Recent Hurdle

(Note: This could be distressing, caution advised)

That morning started like any other morning.

Up at 7am, dressed and out the door by 8:15am. I felt good. So good, I had heels on.

As I made the commute to work, I sang my heart out. Singing along to my Disney playlist, I was happy.

About 10 minutes away from the office, I felt a strange twinge in my side. With my insides being as angry as they are, god knows this wasn’t anything new. However, the severity of the pain and the rapid onset was. How I made it to the office, I’ll never know, I can’t remember the rest of the drive. Something was very wrong.

I abandoned my car just outside the building, fearing I wouldn’t be able to walk the distance from the car park. I could barely walk. It took all my strength to stay standing. The pain was so intense I had to hunch over, taking slow steps, like an old lady.

I could hardly breathe.

I stumbled into the building, the first to arrive, I clutched the walls as I staggered to the bathroom. How is it possible to feel like I was going to be sick, pass out and scream all at once? What was happening?

This agonising pain increased from 1-10 in just twenty minutes. I didn’t have time to reach for my rescue meds, to apply a heat pad, to do anything. I was alone & scared. Shaking, I dialled my husband’s number. Knowing he would be busy at work, I held my breath, squeezing my eyes shut against the pain.

Between sobs, I cried for the receptionist to pass the phone to my husband.

In all the time I have been struggling with Endometriosis and pain flares, this was the only time where I’ve made a conscious decision to call an ambulance.

Nick reassured me, told me to call 999. I did.

As I was on the phone to the emergency services, my manager walked in. She took one look at me and took over. She will never know how grateful I am that she was there, with me, that day. I laid my head on the desk, crumpled in pain, trying to breathe, trying to stay conscious.

I felt like I was dying. The pain was so bad. Something was very, very wrong.

Three calls later, we were told help was on the way. It felt like it would never come. Just when I thought I couldn’t hold on, Jade said, “Oh! They’re here now.”

The sigh of relief I released was immense. In that second, I thanked everything that they made it.

Like angels, the paramedics swooped in and immediately took over. They took one look at me and hooked me up to Gas & Air. I then had lots of stickies on, that told them how my heart was doing. It felt like it was aching.

‘Why is this happening? Again?’

I had to shuffle to the ambulance, a paramedic by my sides, sucking on the gas.

It was all hazy as I drifted in and out of pain. I remember Jade wishing me well, giving me my bag and then we were on the way to the hospital.

I laid on the gurney, unable to straighten my legs out. It was like my body instinctively knew to curl into itself, to guard against pain.

I winced against the jerky movements of the ambulance as it stopped and reversed at the hospital. And again I was awash with relief as the ambulance driver opened the doors and I heard, “Is this your husband?”

I lifted my head and our eyes locked. And I cried. I knew that I could collapse because I knew I could lean on Nick, that he would watch out for me and pick me up again.

I was wheeled into A&E and I braced myself for the onslaught of questions…

“What’s your name? Date of birth? What’s happened Aimee? How is your pain now?”

It was the same routine, just a new hospital and new faces. These doctors didn’t know me.

I think every woman with Endometriosis struggles with new doctors, reliving all the traumas, the medical history and desperately trying to make the professionals see how bad the pain is, what it’s like and that it’s not all in your head.

The notion that I might not be taken seriously and discharged is always a very real fear, in any hospital visit.

Luckily, something was shining down on me. I was blessed with a very understanding doctor who could read the pain written all over my face. She overruled other doctors and some less-empathising members of the nursing staff, she held my hand as I cried and rolled around the bed in pain.

She heard my “Please. Please help me.” and answered…

with morphine.

There’s always a question that I dread, not because the doctors have to ask it, but because I have to answer. “Aimee, could you be pregnant?”

Something squeezes around my heart each time, I answer in the negative.

Despite my constant rambling about previous surgeries and cysts and MRI results and ovulation pain stories and pain killer lists, there still seemed to be a lot of confusion about what was actually happening to me.

Some theories were:

  • Ectopic pregnancy
  • Appendicitis
  • Pelvic Inflammatory Disease
  • Some sort of infection

All theories that I’ve heard before, bouncing around my head. Theories that have all been proven wrong. This was my Endometriosis.

