"You wanna know how I got these scars?"
- baticamoomin
- 2 days ago
- 12 min read
I'm back with my latest missive from the medical trenches. Buckle up, this is going to get emotional.
When last we met I was just a few days into my post-surgery recovery. So let's rejoin our tale from there. Get a cuppa, and let us begin...
Post-op recovery and additional investigations
I expected to feel discomfort and pain while I recovered from the surgery but I don't think I appreciated how exhausting it was going to be, especially as I had had two laparoscopies before, but at least I knew it was part and parcel of the recovery process so I knew I just had to suck it up for a while.
I received a copy of the post-op summary letter that my surgeon had sent to my GP. In it he mentioned that during the surgery he saw evidence of adhesions (scar tissue) from previous extensive endometriosis surgery and he saw that the central portion of my small bowel appeared a little dilated. He wanted to discuss sending me for a CT scan during my post-op appointment.
A few days after my surgery, I was having some dinner when I got that horrible colicky pain again. The exact same pain I had been suffering with when I had my gallbladder. This completely blindsided me so I spoke to a nurse at the hospital over the phone and she said it wasn't unusual to still get that pain while I recovered and to avoid fatty foods and big meals for a while.
That's what I did and I had a couple of weeks where I felt like I was heading in the right direction. I was feeling sick quite frequently, but it wasn't major and I understood that my digestive system would need some time to adjust to not having the gallbladder to deal with the bile any more. I wasn't overly concerned about that and knew it would eventually settle.
As a Christmas present my husband had bought us tickets to see The Woman in Black at the theatre. I was still not feeling great but I at least felt well enough to go. It would have been a shame to miss it. I think it was good for my mental health to wear a nice dress and some make-up as well.
We had a nice time but I did feel exhausted by the time we got home.
After about a week on from the surgery, I then had the delightful stitches itching from my incision sites. I knew it meant that my recovery was progressing normally and my body was busy knitting itself back together, but it did drive me a little bit crazy.
After a couple of weeks being signed off work, I got back online. My work have been very understanding and supportive and they let me work reduced hours for a couple of weeks which helped to gently ease me back into things.
My post-op appointment with the surgeon was very quick and quite straightforward. He said that my gallbladder was definitely ready to come out and he wanted to go ahead with sending me for a CT scan based on the adhesions he had found. He wanted to see if they were causing any "holdup" leading to bowel transit issues. I had told him that I had experienced a colicky pain episode a few days after surgery and he thought that would line up with symptoms of holdup.
Under pressure
Just when I started to think I was out of the woods with the severe colicky pain; with a couple of weeks no pain attacks after eating, just feeling a little full or sick, I had an absolutely awful week.
It started on a Monday, because of course it did. I had a sandwich and the pain immediately started and lasted a couple of hours. It was so intense that it made me throw up. It was so demoralising because I really thought I was going to be on the other side of it by this point.
The next evening my husband and I went out to a concert. I was having a really nice time, until I really wasn't.
It was about halfway through the gig. We were sat up in the balcony. We like it up there and had plenty of space. I went from clapping along to the music to feeling suddenly very dizzy. My vision was narrowing and I felt like I was falling even though I was sat down.
My husband apparently looked over at me and saw that my hands were shaking. I remember him asking if we needed to step out and then I did momentarily pass out because the next thing I knew I was on my feet. He was carrying all our stuff and the gent I had been sat next to was literally holding me up.
I was seen by some lovely medics who opened a door to let some fresh air through, gave me lots of water and checked my blood pressure and temperature. I was still feeling faint and very clammy. One of the medics thinks I might have experienced a sudden drop in blood pressure, called Vasovagal Syncope. Apparently it can be brought on by stress or prolonged periods of pain, so I put it down to not long having had surgery and the particularly bad pain attack the day before.
We eventually had to come home.
I felt so embarrassed about passing out in public and really disappointed that yet another event that I had been looking forward to and enjoying was tainted by my medical fuckery.
Don't worry, you're not wetting yourself
My CT scan was the next morning. I was still feeling groggy and fragile from the evening before, but the search for answers needed to continue so off I went.
It was all very efficient and straightforward. I was probably only in the actual machine for about 5-10 minutes. I am very glad that the technician forewarned me about the sensation of the dye being injected. He said I would feel very warm for a few seconds and that as the sensation travelled down by body it would feel like I was peeing on myself but that it was normal and I wouldn't actually be doing so. Very glad I didn't accept that challenge!
I got home and was then violently sick. I think it was a combination of still being unwell from the night before and also a response to the contrast dye. The thing is, my stomach was empty as I had to fast for the scan so it sounded like I was trying to vomit up my soul.
I went for a lie down and I think everything just got on top of me and I laid in bed and sobbed. Keeping myself honest, I did have a very brief moment of thinking that I didn't want to be alive anymore, but it was very brief.
The next day we were supposed to go to the cinema but I just wasn't feeling well enough so of course I started feeling upset about yet another plan being sacrificed on the altar of medical fuckery. Then while I was starting to eat my dinner the colicky pain started. I was not coping at that point. No reserves. No mental resilience. Nothing. That pain attack was the last straw to an already awful week's camel's back.
I collapsed into my husband's arms and cried and cried. He wasn't able to make any sense out of my wailing but the important thing is that he held onto me and let me just cry it all out.
I had some very honest conversations with management at work. They really seemed to appreciate how devastating it was that I was still experiencing so much pain after having an operation that was supposed to have fixed it. I remember in the lead up to my op I was so excited at the prospect of being free of that awful pain. All my reading and conversations with people who had also had gallstones and had their gallbladders removed told me how much better I would feel. The fact the pain not only didn't go away but increased in frequency was such a blow.
Thankfully, I soon received a call from my surgeon's secretary to let me know my CT scan results were in and I was booked in for the following week to meet with him.
Waxing poetic about my lovely GP
In the interim, I decided to make an appointment to speak to my lovely GP about my continued pain post surgery and how I wasn't coping mentally with it all. My appointment ended up lasting 25 minutes. She was so lovely and supportive which is why she is my favourite and I will hold out for an appointment with her.
I told her everything that had been going on since surgery, particularly that last week with the pain attacks and the vasovagal syncope.
She said that when I saw the surgeon the following week to discuss my CT scan results, to ask about the possibility of retained gallstones as they might not show up on a scan and there might still be some stuck in the biliary tract. To be fair to the surgeon, at the time that I last saw him, I had only had one attack which was only a few days after surgery. I had a good couple of weeks of being lulled into a false sense of security with no pain attacks. It was only that week of doom that they happened again in earnest and I'm so glad he saw enough during surgery to want to do further investigations.
Lovely GP also suggested that I ask about medication to help with replacing bile salts to settle my digestive system.
She's such a good listener and she was so empathetic by saying that the way I was feeling was understandable and not an overreaction. So validating. She gently reminded me that I was still healing, that it's not a small thing to have an organ removed, and that they'll have had to move things around in there to get to the organ they needed to remove.
In terms of the vasovagal syncope she said she wanted to reassure me that this wasn't necessarily going to be part of my normal. That it made sense that my recent surgery and pain could have brought it on, and to try not to worry about it as it might have been an isolated incident. If it happened again/became frequent then to get back in touch and it would be looked into it again in case there was an underlying cause that needed to be investigated.
The worst ta-da! ever
A few days ago I got my CT scan results. I have more procedures and surgery in my future.
Yeah, it's not retained gallstones. WHAT?! Then what is it, I hear you cry! Well, because of me being me, it isn't just one thing, and it definitely isn't what I went in expecting it to be. Of course it wasn't going to be something as simple and completely logical as retained gallstones. Oh no.
As I sat down, the surgeon wanted to reassure me that it wasn't anything like cancer, but that the scan showed a couple of things that we needed to have a discussion about. He brought up the scan on his computer screen and started explaining what I was looking at. He opened with saying something that delighted by horror fan mind; so this is what you look like cut in half.
Seeing the actual scan was really quite fascinating. In retrospect anyway, at the time I was just trying to absorb it all and failing. Science is amazing.
The first thing he drew my attention to was my kidneys. My right kidney was where it should be and looking well behaved and kidney-like. Then he showed my left kidney, which even to my eyes looked like a bloody mess and distinctly un-kidney-like.
The official diagnosis is Pelvic ureteric obstruction of left kidney (same kidney that showed a harmless cyst in my ultrasound a few months ago). I'm going to be referred to a urologist. He said if we didn't do something about it I could lose function of that kidney. He started talking about my previous endometriosis surgeries as a possible cause of the obstruction or that I might have a kidney stone.
I have a lovely friend who is a medical professional and she helped me out with what this all means. She sent me useful links and a suggested plan that the urologist might go down which would be a stent to clear the obstruction.
