Having cyst and ovary removed

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I'm 23 years old and having to have the cyst and my right ovary removed! I am so so scared! I know only having one doesn't effect getting pregnant but I'm so scared that after they have done open surgary that I'll end up getting a cyst on the other side too. 

The reason they are doing open surgary is because my ultra sound, ct and mri scans are not clear as my cyst is fluid and solid based and my consultent and the cancer team are not sure weather my cyst is cancerous or not. As to do keyhole they need to all be 100% sure it's safe as they would need to pop the cyst. 

I'm worried it will come back as cancer or pre cancerous cells- I've had blood tests and they are all normal. 

I am having the operation start of April. 

I just worried about how I'm going to be after the op 

Is anyone else around my age and only has one ovary? 

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9 Replies

  • Posted

    Hi Holly,

    I had mine removed a couple of years ago. It was pretty big, suspected cancer and required open surgery. I’m a fair bit older than you at 33 and because I had a borderline result get scans every 6 month which isn’t so bad. Haven’t had any children yet but can’t say I’ve actually tested it.

    I can honestly say that waiting and the stress was worse than the surgery. I was kept in for about 4 day’s after the surgery. You start a bit limited but especially with your age you’ll be up and about in no time. Just have to take it very easy initially. I was off for about 6 weeks . Take a cushion with you for any car journeys. I can honestly say the fear is worse than the surgery, you just cope and they give you plenty of painkillers. But in all honesty it wasn’t so bad.

    Also for such a big scar it’s barely noticeable anymore. Hope his helps. If you want to ask anything else feel free x

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    • Posted

      Hey, thanks for your reply! 

      How big was yours? Like I said in my post all my bloods including tumor markers are normal but it's my scans which are not clear to my consultant and not clear to the cancer team so that worries me that maybe they are not telling me anything- surely they would need to tell me everything?? 

      I found out I had this 11cm cyst at the start of January this year so waiting has been alwful! It's been so hard. 

      So do I expect to stay in hosptail for around 4 ish days then? Im guessing I would need someone at home? 

      What can I expect what I can do? And not do? 

      Is there any questions I should ask my consultant when I see him in a few weeks? As he wants to see me before the operation date. 

      I'm just having one ovary removed plus cyst- is this major surgery then? 

      Thank you! And sorry for all questions xx 

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    • Posted

      Hi Holly,

      Not a problem. It was about 23cm when they scanned it. Think it grew pretty fast though and was more like 30cm when removed. They can’t not tell you. If they suspect it’s something bad they will let you know and my experience was that everything sped up when they did. They’ll need to remove it to be certain what it is though. 

      It’s much better initially if you’ve someone to help however it’s not long before it gets better. You just get breathless from simple tasks. They say you shouldn’t lift anything heavier than a kettle filled for one.

      It’s open surgery so it is major surgery in my opinion, but it’s not unlike a caesarean. But after the first couple of days home I didn’t even really need the painkillers. I think it took a while for my hormones to right themselves as well, few emotional outbursts in the few months after.

      I can’t think of anything particular. Ask the doctor whatever you want to know. If it helps put you at ease you’re better asking than not x

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    • Posted

      Gosh that's really big. Last I knew my was 11cms but going to ask when I see consultant. 

      I thought that they wouldn't know for sure until it's out. 

      I might need to try and sort some support for home then as sounds like I might struggle. I thought it was major surgary that's what I heard but wasn't see if it was correct. 

      Thank you x 

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  • Posted

    hi holly, i started out very similar to you in that i had a funny irregular period with sudden onset of back pain and slight nausea. An ultrasound scan found an enlarged ovary with an ovarian mass of mixed echos (fluid and solid parts), just under 5 cm.  The scan actually didn't call it a cyst but GP assumed it was a complex cyst. I was referred to gyn consultant and turns out that it's not a cyst after all. All my blood work was fine as well and my second scan showed a smaller mass 3.4 cm. No vascularity so no one was / is particularly worried. I went back for a repeated scan and there hasn't been a change so I was offered laparoscopic surgery. They are happy to remove the ovary and treat anything else they might find on the spot. So I'm having my ovary removed tomorrow. I can totally understand where you're coming from, not knowing exactly what is going on is really hard. The waiting around is also very difficult but if there isn't anything in your scans that screams cancer, that's really good news. Plus you're very young so it's unlikely and your blood results are also a good sign. Try not to stress yourself out, I know it's easier said then done. 

    I had a c-section delivery in 2016 which is my only stomach surgery comparable and I think the first 24 - 48 hours are the worst of any procedure. Getting up and lying down was uncomfortable, some initial gas pain and going to the toilet was very uncomfortable. 

    I have two small children and was told that my fertility would be somewhat affected but i've pretty much completed my family. As long as you have one ovary left you'll be fine. I've heard that the pill can help prevent cysts but I would discuss your best option with your doctor. 

    I'm sure you'll be fine, most cysts are benign even the suspicious ones.

     

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    • Posted

      Hey , 

      Thanks for your reply. Good luck for your op. That's keyhole right? 

      They were going to do mine keyhole but they can't as none including cancer team can say what my cyst is as it's fluid and soild. It's just so worrying! As I don't know ether way. 

      How old are you? 

      Thanks x 

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  • Posted

    i'm 32....yes keyhole, i had my surgery yesterday and went home on the same day. I ended up with 3 incisions and discovered i also had mild to moderate endometriosis which was treated at the same time. everything went really well and couldn't have gone better. next to no pain, no bleeding felt very well afterwards, staff was fantastic. 

    you don't want to take any chances really so it's good that they are doing open surgery as a precaution. i can totally relate, although my mass was smaller, i had previous scan in the year before so i really panicked as it was something that had seemingly grown very quickly. it didn't help that the technician was very urgent about it and wanted me to see my gp then and there. although it is good that they consider things urgent but you can't help but panic. 

    it sounds like from your scans and blood tests that they are taking lots of precautions but nothing stands out as a red flag..... it is much more likely to be benign even the suspicious findings, remember that and once it's out you'll feel lots better. 

    Get someone to help you at home after your surgery, my only comparable to open stomach surgery was my c-section and i was in hospital for 3 days. everyone recovers differently but i felt pretty good after a couple of days and didn't need any pain meds once i got home. i think with open surgery your bowels tend to shut down and they give you something to help with that. the first movement after surgery was uncomfortable. you definitely need to take it easy afterwards and it's tempting to do things yourself when you start to feel better.You're very young so i dare say hopefully you will recover well very quickly. 

    Just try to not stress too much before your operation. I wish you all the best and I'm sure you'll be fine x 

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    • Posted

      I'm glad your op went well- firstly back in January they wanted keyhole but now that's not possbile. How you feeling today? 

      Agreed, I had that with all my scans were done as urgent and it made my worry and panic more than I already was. That's all really good to know thank you. 

      No nothing stands out - they are just unsure what the solid part is made up of as no one including cancer team can say ether way. 

      I'm expecting to stay in hosptail for about that period of time- I hate being in hospitals. 

      Thank you for all your help and advice it's so helpful! I'll try and not worry but it's hard x 

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  • Posted

    doing very well thanks! very minimal pain and generally quite well, so all very good. 

    Don't worry about open surgery, you won't be in pain they'll give you pretty strong stuff initially and the pain and soreness decreases quite quickly if you just relax and don't strain yourself. 

    you'll be fine x 

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