My Ovarian Cyst Journey – How It Started

I have decided to write about my ovarian cyst journey because when I was first diagnosed I scoured the internet looking for other women’s experiences, I only came across a couple of blog posts but they did help to put my mind at ease knowing that other women have been through what I am going through and I hope this blog will do the same for others. I apologise for the length of this post as well.

How it started.

On the 14th of December I finished my day at work, I am a housekeeper at a hotel. I felt fine when I got home from work, I had some lunch then went to the shop, walking back from the shop I started to get a pain in the left hand side of my abdomen, it started off just as a dull ache and got worse and worse as the evening went on. I took some paracetamol and tried to go to sleep. I could not sleep because of the pain, laying down made it hurt more, it’s hard to describe the pain, it was a mixture of a stabbing pain and then intense internal spasms. At about 1am the pain was so bad I was terrified, thinking I was going to have to call an ambulance. Knowing how busy the NHS is at the moment I decided instead to call 111, they asked me a bunch of questions and decided that because the pain was on my left side it wasn’t appendicitis so an ambulance probably wasn’t necessary, they passed my information on to the out of hours doctor for them to give me a call so I waited. At about 2:30am the out of hours doctor called and again asked me the same questions and from my symptoms decided that it was most likely a bladder/kidney infection or IBS, she advised me to keep taking painkillers, drink lots of water and promised me my GP would call for a proper over the phone consultation the next day.

So on the afternoon of the 15th, after having to call the GP myself and remind them that I was promised a called, I finally spoke to my GP and again he asked me the same questions all about my symptoms. One part of that conversation that sticks out because I found it so funny was when he said that the first thing they need to check was if I was pregnant because in a women my age, 33, the sort of pain I was experiencing is most commonly an ectopic pregnancy, so he asked me if I was pregnant. I said no. He said how can you be sure? I said well I haven’t had sex, since January so…. he laughed saying yeah definitely not pregnant then as in all my years as a doctor I’ve never heard of an 11 month pregnancy. Eventually he advised me that it was possibly a urinary tract infection, he would prescribe me antibiotics and if the pain didn’t go away after the 3 day course then to call them back.

I had spoken to three separate people by this point and not once had anyone mentioned ovarian cysts, the main reason behind that I believe is that I didn’t have any other symptoms other than the pain, I especially didn’t have any of the usual gynaecological symptoms that normally occurred with ovarian cysts, my periods were and have always been normal and regular, they weren’t particularly painful, I would only get cramps on the first day. The only unusual thing was at the start of December I bled for 4/5days between periods, that is the first time anything like that has happened. After a lot of googling IBS or a UTI did seem pretty likely, the only other symptom that would lead someone to thinking my pain was related to ovarian cysts is the swelling in my abdomen which increased over the next week but obviously that’s not something people can observe over the phone and it is also something linked with IBS.

The pain did not go away with the antibiotics, painkillers did not even touch it and it spread so it was across the whole of my abdomen not just the left side. As I said above my stomach had majorly swollen so once again I rang my GP and managed to get a face to face appointment. My GP was lovely, she asked the usual questions, took a urine sample and did an exam of my stomach. She was very concerned but once again couldn’t tell me what was wrong, she said I needed to go to the surgical assessment unit straight away to get some proper tests, she wanted me to go there in an ambulance but the wait would of been over an hour and as my GP is right next to the hospital she allowed my mum to drive me round. Once we got to the S.A.U it was about 5:30pm, obviously my mum couldn’t come in and wait with me due to Covid-19 restrictions so I went in alone, all I had to do was wait to be seen and wait I did! I was called in to have my obs done (blood pressure/heart rate etc) and then I had bloods taken and finally 8 hours later I was seen by an actual Dr. By now I was in extreme pain, I was uncomfortable and cold from the waiting room, I was starving, I was thirsty, I was so tired because it was 1 in the morning, I was down right fucking miserable.

The Doctor again asked me all the same questions about my symptoms , he examined my stomach, he took more bloods, he did a rectal exam and decided then and there that I needed to be admitted and have a CT scan.

Me at about 2am waiting for my CT scan

I was still in so much pain so was given paracetamol and liquid morphine which didn’t really do much to take the pain away. I think having two examinations where my stomach was poked and prodded didn’t help. And I had my first ever Covid test. Eventually I was whisked away on a wheelchair through the freezing cold hospital to have the CT scan, I was injected with the contrast which felt really weird, it was very cold. And afterwards I was taken back to the ward and attempted to sleep with a loud snorer and a constantly beeping machine in the room. I was awoken at about 3:30am by the consultant, he said you have a massive ovarian cyst so we are moving you to Telford hospital as they house the gynaecological unit. My phone was getting low on battery, I wasn’t expecting to be admitted when I went to my GP earlier that day, I’m not sure why considering the pain I was in so I sent a quick message to my mum to let her know what was happening and asking her to drop me a bag off at the hospital the next day.

I stayed in the gynae unit for 4 days as they tried to manage my pain. On the Saturday morning I saw a consultant who told me I would need an ultrasound scan and would need surgery to remove the cyst. On the Sunday morning a different consultant told me that again that I was waiting on an ultra sound scan but as it was the weeknd and they are short staffed they don’t know when it will happen. On the Monday morning I was getting frustrated, again a different consultant, who I actually found more personable than the previous ones and who actually spoke to me for a while mentioned the ultrasound scan and mentioned the size of my cyst, I asked how big it actually it and my reaction was holy shit!

