI was scheduled for a Sunday evening at 19:40pm. I thought this was a bizarre, on a Sunday. But as I was going to a city hospital and so I just assumed they ran things differently in the Big City.

As my husband and I meandered through the hospital corridors following (and sometimes losing) the blue line, we finally found the radiology department. The radiology suites were a few flights upstairs; something I wasn’t quite prepared for and was glad of the long sit down when I reached the summit.

My letter said to report to the radiology reception desk when I arrived. So, there I stood, letter in hand, a blank expression on my face as I stared at a dark, closed reception area. The waiting area looked like it needed a lick of paint and boasted some pretty sad rows of seating, the plastic kind that you had at primary school.

Taking our cue from the only other couple in the waiting area, I gingerly took a seat next to my husband and listened to the random, mechanical sounds of a hospital. No one else in sight.

It was at this time, that my overactive imagination decided to kick in. The image of that scene in Walking Dead or Resident Evil or Dawn of the Dead where the building is deserted and a lone zombie just strolls though. I made the mistake of voicing this and won a ton of laughs, and some bizarre looks, from the other people in the room.

I’d only just finished telling my anecdote, when a very angry looking feller walked through the doors. He looked flustered and outraged. Mr Cranky-Pants started to march up and down the corridor asking random people, orderlies, other patients, a cleaner, where the reception was!

I was taken around to a second waiting area where I was asked to take a seat (again). I watched quietly as the other lady was taken into a cubicle, like the ones at the swimming baths, to discuss consent and instructions. She came out looking relieved, but no different. I began to relax, I mentally chastised myself for worrying.

A nice young woman in blue scrubs asked me to follow her to discuss the ‘procedure’. I began nodding along to her routine questions. I almost choked when she handed me a couple of hospital gowns (you know the ones- with a gap in the back!)

Internal whinge-voice: BUT that other woman didn’t have to wear one!! I haven’t shaved my legs, the floor is cold and I’ll have to go sit back out in the waiting room in this hideous friggin’ gown!!”

As I undressed I began chucking my clothes in the locker, resounding bangs only serve to fuel my darkening mood, gritting my teeth and muttering to myself; a few choice swear words. I then heard my husband say aloud “Someone doesn’t sound very happy…”

Eye-roll.

Taking a deep breath, I opened the cubicle door, owning it. “Why is it always me?” The other couple giggled and looked at each other, I answered only with a blushing smile.

When I eventually got into the prep room, the nurse was unable to get a cannula fitted as my veins collapse under pressure. I ended up with 5 holes as he tried again and again, stabbing me with the needle. He even filled up a rubber glove with warm water to try and coax the vein to the surface of my skin! I ended up leaving with 5 holes; 3 in my left arm and 2 in my right!

The whole experience was eye opening, but not overly traumatising. It felt like I was laid in that machine for an age, inwardly rocking to the dum-dum-dum-dum. As I listened through the ear defenders I couldn’t help but notice the similarity between the mechanical noise and the base of a well-known Queen song.

I was just waiting for the “Flash ah-ahhhh…” to kick in… turn it up LOUD!

 

 

 

Chronic Skincare

When it comes to skincare and beauty and the first thing that springs to mind at the mention of either; I worry that my chronic condition and the severe pain I go through will make me look older than I am.

I’m 26 and I already feel 86 – I don’t want to look it too!

Pain changes me. Not just physically or emotionally and not just on the inside. My family can see the pain in my body language, hidden in my sentences and my dull replies of “I’m fine.” But pain is also etched in my features, written all over my face and I’d hate it to become a permanent feature.

Women with Endometriosis fight a life-long battle, their bodies warring with its insides every day. It’s difficult and exhausting.

I decided that I wouldn’t battle with the outside of my body, I would protect it, nurture it. And so, I developed a skincare-selfcare routine.

My skincare:

  1. Cleansing – I use a foam wash which has Tea Tree in it, this help to prevent break outs. I don’t really have a favourite, I’m using one that was on offer in ASDA’s range. I massage this into my skin with a skin buffer that I ordered from WISH for £1! It exfoliates and because it is made of silicone, it’s real easy to keep clean. I also use a Micellar Water from Simple, usually in the morning or pre-workout (this makes sure I get a clean sweat, preventing break outs)

I love The Body Shops’ Camomile Sumptuous Cleansing Butter which is so luxurious and leaves my skin feeling baby-soft and healthy. I’ll use this after a heavy make-up day as it takes every scrap of make-up off. Although, I do tend to do a double cleanse when using this- I’ll wait 5/10 minutes after using the butter to let it soak into my skin slightly and then I’ll go in with Micellar water to remove any excess oil left over.

