My ovarian cyst story

Disclaimer: I am not a medical professional, this is my experience so go and see your GP if you are worried!

The start of 2020 threw a curveball at me and this has taken up at least two months of my life not including March with the recovery. This is my story of how I ended up with a giant ovarian cyst, the symptoms and how I got it sorted. I have rewritten this post so many times, took bits out… added bits in… The reason why I wrote this was I hadn’t seen much written out there from people who have had ovarian cysts (particularly my age) and a couple of the blog posts I have seen were really helpful. Hence the reason why I am sharing my experience.

The start

It started in 2018 when I wanted to lose weight, I felt large for my frame (I am quite small!) and I was looking at photos of myself and, in my eyes, I looked big. I joined the gym as well as continuing my cycling and running and took advantage of the free health MOT every three months that the gym offered to monitor my progress. I started eating healthily (no more feta cheese wraps) and although I did a lot of sport anyway, with my healthy eating improving (all those salads for lunch) started to work and the weight dropped steadily.

However my stomach just would not shift. In 2019 I ramped up the exercise, I was training to run a marathon (which I documented here), I did a bootcamp at the local gym (I look back at all of those burpees and cringe at how that cyst did not burst!), I ran 3 half marathons and two 10ks. On top of all this I joined a running club not even including all the training runs I had been doing in-between.

Nice trip in the Lake District but here you can see my stomach protruding!

The tummy, however, still wasn’t shifting but at this point I wasn’t as regimented on eating as I had been and to be honest most of the exercise I had been doing was cardio and not core. I was getting people asking me when I was due or how far along I was into pregnancy and it got to the point where I was nervous when meeting new people in case they asked and I started to avoid wearing certain items of clothing.

That should have been a warning sign but because of the above I didn’t think I was trying enough to trim my stomach so instead I ramped up the core exercises in the latter end of 2019 and beginning of this year. I also decided that I would invest in a nutritionist as I was constantly eating at work (the majority of food was healthy but I could still pack the food away and I was drinking enough water) so felt that it could be something to do with my blood sugar levels.

A few people started to say to me when I was talking about my stomach to get myself checked out. I also wanted to go ahead with the nutritionist and felt before I spent my money it would be wise to see a Doctor first incase there was anything. So with some time off over Christmas I booked myself an appointment. I got to the Doctor and was seen by a Physician Associate.

I was at that point feeling stupid about being seen by something which I felt was a food intolerance or me just not working the core hard enough. The fact it was just after Christmas as well worried me in that I would be seen as someone who overdid it with food and was feeling guilty. This feeling was so strong that I went in armed with some measurements of my stomach from the Nuffield Health MOT I did in 2018. It did worry me, looking at the figures, that although I was over a stone lighter, my stomach was larger now than it was then. The Physician Associate listened to my symptoms and referred me for an ultrasound scan.

So on a Thursday I left work early to go to the Doctors to have an ultrasound. I seriously didn’t think there was anything wrong with me at this point (I was convinced it was a food intolerance) and felt that I was wasting their time. I walked in and as soon as the sonographer saw me it wasn’t even a ‘lets see if you have anything’ it was a ‘lets see where it is’. He was shocked that I was so bloated and hadn’t got help sooner. ‘I just thought I was fat’ I kept saying. I started to get worried at this point and I admit I had tears in my eyes. I knew people that had burst ovarian cysts, one even had to have an ovary removed so I knew it could be serious.

I found out from the scan that the cyst seemed quite big but didn’t look cancerous which was a relief. The sonographer narrowed it down to my ovary but wasn’t sure if it was stemming from it or from somewhere else as it was so large, so I would have to have a CT or an MRI scan. The sonographer mentioned that they would urgently send the scans to my Doctor and I was to ring the surgery on Monday.

Monday came and I rang the Doctor, they hadn’t received the scans. I booked a Doctors appointment anyway for February (they couldn’t put me in as urgent at that point so February it was). However on Tuesday the Doctors rang me up and said they wanted to see me the next day.

The Doctor said I had at least a 20cm cyst. Honestly, I didn’t really appreciate how large this was until the Doctor said that he sees cysts that are usually 5-6cm in length. I was referred to hospital to see a consultant who will then decide if I needed a CT or an MRI scan. This will determine where the cyst is actually coming from and what my treatment will be.

