My Ovarian Cyst Story

My Ovarian Cyst Story | BluChickenNinja

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 paracetemol. 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.

NHS24By that night I was still in pain and the paracetemol 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. So when I went in for the ultrasound I was mentally prepared… but actually having a cyst diagnosed was a shock. A big shock. A really really big shock. I think for about a week after that appointment I would randomly burst into tears. It wasn’t a fun time.

"the right ovary is unremarkable"

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. It was big. 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 grumpy looking 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. 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.

"I really really don't wanna go into hospital on monday"

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.

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 paracetemol. By 9am on Sunday morning I had taken all the paracetemol 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. Yeah… 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. 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 anesthetist. 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 works by putting all your organs to sleep"

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.

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. Forunately 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.

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 perscription came from the pharmacy. This would take a long time however. 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 meds arrived and I was heading home.

"trying to laugh after having surgery on your stomach isn't fun"

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 and from what I can tell they are all liars. 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 40cms 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. To be honest I’m still finding it hard to believe it happened. Like I have a scar so I have proof that is happened. But sometimes I just go “wow that actually happened”. Because you never think its going to happen to you.

I’m still trying to decide if I’m happy about the way it happened. I mean yes I’m happy I had it removed. I feel so much better. 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.

My Ovarian Cyst Story | BluChickenNinja

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:

I Am Not My Illness?

Thanks for reading.
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197 thoughts on “My Ovarian Cyst Story

  1. Thank you for sharing your story. I recently wrote about being diagnosed with MS and I was also doubtful about putting my medical history up on the internet but if we can help others it’s worth it. Glad you’re feeling better

  2. My gosh. Thanks for writing this, and what an awful story. Was utterly flabbergasted by the time I got to the point about your ovary dying. I suppose this is the dark side of what can happen under a system of socialized medicine? I suspect that if you had been in the U.S. you have been able to get the surgery done in a matter of days, if not the same day. Of course it would have cost you thousands & thousands of dollars, though – think anywhere from $7,000-$15,000. insane.

    • To be honest I think I would rather have it done in the UK. I mean okay I had to wait a while before the surgery. But really the time between meeting the gynae people and actually having the surgery was only 2 weeks. The surgeon literally fit me in as soon has he had space. Also I would never have been able to afford it in the US. I only had to pay 50p or something for more paracetemol, you really can’t compare that to the $7,000-$15,000 it would have cost in the US.

      • But it costed an actual ovary. I am from the U.S. And may be spoiled but I smell a lawsuit. You went to the hospital and everyone missed the most obvious danger which resulted in loosing an ovary and a long term disability… CFS is no joke. You deserve compensation. Thanks for sharing you brav tough soul!!

  3. This really hit home with me at the moment.

    I currently have undiagnosed stomach pains, even after 3 doctors appointments and 2 trips to A&E. I just hope that my situation doesn’t end up as bad as yours did.

    • I really really hope you don’t end up like me. The problem is stomach pains can be caused by so many things. But I had a bunch of other symptoms as well. I would get tired really easily, I would go to the toilet frequently, I wasn’t having regular periods, my asthma was really bad. My gums would bleed but the surgery seemed to clear that up. I had lost a lot of weight but my stomach hadn’t changed size at all. These are the sorts of things you need to tell the doctor along with the stomach pain.

      I would suggest maybe going to see a different doctor or one that you feel comfortable with. They don’t necessarily have to be female, even though it is a bit embarrassing having to talk to a guy about periods and stuff. Maybe you could even ask for an ultrasound. I really hope you get everything sorted out and you are feeling better soon. Let me know how it goes.

  4. I had problems with cysts in my 20s (long, long time ago) and as I got older I had less problems… but I didn’t have to have surgery. Hopefully you are doing better and good thoughts going your way–

  5. I am very sorry to hear your story. I completely understand your pain. In the last year I’ve had at least two cysts. One was diagnosed. The other, well the emergency room doctor says it was a cyst, my OBGYN insists that it wasn’t. I’m more inclined to believe the first doctor. It is likely that the cyst burst and that was what caused me pain. Luckily it never did get to the point of surgery. It is awful that all they can say is take the painmeds and go home. Taking birth control may help prevent them. Honestly?! That’s all you can say? The painkillers only dull it anyway. Luckily the first doctors I saw both connected the symptoms to a cyst and sent me to an ultrasound right away. I’m sorry it took so long for you to get help. I hope that you don’t have to go through this again. Get better 😀 and know that there are a lot of us out there (you’d think with so many women coming across this problem they would have done better research by now)

    • Hey thanks for your comment. While I am surprised that there hasn’t been more research done what I find really annoying is girls are not being educated about cysts. I’m not sure about other schools but certainly at mine I don’t remember ever being told about cysts. To be honest I had never even heard of them before September.