 

  1. Toning – I love love Boots Botanics Rosewater Toning Spritz! It’s in a spray bottle which is super practical and prevents unnecessary wastage. This product is really refreshing, cleanses impurities and smells amazing. *Boots have recently changed the packaging on this*

 

  1. Serum – I have fallen for The Body Shops’ Drops of Youth Concentrate serum. This goes beneath my moisturiser. It feels slightly tacky until it dries completely, but don’t worry, it feels smooth and is designed to balance imperfection for a more youthful looking skin.

 

  1. Day Moisturiser (make sure this has SPF!) – I switch between The Body Shops’ Aloe Day cream, which is great for sensitive skin, slightly cooling and Simples’ Kind to Skin + Protecting Moisture Cream. I love this during the Summer as it has SPF 30 and is also great because I have sensitive skin. This has vitamins B3 and E too. For night time, I reach for The Body Shops’ Aloe Night Cream feels luxurious and thick and soaks into the skin easily without leaving a greasy residue. It’s gentle enough for sensitive skin and I even use it on my neck and collar bone area.

**Breakouts – I am prone to hormonal breakouts (aren’t we all, ladies?) which I treat with Tea Tree Oil. Just put a drop of this on a cotton bud and apply to spots (don’t use fingers as it can transfer bacteria). I bought mine from Home Bargains for 99p and it works really well!**

 

Other bits & pieces:

  • Lip Scrub – SugarBaby Vita Lip which is a collection including a coconut infused Lip Balm and Lip Scrub. They both come with tube and applicators which is no-mess awesome and have high-performance ingredients including Sweet Almond Oil and Vitamin E.

The scrub is enriched with finely grated granulated sugar and blended with Grape Seed Oil and Organic coconut oil to gently eliminate dry, chapped skin.

The balm has cocoa butter, Shea butter which add softness and shine after exfoliating the lips.

The best thing about these products (not just that they work!) was the price, 49p in the Superdrug sale! This product has no artificial fragrances and is NOT TESTED ON ANIMALS!

  • Lip balm – Vaseline Aloe Vera, Nivea ‘A Kiss of Moisture’ or ‘Hydro Care‘ – these 3 are really handy just to stick in your bag.

 

  • Hand cream – I love Vaseline’s Healthy Hands Strong Nails. But I like to splurge on Champneys As Good As New Harmonious Hands. It’s got a lovely, floral fragrance which just smells like luxury and this lasts a while. This hand and nail cream also has SPF 15 which comes in handy if you’re driving and your hands are just right there on the wheel. We don’t need no sun spots

 

  • Face Masks – I use the 7th Heaven face mask sachets. They’re super convenient, especially for travelling! One packet can do 2 (maybe 3) masks – depending how liberal I use it. (These are around £1) I love the “Aloe Vera” Blemish Mud because of how soothing it feels but my skin feels really cleansed afterwards too! If you feel like a splurge, I reach for Lush BB Seaweed which is a little pricier but feels heavenly. (this needs to be stored in the fridge!)

I had an amazing customer service experience whilst shopping at The Body Shop, Doncaster Outlet. I think this was a big part of what made me fall in love with their products. The lovely sales consultant listened to what I wanted out of skincare and handpicked products to suit me. Great!

I feel like I should also say that I fell in love with skincare & beauty after watching a GlamLifeGuru YouTube video. Before, I was very lapse with skincare; some days I’d do all the steps, others I’d just neglect it altogether. But after watching Tati’s video on affordable skincare- she really inspired me to get my shit together! So… Thank you Tati xo

Click the links to watch.

 

 

*This is not a sponsored post, all products were purchased for myself and I have found them to be really effective*

Too much

Last night, I took too much morphine. Irresponsible. Dangerous. Essential. This was not a ‘cry for help’. After all, I’ve been crying for help for 3 years now and it counts for nothing. I did not take an overdose and I don’t want to die.

But, the had pain enveloped me, dragging into my legs and causing my stomach to bloat unnaturally, like a balloon. And I was alone. I am alone with this pain. There are very few people that understand exactly how it bruises me, how it is killing me slowly, day-by-day. Plenty of people have seen me in pain, I am lucky to have such a supportive and caring family, but they don’t know.

I didn’t measure out 5ml of Oramorph. I just unscrewed the cap (which is a chore all on its own because of the child safety top!) and took a swig, a gulp.

As I laid in bed, praying for the pain to stop, praying for the endometriosis to just fade away, my body began to react to the medication, and as I realised what I’d done, how silly I’d been, I began to panic. But I was alone, I had to coach myself out of a panic attack and once again carry on despite of it all…

 

“Barely there-

Standing horizontally, shaking, on the end of my toes,

my face turned up to a starless sky, blocked by a veil of ceiling.

My limbs are heavier than steel,

uncooperative against the unyielding torrent that is flooding my body and my senses.

Almost too much-

My joints creak, protesting my fool’s attempt at slight movements, almost too painful to finish the motion,

and so I give up.

Closing my eyes while my thoughts swim and flail, incoherent,

unable to follow one caution on to the next.

I need to cling to someone stronger, warmer, better than me, I need to be held.

Holding my broken pieces, frayed edges, together.

As I lose control, each action has a little something extra, a little jig, like a tic I am unable to hide.

It is easier to lie still, taking shallow barely-there breaths.

There is what’s left of the strange tang in my mouth, the last testament of my weakness and evidence of my defeat against an unrelenting adversary;

Pain.

And Pain is lonely.”

alone
Clara Lieu Fine Art

What a nurse.

As I laid on the nurse’s couch, my mum stood beside me holding my hand tightly, I was engulfed by a deep wave of sadness and defeat. My nurse approached, gently explaining her actions, looking away I felt her cool hands on my stomach. I tried to steal myself against the sharp pain of the needle, a puncture wound, the solution that would render my remaining ovary useless and chemically induce menopause, again, at 26.

Thankful that the pain from the needle, unlike my Endo-pain, is sharp but over quickly.

I squeezed my eyes shut, feeling them water and almost let go of my emotion, but instinctively, I knew that wouldn’t be fair on my mum, or this calm and compassionate woman who was trying to help me manage the endless pain.

I am devastated that I have had to go back on Zoladex injections. This is my 6th week of relentless abdo pain. I am now unemployed and spend most of my time indoors, either in bed or taking things slowly, drugged up. I can count the number of times I’ve ventured out of my house on one hand and the amount of times I went alone are even less.

I don’t know how long it will take for the injection to change my body, for the side effects to take hold and plunge me into a storm of yo-yo body temperatures and mood swings. This time this treatment has punctuated the end of an unsuccessful year, a year spent trying to conceive. At the front of my mind, the single harrowing thought; well, there definitely won’t be a baby now.

I have failed to conceive in 13 months and I can no longer tolerate the relentless pain caused by my Stage IV Endometriosis and my time has run out. For now, we must pause our dream and wait for the professionals and doctors, who will fail to fill me with hope and solutions, to help me. I must wait until the next step can be shown to me by someone who should have all the answers.

Can you blame me for being sceptical? The last time I visited a doctor, he dismissed my severe pain and my sadness and pushed a prescription into my hand. A green piece of paper which I could trade for pain relief. The biggest bottle of liquid morphine I’ve ever seen. Three times the amount of Oramorph that I’ve ever been given before. Is this the answer? Flood me full of strong drugs, to block out my pain, which will leave me immobile, comatose, restrained and incoherent. The drugs he gave me are designed to give relief, but are also effective in keeping me pliant and silent. It’s all too much and I need a break.

But by going back on the zoladex treatment, I am hoping the pain will disappear and the active endometriosis should settle down. This will also cut my ties to the stronger pain killers and allow me to live my life, like a normal person.

I was brought out of this reverie by my nurse’s slight pressure as she applied a dressing and gently touched my shoulder, our eyes locking, and a smile. I sat up and zipped up my shorts, gingerly sitting up and testing my aches and pains. I sat across from the nurse as she scanned the computer screen looking to book my next appointment in a month’s time. Yes, this is a monthly ‘torture’ regime.

“Now, I won’t be here when your next one is due…” she said quietly.

“Ah, are you going on holiday?”

She laughed nervously, and softly said “No, I’m actually leaving the practice…”

With that final sentence, the emotion that had been brewing inside me roared in my ears and I lost control for a small moment, my resolve crumbling, tears in my eyes. I do not know this lovely lady personally, I only met her when I joined the surgery and started my first course of injections last year and I have never seen her out of her nurse’s uniform. She is an amazing nurse and a good person, who made me feel at ease and make this small but awful moment, once a month, that bit easier.

You see, I don’t want to have these injections. I didn’t a year ago and I don’t today. I want to be normal. I want a period that doesn’t leave me incapacitated. I don’t want pain every day. I want to conceive, naturally. I want to have a baby.