The next thing the surgeon showed me was some of my other organs. He pointed out my liver and spleen and then startled circling an empty space with his computer pointer. Apparently that empty space was where my stomach should be but it was, er...missing?
Yeah, it's in my chest, and not even just a little bit. The entirety of my stomach is in my chest. He described this as a massive hiatus hernia with volvulus (twisting) of stomach into chest. Worst reveal ever.
He's sending me for an endoscopy; a camera down the throat so he can assess the hernia in more detail and then more surgery, hopefully laparoscopic but possibility of open.
I asked the surgeon about how I can mitigate the pain as I'm still terrified to eat but he basically said to do what I've been doing which is small and soft meals so there's less chance of food getting "stuck". He also said because of the proximity to other organs, if I get any chest pain I need to go immediately to Queen Elizabeth hospital. He was very specific about that so they must have specialists there or something to deal with that kind of emergency.
I got into the taxi and cried. I'm okay, it was just a lot to take in so my body decided we were going to cry about it.
Processing and further tales in my love for my GP
I got an appointment with my lovely GP the next day to discuss. It had all been a lot to take in the evening before and after having some time overnight to process, I had some questions.
She's so patient, calming and validating. She said it was completely understandable that I would be feeling overwhelmed considering that I went in about one organ and came out with problems to two different organs.
One of the questions I had was if my recent vasovagal syncope episode could have been linked to the hernia. She said that was absolutely possible. My chest cavity is supposed to house my heart and lungs and esophagus and now it also has my stomach which will be squeezing them.
She also mentioned that it can cause coughing which I have also been doing a lot more. It makes me feel a little better to think that these are all things I can link to an identified problem rather than my usual, eh, your lady parts hate you, innit?
I do feel exhausted just at the thought of all the doctoring I have in my near future and it is overwhelming to be having all these things going on at the same time, but at least I feel heard. Seriously though, what are the odds of having gallstones bad enough to require the removal of my gallbladder, a serious enough problem with one of my kidneys, and the whole of my actual stomach deciding to ghost and make like an alien in my chest cavity?!
I have received a copy of the surgeon's email to the urologist which I have sent on to the insurance company to get authorisation, so the first steps have been taken to get my kidney fixed.
I assume that will be what is addressed first which the GP agreed with and she said she would prefer that gets sorted out first anyway to avoid any scarring to it. If it does go the route of needing a stent the procedure sounds relatively straightforward and I would be in and out of hospital same day. The endoscopy will also be quite quick but I will looking at a longer recovery period for the surgery to fix the hernia.
We're going to pause my gynae referral until all this other stuff is sorted out because frankly I'm already exhausted and overwhelmed enough without starting a whole new gynae journey with a new consultant. I just don't have the physical or mental bandwidth for it. She said that was absolutely fine and she will do me a new referral once things are more settled.
The fuckery, in summary
I am very grateful for all the kindness and support I have received from the medical professionals looking after me; my family and friends. Every kind comment and show of solidarity has really meant so much and it does feel good to know that people will come out to support me in these difficult moments.
My lovely GP (did I mention she was lovely) has been amazing at talking me through all this; my friend J., who held my hand through medical speak and also said some absolutely amazing supportive things about how much my body had been through and how proud she was of me; to every single person that has commented on my Facebook or sent me messages of support and comfort. Thank you!
My epic husband who has held me, body and soul, and made me laugh (he groped my boobs and said he was "rubbing my tummy better", much hilarity ensued). I've cried on him, vomited my anxiety spirals on him, and impacted on our fun plans. He has stuck with me and kept me going.
One of the biggest boons for my mental health since receiving all this new knowledge is being able to link some things together. It's felt like finding some missing pieces to a puzzle. The fact my surgeon has been so great about seeing the evidence around my endometriosis symptoms and surgeries and has been taking some positive action, it's really helped me so much. It's so easy when you have been dealing with something like endometriosis for so many years that doesn't get nearly enough attention or research because of medical and systemic misogyny. It's awful to feel dismissed and be left feeling like you're going crazy. That there is clear evidence, even if it was a result of looking at something else, is so - using that word again - validating.
In a way, after the initial shock and overwhelm, it's actually giving me a bit more hope. I've received some very definitive answers when I have been so used to just vagueness and shrugs and medication.
I've got actual steps to deal with these new things on the horizon. I can build up my resilience again because there are actual plans to help me. Then I can get back on my wibbly wobbly gynae journey.
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