      I am getting better now and I have been told its unlikely I will get another one. So yeah thanks.

      • I never heard about it until I got one myself. I’ve been told that it is very possible that I may continue to get them. None of my female friends knew about cysts either and quite a few are going into a medical field. It be nice if they warned girls what the symptoms are, just in case.

  6. You and your family were very brave. It is so generous of you to share your story – obviously it is very personal but so helpful to all of us in understanding our own bodies. Thank you.

  7. What I can’t believe is how long it took for SOMEONE TO DO SOMETHING besides throw drugs at you!! Why is it no one listens to the patient?? You know your own body and when things are not right. I’m so sorry that had to happen and glad you made it through ok.
    BTW, thanks for visiting!

    • Yeah that was the strange thing. Sometimes, especially on that Friday before the pain got bad I knew something wasn’t right. I couldn’t tell exactly what was wrong but I knew something didn’t feel right. It was very strange.

      And as for the “throw drugs at you” thing. To be honest it was my choice. I think every single doctor that weekend told me I could be admitted to the hospital and it was my choice to get more painkillers instead. I was just scared and didn’t want to go in before I had to.

  8. I’ve never had an ovarian cyst, but I have endured sleepless nights, endless tests, and different interpretations of them over other medical issues. Your story is well told and important. We need to support one another through these voyages. I’ve always thought I could stand anything if only doctors would tell me exactly what to expect rather than mouthing generalities.

  9. I actually got out a tape measure to see how big 40cms is, and that’s huge. It’s crazy to think that you had that going on inside your body and didn’t know.

    It’s so kind of you to share your journey, you never know who you might help.

  10. That’s great news… there’s hope to survive these kind of things and I don’t know you but your story made me tear eyed. .. I guess I hate to see people in pain too. I’m glad you’re doing well now… 🙂

    • Awww I’m sorry. I didn’t think anyone would cry while reading it. Though I have to admit I had a cry a couple of times during it. So I suppose its okay. Thanks I’m doing loads better.

  11. This is a very brave thing to write about, and really valuable I’m sure to anyone facing a similar journey. You never really know what lies ahead – what’s actually going to happen to you and how it might feel. Doctors can’t tell you that kind of stuff.

    It’s just a little sad that your cyst was never picked up on sooner, but at least the cyst and the ovary were removed with no lasting damage to you. And like you say, you still have one spare!

    It seems like you received pretty good care on the whole (the endless and inevitable questions aside), so that makes the process a whole lot easier to deal with. If you lose faith in those treating you, it can have a pretty damaging effect on your whole physiology.

    Hope you are 100% again and enjoying life.

    • I have to say one thing I was surprised about is how nice all the doctors and nurses were. My own GP asked me to go talk to him after the appointments at the hospital and all the doctors at the clinic wished me well. It really was very nice of them and it really did make everything easier. Thanks for your comment and yes I am doing much better now.

    • One of my friends has been trying to convince me to send that Doctor a letter telling her how wrong she was. But to be honest I really can’t be bothered. That GP’s surgery is apparently the busiest in Scotland and hopefully I won’t be going back there any time soon. Thanks for your comment 🙂

  12. What a traumatizing experience that must have been. I’m shocked at how much misdiagnosis there was before they accepted what it was. Thank you for being brave enough to share it with us – cysts are one of those things that are brushed off by people as “no big deal” or as my sex ed teacher replied back in 8th grade when I asked about them – “A pretty rare complication, not something you need to worry about… ” But it’s not rare, and it is a big deal. I was lucky because I grew up pretty educated about them – my mom had one, and I guess whatever caused hers means I’m at risk to get one too at some point in my life, so my doctor and I stay really alert. But so many women, unless they’ve had them or seen someone have one, don’t really get how awful they can be. Thank you for getting the word out, and here’s to a continually successful recovery process.

    • From what I found out it seems that ovarian cysts are actually quite common. But you only need them surgically removed if they get over a certain size. Normally they go away on their own.

      But I do feel that more woman need to be educated about them. And they really are something that we should be told about in school. Thanks for your comment and yes I am getting better. Though very slowly.

