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Large bilateral dermoid cysts

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I've been back and forwards to the doctors/hospital for the past 9+ months, trying to get to the bottom of my abdominal pain.

​CA 125 has always been normal. Each scan has read differently to the last, with the most recent suggesting that I have bilateral dermoid cysts, both approx 10cm x 9.6 cm x 9 cm, though one is slightly smaller than the other.

Considering that at my previous scan, 3 months prior, the results showed that 1 x cyst (described as a simple cyst on that occassion) had ruptured and the other one was not big enough to worry about, the doctors feel that ultimately they are going to have to remove the cysts as they have changed so significantly in a relatively short space of time and because at the size that they are, they're unlikely to go away on their own.

Does anybody have any experience of bilateral dermoid cysts of this size, their removal and recovery? The doctor has warned that there is a high risk of losing both ovaries if they operate, but that operating seems unavoidable. I have to see the consultant in a few weeks to dicsuss options, but I am pretty certain that they will want to remove them. I'm 28, do not have children and don't see myself having children in the future, so my main concern is premature menopause. Also, I guess at the size of the cysts, they will not be able to remove them laporoscopically.

Any experiences/advice appreciated. I've gone from having 1 x dermoid cyst, to 2 x complex cysts, to 1 x simple and 1 x complex cyst, to 2 x large dermoid cysts. A bit of a rollercoaster! 

0 likes, 6 replies

6 Replies

  • Michellestar87
    Michellestar87 Lugs

    Posted

    Hello I don't have experience of dermoids but I do have the experience of changing cysts.my right enlarged ovary then turned into 3 irregular thick Walled cysts to 3 complex cysts with solid parts and mural nodules.did they diagnose yours from ultrasound or mri? I hope someone can come along and give you some more help take care Michelle x
    • Lugs
      Lugs Michellestar87

      Posted

      Hi Michelle - thanks for your comments. Mine have all been diagnosed from ultrasound, no CT or MRI. I had to push for my latest scan as the doctor basically told me that the cysts were all but gone and that any pain was damage healing; they couldn't say what the damage might be, just that there wasn't anything left to do. I'm glad that I did press for the further scan!

      How are they going to treat yours?

    • Michellestar87
      Michellestar87 Lugs

      Posted

      Blimey I'm so glad you did !! Mine will have to come out as changing for the worse.do you know some of the features of your cysts did they tell you ? Like solid /fluid etc? The concern on mine is the mural nodules xx
    • Lugs
      Lugs Michellestar87

      Posted

      No, they didn't mention anything like that, just that they thought they were dermoid. I hope the consultant will give me a bit more information at my next visit. 
  • margaret105
    margaret105 Lugs

    Posted

    Hi lugs i had 7cm dermoid tumor,on right ovary,when he operated after waiting a month  of pain.he removed both ovaries as it had tortion 3.5 times around it,so he took out both so nomore dermoids could grow ,but i am in my 50s,so i guess they wont as your young ,wait and ask but i know other peeps have kept ovaries ,as they want kids,tc xsmile
  • danielle99465
    danielle99465 Lugs

    Posted

    Hi. I am 32 years old and started having right sided abdominal pain around a year ago. US scan showed a left sided cyst approximately 4cm. I was having lots of discomfort however, so was given a laparoscopy in October and Drs removed an 11cm dermoid cyst from my left side! A shock for me and for my surgeon. Unfortunately my left ovary could not be preserved. I have since been found to have a right sided dermoid, which has shown as 4cm on scan. I am awaiting its removal in around 4 weeks time, as I am still in considerable discomfort. I have had fertility testing, tubes tested also and everything is normal. I am just hoping and praying that my surgeon can preserve as much of the other ovary as possible, as I am hoping to start a family. I was off work for 4 weeks, as I am a nurse so no heavy lifting afterwards. The wind pain after laparoscopy was the worst thing! Hope this helps, good luck x
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