However with a six week waiting list with the NHS and the fact I was meant to be going to Canada in a week’s time I needed to know if I could fly or not and the GP couldn’t sign me off so needed to see someone quicker. I paid to go private and got an appointment for the coming Monday.

Seeing the consultant

Monday rolled around and I worked at home in the morning and went to the hospital. When I got in, the extent of how serious it was became apparent. My consultant usually saw women in there 40’s and 50’s and I am 28. James thought we would still be going on our pre-booked holiday to Canada, at that point I wasn’t an idiot I knew we were not going. The consultant said under no circumstances I was to fly. He said he could see even through my clothes that my stomach was completely distended.

After the examination he said he would take me under his care but back in the NHS. I was to be referred for an urgent MRI scan and have the CA125 blood test (the test for ovarian cancer). I did ask the consultant outright ‘are we looking at cancer here’ and he said unlikely but it could either be benign or borderline. I had no idea what borderline meant (it means abnormal cells that could become cancerous). I was also told he would look to operate in mid-February. The consultant was also going to perform a full surgical procedure (laparotomy) and not a laparoscopy. My main concern at this point was whether I would lose an ovary. I do not have children so would like to keep both ovaries and the rest of my reproductive system as intact as possible. But at this point only the MRI would tell us more.

The next day I went back to work and for the rest of the week, it really played on my mind. I have to say work did help and the more I went in, the more ‘back to normal’ I felt. But I was exhausted with it all and I would randomly wake up sweating and worrying about it at night.

MRI scan

My MRI letter came through and I went along, I had never been for an MRI so had a google about what to expect. After cutting out one of my earrings that got stuck in my ear with toe nail clippers at home (MRI machines work with magnets so it would strip my metal earring out if I had kept it in). I went for the scan, I was in the tunnel for about half an hour. It was fine, you hear this banging noise when the machine is working but you just lay there. I was told my scan at the end would be urgently sent to my consultant in four days time so for now it was a waiting a game.

Not much happened for a while. Since I couldn’t exercise all my time was spent on Netflix, trying to complete this cross-stitch of Jemima Puddle Duck that I have had for three years and reading. I was starting to get twitchy and really missed running and cycling. Then I got sent through a letter asking me to go to clinic on 18th March. I was a bit confused at that point as I was told that I would hopefully be operated on in mid-Feb. I wasn’t expecting mid Feb to be operated on – more end of Feb but mid March was really a long way for me and I had mentally prepared myself for the op as well. I rang the office and that was the next date that the consultant could do. I then got a letter telling me the clinic has moved forward to March 4th.

A&E

Then on the Saturday I started to get a really heavy feeling in my pelvis. I can’t describe it – it felt that my insides were going to fall out my right hand side of my body! Sometimes there was pain but it was more an awful dull ache. It happened again on the Sunday and then on the Monday it got so bad I took myself to A&E. A&E decided not to do anything as I was so close to my consultant appointment (my appointment got moved to 26th Feb) unless I had severe abdominal pain. The rest of the week it did get better I just continuously took paracetamol whenever the sensation got bad and just thought get to next Wednesday where I will know what is going on.

Final consultant appointment before the big day

On the Wednesday I went to work in the morning and left around lunch to go to my appointment. Looking at the MRI scans it was interesting, all you could see was cyst! I was told that the cyst was at least 25cm so larger than first thought. He went through what I was going to expect and said that he won’t decide whether to cut me vertically or horizontally until I was in surgery but the scar would be minimal. I asked when I could be operated on and was told that it could be next week. I couldn’t believe it I had been waiting all this time and the day was going to be sooner than I expected!

Pre-op

I had my pre-op on the Friday. If you don’t know what a pre-op assessment is it is where they do a load of tests (urine and blood samples and swabs of your nose and thighs) and ask you loads of questions about your health to make sure you are fit and ready for your op. I then spent the rest of the time frantically wrapping things up at work ready for the op on Tuesday. I had to ring up at 6am to check that they still had my bed available (it would be taken if an emergency come in) and my partner drove me in.

I have to say knowing that I may not be operated on the Tuesday if an emergency came in is a really weird mindset because if I wasn’t operated on I would go into work and continue my week as normal which is such a u-turn! I never had a major op before so had no idea what to expect. I had to say goodbye to my partner as soon as we walked in and was shown to my bed.

