This post has been sitting in my drafts for two weeks now. I’m still not sure if I should really be posting it. Normally I wouldn’t write about my medical history on the internet. But I think I’m going to post it anyway. Partly because I want to keep a record of what happened but mostly in hope that it would provide a little help for anyone who is in the same situation I was in. I should probably also add that this is a very long post so you may want to grab a cup of tea before beginning.
While not fatal being diagnosed with a cyst is quite a scary thing to go through. There is very little information on the internet about what would happen in the hospital and at various appointments. And the discussions at most of the forums I found revolved around how much pain these ladies were in and how big their cysts were. This I found very disheartening. I remember reading accounts of ladies who woke up from surgery “writhing in pain” I literally found myself crying while reading these. Would I be in that much pain? As such I have tried to avoid describing exactly how much pain I was in at various points. Mostly because pain in itself is very hard to quantify and what is mildly sore for one person could be excruciating for another.
17th September 2013. Approximately 8am
I had been staying with my Gran for college. It was a Tuesday which meant it was my day off. I woke up with stomach pains. Not normal cramps. These pains were different and quite difficult to describe. Lying on my back didn’t make them any better. Lying on my side didn’t make them any better. Even sitting up didn’t help. And moving was making it worse. Something wasn’t right.
I decided to take some paracetamol. Usually I try to avoid taking painkillers. Mostly because I’m not good at swallowing pills and have a habit of throwing them up. But I took the pills anyway. Then threw up. Then threw up again. Something really wasn’t right. By this point my Gran had appeared. We decided I should try and get an emergency appointment at her GP’s surgery.
I knew this appointment wasn’t going to go well when the first thing the doctor asked me was “And what do you think is wrong?”. I had checked Doctor Google but I wasn’t going to mention that as last time I checked its the Doctors job to diagnose the patient. Especially considering that Google had suggested everything from constipation to cancer. After ruling out a UTI and pregnancy the Doctor decided I was in pain because I had pulled a muscle. I mentioned that my stomach seemed to be a bit swollen. Her recommendation was eat healthy and do some exercise. Basically I was fat.
After getting more painkillers and throwing up again I decided I wouldn’t be going into college for the rest of the week. This meant there was no point staying at my Grans and we started making plans on how I would be getting home. My mum had been on the phone during this time, and she hadn’t been able to get an appointment to see my own GP that day but she said she would drive all the way to my Grans and take me home. After what felt like the longest car journey ever I was home, finally. In my own bed… and throwing up again.
OUT OF HOURS
By that night I was still in pain and the paracetamol I managed to keep down wasn’t helping. Mum decided we had to do something. So off she went looking for the phone number for NHS 24. If you’re unwell when your GP’s surgery is closed but not unwell enough to visit A&E, you can phone a number and speak to a nurse who has access to your medical records. They can then decide if you need an ambulance or they can make you an appointment for you to see a doctor at an out of hours clinic. By now it was about 9pm and off we went into town. This, as it turns out, was the first of many trips to the out of hours clinic.
At this appointment I met another Doctor who asked the same questions. “Is there any chance you could be pregnant?” and “Could it be a UTI”. No and no. Eventually it was decided that I probably had “viral gastroenteritis” but the Doctor did say that something wasn’t right with my stomach and I should probably go see my own doctor. So off I went home with stronger painkillers and instructions to go back if the pain got worse.
So off I went to see my GP who said something wasn’t right with my stomach and sent me off for an ultrasound. I had about 4 weeks to wait for the appointment. During this time I had been talking to my Mum who seemed pretty sure that I had an ovarian cyst. When I went in for the ultrasound I was mentally prepared… but actually having a cyst diagnosed was a shock. A big shock. I think for about a week after that appointment I would randomly burst into tears. It wasn’t a fun time.
A day later I had another visit to the Doctor. This time it was to have blood taken. The Doctor was also able to give me more information about the diagnosis. I had a fluid filled cyst attached to my left ovary. It was approximately 30cm by 30cm by 26cm. This actually gave my Mum a bigger shock than me. I had already tried to measure my stomach and knew if I had a cyst then judging by the size of my stomach it was going to be big.
Next I had an appointment at the Woman’s Health clinic. It seemed I was the first person there and got to spend at least 40 minutes meeting the registrar (who said it was the biggest cyst he has seen), filling out forms consenting to the surgery and meeting the surgeon who would be performing the operation. It was decided that I would go in for surgery in two weeks. The 9th of December to be exact. By the time I was finished there were at least six ladies waiting outside. Apparently we took a little bit longer than planned.
Next up was the pre-assessment clinic. This was where I had to fill out more forms asking stuff like “What time do you go to bed?” and. “How many pillows do you have on your bed?”. The I got to speak to a nurse who asked me even more questions. Then I got more blood taken and then after a long wait I got to speak to another Doctor. This meant I wouldn’t have to speak to a Doctor before the operation. My Mum did not like this doctor. She gave me information that was different to what I had been told by the surgeon and had seemed to not have read my medical notes before talking to me. She even suggested that I go see my asthma nurse before I had the surgery. Which by this point was impossible as the surgery was in 4 days time.
