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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LOL S1 Ep2

I apologise in advance if this is too honest/too gross/too cringey for your delicate eyes.

This is the 2nd episode in my LOL stories – I hope it lightens your day.

Read, laugh and try not to judge me too much.

I am 3 days post-op. I am on my period and grumpy. I have the stomach of a heavily pregnant lady; only it’s not a baby, it’s just swelling. I’m feeling grotty and I’m in pain.

 

On this morning, my husband is up for work. It’s 6am and he’s passed me my hot water bottle and pulled the covers back over me. He’s downstairs somewhere, sleepy and drinking tea.

And suddenly, I’m awake. I’m running to the bathroom with awful stomach cramps. I sit on the toilet and grimace as I get rid of everything (including my spleen and a lung). I’m hurting and a little bit overwhelmed. I’m sitting with my head in my hands, feeling awful and cursed.

As if I need this right now?!

And that’s how I’m sat as I hear my husband climb the stairs and walk down the hallway. He knocks and with concern in his voice, he says: “Are you okay, bab-?”

Only I cut him off and scream at the closed door “DON’T COME IN HERE!!! DON’T COME IN!”

Jesus, I can’t let him in here. After all the other shit he’s had to deal with and all the talk about periods and babies he’s had to listen to and all my crazy mood swings he’s had to accept whilst trying this contraceptive or that hormone injection. I just couldn’t let him in.

Like the loving husband that he is, he opened the door just a crack; just wide enough to see me sat on the loo with my jama’s around my ankles, head in my hands, taking deep breaths as I fought to hold back sobs. He quietly closed the door and waited until I was done before going to work- tucking me back into bad and kissing my forehead before he left.

Don’t worry- this “aww!” moment was not lost on me. No matter how much pain I’m in or how much crap (in this case, literally) I have to deal with, I am still so grateful to have him. I appreciate him and how much he looks after me when I’m poorly.

 

Anyway…

So I had a horrendous toilet experience, luckily I wasn’t having to travel to the hospital and had the luxury of locking myself away in my own bathroom.

And before you ask- no this is not the end of the story. If you can believe it- it gets worse.

After hiding in bed for a few more hours, I pull myself together and head for a shower. Everything pretty normal so far. Only- I felt something, not quite right, down there. I thought: Well I’ve got Endo on my bowel, it’s probably pretty pissed off after being traumatised this morning. And shrugged it off.

I felt lots better after a shower. I got dressed (at this point, by ‘dressed’ I mean put on clean loungewear/jammies) and decided to make a brew. And still I knew something wasn’t right. Something was new, different. Whilst the kettle boiled I headed to the bathroom to investigate.

I had what seemed like a growth/lump/parasite on my bum. Well this is new.

There was a small voice in the back of mind telling me I knew exactly what it was. I slapped it around the face to shut it up. Can I get a break- PLEASE?!  No, I can’t have haemorrhoids; not on top of everything else I have to deal with right now. My body hates me.

 But how could I be sure? My curiosity got the better of me.

Continue reading “LOL S1 Ep2”

Thank you Anna Smith

For women with Endometriosis, living life as normally as possible is a struggle. With chronic pain so severe and heavy irregular periods, it is easy for life to get us down.

After I’ve had a sucky time and I am over the initial trauma of an appointment, diagnosis, surgery- I try to find something about it to laugh at. I know I shouldn’t, illness is serious but I regularly use this as a coping mechanism and make light of my illness.

Humour can be as uplifting as opioids if you use it properly.

And so, this is the first of many LOL moments, coming up on my blog. Be assured- I will spare no details, no matter how embarrassing, and hope to hell you don’t judge me. Enjoy

 

Last week, on a grey morning, I woke up with a sad feeling. I was grumpy and just couldn’t brush it off. There’s no point in dressing this up as something else. I was mardy and tired and feeling sorry for myself. So I tried my cure-all, feel better Go-To’s:

  • I had a cup of tea and dunker biscuits in bed- No
  • I watched the original Ghostbusters film (Bill Murray is a sure way to make me smile)- Nope
  • I had a scolding hot bath with a Lush bath bomb, I soaked until I was pruney & short of breath from the steam- Nothing

With a determination I’d not seen in weeks, I got out of the bath and dressed quickly. Trying to put socks on and hold my phone to my ear is not easy and, being clumsy like I am, I stumbled more than once as I waited for my mum to answer her phone.

“Mum, it’s me – Yeah, no, I’m fine – I need you to come get me – Soon, like 10 minutes? – We’re going to town, to King’s – I need to buy a bag.”

As you can see, this needed action. This mood had to do one. And in order for that to happen, I needed a handbag. Needless to say, my mum (being the treasure that she is) dropped everything.

Me and mum went to a local boutique-with-café in my town and I immediately headed for the bag section. Usually, it is chocka with homeware and ornaments- things that I’d break just looking at them. But at this time, the owners were making way for their Christmas stock. That in itself is exciting! It’s like a frigging grotto in their every Christmas, soon be time to put my tree up! This lightened my mood considerably and I’d not set my sights on a single bag yet.

I found one. She’s an Anna Smith tote. I carried her around the shop like a small baby while I browsed. I held her in my lap as I waited for coffee. I paid £42 for her and that is money-well-spent as far as I’m concerned!
There is nothing more satisfying for a bag-lover, than transferring your things out of your old bag and into a new one. Filling all the pockets with my stuff, forgetting that in a month everything will be dumped in and I’ll have to wade through a pile of old receipts and wrappers and leaflets.

Girls, I needed this bag. Not only to make me feel better, but since I now have to take a ton of stuff with me everywhere I go- I need a bigger, hardier bag. Obviously I have all the usual suspects: purse, keys, glasses, pen, notebook, diary, gum, perfume/deodorant. But now that I have the reproductive system with a mind of its own I also have to carry: about 3000 pads, a heat pad, spare knickers, and a small pouch of pain meds (which I’m sure would get me arrested if I was searched by police!)

I can fit all of my baggage into this tote bag. Just call me Mary Poppins.

It can be hard being a girl. But it’s a nightmare being a girl with Endometriosis.

So we deserve handbags. Thank you Anna Smith.

 

Post-op Realness (graphic!)

On 20th September, I had my second laparoscopy.

Since my operation, I haven’t cried. I have tried to be strong, if I lose it- even for a minute, I may never pull my shit back together again. In the past when I’ve cried, like a sneeze, the people around me cry too. This makes me feel guilty. Guilty for making them sad, guilty for making them despair along with me, guilty because there are people in the world in a worst situation than me.

I was re-diagnosed. This time with Stage IV Endometriosis. My entire abdominal cavity was covered in cysts; on my ovaries, uterus, ureter, appendix, bowel, abdominal wall, diaphragm, a lot of Endometriosis, everywhere. I have seen the photographs my Dr took during my surgery. I have seen the physical damage this illness has caused. Now I’m dealing with the emotional damage.

 

Every day since my surgery, I have woken up in pain. At 6:30am, my husband, who has been a never-shaking source of support and strength, fills my hot water bottle and slides it under the covers while I sleep, and then leaves for work. He has been there every step of the way, and although he cannot take the pain away, he has shouldered this burden with me. He’s been there: when I’ve woken him up in the middle of the night, moaning in my sleep as I struggle with pain, he has waited alone in a hospital room- waiting for me to come out of recovery, ever being the calm in the eye of the storm. As I start to panic and become overwhelmed- I look to my husband, hold his gaze and I’m able to breathe again: “We’ve got this.”

Continue reading “Post-op Realness (graphic!)”

How do I prepare for surgery?

So I’m booked in for some surgery later on this month. This will be my second laparoscopy in 2 years.

The first I had done at Kings Mill hospital, my gynae found severe endometriosis when he did the surgery, he had to free up my ovaries as they had adhered to my pelvis, and free the lesions in the abdomen cavity. I had 4 little cuts, like plots on a map, all with dissolvable stitches in. I remember coming round from the general anaesthetic, and the first thing I felt was pain, like someone was holding my ovaries in their fist. I was given pain relief, post-op advice and my husband was allowed to take me home.

I hurt for about a week, falling in and out of tramadol-induced sleep, not really eating and feeling very sorry for myself. I’d told myself this surgery would cure me. Unfortunately, my Endosisters and I know that this is not the case. There will be no easy fix, no cure.

me-n-harl

A few months later, after trying different contraception treatments and seeing little improvement, I moved to a different GP surgery. I’d been told that this new GP worked at a women’s ward in Sheffield & specialised in gynae problems. Result. The Doc referred me straight to a fertility specialist at BMI Thornbury Hospital, in Sheffield.

Things were looking  up. I had received more help in 2 GP appointments than I’d had in 9 m0nths of hospital admissions.

After a  6-month course of zoladex injections; it was time to start trying for a baby. I stopped the injections and a little over a month later, my period was back. And she brought the pain with her.