Operation day

It is weird just before I went in for the op as I wasn’t sick and although I was carrying a large cyst I felt normal. It was 7am and everyone was still asleep. So I got out my book and just read on the chair for a while until a nurse came over. I had pre surgery checks and got into my gown and compression socks and the anaesthetist came by to talk about my pain relief, a research nurse spoke about a clinical trial that I was eligible for and the consultant came by as I had a couple of questions.

I went into surgery at about 1pm (happily because by then I was starving as I couldn’t eat or drink), – apparently I was a while in surgery but I have no idea. I was under general anaesthetic and when I woke up the first thing I asked was have I got both ovaries and the woman said that only the cyst was taken out! Relieved cannot even describe how I felt!

I spent two nights in hospital. After the op I really wasn’t fit for anything. I was attached to a morphine pump for that night and day and used that to administer my pain relief as well as paracetamol. I nearly passed out going to the toilet for the first time. I couldn’t even use the normal toilet I had to have a commode next to my bed which I used, I think, until the afternoon.

In the morning I had so little strength I brushed my teeth at my bed. I listened to a lot to music as even watching something was just too much for me. I spent a lot of time sleeping and sitting down. In the afternoon I tried walking to the toilet. Again I thought I would pass out. It would take twice as long as well as I had the morphine pump attached to me so to drag that to the toilet it is tricker then you think it is like rolling a shopping trolley with a wonky wheel! The consultant came over and confirmed it was benign which was a relief. The day after, I was feeling much better and did a lot of reading and with James bringing the ipad in I binged on Love is Blind and The Crown!

To be honest pain wasn’t an issue for me, it was sore, I compare it to doing a hard core gym session. What was an issue however was my constant low blood pressure and that kept me in for an extra day. It was so low at one point they took my blood for a blood count as they thought they may have to do a transfusion. The physio came round and listed everything I couldn’t do (which was a lot!) I was given a leaflet to read at home. I also had blood thinning injections and a sharps bucket which I would have to administer myself for fourteen days. The nurse had to watch me administer my first injection and it was awful, I hate needles and always look away when someone injects me let alone having to inject myself!

Returning home

I look quite well here but I spent most of the evening in bed and that morning I felt dreadful!

My first day back at home I thought I would be back in hospital that evening. I felt really light headed and weak I suspect due to low blood pressure. My mum, who was a nurse, was getting worried about me but I managed fine. It was still uncomfortable to walk around and to go to the toilet! Saturday was much better but on the Sunday I was back in bed for most of the day. I weighed myself and I had nearly lost a stone in weight just due to that cyst. None of my clothes fit me anymore!

I am going to write a separate blog post about my recovery because I am still recovering but also it has been so up and down and in my experience not straight forward.

Missed symptoms

Some symptoms of an ovarian cyst according to the NHS include:

In hindsight I certainly had symptoms of an ovarian cyst which I wished I had gone to my Doctor about sooner. The CONSTANT PEEING as the cyst was pushing down on my bladder. Honestly, at times, I can be quite an anxious person so I put this down as nerves. Obviously my bloated stomach. At times I would get what felt like acid reflux and even forgot I went to the Doctor about it a while ago as I found some tablets in one of my drawers to help deal with that.

The most noticeable symptom (not listed above) and the one which pushed me to see the Doctor was the back pain. It was getting unbearable to the extent that I was having to get up and walk around to relieve the pain. Sitting on the train, I would be twisting my body around. I had purchased a hot water bottle and would sit with it behind my back on my desk chair. I even did YOGA to try and bring the pain under control and changed my bag because I thought it was the bag that was causing it! My consultant had said that the cyst had pressed onto my spine, no wonder why I was in agony having to carry that around.

I am not going to beat myself up too much for not having gone to the Doctor sooner, as I thought I was doing all of the right things. I saw there was a problem, I just thought it was weight. One thing I would have done was kept a track of my measurements more and I would have taken photos of myself in so Doctors could see the transformation.

I am really interested in hearing other people’s stories of ovarian cysts. Especially the recovery part as it is kicking my arse at the moment. Let me know. Again if you have any questions about my experience, get in touch.

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