      • Agreed on all counts. I wasn’t necessarily surprised by my teachers’ response at the time – but as I grew up and realized how common they actually are, that reply stuck with me, and just made me more and more angry! Glad you’re recovering, and here’s to a much happier and healthier 2014.

  13. I am sorry you had to go through that. I had surgery for endometriosis a couple of years ago, (some of which was on my ovaries) and it was one of the more painful things I had to go through. I remember for at least 48 hours afterwards it was so bad it even hurt to breathe, needless to say, it hurt to laugh, sit up, vomit (which I did a lot of after the anaesthetic), go the bathroom, etc. Just awful. Hope you are recovering speedily. Thanks for stopping by and liking my post 🙂

    • To be honest I really don’t remember it hurting that much. I think it was because I had been in so much pain before the surgery that I felt better afterwards. I dunno. I know I stopped taking painkillers a week after the surgery.

      But laughing and vomiting was very painful. Though I would say sneezing is the worst. Thanks for your comment and yes, I’m doing much better now.

  14. Thank you for sharing your story; I was misdiagnosed with cancer because a doctor didn’t listen to me when I kept telling him that, yes, I understood I had miscarried and had a DNC, and still, I FELT PREGNANT. Turns out i had a septated uterus and a twin (common in my family) hiding on the other side of the wall. At least he was young, and apologetic. Trust your body, and go for second opinions. Mine told me about the twin . . .

    And thank you for visiting . . .

  15. Oh my goodness! Glad you are well. That was very brave, both the experience and deciding to share with the world. Thank you!

  16. Thank you so much for sharing your experience. I’m so sorry you had to go to so much trouble before being taken seriously. That is maddening. It is brave of you to share. I hope you continue to heal and feel like your old self soon!

  17. Oh my dear. I have the same thing! Mine is apparently the size of a grapefruit. Its not causing me pain though and doctors dont seem very concerned about it. I think its making my belly look big and puffy though. Also its weird to think about, and getting babies in there would be “very dangerous” so I’ll try to avoid that. Thanks for writing about this, because I feel like this day is coming for me too. I totally skipped the parts you wrote about your surgery though, AHHHH! You’re brave. You must have been in so much pain. When the day comes, I might send you an email. Thanks for posting this!

    • I’m sure I read somewhere that cysts under a certain size can go away on their own. Maybe your doctors are hoping that will happen. Because you really don’t want to have surgery unless you really have to. I really hope everything goes well for you. Feel free to email me if you need to talk. And I’m really not all that brave. Seriously you have no idea how much time I spend crying.

      • I dont know if its the doctors hoping it will happen or just me… but Ive just been.. kinda ignoring it haaa haa. Thanks so much for this post again, and for replying to my comment. Love your blog!

  18. Thank you for sharing this. I’m aspiring to be a doctor someday and this account is a nice reminder that patients aren’t just a compendium of diseases, and hae fears that need to be adressed as well. It’s easy to forget sometimes.

    • I’ve met more student doctors than I can count over the past 6 months and it seems like they have a really difficult job. But I feel like being a doctor could be rewarding as well. I hope you do become a doctor 🙂

  19. Oh wow. I had surgery for ovarian torsion… it all went fairly quickly. I didn’t even know I had a cyst until it weighed down on my ovary so much it twisted it. They took my ovary out. You should be glad morphine worked for you. They tried it on me and it didn’t work. They had to use demerol. I was about 11 weeks pregnant at the time. We both survived the surgery. I’m so sorry they couldn’t figure out what was wrong and fixed it sooner.

  20. Thanks for sharing your story! I was diagnoised with A cyst on my ovary last year, I had to beg the doctor again and again to get me an ultrasound. Even now, at my new doctors (moved for uni) and I tell them i have a cyst and its giving me pain they just say “It’s your diet” or “It will go away eventually”. I’m really stuck with what to do. I’ve had them since I was about 15. I remember being at school and all of a sudden a terrible pain would come over me and I would vomit and i would get rushed to hospital for them to say “its just a bad period” because they would pop before i was due to come on. It wasnt till last year when they found out I had them they said “Yes, that was them popping”… I want to get the ones I have removed but the doctor just says “Its a very rare thing and I doubt you have it…”

  21. I just want to thank you for sharing you story because this is just the thing that I was looking for: stories of women encountering the same problem. The beginning of this week I was diagnosed with a 20x24x27 cyst on my right ovary that has been protruding into my diaphragm. It has been the scariest week of my life while the doctors still run tests to be certain it’s benign. My surgery is scheduled for next week and I’m so nervous about how much it’ll grow in the next few days and the surgery itself. But, i’m so glad to hear that you’re recovering and feeling healthy again.