6th December. Approximately 8am
I woke up with stomach pains. Lying on my side didn’t make them any better. Lying on my back didn’t make them any better. I even tried sitting up. It didn’t help. Then I started throwing up. By this point I knew there was something wrong. Mum phoned the Doctors surgery to find out what we should do. At this point there was only 3 days till the operation. I spoke to a doctor who prescribed painkillers. I took them and they didn’t help. Four hours later we decided to phone the surgery again. This time I was asked to go down and speak to the doctor. He said I didn’t need to go into hospital and prescribed more painkillers and anti-sickness pills.
EMERGENCY GP VISIT
Three hours later and the painkillers still weren’t helping. This time we phoned NHS 24. This resulted in “Can you be at the clinic in 20 minutes?”. Probably not but we tried. This time I had another Doctor who said the pain was probably being caused by the cyst but checked the normal stuff anyway. “Are you pregnant?” and “Is it a UTI?”. Again no and no. Eventually I was given stronger painkillers and sent home.
Four hours later I was still in pain. This time we phoned the clinic directly and after a conversation with another Doctor we were headed back into town for another appointment. This time I was given two options. Get admitted to hospital or get a morphine injection. I took the morphine injection. Mainly because the hospital I would be admitted to was not the same hospital I was supposed to be having the operation at (because it doesn’t have surgical staff over the weekend). So I got the morphine. According to the internet morphine is this fantastic drug that makes you forget why you need it and have have a happy time. All I know is that morphine broke my ears and nearly made me collapse in the Doctors office. Definitely not a happy time.
The morphine helped me sleep but by the next morning I was in pain again. By that afternoon we decided I should probably go back to the clinic. So I got to pee in a cup again and got more injections. Eventually I was sent home with more painkillers which I could take along with paracetamol. By 9am on Sunday morning I had taken all the paracetamol I was allowed to take in 24 hours. It had been 2 days since I had eaten anything and I was dehydrated even though I was trying to drink as much water as I could.
I think it is quite safe to say I wasn’t well. To quote my dad: “I’ve seen dying people look better than you did”. Thanks dad. By this point my parents had phoned the clinic again and asked for a doctor to come out. I wasn’t actually part of this decision as I spent most of the day sleeping. It took a long time for the doctor to come out. Nearly 4 hours. Apparently it took so long my parents were considering calling 999. I really wasn’t well. Eventually the doctor arrived and I had two options. Morphine injections every 4 hours or get admitted to hospital. I went to hospital.
Everything went pretty quick after that. I was in hospital and on the ward by 6pm. Then I was given my own little room right next to the nurses station. I got oxygen and had an IV line put in my arm for painkillers. The doctors then took more blood. From this they would decide if I would be taken into theatre that night. Then I was given a gown and fancy anti-blood clot socks. Then we had to wait.
I must have fallen asleep for a while but I was given “at least six” bottles of antibiotics through my IV line. A nurse even came by and offered my parents tea and cake. Eventually a doctor came back and told us the news. I would be going for surgery that night. As soon as an orderly came to wheel me down to the theatre. It was now 8pm on Sunday the 8th of December. Almost exactly 12 hours before I was supposed to be having the operation.
The next part of this story is a little bit hazy. Most of what I know comes from what my parents told me days or weeks later. I was taken down to a ward by the theatre. I was moved to different bed then spoke to the anaesthetist. After waiting some more I got wheeled in to a little room just off from the theatre. Here I was attached to a fancy machine that beeped a lot. Then a nurse put a mask over my face, apologised because the gas smelled of vanilla and I feel asleep.
Anasthetic is a strange thing. A friend told me its like marmite. You either love it or you hate it. My aunt told me its brilliant. You fall asleep then instantly wake up and everything is over. Now I can’t decide if I like it or not and it certainly didn’t feel like I woke up instantly. All I know is my last thought before going under was “Hey! I thought I would be asked to count back from 10”.
My stay in the recovery ward was a little bit confusing. I remember telling someone my stomach hurt, though I don’t actually remember it hurting. I know a man came and spoke to me at one point. Though I have no memory of what he asked and what my answer was. And I must have told someone I was thirsty as I was given water. I thought I had only spend about half an hour in recovery. It later turned out that I had been there for almost 2 hours. Apparently I had been falling asleep and not realising it.
By the time I was taken back to the ward it was almost 1am. And my parents were waiting to see me. This felt like a very long night. Every hour I was woken up by a very apologetic student nurse who took my blood pressure and temperature and checked the bandages. Fortunately my parents were allowed to stay overnight with me. This was actually a good thing as they were around to get me water whenever I wanted it. Dehydration you know.
