'M.E. myself and I' by Anna Redshaw

In the final countdown to my surgery date I was actually surprisingly calm. This kicked in with about two weeks to go.

I was also incredibly surprised by how calm I was on the morning of my surgery. I had been ‘practising’ having my Zoladex injections without my usual fail-safes (sugar and Rescue Remedy for the win) and had learnt to rely on sipping water (I knew I was allowed to sip 100ml of water per hour before surgery) and doing breathing exercises instead (urgh do I sound like one of the Wellness Brigade for saying that?!) It paid off. My heart rate was below 70bpm the entire morning.

There was just a sense of ‘what will be will be’. The surgery being cancelled and then reinstated had made me realise that the circumstances for surgery were the best they could be. Since 2022, my M.E. had improved to be Moderate again. The small hospital was ideal. My consultant had shown how exceptional he was in advocating for me to the anaesthetist. So it was go time.

But because of the stress of cancellation, I didn’t fully allow myself to believe surgery would happen until I had seen both my consultant and anaesthetist that morning. 

Surgery Day

6am

A very early start. I had to be nil by mouth but could sip 100ml of water per hour. I had a shower (they had asked that you shower on the morning if possible), and put on comfy clothes

7:30am

Arrived at the hospital and ‘checked in’/wasadmitted. My husband came in with me. Shown to my room (as an NHS patient in a private hospital) and shown how the call buttons work. Hospital gown and paper pants straight on incase surgery got pushed up the schedule 

There was an issue with the radiator in my room and when I say it was boiling, it was boiling. We could open the window but goodness me

7:40am – 10am

• Visit from catering for lunch and dinner order
• My husband stayed with me all morning, until I went up to theatre. This seemed standard in the hospital I was in, but we had asked for him to be with me because I can be forgetful and get confused (despite coming across as ‘very together’)
• Several nurse visits for blood pressure, and a urine sample (to do a pregnancy test. This was done so discreetly and compassionately considering I was about to have my reproductive organs removed.)
• I was given anti embolism stockings and told I’d need to wear a pair for 23 hours a day for 6 weeks
• Physiotherapist visit for exercise tips and remobilising tips. We can go over this in more detail at a later date if it’d be helpful for anyone
• Visit from consultant/surgeon – found out my cervix was also to be removed (“I’m removing everything gynaecological”). This threw me a little bit. I’m pretty sure I’d asked about this back in August when we decided to remove my ovaries as well as my uterus, but there’d been no mention of my cervix being removed. I knew I would have a ‘vaginal cuff’, but also knew that prolapses were more likely post-hysterectomy if the cervix is removed. I was still happy to go ahead.
• Visit from anaesthetist – It was the anaesthetist who had cancelled my surgery, and his bedside manner left much to be desired. I didn’t feel I was in a position to talk about M.E. and anaesthesia with adrenaline because of his demeanour. He told me that if I was adamant my body could cope, and I had my husband to step in if I lost the ability to communicate, then he would use the same anaesthesia he does as standard. I’ve had local anaesthetic with adrenaline before. I was off-kilter for a few days but nothing ‘too bad’. I’d deal with whatever happened afterwards.
• Lay in bed, trying to relax my body after it’s absurdly early start, doing crosswords as distraction

10:35am

My call time but no sign of anyone. Getting nervous but keeping myself in check.

11:05

• A nurse and a healthcare assistant finally came to collect me. The delay was due to a computer glitch. Dressing gown and slippers on over my hospital gown
• Said goodbye to a very worried Mr Tree Surgeon (who then apparently paced the room and the corridors until my return)
• Short walk to lift up to theatre. Could have been wheeled but I was doing okay and it was within my own short walking distance
• I have no idea how long I sat in the bay waiting outside theatre, but it could have been up to an hour as my husband was having kittens waiting and asking for updates from the nurses
• The same questions were asked repeatedly at different stages. Name, Date of birth, allergies, what procedure I was having…
• Walked in to theatre. This was very surreal. Grateful they took my glasses off me so I couldn’t look around! Dressing gown and slippers (and my glasses) went in a clear bag to be wheeled back to my room under my bed 
• ECG pads attached
• Cannula inserted
• Consent form checked
• Oxygen mask over my face – I wasn’t asked to count down from ten, and feel I was asleep within seconds of the mask going over my face
• Catheter inserted while I was under anaesthetic 

About 1pm

• Woke up smiling in the recovery room. All I felt was relief and utter calm. I had not died. I was awake and alive and oh my goodness I have never felt relief or contentment like it. My body did it!
• I’d been concerned I’d wake up in a panic but it wasn’t like that at all. I’m sure the drugs helped a lot with this.
• Spent over an hour in recovery because I needed more morphine just as they were about to bring me back to my room. I’d been worried the pain would be overwhelming, and that it would leave me trying to writhe around. But Adenomyosis prepared me very well and the pain was not as bad as I would get before/during my period. The morphine surely helped with that.

