Unilateral Oophorectomy: 23 yrs old with a 13cm mass on right ovary

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So here's my story. I have been having sharp abdominal since January and thought it was my Mirena IUD that was misplaced so I decided to go get it checked up. Turns out I my uterus was swollen as if I was 12 weeks pregnant. Got an ultrasound and the mass was 14cm on top of my uterus so my doctor thought it was a uterine fibroid. But because I got my IUD/pap smear not too long before that and my uterus wasn't swollen then, my doc was a little concerned because it grew so fast in so little time so she referred me to get an MRI to make sure it wasn't cancerous. The MRI showed that the mass was actually connected to my R ovary and not my uterus so the uterine fibroid was out of the picture. I had my blood drawn for a tumor marker and my CA125 level was at 650 and LDH was slightly elevated. My oncologist is now unsure if it's cancerous or not because it "isn't clear in the MRI" and my lymph nodes are not affected and I have ascites in my abdomen. So now we are going to go ahead with a vertical incision, unilateral oophorectomy with a frozen biopsy of the mass to see if the mass is cancerous or not.

To be honest I am scared out of my mind. I'm 23 years old and never had a broken bone in my body, no past surgeries, never allergic to anything, ate fairly healthy, worked out at least 4x a week with heavy lifting. It's just crazy that in 2 months I'm going through all this. I guess my question is, how is life after with just one ovary? Will my hormones change? Will it be hard having children in the future (I've always dreamed of having at least 3 children)? Will this cause any other future issues as I get older? Will my sex drive go down? Will sex even be comfortable anymore? Did my IUD cause this? How is the recovery process? Is it normal for women my age to go through this?

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  • Posted

    Hey, 

    I am also 23 years old and I have a cyst of 11cms filled with fluid and a soild part. I had CA125 bloods too and also cancer team looked at my scans. 

    My MRI was the same- it wasn't clear so means I got to have open surgary in April to remove cyst and ovary as no one can say from my local hosptail or cancer team what the soild part is apart from it's a cyst. 

    I can't really answer any of your questions as I've not had the operation yet. But I've been told my consultant that just having one ovary doesn't affect having children at all. 

    I understand how scary it is and plus is only being 23. It is rare that people our age for it to be cancer. 

    Is yours a cyst? Is fluid or soild or both filled? 

    Always a message away! When is your op! 

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    • Posted

      Oh wow. Looks like we're on the exact same boat! I hope everything will go well with you. My surgery is supposed to be set in a couple weeks. I'm stilling waiting to get it authorized by my insurance. And my oncologist didn't specify whether it was a fluid or sold mass. He just told me it was a mass that was coming off my R ovary but lying on top of my uterus. I also have ascites in my stomach as well. He said it could either be cancer or an ovarian fibroma but he won't be sure until we do the surgery.

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    • Posted

      Looks like we are! Nice to have someone sams age as me. Thank you. I am seeing my consultant on 27th and then I'll be given a date for the op then. 

      Like yours my MRI wasn't clear ether but my CA125 is 20 and normal range is 0-35 

      What have they said about likely being cancer?? 

      With my situation they know I have a cyst as it's fulid filled but because I have a small soild part by using MRI and ct scan they can't tell what the soild part is. 

      I been told it's unlikely and cancer team are resured that bloods and my pelvis, tummy and organs are normal too so only affected area is right ovary.

      Sorry for going on! 

      Your CA125 is pretty high. 

      How are you feeling ?? It's pretty scary not knowing x 

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    • Posted

      Dear Holly, how are you? I saw your message from 6 months ago.. seems like we’re on the same boat. Your  fluid/solid cyst was a 

      “Borderline Tumor”? Did you remove one ovary? 

      My surgery was on November last year. I’m 37 now and the 2 first months I was pretty OK, but since them,  my hormones drop drastically (basically testosterone, I’m not in menopause and also don’t feel the “hot flushes” but I also feel my estradiol levels also drop ... ) My sex drive was amazing before surgery and now, seems like it’s gone forever.

      So, I’m writing for you to share experience. How was your recover? Are you ok ? Did you notice any difference on your wellness/quality of life? And about sex drive? 

      I’ll be very thankful to hear from you. I’m completely lost. 

      Warm regards 

      Amelie 

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  • Posted

    Hi Cynth,

    I don't want to scare you but a CA125 of 650 is rather high. Mine was 10 and I had a cyst of 11 cm. I would change my eating habits and start on organic meat and vegetables. If you smoke and drink, I would quit that also - just in case. 

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    • Posted

      Yeah my doc told me it was pretty high but could also be due to infection if I had one but he wasn't too sure about it. I've been on a pescatarian diet for the past couple weeks, don't smoke, and drink maybe once a month. So hopefully with the diet change, it'll be better!

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  • Posted

    Hi - I had to make the decision to have 1 or both ovaries removed. When I discussed with my doctor he said with one ovary you could still function normally IE have a period, go thru menaupause normal. (I’ve heard it’s also fine to get pregnant as well.)

    I’m 52 so opted to have both out as a preventative measure. 

    You will be fine with one ovary. 

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    • Posted

      Hi Jackie,

      I had my surgery in October where they took out the right ovary only but I haven't had a period since although I do ovulate. Which is really, really weird. I doubt I'll be having more children so it doesn't really matter to me. I don't know whether I'm going into early menopause or it's something else. While in graduate school I didn't get my period for an entire year because of all the stress. So it could be I'm just stressed. 

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  • Posted

    Hey cynthuggin I am also 23 years old and three weeks ago I started having awful pelvic pains. I even thought it was a kidney stone. And it got severe when I would bare down. I went to the doctor and at first we thought it was a bad uti. Later that week I was still in pain. They don't a CT and found a 5cm dermoid cyst on my right ovary. To cut to the chase I had my surgery yesterday. He told me where I was young he'd try every way possible to saw my ovary. But the cyst was wrapped around it so it had to come. I have three different small in sicions closed with staples. I got to come home same day. My pain has been just really sore. I've gotten up to pee several today on my own since my mamaw has on those  lift chair recliners. I feel more sore at my incision site like burning at my belly button. I haven't had a bowel movement yet but not sure if it's where my first 8 hours home I only ate some ice cream. Then ate two pieces of pizza at 11pm (my surgery was 9am) so probably not had time to work. Hopefully this helps. I'll let you know anything else. But honestly not as bad as what I thought. 

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  • Posted

     hello there. I don’t know if you made the decision to have your ovary removed or not. I pray that your mass was not cancer.  I had a unilateral oophorectomy when I was 35.  I had no complications I’ve had my period very regularly ever since which was 12 years ago. I probably am going to be starting the menopause process soon as I am now 47. However, since my ovary was removed I have experienced no unusual side affects of reduced  hormone levels. I do recommend however that you get your hormone levels checked out every year just to be sure.   Especially if you want to conceive children.  Best of luck to you. God bless!
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