The doctors, thorough as they were, insisted on an Ultrasound scan and an X-Ray.

By this point, I had been given paracetamol, a diclofenac suppository and a whole lotta morphine, along with the two tramadol I had taken myself whilst still at work. I know I sound like a drug addict. But that’s just how bad the pain was. I can’t even describe it now, like I’ve blocked it out.

I could barely stand still for the chest X-Ray. I held onto the machine, my legs shaking, biting my lip to keep from crying out. It was all too familiar, all too much. I lowered myself back onto the gurney. The Radiologist hurrying to make a call to the Ultrasound department. She managed to squeeze me in, luckily. That meant that I wouldn’t have to wait for 7 hours for a scan.

I was taken back to A&E before being taken to the ward. I would be admitted. I was shown to a bed, and waited as my husband went to the car to collect my overnight bag (as practised as we are at this, he knew I would need it).

While I drifted in and out of restless sleep, the drugs starting to overpower my senses, the doctor came. I struggled through an internal exam, I gritted my teeth against the dismissal of my accounts. The gynaecologist told me everything would be fine, told me it wasn’t a problem with my cysts, or my Endometriosis. I couldn’t understand what else it could be. Dazed, I returned to my bed, texted my husband, who quickly returned and wanted to speak with the doctor.

She retracted her original comments, telling Nick she suspected the Endometriosis was the culprit, along with an internal infection. I was filled with antibiotics; a large dose via IV and 2 lots of oral antibiotics. What had caused the infection? 

I will never know.

I was discharged the next day, after being told I should have plenty of medication and pain relief at home and should therefore be able to manage the pain. I was ensured that things should start to improve now I was on the antibiotics.

I doubt that there was ever any infection.

When I had failed to ovulate after stopping the zoladex injections, my doctor prescribed me Clomid. This drug works by stimulating the ovaries, to encourage ovulation. I believe that the Clomid irritated my ovary (and in turn, the attached cyst), increased its size, which then aggravated my Endometriosis and caused the flare up. The fluid in my pelvis, could have been just another consequence of this.

And following a tense few weeks, waiting for a hospital appointment, my Gynaecology specialist confirmed this… Right before he offered me a ‘final’ solution.

I think that’s enough offloading for now, don’t you? Just know that I am incredibly appreciative of all the support and light I have received, and I will be alright in the end – after all this will only be a small part of my journey.

xo

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Dear Chronic Illness

exciting stuff has happened!

Sometime last year, I submitted a piece of work for a collaboration with Spoonie Survival Kits. I never expected my piece to be chosen as I expected there to be a lot of entries because the chronic illness community is such a large and diverse group of people, I was sure there would be someone better than myself.

BUT they chose mine! I’ve been over the moon and have tried to keep my trap shut about it until i knew for sure that things were rolling.

Pippa has done an excellent job of putting this amazing project together. It’s a collection of letters written by 16 young people all with chronic illness. The publisher Leesa Wallace has devoted much of her time and energy, along with her resources over at Wallace Publishing, turning this dream into reality.

dear chronic illness cover

Dear Chronic Illness is available in both eBook and paperback format.

All of the royalties from the book are to be donated to Spoonie Survival Kits.

The book contains letters addressed to long-term conditions ranging from POTS to endometriosis, from tumours to Severe M.E. The contributors include…

real and down-to-earth reflections about life with a chronic illness–  it’s lighthearted and often humorous, but it’s honest too.” -Pippa

Honestly, I couldn’t be more chuffed about this and I hope you join me in my excitement. Together, the 16 contributors along with Leesa & everyone helping to make this happen, have created an amazing thing that will shine a light on what it’s really like living with a chronic illness. I’m so proud of you all!

Click to buy your very own copy of Dear Chronic Illness!

xo

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 in front of your laptop screen.

Anyway- an 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, people (sometimes I don’t even know them!) are like “Yes, I had one of them for my hip/liver/pelvis” or  “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 time, on a Sunday. But as I was going to a city hospital 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 up a few flights upstairs; something I wasn’t quite prepared for and was glad for 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. Anxiety, nervous laughter. 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. Attempting to lighten my mood; I made the mistake of voicing this and won a ton of laughs, and some bizarre looks, from the other 3 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! We didn’t see him again.

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!)

Cue ‘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 served 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 warming my arm to 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 beginning of a well-known Queen song.

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

 

 

 

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.

“But you’re ‘just a receptionist’ what do you know?”

16 gems from the life of a Receptionist…

  1. I eye-roll 3,496 times a day and Facepalm 1,569 times also. facepalm
  2. I make frequent use of the ‘hold’ button.
  3. I get excited over new stationery.                   LOL
  4. When you’re shouting down the phone at me, it doesn’t make me want to help you more.
  5. I’m an all-day grazer. My desk is covered in snacks. cream-cake.jpg
  6. I’m more embarrassed by your ‘embarrassing story’ than you are. smiley
  7. We’re not all 1 person. As much as I’d love to I can’t physically, emotionally, willingly- answer the phone, sit at the front desk, be the Dr’s secretary, filing and do admin.
  8. There are times when I release a string of profanity as soon as you hang up.
  9. I don’t have a magic wand, and no one is more gutted about that than I am. I can’t magic appointments out of thin air.    IMG_0209
  10. It’s exhausting being smiley and upbeat all day long. Most days I manage to leave my shit at the door. Most days…
  11. This is my job, my career. I am a professional receptionist. This isn’t a stop-gap while I’m home at uni.
  12. Saying the words: “Just-a-receptionist” is a sure-fire way of pissing me off and it will earn you either an eye-roll or “WTF” face.
  13. A sense of humour is VITAL in this job. bow
  14. It will be very tense prior to the annual CQC visit. IMG_0291
  15. Nothing makes me feel more like I’m exactly in the right place more than hearing a “Thank-you for you help” or seeing someone’s bad day ease just by providing a caring, compassionate response to a person’s bad time. IMG_0150
  16. TGIF                                              img_0218.jpg

FAQs September 2016

 Why do I get pain during ovulation?

No-one is sure but one theory is that the pain is the egg breaking through the ovary wall, which releases a small amount of fluid or sometimes a small amount of blood that irritates nearby nerves.

What are the stages of Endometriosis?

Stages of Endometriosis describe how severe the Endometriosis is.

xstages-of-endometriosis
Click the diagram above for more info
From left: Stage I, Stage II, Stage III & Stage IV

I have Stage IV Endometriosis.

What is a chocolate cyst?

aka Endometrioma.

Chocolate cysts are a particular type of ovarian cyst linked to endometriosis – these are cysts in the ovaries formed by endometrial tissue (tissue similar to the lining of the uterus). forms dark fluid-filled cavities that can vary in size. The diagnosis of an endometrioma may be suspected based on ultrasound imaging of the pelvis, but the final diagnosis must be based on microscopic examination of the cyst itself.

choc-cyst
Click the diagram for more info

 Where can I contact other women with Endometriosis?

There is an online forum where you can reach out to other women with Endometriosis HERE

What pain meds do I take?

  • Tramadol (standard & prolonged release)
  • Co-Codamol 30/500mg
  • Cyclizine
  • Diclofenac
  • Oramorph

*These are the meds I have, to be taken PRN

NHS or Private medical care?

I have been under a NHS specialist when I had my 1st laparoscopy, and had a ton of hospital admissions.

My new specialist works at a private hospital but does see NHS patients, this is funded by the NHS. During my experience at this private hospital, I have felt supported, listened to, assured that my Dr has my best interests in mind. My husband has also had a surgery done privately and we were both so impressed by the standard of care he received. I appreciate the NHS but if you have the money, or have thought about getting a ‘pay-monthly’ healthcare plan – I’d say it’s definitely worth it.

What is the worst thing about my Endometriosis?

The pain is difficult to manage and I get anxiety when I know my period is due. I worry about being off sick. I worry about disappointing my family and friends by having to cancel plans or for being MIA for weeks.

I don’t care about getting surgical scars on my abdo. I don’t worry about weight gain or weight loss due to hormone treatment.

The worst thing about Endometriosis is that I have to be less than I am. I have to rely on my husband, who takes such good care of me & he’s my rock but he didn’t sign up for this when we first met.

Pain changes a person: I get scared that I’ll change for the worst & my husband will fall out of love with me.

I hate Endometriosis because it literally affects every part of my life.