Sometime after 2pm

• Back in my room. Smiling like a loon. Sore and drowsy. Relief. I haven’t stopped feeling relieved. Use personal insta post 
• Straight on to the essentials. Peppermint tea. Water. Salty crisps. I am not a tea drinker but I knew the importance of peppermint tea, and drank a lot of that and more water than I have ever consumed! 
• The trapped wind pain. Oh. My. Word. You’re pumped full of carbon dioxide so they have space to do what they need to do inside of you. When they’re done, not all of that carbon dioxide can be removed. If you’re facing surgery, for the love of all that is good and holy be sure to take windeze or similar like your life depends on it. (Will do a whole post of Hints and Tips, don’t worry.)
• I did feel like I was going to be sick at one point but didn’t actually throw up.
• I had the best gluten free cheese sandwich I’d ever had. And then I had a jacket potato with beans for my tea because of course I did. I am potato’s biggest fan
• My mother-in-law brought food for my husband (he’d been too worried to eat or leave the hospital)
• Mum and Dad visited at some point

Overnight stay

• While I was in theatre, my husband was told he couldn’t stay overnight, as my caregiver. This contradicted what we’d been assured by my pre-op nurse, and by the secretary we double checked with when I had my final blood tests. If you know my husband, what he was told would have had made very little difference to him. He very politely but firmly told them he would be staying with me overnight, whether he had somewhere to sleep or not. And he did just that. A recliner chair was found for him.

• Evening visit from surgeon/counsultant. The surgery had gone very well. I immediately asked if he’d found Endometriosis. I knew from all my reading that I’d be lucky not to have Endometriosis alongside Adenomyosis. But he said there was no sign of Endo; that everything had looked healthy and that samples had been sent for testing.
• My pre-op nurse had recommended I stay for two nights, rather than the standard one night. But my consultant was happy for me to go home the next day.
• They’d obviously transferred me into a bed after surgery and I was laying on the blue, itchy, transfer hammock for quite a few hours afterwards. It took three people to shuffle me around enough to get it out from underneath me
• I was on IV fluids until the early hours of the morning
• I had my first of seven anti-coagulant injections
• Nurse checks every 3 hours throughout the night. I was on liquid morphine for awhile, but then this switched to paracetamol, ibuprofen, and something I can remember the name of
• I was advised not to take tramadol if I could get by without it (I could), and it was reinforced about how opioids would make the usual post-surgery constipation worse
• I buzzed for help at some point during the night because I was burning up. The faulty radiator didn’t help
• I did get some sleep I think, but it wasn’t the best I used my noise cancelling earphones and rewatched Disney films or listened to the Sleep Stories on the Calm app

The morning after

• My catheter was removed at 6am next day. It wasn’t painful at all and I’m not convinced I felt anything.
• To check my bladder was okay, I would need to do “three good wees” and then be immediately checked with an ultrasound to see if my bladder was performing as it should. It was! I’d been very concerned I’d be one of the 1 in 12 who suffers with issues post-surgery.

• With the help of two healthcare assistants, I stood up to shuffle to the toilet.
• My blood pressure was very, very low. It did improve enough to allow me to go home but was still low

Discharge

• My discharge was a bit disjointed and messy. My consultant discharged me at 1:30pm.
• It then took over two hours to actually pin a nurse down long enough to get my cannula removed and get my prescriptions. This seems quite standard. They also didn’t collect my last urine sample for an hour and so missed the window for an accurate ultrasound scan.
• My new HRT was missed off my prescription (I knew I would switch from oral medication to patches) and I only remembered once we were home. My husband collected it the next day.
• I also had anti coagulant injections that needed to be administered each evening

I did it. It is done.

For the first 48 hours I just kept smiling and “I did it!” My friend had given me a pep talk (one of many) a few days before and reminded me that once it was done, I’d never had to do it again; the pain would end and there would be light at the end of the tunnel.

A note on pain

If you have Adenomyosis or Endometriosis I would be so bold as to say the post-operative pain, with the painkiller they give you, will be bearable. It didn’t differ too much for what I’d been living with for years.

I didn’t take any opioids after discharge, but was sent home with morphine and codeine (along with a laxative)