Category / My Endo Diary

by ChronicWriter

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

by ChronicWriter

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

by ChronicWriter

Abdominal Sacral Massage

abdo massage

Since I was diagnosed with Endometriosis, I have tried to be open minded. Most of my treatment options have involved medical intervention; medications, surgery, hormone treatment, injections, the list goes on…

But every now and then I stumble upon a treatment or a theory or something that seems so ‘out-there’, it might actually work!

I was told about Abdominal Sacral Massage by a dear friend, one who is also trying to conceive. We were discussing what else we could do to improve our chances; we are already day-counting, vitamin taking, diet-watching & sexing it up at every chance we get. After a furious google search, we finally found Abdominal Sacral Massage.

This massage technique is used for digestion, helping to ease constipation and bloating (great), to support emotional health and fertility with its’ gentle healing (double great!) and can improve your menstrual health by regulating periods and helping ease PMT (GREAT, GREAT, GREAT!).

So, on paper, this ticks all the boxes, it seemed like a fantastic idea and we couldn’t believe we’d never heard of it. Especially, since I’ve been struggling to manage my Endo symptoms for over 4 years. And as no stranger to holistic therapies, I was eager to give it a go, with complete faith that it would be a positive experience.

A week or so later, we had the appointment. As we travelled over to the, salon…spa… I was quite excited, unrealistically optimistic that this would solve all my problems and hopeful that I’d be pregnant sooner than I thought. It is set in lush countryside and it was a bright sunny day. Our therapist is a down-to-earth, put me right at ease, sort of lady. I felt relaxed already. We filled out some paperwork, letting her know what we needed help with most. Where do I start? Then got down to business, choosing essential oils. We had to choose a high, middle and low note. All 3 would target problems and work differently. I chose ylang-ylang, cedarwood & clary sage. It was a heady concoction. Now that it was time to get naked (I kid, I still had underwear on!) I started to feel nervous. What would it be like? The therapist herself said it wasn’t a treatment that she does regularly, mainly because people don’t know about it but she did gush about its many benefits.

My friend went in first and I sat for an hour, glad I had brought a book. When I read I tend to get absorbed into it and the time passed quickly. My friend soon emerged, looking relaxed, happy and tired.

My turn.

The massage bed had a heated mat and there were plenty of towels to protect my modesty. The lights were dimmed low and there was a steamy aromatherapy machine pumping out geranium flavoured mist; which happens to be my favourite essential oil and fragrance. I felt great.

The abdominal sacral massage focusses on the area between the ribs at the front to lower abdomen, between pelvis. It’s quite a deep tissue massage, I knew this but was willing to give it a go.

My stomach has been somewhat of an issue for me. Not out of vanity or how it looks or feels, the issue stems from self-preservation, fear and anxiety. I was not prepared for the emotional impact of having a stranger touch me in a place that has caused a lot of pain, trouble and anxiety. So, when she laid her hands on my abdomen, I had to fight the urge to push her away. I immediately guarded myself. This physically reaction prompted an emotional one. I started to mentally examine where this response was coming from, all the while extremely uncomfortable and willing myself to relax. Thinking about it, I clearly recognised that this automatic reaction to tense up when someone touches, or looks like they will touch, my stomach has been ingrained only in the last few years. Since my endo flares became so bad they required hospital admission or surgery. Even when my husband touches my stomach, I initially tense before relaxing. It only lasts a split second but my body is used to hurting there.

I was shocked that I was able to realise this change in me, triggered by this massage. I was glad to have this experience, if only because I got to learn a little bit more about my body.

The first part of the massage included a lot of ‘kneading-like’ action from ribs to hip bone. I was just thankful that I was a little bit more dough-y and heavier now than I normally am when I’m symptomatic. I can’t say it was relaxing, it was quite a deep massage which created some discomfort for me.

The second part of the massage focussed on my back; bra line to coccyx area. This was much nicer and I was finally able to relax. The essential oils had begun to permeate my skin and the air around me, I could take deep, soothing breaths, this part I liked.

The final part was a face, neck & head massage combined with some Reiki healing. The light pressure on my head and neck really helped ease some of my tension, some which I didn’t know I’d been holding! Reiki doesn’t suit everyone; it’s a treatment that you have to be open to in order to get the most from it. I could feel it work for me. Only a few minutes after she moved onto my face, my whole body started to tingle; from head to foot. I then went all goose-bumpy. I could feel little shocks, almost like I’d been electrified.

Over the next few days following the massage, I felt some discomfort. My stomach felt sore and tender to touch, as though it’d been through an ordeal. Nothing else much happened. I half expected my period to start, I was hoping it would trigger its reappearance following the end of my latest zoladex treatment, in January. But, there’s been nothing.

I don’t know whether I would have another treatment, maybe it is like acupuncture, it gets better after each session. Truthfully, I’m reluctant to try it again. It wasn’t painful and I may not have seen any benefits yet, but just because of my emotional discomfort throughout, I don’t think it is for me. Maybe in a few months, I will give it another chance.

After all, when it comes to searching for a way to improve my life with Endometriosis- I’ll try anything.

by ChronicWriter

Out of the frying pan?

*DING DING DING* Round Two!

As a woman, I am no stranger to doing things I don’t want to do. But as a woman with endometriosis, I am also no stranger to pain or discomfort. So when I was told I needed to have monthly hormone injections again as part of my treatment to try and get this condition under control, I should accept it easily, shouldn’t I?

No.

There is not a single part of me that wants to accept this treatment. Not a single ounce of me that is OK with it.

In April, following 2 surgeries and almost a year after we decided to start trying to conceive, my consultant told me I should go back on the zoladex injections. I was devastated. It was proving too difficult to manage the pain and the ‘trying’ part of conception was near impossible with the levels of pain I was experiencing. I was in bed every day, my GP had introduced a pain patch and periods were horrendous. And the cherry on the cake? I’d still not managed to conceive.

But I was doing all the right things; I was taking the vitamins, I had the ovulation sticks and the fertility tracker and I was even taking my temperature to monitor my cycle. Still- nothing.

Reluctantly, I agreed to go back on the menopause-inducing drug.

“What’s it like? It’s like being impaled by a javelin and expected to be grateful for it!” 

The night before the first injection I sobbed. It was so unfair. The resentment welled up inside me until it spilled out in fat, hot tears. And those tears fell in abandon that first month. I have a hard time swallowing them, even now.

It wasn’t the pain of the injection, it wasn’t even the nasty side effects or the fact that it would 100% prevent conception. My resentment lied in the treatment itself. The fact that I was given no alternative; it was either this injection or agony every day. Rock meet hard place. Neither was what I wanted. I felt like an animal, backed into a corner. Have you ever had to do something everything inside you rejected?

I’ve never felt so out-of-control of my own life, of what happens to my body. And the doctors never ask what I want! Like this was the only option and I should be happy about it.

No.

And worse, when I spoke about it, about my feelings and how much I hated this treatment, some responses was one of indifference: “Well, which would you rather have? Agony, pain and being in bed every day or an injection and a few hot flashes?”

NEITHER! Is that too much to ask?

I know from the outside it looks like a ‘done-deal’, a no-brainer. I rebel against everything about it.

Today, I have had my 4th injection of this cycle. Last time, August, I upped my dose from a 3.75 (monthly) injection to a 10.8 (3-monthly) injection. The difference? It’s a much bigger needle, but one stab lasts 3 months. I decided this would be an ‘easier’ option when I started to have panic attacks prior to the injection due dates and appointments.

I am 7 months into this cycle. I haven’t had a full night’s sleep in a long, long time, I feel exhausted; mentally and physically. The hot-flashes are enough to cause spontaneous combustion and my mood swings are enough to give me (and my husband) whiplash. I don’t even get any relief using HRT as I had to stop it after it caused chest pain and SVT.

But, I haven’t had a period in 7 months and the endo pain has abated. And I am so thankful of that.

 

 

 

 

by ChronicWriter

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!

 

 

 

by ChronicWriter

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*
by ChronicWriter

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

by ChronicWriter

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.

by ChronicWriter

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. 

by ChronicWriter

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.