    • I know how you must be feeling. The week after I was diagnosed I was a total mess. Don’t worry too much, the doctors have to check that its benign but the chances of it being cancerous are really low. Apparently the ovary makes a cyst to release the egg but sometimes it forgets to stop making the cyst. Nice quirk of evolution there. I’m not sure if you’re having a laparotomy or laparoscopy but one thing I would recommend when you get home from hospital is to put a pillow under your knees when you sleep. It makes sleeping much more comfy as you’re not putting so much pressure on the incision. I’m sorry I don’t have any more advice. I hope you get better soon, and try not to worry 🙂

  22. Wow..I have fibroids for years and when they became symptomatic last December, I was screaming down the hospital in pain that night and will have to do surgery when I want to have kids….but I am distressed that it took so many doctors and clinics and drugs…That is definitely not normal in Jamaica especially when you go to a private doctor. I am glad you are better, no woman should ever have to deal with these levels of torturous pain.

  23. Incredibly touching story and I’m glad you shared it. I went through open-heart surgery when I was around 2 years old and in a way I’m glad that I have no memory of what the pain and misery during that time was like. All I have is a scar on my chest and stories from my parents, which isn’t too bad either.

  24. I don’t know how old this post is, i just googled what’s happening to me! Your story is so familiar to mine. I was back and forward to my doctor until i finally was allowed a scan. I now have a 11.7cm dermoid cyst on my right ovary and have been told that i might not have the choice in keeping the ovary!
    I’ll be getting surgery in the next few weeks and reading this made me feel alot more at ease, although i found the recovery time quite worrying, i really don’t want to miss any time at college!!
    Thanks for this though, i felt like it helped me 🙂

    • Hi Ashleigh,

      I’m glad this helped you. As for college the best thing you can do is talk to your lecturers. Your doctors will probably tell you how long the recovery will take but they don’t know for sure. If you tell your college whats happening I’m sure they will be able to help. Just remember that they don’t want you to drop out either.

      Emma 🙂

  25. thank you sooooo much for talking about your story im going through the same thing and i bearly found out about the cyst, i was rather scared but hearing your story and what you went through actually made some of that go away 🙂

  26. I just got back from hospital. My doctor took 5 fibrosis on my uterus, 11cm cysts and my left ovary out. Glad I can keep my uterus. My stomach is still sticking out. Did your stomach still stick out right after the surgery? My back is also sore. I try to walk more rather than lay down.

    Glad to read your post and thanks for sharing.

    • To be honest I can’t really remember if my stomach stuck out, though I wouldn’t be surprised if yours is. Its probably still swollen from the surgery. Just wait and it should get better.

      And yeah my back was really sore for a few weeks. Its mainly because if I stood up straight it would pull on my stomach which was painful, but bending over would hurt my back. Try to keep mobile and it should hopefully go away soon. I also found that sitting in the car was pretty much the only place where my back didn’t hurt.

      Hope you’re feeling better soon.

  27. Thanks so much for sharing! That before and after picture is just amazing! And for that cyst to have that much fluid in it! I’m still processing – don’t mind me 🙂 Anyway I’m so glad you wrote about this. Being in the US, I have no idea how NHS works but so far, it seems to work just like ours, including all those students coming in every hour to take your BP and all that 🙂

  28. so glad this is behind you now and its frightening to hear how big that was. i was told i had a cyst but i never thought to ask how big? I’m going straight back to check that out. rest up a lot and repair xxx

  29. Thanks for sharing your story. I think you might find mine interesting and, hopefully, encouraging.
    I had an ovarian cyst removed in 1971, 43 years ago. In those days, there was no such thing as ultrasound scans and I was pregnant. The doctors had no idea what was causing the horrendous pain I was in, so they took me into the operating theatre ready for anything. I was cut open from my navel to my groin and they found a cyst within a cyst attached to my right ovary. The cysts had twisted which cut off the blood supply to my ovary. Like yours, it was necrotic and unable to be saved.
    The good part of my story is that I kept my baby, despite being warned that I would miscarry, and went on to have another three children after that, despite having only one ovary. So, I think you’re right not to worry about the whether or not having an ovary out will affect whether or not you have children.
    All the best,

  30. My ovarian cyst was also back around 1973. Originally my doctors thought it was a tumor, so it was a relief when it turned out to be a benign cyst. At the time there was a lot of worry because I was recently remarried and had five children between 6 and 15. My greatest worry was about the kids. My doctor had did the “mass” during a routine gyn exam. I was in late 30s at the time. It all turned out fine, thanks goodness.