ON THE WARD
Hospitals usually like you to be out of bed as soon as possible. This means by 8am someone will be round to get you out of bed. As I was only 7 hours post op I was left to sleep till lunch time. So my parents went off home with promises that they would be back in the afternoon and I got to sleep. Sort of. Wards are very busy and noisy places. Even though I was being left to sleep I was also woken up to have even more blood taken and for the doctors rounds. Now the doctor that appeared happened to be that same doctor I met at the pre-assessment appointment. Remember her? The one my mum didn’t like. And she decided to ask why I ended up in hospital.
Now I would just like to remind you that at this point I was drugged up with all sorts of painkillers and antibiotics, on oxygen and still more asleep than awake. I have absolutely no idea what I told this woman and why she even thought it would be a good idea to ask me. At one point the surgeon came by to speak to me. Answered all the questions my half asleep brain could come up with and even promised to pop back later to speak to my parents. Finally I was left alone and got to spend the rest of the morning sleeping.
Afternoon finally came around. I woke up and got tea and toast. Hospital toast is the best kind of toast. My sister told me this is because a fire in the kitchen would mean the wards would have to be evacuated. So the bread is toasted at a really low temperature for ages. This means you get toast that is crunchy on the outside and soft on the inside. Brilliant.
By now I was up and out of bed. And even had a TV to watch after one of the nurses went looking for a remote for me (apparently people steal them as a souvenir). My parents were back after having a very short nap. And then it was almost time for dinner. The NHS have done a lot of work on their meals recently. And I will say that all the food I had was very nice. But mince and potatoes is not something I want to be eating 16 hours after major surgery.
So there I was sitting in a small room by myself and guess who turns up. The surgeon who was supposed to be doing my surgery. First thing he asked was “Wasn’t I meant to be seeing you at a different hospital?” Yes, yes you were. And I did try to get to that appointment. Honest.
THE DAY AFTER
Tuesday was another long day. After more blood tests the doctors decided I could take the antibiotics in tablet form. Which meant if I wanted to I would be able to go home as soon as my prescription came from the pharmacy. This would take a long time. Fortunately this ward didn’t have set visiting hours so by 11am my mum had appeared to sit with me all day. Finally at around 5pm my painkillers and antibiotics arrived and I was heading home.
The first week home was difficult. Looking back on it I really wasn’t well enough to be let out just 2 days after surgery. I spent about 5 days sleeping and watching TV. Nights were probably the hardest though. I’m not sure if it was because of the medication I was taking but I spent most evenings throwing up. Combining that with the stomach pain and sleepless nights. I wasn’t having a good time. Finally by Saturday I started eating almost normally again and after finishing my antibiotics on the Sunday I was starting to feel much better.
As I’m writing this it has been almost exactly seven weeks since the surgery. All the doctors that I asked told me that recovery time would take around 6 weeks. I am certainly feeling better than I did but I still have stomach pains occasionally, I get tired easily and I get dizzy after sitting for long periods. Recovery has been difficult, while just sitting at home I feel so much better that sometimes I convince myself that I could maybe get back to work soon. Then I go for a walk and realise just how much I still have to go. And its going to be a long time before I’m back to normal.
A few weeks ago I visited the Doctor again and got the final diagnosis. I had a benign serous cystadenofibroma+ attached to my left ovary. It contained 15 liters of fluid and by the time it was removed almost 40cm in size. What had happened that weekend was the cyst had twisted which cut off the blood supply to my left ovary. I think the medical name for this is torsion. By Sunday the ovary was dead and necrotic and the surgeon was unable to save it.
One thing lots of people have said to me is “I’m sorry you lost an ovary”. Really. I’m not that bothered about losing an ovary. Its not exactly like I was using it. It just happens to be something I have. And if for some reason I decide I do want kids in the future, well I have a spare. I’m still finding it hard to believe it happened.
I’m still trying to decide if I’m happy about the way it happened. Yes I’m happy I had it removed. I feel so much better and I lost 19 kilograms in the space of a week. Literally overnight I went from a size 20 to a size 12. Even my asthma was better. But being rushed to hospital. I suppose yes as well. Just in that it prevented me from having to spend an entire weekend worrying about what was going to happen. Even the visiting hours made everything a little bit more bearable.
The hospital I was supposed to be at the visiting hours were at set times. But the one I ended up at there were no set visiting hours. People could come and go all day (though they did get asked to leave during meal times). So I suppose I am happy about the being rushed to hospital thing. Though I if it happened again I would rather there were no complications.
I hope if you’re reading this because you’re going through something similar that it helped in some way and you’re experience isn’t anything like mine and I hope you feel better soon.
+Would not recommend doing an image search for this.
Edit: 6th December 2014
It has now been almost exactly a year to the day since the events in this post and I just wanted to update everyone on what has happened since as this is now the most popular post on my blog. I wrote this post in January 2014 and by that point had pretty much recovered from the surgery however I was still experiencing extreme tiredness.
After more trips to the doctor and many blood tests I was diagnosed with Chronic Fatigue Syndrome in March 2014. My doctor believes this was caused by the surgery, stress and in general the events of this post. Throughout 2014 I have written about my experiences in getting used to living with a chronic illness and if you wish to read them can be found here: