8cm Complex Ovarian Cyst with CA125 of 51 - Absolutely terrified!!

I posted on here a few days ago after I found out unexpectedly that I had a large complex ovarian cyst. The consultant thinks it could a dermoid cyst but can't determine this for sure and is sending me for an MRI scan. In the meantime, my CA125 has come back raised at 51!!! I'm postmenopausal which just adds even more risk into the mix and I just feel like the odds are stacking up against me. I've had no symptoms and only got checked out because of a tiny amount of postmenopausal bleeding. I'm all over the place.

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  • Hello jembers, I wrote on your first post as I also have an incidental mass very similar. 
    when I had my CA125 test I was told it is very likely for a raised amount even if only a cyst as it can signal other things like pelvic inflammatory. The levels can be in their hundreds just on a period so actually the fact that you went to the docs with some post menopause bleeding might actual explain the higher level.

    when is your MRI? I am also awaiting mine, I had to have further bloods taken on wed and awaiting my MRI now. 2-4 weeks. 
    more waiting…..

    keeping everything crossed for us! 

  • Hi cloudy1986, thanks so much for checking in with me, it means a lot. I've been given an appointment for 23rd December (Merry Christmas!!) I'm clearly on an urgent 2 week wait due to the nature of my cyst, my age and my blood test results. It's very hard not to fear the worst. I'm trying to remind myself that my situation could be completely benign, but due to my terrible habit of googling, I've convinced myself that it's something terrible! I am genuinely sending as many positive thoughts to both of us as I possibly can. X

  • Got everything crossed xxx

  • Oh that’s brilliant news. Go for it! Best to just get it done. I went into hospital 11am yesterday, I got taken into surgery 1.30/2. I remember waking up in recovery at 5.30 but thy said I had been there for 30 mins.

    My surgery was a bit longer than expected because my lovely surgeon spent lots of extra time and saved my ovary. I was discharged at 11pm but they only had to keep me so low as my bladder was very lazy and wouldn’t empty after the catheter. I was home in bed by midnight.

    The first 16 hours until this morning have been slightly unpleasant, the gas moving around my stomach is sore and strange but by no means unmanageable. I have just managed to make it downstairs and make myself some toast alone. I have 4 incisions, the only in my belly button is larger, that’s where they removed it from. My dermoid had long hair!! The surgeon showed me pics in recovery, but I was so out of it I don’t remember them. I have to inject myself with blood thinner for 2 weeks as I am on the pill. I got paracetamol, ibuprofen and dihydrocodeine to take home along with stool softener. I am signed off work for 4 weeks but she said day 1 and 2 are the worst and I should be nearing normal by 2 weeks. She gave me four weeks as my job isn’t the easiest. 

    top tips - take a wee bag with pads, lip balm, a book and socks to be comfy in the ward but wear slip on shoes, you will struggle to bend down for shoes! I wore a thin long dress and was sweating in this heat in the hospital! Put a pillow in the car for travelling home, front and back, the bumps in the road feel like craters when driving home. 

    any questions let me know but good luck, I promise it’s not bad. So glad it’s soon over for the both of us. Sending big hugs.x 

  • Hello, you will see above my message to jembers if you fancy a read through how my surgery was. Any questions fire ahead. Do you have a date yet? Hope you are ok and thank you for the well wishes x 

  • Your poor sister in for 6 weeks now. The mental toll of being on a ward is enough in itself, I really feel for her. How is she? You still on for next week? X

  • Thank you, I’m out and ok! They normally keep you in at my hospital if you aren’t discharged by 8pm but I was absolutely determined, drinking jugs and jugs of water, my bladder was just so slow. I didn’t want to stay as there was a little old confused lady across from me who was shouting at everyone all the time and bless her, but I just knew I wouldn’t get a wink of sleep so I asked them to let me go even if it was 2am and they agreed I could go at 11am. So nice to be in my own bed. 
    how’s your partner? You getting on ok with eating?x

  • Cloudy...you are an absolute star! So glad you've got it over with. Thanks so much for the extremely useful advice. I've just been out and bought myself some new slippers and my dressing gown is in the wash as we speak! I was wondering about pads and also getting my shoes back on. I think I'll just keep my slippers on when it's time to leave. I'm going to wear a dress, not just because of the heat, but also for comfort around the middle. I'll take my Kindle to keep me occupied. Is it routine to have to inject yourself afterwards, or just because you're on the pill? I'll keep you posted. XX

  • I had to inject myself with blood thinners after my surgery and I wasn't on the pill. It wasn't so bad. Worst bit of that was i had a stroppy nurse who sulked when I asked her to demonstrate it to me. My blood pressure was so low I kept getting dizzy and I think she objected to the fact they kept the catheter in until I felt a bit better.