  31. Must have taken guts, am sure to write it itself, leave aside putting it up. Looking at your Before / After snap, can only imagine how big the cyst was. I can surely say, I understand (not because I have gone through it), because my wife went through it. The complications that arise and the more you tend to fall sick… have seen that happen, and the worst case being, weight gain…. But glad you came out of it good…..

    The other thing would agree upon is the Antibiotics that doctors seem to love to provide. It is as if they get commissions on it… What have learnt is if there is pain and at any time, seems hard to take it, best go for an ultrasound.. At least the chances of knowing the issue become better…. Cheera.. Rajesh

  32. Hiya.
    I’m Ashleigh and I’m 23. I just had my left ovary and a cyst removed 6 days ago.
    I’ve also lost 12 and a half pounds in that time.
    Did you experience this?

    • Hi Ashleigh.

      Yes I lost a lot of weight after the surgery. I can’t remember the exact amount but it was around 40 pounds. Some of this was due to the cyst. But in the week after I lost a huge amount of weight too. Your body burns more calories after surgery as it trys to heal everything. Its totally normal. Though you will probably put the weight back on again. Hope you’re feeling better.


  33. My goodness! You really went through the mill with this. I can relate through my experiences of being diagnosed with dermatomyositis, a rare auto-immune disease where you muscles and skin attacks itself. Took 18 months to diagnose. I once met a young couple and the wife had been diagnosed with stage 4 ovarian cancer. She was in her late 20s and looked really young with a ponytail and she was doing some adult colouring in. Her husband spoke to me about what they went through getting a diagnosis…irritable bowel etc. I don’t know how she went but I don’t think she made it. Their situation really touched me. Thank you for sharing your story. It has no doubt helped so many people feel less alone in their own journey xx Rowena

  34. Wow you are a star so helpful to so many people and made me think as someone I know has just had a baby after suffering ovary trouble and then thinking she would not conceive. She was the same age as you. If I could I would shout to GPs “young woman in pain check out the ovaries” seems they leave that to last. Anyway thanks for looking at my blog as in turn I got to see this story

  35. It’s just so nice sharing such experienced you had, for many of us can relate of what you had. Me, its multiple hepatic liver cysts and removal of gallbladder with stone. So hard, I have a bloated belly too, but thanks to my two good doctors. Am happy that you too, recovered early and have back that figure again. Good luck and hope you’re back at work now.

  36. Well done for sharing your story. It’s always feels weird to share medical stories online but it really does help people in the same situation who are searching for information! I just had surgery for a fibroid and it really helped to read about people’s experiences with abdominal surgery. I wish you all the best for your recovery!!

  37. Any unexpected illness can be devastating – I now as I recently had a stroke. It is often hard to come to grips with the life style changes an illness can bring. I’m at that point right now…

  38. […] My Ovarian Cyst Story was the longest and scariest thing I have ever written. And I was totally amazed by the internets reaction to it. I’ve had a lot of people tell me how brave I am for writing this and honestly it wasn’t an act of bravery. It was me trying to get over what had happened. I mean I got CFS from worrying so much about surgery. But in a selfish way I’m glad I have this now as I can go back and read it in 20 years. I wrote more about the after effects of surgery and living with CFS in Annoyed, I Am Not My Illness and Unemployed. […]

  39. I’m sorry you had to go through all that, and thanks for sharing your story. Not everyone can share something that personal you know, thanks.

  40. Hi Emma. I’m not quite sure where you are with the chronic fatigue at the moment (I hope, a great deal better) but I have the firm conviction that cfs arises in part from a trauma experience. And your experience with the NHS most certainly qualifies as traumatic. I found I began to make a lot more progress recovering from chronic fatigue when I read up on recovering from trauma. There’s a really excellent book by Babette Rothschild, 8 Keys to Safe Trauma Recovery that helped me a lot. In any case, I rather hope this is old news now and you’re fine, and this has just become a footnote to your life. Take care!

    • Hello, I wouldn’t say what happened was traumatic but I did find it very scary. And to be honest writing this post really helped me get over what happened. I’m still suffering from CFS but it is getting better. Its just taking a very long time.

  41. Glad you’re better now – such a horrendous story. I shouldn’t be reading stuff like this mind, as im currently waiting for my Ultrasound results.
    Ive been having pelvic pains for 3 months or so now, with other symptoms (bloating, weight gain, light periods, extreme tiredness…among others!).
    I too was asked if pregnant….no. UTI ….tests fine. Had blood tests….all clear.
    But when i had my ultrasound, i saw the ‘black mass’ on the screen. The sonographer has then performed the Doppler camera thing. It has been 2 1/2 very long weeks but as yet had no results. I keep ringing my GP and harassing them, but just gotta wait i suppose!
    I have looked on Google and done the whole self-diagnosis thing on the NHS (i know, we really shouldnt do that!!) and apparently i have symptoms that range from IBS to Ovarian Cancer…..not helpful ay?!!

    Anyway, hopefully you’ll get your CFS sorted soon……….

    • Yeah I would recommend if you’re going through that just now to not google stuff. I know I did and ended up being really upset by some of the stuff I read.

      I know that I was able to go see my GP the day after the ultrasound and he had more information from the sonographer. I don’t know if thats normal or because it was a special case. I hope everything goes well for you.

      Its funny though, I’ve actually been experiencing similar symptoms to you the past 2 months, wonky periods, pelvic pain, tiredness. I think I may need a trip back to my GP too!

  42. My cyst is 4cm and I thought that was big. Hopefully, It’s being removed in the next couple of months. After reading your story, I honestly don’t know how you managed with a cyst that big! It’s sad that it takes so much effort and time just to get the diagnosis. After my last scan, the GP told me that she wasn’t going to refer me because there was nothing that they could do. I wouldn’t take no for an answer. I hope that all is well with you.x

    • I wouldn’t say 4cm is that big but thats just me!

      I think I read somewhere that the ovary grows a cyst during the menstrual cycle so cysts are normal. They can sometimes go away on their own. But I don’t know for sure, I’m not a doctor!

      I hope everything goes well for you and you are feeling better soon 🙂

  43. Thank you for sharing your story, I think it’s really important that people talk about stuff like this and not hide it away as it is so so important that any woman suffering from excessive pain, bloating or bleeding get it checked straight away. I was diagnosed with endometrial cancer and at the age of 35 I had a hysterectomy, 6 weeks of radiotherapy and internal high dose radiotherapy, that was 10 years ago. I talk about it, I’m not afraid of telling people, especially those who ask me why I don’t have kids, if one of my friends goes to the GP because of me discussing it with them when they’re having problems. Opening up about it is a success x

  44. That was not a good experience for you! I can sympathise as when I was young I had cysts twice, and ended up with the lot removed, but didn’t experience such difficulties as you did. Things should run smoother for you now I hope. Wishing you good health for the future.

  45. I had an undiagnosed dermoid ovarian cyst that caused complications with my first two pregnancies. They finally found the grapefruit sized cyst midway through my second, and removed the cyst and ovary during an emergency c-section. I am now pregnant with our third. They said it might take me awhile to get pregnant with just one ovary, but I conceived immediately upon stopping birth control. Maybe that will encourage someone who has only one ovary remaining. Thanks for sharing your story.

  46. Wow, I just went through this. I’m 36. I started of with slight pain during my men’s traction cycles then it seems like every cycle it got worse. I tried to stick with the military veterans system but at that rate who knows what would’ve happened to me. They were doing to do a laparoscopic surgery to remove two ovarian cysts but it got postponed because I was taking diet pills. My adrenaline needed to build back up. By the time I went back for surgery this past Tuesday about 5 or 6 days, they went in wanting to do a laproscopy surgery, to another kind that starts with Ste.., but ended up doing an bikini line incision to remove a cyst the size the doc prescribed as “a mini grapefruit or mini soccer all.” When I woke up I felt way better minus the surgery pain. A Complete 180! It took a lot to get the pain managed. But I’m home now, getting the staples removed this Monday. Still waiting on results from pathology, but I’m better now, it’s recovery time next and I hope it goes quickly. I look at the pics of these cysts and can’t believe something like that was in me. Thanks for sharing your story. Cheers to a full recovery.

  47. I went through the very same thing so I understand the pain. For me it felt like I was being knifed. When they finally removed it, more pain. How people have C-Sections I will never know! I’m glad it’s over now for you.

    • Oh yes. Much pain. It was weird, I don’t remember being in pain after the surgery. I must have been because I remember telling people I was, but it didn’t feel anywhere near as bad as before the surgery.

      And yeah C-Sections nope nope nope nope nope

  48. Back in the day I had an IUD put in. It wasn’t a month before I had an ovarian cyst the size of a grapefruit and was pregnant. They took out the IUD and the cyst began to dissolve and so did the pregnancy. Thanks for sharing your information/ experience. Yotaki Beautywalk

  49. Just wanted to say thankyou for liking my blog Merry-Go-Round (posted a while back on March 30th!) – reading the story about the cyst made me sad for how long you had to put up with the pain before something happened. x

    • You are very welcome. I have to say part of what happened was my own fault. I really really really didn’t like the hospital I ended up at. My local hospital pretty much shuts down over the weekend so I couldn’t get admitted there.

  50. I’ve been in pain for several months (mild to pretty bad for me) and I’ve been spotting between periods for months longer than that. Dr said it was the copper IUD so he made me swap it for Mirena. Pain and bleeding persists so he finally agreed to an ultrasound. Technician says ‘nothing on the right. Cyst on the left. 3cm by 2cm (she thinks were the measurements). Comparitavely small but symptomatically worse. My follow up Dr apt is Wednesday next week so I’ve been reading up on ovarian cysts. Normal (functional) cysts can occure in premenopausal women without any symptoms and usually clear themselves up in a matter of weeks. (Generally 3-6.) This is the most common type and occures when the egg is either not correctly released or released and then the sac reseals and continues growing. I’m not sure what kind I have but I’m not willing to let my Dr forget about it and have kept on him that this pain is unusual. He’s finally listening but we’ll see how the Dr apt goes. Officially having pain durring sex (and hyper sensative breasts last month) so I’m expecting ‘slightly not normal’… But we will see. Thanks for sharing.. If there’s one thing I’ve learned in life so far is you have to be your own advocate. I hope you continue to heal! Good luck with graphic design! My bestfriend got her degree and works at a local (internationally sold) magazine.

    • Its funny I’m actually in a similar position to you just now. I have been having irregular periods for 6 months now along with stomach pains. I managed to get a referral for an ultrasound without too much hassle. Especially after my previous problems with cysts. They found some small cysts on my ovary which meant it was probably PCOS. I had blood tests done and I’m getting the results on Thursday, hopefully I will find out then if its definitely PCOS.

      I totally understand you with the stomach pain, its not really bad but its there. Like a strange ache. I think I read somewhere that doctors don’t normally remove cysts unless they are above 5cm. They normally go away on their own but when they get above a certain size its best to take them out.

      Though, I don’t know for certain. I’m not a doctor. I hope everything goes well at your appointment and they will be able to do something for you 🙂

      Oh and thank you very much.

  51. I am so glad that you had the courage to share your story with the world! It is a rough ordeal, yet a part of your life. You were strong enough to live through it, may as well help others with your story. I had surgery last May. I had been super sick for 2 years, and had been through every type of test known to man to try to discover the source of my pain. They finally found that I had gallstones, but I knew there was more going on than just that. I pestered the doctors some more, convinced that there was more to find. In the end, I found that I had a teratoma in my ovary. I underwent major surgery. They removed my gallbladder, both Fallopian tubes, an ovary the size of a babies head, and they removed a mole from my bra line that was cancerous. I am so thankful to have the insight into my body enough to continue arguing with the professionals, or I would still be going through that agonizing pain to this day. My before and after photos look very similar to yours. Overall I have lost an average of around 40 pounds. I may end up writing about my adventure, only time will tell. Thank you for your courage!

    • Oh wow, what happened to you sounds really awful. I’m glad everything got sorted out in the end. I think I must be really luck. My GP is okay with looking into really little things even though it turns out to be nothing, or at least nothing major.

      I would say definitely think about writing about your experiences. You don’t necessarily have to publish it on the internet. But I found that writing about what happened really helped me get over the whole experience.

  52. Hi Emma, you really must have suffered a lot and it sounds so painful on all fronts but it’s wonderful that you shared your story and I’m sure many have been comforted in that. All the best.

  53. I actually had an ovarian cyst removed a little over a month ago with the same situation. Fortunately mine was only 7 cm deep and 2 liters of fluid but spanned across my whole stomach. It’s weird, isn’t it? I still get the tugging feelings and stomach pains every once and a while. Glad it worked out the best for you and that you are keeping your head up through it all. You have a great perspective and optimism. Keep staying strong!

  54. That seems quite a horror story. I’ve gone through several surgeries and stays at the hospital but none of them seem as scary as yours. I hope you stay well now and don’t have to go through any more such incidents.

