Lake Mungo

baticamoomin
Apr 27
10 min read

Updated: May 25

"I feel like something bad is going to happen to me. I feel like something bad has happened. It hasn't reached me yet but it's on its way"

This post is probably going to be a bit up and down, like my hormones because perimenopause is so. much. fun.

A lot of hospital-ing has happened since I last posted over a month ago. Actually, the same day that I made my last post I had one of the worst pain attacks. The pain was so intense and prolonged that I repeatedly had to go to the bathroom to throw up. Obviously once I had received the CT scan results and had some time to process everything, I was really keen to move onto the next steps.

I knew at that point that at least one surgery was going to be required, in relation to the hiatal hernia so I informed my team's management and various people I support outside of our team so they had plenty of a heads up that I was going to be on medical leave again at some point in the not too distant future. I'm not sure if I should have felt validated or concerned at how many people sounded horrified about what was going on with my innards. It's still so bizarre to me that something like this could be going on in my body for who knows how long and I had no idea.

Checking for kidney dysfunction, part the first

Shortly after I had the appointment with the surgeon with my CT scan results, he referred me to a urologist to discuss the obstruction to my left kidney. My appointment with his was at a different hospital but about the same distance away so didn't put me to any extra trouble. It was a very posh hospital. The reception area made me feel like I needed to make a reservation at a swanky hotel.

The urologist was nice and explained everything in a way that was easy for me to understand. He said that the issue with my kidney could be congenital. He wanted to send me for a renal scan to check my kidney function and if it's draining correctly, he would be inclined to leave it as it is as I might have been living with this since birth with no issue.

However, if the scan was to show that it isn't draining correctly, I would need a procedure called a pyeloplasty so I don't lose function to that kidney. It is a laparoscopic procedure to remove the blockage or narrowing at the junction where the kidney meets the ureter. It basically means cutting out the blockage and then joining the ends.

Camera in my innards

The following week I was admitted to hospital at the arse crack of dawn for my Oesophago-Gastric-Duodenoscopy (OGD). This is a procedure carried out under sedation and they send a camera down the throat to examine the stomach. The surgeon wanted to get a closer look at the hiatal hernia before going ahead with the surgical repair.

I was nervous for the procedure but I was thankfully seen quite early and the propofol sedation sent me completely to sleep so I wasn't aware of it at all. Apparently the procedure itself only took about 10 minutes and I was on a recovery ward for about 15 minutes to wake up. I thought I might feel a bit woozy from the sedation but I woke up feeling completely alert and no nausea so that was a nice surprise. I was wheeled back to my room where my husband was waiting for me. My nurse came by a few times to check my blood pressure etc., and I was given a sandwich to eat. The nursing team had been told that the surgeon would be coming by to see me.

I couldn't be discharged until I had been able to pass urine so I drank a few cups of tea and some apple juice because I was feeling fine and was keen to be at home. I went to the toilet and got dressed and I think my nurse was a bit surprised by how quickly I went from saying I was ready to go to the toilet to being dressed and ready to go!

She came by a few times to say they hadn't been able to get a hold of the surgeon as he was doing other surgeries so in the end she said it wasn't fair for me to sat waiting around when I should be at home so she sorted out my discharge paperwork and she said she would tell the surgeon to call me if he needed to speak to me. That was very kind and we were soon on our way home. There were no side effects from the side effects, except for a mean headache the next morning, but tea and painkillers soon sorted that out.

The other hospital called me while I was in the middle of eating my sandwich to arrange the appointment for my renal scan which was set for the following week, so everything felt like it was happening very quickly.

Knives out

Unfortunately, it seems like Henning is always waiting in the wings to flare up when I'm already feeling rundown and vulnerable. This particular flare-up felt almost as bad as when I had to go to A&E last year, but that turned out to be a pointless exercise so I gritted my teeth, loaded up on Tramadol, Amitriptyline, and a heat pack.

It felt like the left side of my pelvis/abdomen had vibrating blisters rubbing against each other whilst cramping. Eventually, I got to sleep but not because the pain eased; my body basically shutdown from drugs and exhaustion. That's the thing with chronic pain. You don't medicate to get into a "no pain" state. If anything, it just makes you dopey and numb enough to care a bit less. Turns out that the act of being in a sustained amount of intense pain is draining. Who knew?

The next morning the worst of the flare-up had receded to a dull roar and the feeling of an opiate hangover and a kind of tired rage. It felt at that point like I was constantly stepping on eggshells around myself. What was going to be set off next? Since the Henning flare-up had been so bad I went to bed without having any dinner because the thought of food made me feel sick and I didn't want to add a colicy pain attack to my woes. Eating soft foods isn't a guarantee to not set one off, but apparently unintentional fasting is also a thing and I had a pain attack after eating dinner and that exhausted and depressed me so much that I went to bed early again.

Checking for kidney dysfunction, part the second

It was in this mindframe that I toddled off for my renal scan. The technical name for it is a MAG3 Renogram. It involves an injection of contrast dye, similar to a CT scan. I was nervous because it was another new procedure (I preferred it when the main thing I collected was books) and I was dry heaving from the contrast dye last time.

It went mostly fine though. I was at the hospital a bit longer than I expected since I seem to have very uncooperative veins. It took two nurses nearly half an hour to get the needle in for the cannula so I consequently got punctured multiple times in both arms. The scan itself was pretty straightforward. I had to drink several cups of water prior to the procedure and I was then injected with a diaretic to make me go to the toilet just before the procedure started. Then I just needed to lie still in the scanning machine for about 20 minutes. Halfway through they told me to go to the toilet again and then back in the machine for the remaining time.