It was 35cms in diameter. 35 fucking cms! That’s like a small watermelon! No wonder my stomach had swollen so much. Finally on the Tuesday morning the 4th consultant I had seen said that an ultra sound wouldn’t be very useful to them because of the size of the cyst so they were going to send me home and I would have to await my surgery.

On the 22nd of December I was discharged from hospital. On the 30th of December I had an appointment with the consultant to discuss what exactly was going on with my cysts and what the plan for the surgery would be and I hoped I would be given a surgery date.

I was not given a surgery date then and there. I was told I would have it at some point in the next 6 weeks and my heart sank, wondering how I was going to cope with the pain for so long. The chat with the consultant was good, I actually really liked him. I was wearing my Franz Josef NZ tshirt and he asked me about it, saying he had spent some time in New Zealand too.

He explained that it’s either one big cyst on my right ovary or two, one on each ovary but still the larger being on the right. The CT scan isnt 100% clear because they are so large. Keyhole surgery is not possible because of the size, they will do a midline laparotomy, so I will be cut straight down the middle of my stomach. During the surgery they hope to remove the larger cyst, that ovary and Fallopian tube. Then they want to remove just the cyst from the other ovary keeping that one intact but he explained that to be honest until they actually operate and have a look they are not sure what they are dealing with and exactly what they need to do. They don’t know if it’s cancerous until they have taken it out and biopsied it but they are going to treat it like it is to be on the safe side until they are sure. He explained that the cyst is like a ballon filled with water, they have to be very careful when removing it because if it bursts and it is cancerous then it will release cancerous cells into my body and that is not good so it’s best they treat it like it is just incase. They couldn’t even tell me a percentage likely hood of it being cancerous or not because all the signs that point towards cancer can also be caused by having a huge cyst. One thing he said is that there is a possibility that they will get in there and there is nothing they can do other than give me a hysterectomy but as they don’t want to be doing that to a 33 year old they will try their hardest to save at least one ovary. There are obviously risks when it comes to surgery but this sort of surgery has added risks, the cysts bursting, have the cysts attached themselves to my other organs like my bladder. It’s all so unknown.

How it’s going so far.

I finally have a surgery date which is actually tomorrow, the 5th of February. It has been just over 5 weeks since that appointment since then I have had my pre-op assessment and on Tuesday I had my Covid test. It has been a very long and hard 5 weeks, my stomach has continued to swell bigger and bigger. It has actually grow about 7/8inches in the last 2 months. So who knows how large the cyst actually is now, that is obviously going to make it more difficult to remove, which is a big worry for me. I look like I am 9 months pregnant, which is ironic really because there’s a possibility that after this I may never be able to have children.

I am still in constant pain, some days are ok and some are worse than others, my back has really started to hurt me the past week or so, I guess that is the combination of barely moving for 5 weeks (I have left my house a grand total of 3 times), the weight of my stomach pulling on my back and sleeping on my sofa. I haven’t slept in my bed since the 27th of December, I can not sleep on my side like a usually do and because of the size of my stomach and the pain I experience I really struggled to physically get out of bed. My sofa is closer to the ground and I can use the back of it to pull myself up, which is much more comfortable. I can not wait until I can go outside for a walk again or to fall asleep in my bed on my left side again.

Surprisingly my mental health has been relatively ok the past 5 weeks, I think the country being in lockdown kind of helps because I know I’m not missing out on anything by being stuck inside. I’ve never had an operation before, I had never even spent the night in a hospital before all this. So I am nervous about that, generally I’m ok but every now and then I do get the most incredibly overwhelming anxiety about it but I know that is normal. I think my biggest fear is the unknown, they don’t know exactly what they will have to do during the surgery, they don’t know if it is cancerous, I don’t know how long it will take to find that out, I don’t know how I’m going to react to the anaesthetic or the surgery, I don’t know how I’m going to cope with the pain. I’ve been dealing with this pain for nearly 7 weeks now and it’s a very different pain to the pain of surgery recovery, at least I know painkillers will work on that pain, they barely touch the ovarian cyst pain.

Have you ever had a surgery as big as this? Have you had problems with ovarian cysts? Let me know in the comments. It seems that this is a subject barely talked about but it’s surprising how many women this problem effects and we shouldn’t be ashamed or embarrassment about the gynaecological issue we all go through.

So that’s it really, I’m all prepared, as much as I can be for major surgery. My mum will be staying with me at mine for a few days once I’m out of hospital. That is another unknown, could be in for 3-5 days apparently but it all depends on me and how my body reacts to everything, obviously with Covid-19 they want people out of hospital as soon as possible. Have got a food delivery arriving next week so my fridge/cupboards will be filled with healthy, easy to prepare foods and plenty of treats too. I’ve got books to read and series I’ve saved to watch.

I will be posting a recovery update on here once I am feeling up to it, am hoping to do updates for one week, one month, 3 months post op. Recovery was what I was really interested in finding out about when searching for other women’s experiences with massive ovarian cyst removal surgery.

Make sure to follow me on Instagram at @ABitOfLindsay and on Twitter at @ABitOfLindsay as I’ll be posted more regular updates on there and wish me luck, by 12pm on Friday 5th of February I will be in hospital waiting to go under the knife.