  • I only had a tiny bit of spotting after so far but felt more comfortable with one on and big giant pants, because the hospital bedding is so white! 
    the seamless dress around the middle is a godsend, I still have mine on! 
    yes for sure just wear your slippers, I had slider shoes, same thing really but you will be wheelchaired about anyway when leaving, so its only really to pop on to go to the bathroom/get in the car.
    kindle is a great idea too.
    I forgot to say I got dissolvable stitches and then a bit of glue over the top so I don’t need to go back or anything.
    the injections are only because I’m on the combined pill, I don’t think that’s something you will need.
    the nurse kept laughing with me because she was trying to teach me and I kept saying “1..2..3” and then don’t doing anything. It went on forever. A psychological thing, hardly felt it!
    keep in touch when you are out and ok, I’ll be thinking of you.
    what Time are you in?x  

  • Oh maybe I’m wrong. They just said I had to inject myself because I am on the pill.

  • I've got to be there at 7:15am, so hopefully I will be back home at a reasonable time. Thanks again, and to everyone who's wished me luck. X

Reply Children
  • Been thinking of you today. Hopefully you will be heading home soon x 

  • Hey, I'm back! I was second on the list for surgery this morning, and I think I went in before 9am. Everything went to plan and I've just got home. Sitting here reading all the paperwork. My belly feels a bit solid and I've got shoulder tip pain, but generally quite good. How about yourself? X

  • I'm so glad you are both through it and I'm hoping you will heal quickly. I assume they've taken cautionary biopsies? My partner's took about 6 weeks to come back recently so I'd assume all labs are around that currently but it might be according to area.

  • Offline in reply to Jembers Unpublished Reply

    I'm so glad you are both through it and I'm hoping you will heal quickly. I assume they've taken cautionary biopsies? My partner's took about 6 weeks to come back recently so I'd assume all labs are around that currently but it might be according to area.

  • Hey Lyns, hope you're well. They didn't take biopsies during the operation, but the cyst will be sent to the lab to be examined. I was told by my pre-op nurse that they do that for absolutely everything. I was told it should be about 2 weeks before I get the results back. Hopefully, it will just be a good old fashioned dermoid like they've said. Thanks for checking in on me. X

  • Glad to hear that you are home, both you and Cloudy have really had to wait so I'm glad to hear that surgery is completed for both of you and you can now begin the recovery process. Wishing you all a lovely weekend x

  • Oh that’s great you are home so speedy! Lots better today. Sitting out enjoying the sun, had a shower this morning. Still very slow and I coughed today and felt I was going to explode but I’m off all pain meds now and just plodding about. 
    how many incisions did you get? Are you generally feeling ok? I took a Dulcolax today and it got everything moving, and now all my gas pain has gone too. Feels such a relief. 
    Cant believe we have come out the other side of this at the same time too. So glad for us. Heal up well. Give me a wee run down of your surgery when you feel up to it. I’m intrigued if we have had similar experiences all the way through! X 

  • My full cyst went away to get tested and I don’t remember what they said so thank you that’s helpful. X 

  • So glad to hear you're feeling much better already! I've got three incisions. One in my belly button, and two very small ones on the left and right lower down. I've had both my ovaries and fallopian tubes removed at the same time, so I'm assuming they needed access on both sides. I'm feeling pretty uncomfortable at the moment. The shoulder tip pain is horrible, and it's going into my collar bones and down my sternum. I had to change my belly button dressing before because it had got a bit soggy. My husband freaked out a bit because the little pockets of blood that had formed around the edges, leaked all over the bathroom floor! It looked much worse than it was, and everything is clean and dry now. Scared to cough and get in and out of bed. I might have a trial run before bedtime! X

  • Ah I’m sorry you had to change dressings already. Mine are all dry and I’m going to remove them tomorrow or Sunday. I’m anxious as I still feel very delicate. Did you get injections to take? X