The screen was within my eye line and I could see pixelated images of what I assumed were my kidneys. One looked kidney shaped and the other just looked liked a shapeless form of random dots. Obviously, I don't really know what I was looking at so I would need to wait for the urologist to call me with the results.

Shortly after getting home I received a copy of the letter my surgeon sent to my GP summarising my OGD. He said the hiatal hernia was complex as expected and was a paraoesophageal hernia. There are two types of hiatal hernia; sliding or paraoesophageal. Sliding means the junction between the oesophagus and stomach slides in and out of the chest, or the type that I have where the stomach pushes up next to the oesophagus. It also revealed that part of my duodenum was also within the hiatus but during the OGD he inflated my stomach with air which moved it back down. I was booked in for an appointment with him in clinic for a couple of weeks later to discuss the surgical repair.

The following week saw a very busy weekend in terms of socialness. One the Friday I went to see Tori Amos for the first time. I had a good time but unfortunately Henning decided to get the hot knives out shortly before leaving for the concert. I mashed Tramadol and paracetamol which got me through but it was a constant stabbing presence. Thankfully, the next day it had eased off so I could enjoy going to see Six at the theatre and then Lucy Darling the following night.

Since I'm starting to understand my body's hissy fits, I had booked off the Monday and Tuesday for recovery and I'm really glad that I did because I completely crashed when I got home on the Sunday night and didn't emerge from the depths until lunchtime the next day.

Toupet or not toupet

I'm glad that I had a follow up appointment with the surgery to discuss the results of the OGD and what was planned next. He said that the hernia was quite complex to navigate around but it was massive as expected. The next step is the surgical repair which is called, and I'm not joking, Toupet Fundoplication. This involves pulling my stomach back down out of my chest and then essentially wrapping the top of it around my oesophagus. He will also tighten the opening to my diaphragm and support it with a biological mesh. Two things to note: despite the "fun" in fundoplication, it doesn't sound like a great time, however the "toupet" does give me cause to giggle because it basically sounds like my diaphragm is getting a wig!

He is confident the procedure can be done via laparoscopic surgery but there's a small percentage chance that it would need to be converted to open surgery. Laparoscopic means an overnight stay in hospital, whereas open might be three or four.

He asked if I had heard anything since my renal scan, which I hadn't. I said I was planning to reach out to the urologist's secretary but he said he would follow up for me. I told him that depending on the results of the scan, I might need to have a pyeloplasty but he said if that's the case he will discuss with the urologist about the logistics of getting both procedures done.

It does all sound a bit scary but I was happy to be in possession of more information and knowing what the plan was.

The Saturday of that same week I had been looking forward to another trip to the theatre, but a couple of hours before I was due to leave, the colicy pain started. I was all dressed up and ready to go but it just wasn't easing off. All I could was sit down and rock backwards and forwards for hours. It's obviously really not fun when the pain is that bad but it's extra salt in the wounds when I'm missing out on fun times with people.

It happened again a couple of days later, and then a couple of days after that with vomiting, although at least it eased off quicker that time. It's really hard when the pain is as frequent and intense as it has been these last few weeks because it just feels like my body is trolling me at this point, and every time it happens there is the anxiety of the very real possibility that my stomach might twist to the extent of strangulation and loss of blood supply. Lately, Henning has been reliably paying me a visit within a day or so after these attacks, which is just wonderful.

It's difficult to maintain positivity when you don't get many days where the lake is calm.

My surgery for the toupet fundoplication (sorry, just cannot take that seriously) is provisionally booked in for 22 May. I still haven't heard anything about my renal scan results. I've also chased the urologist's secretary and the surgeon's secretary said to let her know if I hear anything that might impact on having the surgery on that date. She said she would also speak to him as I mentioned that he had told me he would follow up with the urology team on my behalf. I don't want to be impatient but it will be a month this week since I had the scan and I would just really like to know if I have another surgery in my near future and how it will all work.

I am so ready to not be in so much pain so frequently. I already struggled enough with the gynae stuff but this on top has felt like relentless misery for so long and it has messed up so many plans. It's horrible to feel left behind because your body takes you out.

Going postal with perimenopause

Whilst I have been trying just to get through all of the pain trolling, my body has also been trying to deal with the day to day fuckery of perimenopause. You would think, after going through this since at least 2018 and being on HRT ever since, that it would start giving me a break or I had somehow become more zen about it. That's a whole barrel of fuck no.

It's almost like spooky things are just lying in wait around every corner.

Tell me how I can be brain fogged and exhausted and also boiling with rage in the same minute? Why do my legs itch to the point I'm scratching them raw in the night? I can't remember the last time I slept through the night. I can smell things like weed when my husband can't. We were sat in the garden the other day and the movement sensor we have out there sets of a high pitched sound to deter cats using our pretty gravel as a litter tray. Apparently it's supposed to be at a pitch beyond human hearing. Last year I could see it flickering to indicate that it was working, but now I can hear it and it itched my brain like nobody's business.

AND WHY IS MY VAG SUDDENLY HOOVERING UP AND SHREDDING TOILET PAPER LIKE A HUNGRY, HUNGRY HIPPO?!?!

Return to sender. Absolutely no unsolicited calls. Do not pass Go. Fuck all the way off.