It took 2 cycles before my pain was beyond self-management. I went to the hospital and had an ultrasound scan, only to find that I had a substantial endometrioma (or cyst) attached to both ovaries. Once again, I headed back to the consultant, who was on the ball and scheduled the surgery.

Now we’re all on the same page…

Before surgery there are a few things I like to do or items I buy that make recovery a little easier. This is how I prepare for surgery:

Do a grocery shop a couple of days before the day of the operation. Make sure to get foods that you know you like (these may not necessarily be healthy). Easy to prepare meals are also a good idea. I always get a few cartons of good soup & some crusty bread. This is a good way to get nutrients in. I always get smiley faces and chicken nuggets or dippers for the freezer- I know I have the diet of a toddler, but I don’t care. Get spreads or sandwich fillers for a quick bite. I get jam and peanut butter. Another of my essentials is sweet potatoes. Roast it in the oven, cut the skin off, fork through & it’s a beaut mash. Get some bottles of water, flavoured or sparkling. Bottles you can keep in the fridge or have next to the bed – keep hydrated. Oh! and you can have treats – you’ve just had invasive surgery.  If you want a whole packet of biscuits with your cuppa’ tea – you can! Buy treats.

Whilst you’re at the supermarket, stock up on essentials like Paracetamol, Ibuprofen, senna & Tampax/pads etc. A lot of the pain meds cause constipation and trust me, that’s the last thing you need when you’ve got holes in your stomach. Make sure you have plenty of provisions, but don’t worry ‘cos if you’ve got a hubs like mine, he’ll be more than happy to do a McDonald’s run.

Try to do all your laundry so it doesn’t pile up too bad when you’re in recovery. Also wash your bedding. Put a fresh set on the bed the morning of or night before your surgery. Nothing beats getting into fresh bedding. SNUG!

Also make sure you get a few books or magazines. I usually have a pile of books that are on my ‘To-Be-Read’ list. Get some bath bombs – you won’t be able to use these until your wounds have completely healed, so when they have you’ll be ready. Get cleansing face wipes/gentle face mask as medications always cause break outs for me. I always make sure I’ve got a few heat pads, just in case, this way you can avoid a scalding with a hot water bottle. Grab a couple of extra pillows too! You’re going to be uncomfortable. Make a nest.

If you’re anything like me, your Dr knows you well and is up to date with your situation. It might be an idea to book an appointment or call in the week before to order any regular prescriptions for pain relief so you have it all ready at home for when you’re discharged. Some times the hospital send you home with only enough for 2 doses. Be realistic with your medication & honest about how bad your pain is.

The week before, spend some time thinking about the surgery, what impact this will have on your body, try and relax. DON’T look up the procedure on the internet. DON’T watch videos of laparoscopy on YouTube. Do things you enjoy, have some ‘me-time’. Maybe visit family or friends, as it could be a week before you’re up for leaving the house. If you’re nervous or have any concerns DON’T bottle it up, talk things through with someone, or call the hospital for reassurance.

The day before surgery, shave everywhere you normally shave. This includes tweezing anything that needs to be tweezed. You could obviously do this the morning of, but my skin tends to be a bit sore/dry after shaving and I don’t want to be any more uncomfortable than I have to be. Also remove all your nail varnish -it’s a big no-no for the op.

Night before, pack a small holdall with essentials. Even if the hospital says it’s a day-case surgery and you’re planning on coming home, still take this bag. You don’t want to have to wear a hospital gown if you’re forced to stay overnight. I’ll be writing another post about what I take with me.

Make sure you’re aware what time you have to stop food and drink intake – this should be on a letter from your surgeon. If you’re not sure, call your specialist well in advance to check. This is important! If you eat past a certain time, you’ll not be allowed to have the surgery.

On the day, wear comfortable clothes, and RELAX.

Please look out for my “What do I pack for surgery?” post.

A xo

 

 

recuperating

I am currently in no mans land. Not working, not playing.

I was ordered to take it slow after being rushed to A&E following an episode of Supra-Ventricular-Tachycardia. I can’t really remember it very well but I’ve been told that my heart rate was 210-230 for over an hour…not good.

I have got to say that the paramedics and the hospital team were amazing at Kings Mill Hospital at Mansfield. They really looked after me and now I’m on the road to recovery. I’m awaiting an appointment with a specialist consultant, to find out what made my heart race so fast…(Gerard Butler? Sh! NO!) My appointment is on Christmas Eve. So we’ll know more then.

Maybe that’s the results of living in overdrive for 6 months

Here’s hoping…

A xo