  55. Your story is very encouraging! I have a cycst thats 30cm as well. I’m getting it removed next Friday (laparotomy) I’m a pretty tough girl but this whole ordeal is a little scary. I didn’t have really bad symptoms besides bloating and bad cramps. I also have to get my ovary removed as well, which is scary because I want kids. Your story definitely gives me hope that things will go smoothly. I think my cyst might be similar to yours as it has solid components as well as liquid. I know recovery will be a bi***, I hope I can find some humor in it like you did. Glad bless

  56. Thank you for sharing your story. I found it by searching the Internet. In one week I will be having a pelvic sonogram to find out if I have ovarian cysts. I’ve been having symptoms since Spring 2014, ended up going to a gastrointestinal doctor and had a yucky test about 4 years before my age requires it. He diagnosed me with Irritable Bowel Syndrome. My regular doctor did no follow up or further testing. I just saw my new doctor Thursday, and she ordered the sonogram (and she wants to re-test me for Celiac’s Disease since I could have had a false negative). I’m having cramps, but not regular cramps, and they are where my ovaries are located but I didn’t know that before. Looking forward to hopefully finding out the cause of all the stuff that’s been going on with my body. If I do have a cyst, I will know what to expect if I need surgery. I really appreciate your willingness to be open about what happened to you. Thank you.

  57. I was told last week also i have 2 cysts on my overies the biggest being 10 cm, i go back nxt week to see consultant to find out the next stage. I was crippled in pain with the examination. I am 40 & husband had a vasecromy reversal last year & went to get checked out after nothing happening on getting pregnant and thats when they found cysts on an ultrasound. I am heart broken as also told i could lose overies. I am beside myself with worry my husband is very supportive but i don’t have anyone else close to talk to

  58. Great account of your experiences!! Can I ask how long before your pain went away post-op? My cyst was also rather large & ended up twisting three times, which caused me to be rushed to hospital for emergency surgery. The surgeon completing the surgery at the time felt that my ovary could be saved so only removed my damaged Fallopian tube. I am now still feeling a dull pain on the same side I had the cyst every now & again & not sure if this is just the healing process. I went back to work after 4 weeks so I hope I haven’t been doing too much!

    • I can’t really remember now to be honest but I think it took about 4 months maybe a little more. Though I also remember a nurse saying it can take up to a year for everything to fully heal. Hope this helps 🙂

  59. Oh my! I’m so glad you made this post and so glad I found it. I’ve recently been diagnosed with a cyst (caught sooner due to other concerns being investigated), though mine is only 6cm. At my scan 2 days ago, there’s no sign of torsion yet, but it is incredibly uncomfortable. I’m currently waiting for my doctor to call to discuss next steps.

    After having a c-section, I know that abdominal surgery takes a bit to heal, though the plan (right now) is to do this laparoscopically, so it should heal quicker. I hope. 😉

      • Right now, my doctor feels comfortable with keeping an eye on it, so that’s what we’ll do. My bank account needs so time to recover before another surgery. BUT, at least we know it’s there to watch.

        • That’s what my doctor said as well – so we’re monitoring it. It’s borderline requiring surgery, so I’m rather hoping it shrinks instead. It’s big enough it’s pulling my left ovary above my uterus. Yay?

  60. Its lovely to read someone elses story about their experience with an ovarian cyst. I myself got diagnosed with one last year and had it removed in February. Hope everything is ok now x

  61. Since the swollen masses (mostly likely benign cysts) and enlarged lymph nodes (the Dr believes but still is sending me to ultrasound)…now my lymph node under my jaw is swollen as well (same side).

    But I relate to your post…as I have ovarian cyst. One that the on/gyn felt at general visit. She hasn’t suggest an additional ultrasound for that. And interestingly, I was diagnosed with the same gastro condition a few years ago…which I get reoccurring symptoms of from time to time.

    Thank you for liking my recent post. I enjoyed reading yours. 😊

  62. I am very grateful that you wrote this blog. I feel my symptoms have been dismissed by doctors for a long time. I persisted in getting scans and tests. At last they too have discovered a cyst on my left ovary. It’s due to be removed next Tuesday. I can’t wait! I believe I have had it developing for years. Doctors have disagreed but I say who knows your body better. I have been saying I told you so, quite a lot over the last 2 weeks. Thank you!

  63. Wow, it’s mind boggling to think they took some thing that big out of your body. I hope you’re in good health now. Thanks for sharing such a personal story.

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