But I found I could be ok with it, with having these injections. As long as I could have that 10 minutes’ interaction with someone who understood what I was going through, who showed me compassion. I could cope with this rebound, if I had someone who knew me. I am full of gratitude for all she has done for me, for understanding, from one woman to another, for being a friend as well as an excellent Nurse.

I have no doubt that she has broken hearts with breaking the news of her resignation. But, short of demanding that she stays, throwing a tantrum and locking her in her nurse’s room, there is nothing I can do but wish her all the best in her new adventure.

So, there’s nothing else to do but pull up my big girl britches and get on with it. Life has given me these sour lemons which I will turn into the best damn Lemonade we (and Beyoncé) have ever tasted.

I hope you read this and know you will be missed. Good Luck Nurse P. Go with love and my very best wishes.

Tramadol vs Fentanyl (vlog #1)

I’m doing something a little different today-

Because it’s taking so much out of me to get words down, I decided I would do my first ever video entry, my first VLOG!!!

 

Be kind- 

pain
click here to watch

 

*Update: less than 12 hours after this post/vlog went live, my period started. The patch is back on, I’m in pain and I’m not pregnant. Oh- and my favourite comfy pants are ruined. 

This is what it means to be an Endo Warrior

D e f e a t e d ?

I haven’t slept for 3 nights. Tossing and turning, uncomfortable and exhausted. It’s been a few days now since I’ve slept all the way through. Maybe that’s why I feel so drained?

On Tuesday I visited my GP. This is the first time I’ve seen him in 2017. My pain killers don’t work as well anymore and I’m having to use every trick up my sleeve to get some relief. I’ve tried other things; medicated menthol patches from Amazon, a new TENS machine, all sorts. None of it seems to be doing any good.

tens
Try this TENS here
The doctor only told me what I already knew. I know there’s no cure. I know things were pretty awful inside me during, and still following, my surgery in September. I know at some point I’m going to have to make that final decision. His question was: “How much longer are you going to continue trying to conceive? How much longer can you stand it?”

If you’d asked me this last night, my response would’ve been; no more. I can’t see myself getting pregnant, I can only see pain. I’m only just managing to pull myself out of my pit after a week’s flare, I’m not sure I’d be able to cope emotionally if something bad was to happen after I conceive. I already know my tube, the wanton singleton, isn’t healthy. The risk of having an ectopic pregnancy is high; if that occurs not only will I love this last fallopian tube, but also a baby I have wished for, for so long.

Today, however, I’m still profoundly pessimistic about things but I’m not sure I’m ready to throw the towel in just yet.

Surely there is another option? Anything!

list
The list of stuff I’ve tried and that failed is getting longer…

If anybody has tried anything that has provided some relief, or aided them in conceiving or in making such an impossible, difficult decision, please contact me.

I’m almost there…almost ready to admit defeat, but- not quite.

I am not unreliable. My illness is.

After having yet another troublesome half a year, health-wise, I once again find myself in a state of unrest. Awaiting further surgery and battling monthly flares courtesy of my Endometriosis, has left me feeling weak and lost. Unable to fulfil my role in my new job, I am unsure of where that leaves me professionally. I could get a part-time job, get stronger, strive for more responsibility and more hours but then I crash down again once my illness dictates I’ve done enough or too much.

I never thought I would have to plan out every aspect of my life, constantly asking myself; “What if I get sick? What if I need more surgery?”  I have never felt more reliable in my life. Lately, it feels like this illness is who I am now, it’s my life and I have forgotten what I enjoy, what my goals were, and who I am. It’s almost as if I need to learn who I am, reconnect with what I want from life. It saddens me that I have forgotten what I was like before my symptoms first started. Was I fun? Full of energy? Outgoing?

I look out from my office window, watching the clouds float by, blurred in the winter breeze, the sun shines to hide the cold. The clouds move so slowly and I feel dizzy as I watch, it’s almost as if I can feel the minutes tick by, me frantically trying to catch up to life.

As I sit in my pyjamas, on a Friday morning, writing this entry, it is difficult to look beyond the 8th of December, the date of my next surgery. A surgery that will remove my faulty ovary and in its place, a gaping hole. What do I fill that hole with? How can I mend myself from the inside out?

I don’t know the answers to these questions yet, I may never know, but I will stumble along as we all do in life, trying to do the best that I can, with people that I love, with patience and understanding. 

 self

 

I regret that I cannot publish more light-hearted posts at this time, but my thoughts are hectic and do not always make sense, but I use this blog much like a journal, and hopefully my sisters with illness can relate and will take comfort in knowing we are not alone. Please reach out to me, if you are struggling today.