I've just found out I have dermoid cysts

Posted , 5 users are following.

I've just been diagnosed with dermoid cysts the largest is 8cm I'm obviously quite concerned.

 I've been looking stuff up on line but would really appreciate some info from anyone who's been through the same! 

I'm a bit scared about surgery & am due to fly long haul in 6 weeks 

I'm lucky in the fact I've got private medical insurance so I should get seen to fairly quick but I don't know if it'll be keyhole surgery or not yet & I'm sure it will affect me travelling if it's a bigger op?! 

I'm probably jumping the gun a bit as seeing me consultant in a few days but have just received my medical report & my mind's racing! 

:-( 

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17 Replies

  • Posted

    Well, based on how I felt I think you would have a hard time flying long haul after 6 weeks if you have open surgery. (Based on how I felt) Sitting for long periods of time is an issue and not to mention carrying things. You could pack everything on wheels but still the motion of rolling a suitcase would be hard - but sitting is the bigger issue. Here’s hoping you can have a keyhole procedure! 
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    • Posted

      Thank you for replying, I know that's exactly what I'm thinking! I am very impatient at the best of times & just want to see my gynocolgist asap 

      It's all only come to light this week so I may be stressing over nothing, I'm just a bit freaked out by it all especially when you read what it's made of 😳

      Can I ask how big your cyst was?! 

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    • Posted

      I had 2 cysts, both on the same ovary. One was 10cm and the other was 2cm. I tried to have it done by keyhole but they insisted on open surgery due to the bigger one being a risk for rupture. 
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    • Posted

      Hi Amber,

      Yes I had both ovaries removed. I had lots of discussion with the Doctors on whether to just have the one ovary with the cysts removed or do both. I’m 52 and had already started menopause- I was getting me period about every 4 months randomly and was having some hot flashes etc. Because of this I decided to have both out, there was really no reason to keep one and it was a good preventative measure for me. I now don’t have to worry about ovarian cancer ever.

      Following my surgery, within a week I started having more frequent hot flashes during the day and wicked night sweats!!!! I could not sleep at all, it was terrible. At my post op meeting with my Doctor we decided to proceed with hormone therapy and it’s been great! I still get the odd hot flash or night sweat but much milder and only once in a while. 

      Depending on your age and where you are in the menopause cycle, that will impact your decision. If you have not started menopause and have both ovaries out - it’s highly likely you will go right into menopause and will start experiencing symptoms right after the surgery.

      It’s really a personal decision and make sure you discuss all the pros and cons over with your doctor for your individual situation and decision. I have no regrets, best decision I have made! 

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    • Posted

      Thank you I'm hanging onto 49 but v.nearly 50! I haven't really had any symptoms yet only a slight change in my cycle which could down to the cyst thinking about it?! 

      I don't know much about hormone treatment etc & wondering about the risks but a lot of people are on it & say it helps! I don't really want to go headfirst in to it all but may not have much choice, although I'm pretty sure 1 ovary is still ok ... actually beginning to feel like a grown up now thinking about all these decisions! x

      Thanks for your reply though xx

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  • Posted

    Hiya.

    I too have an 8cm dermoid cyst in my left ovary. I have scans every 6 months and ca125 bloods. My cyst hasn't changed in the past 4.5 years so there happy to monitor until there's any changes until it needs removing.ive had three c sections and alot of scar tissue so there reluctant to operate yet. I have no symptoms though and no pain. Good luck and try not to worry keep us updated x

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    • Posted

      Thank you for replying that's very reassuring Gemma it's all freaked me out a bit to be honest  I must admit there's a big part of me that just wants them out but I've never had any sort of surgery before & with our upcoming holiday I don't know what to do for the best, I know it's not really my decision & will leave it to the Dr's to do what's best 

      I'm just trying to get my head around it all :-( 

      I'm also worried if anything happens while we're away but then I suppose it could have been there for years without doing anything!? 

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    • Posted

      Hi Gemma great to hear you’re another “watch & wait” patient. My 4.5 cyst has only grown half a centimetre in 3 years so I also have it monitored as it causes no pain & was only found because of something else!

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    • Posted

      Hiya, yes they only came across mine after looking for something else,I would never of known I had it, mine is 8cm which I consider pretty large but there happy to scan 6 monthly,how often are your scans and ca125, I have been told it's unlikely a dermoid will turn cancerous,which is comforting if true

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    • Posted

      I remember not been able to sleep when they discovered mine ,try not to worry too much and speak with gp,everyone's case is different but I've been to Italy every year and was just told to declare on medical insurance, but I've not had an operation for my dermoid, all the best x

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    • Posted

      Thanks again Gemma I think it's just all a bit sudden & like you they found them while looking for something else, I've not got any pain or symptoms which is surprising because 2 of them are around 8cms! 

      I should get some answers at the weekend I'm just not a very patient patient lol 

      Thanks though I just needed a bit of reassurance to keep me going x

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    • Posted

      Hiya I live in Dorset now but until recently was fortunately under amazing consultants at UCH in London. They were the ones to advise to watch & wait & yes, also advised it’s unlikely to become cancerous. I tend to go between 9 & 12 months.

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    • Posted

      Hi Gemma 

      I know you said originally to keep you updated so......my appt was brought forward to yesterday ( because my original consultant had to cancel) apparently I have 2 cysts inside a big one! I've got to have another MRI so they  see what's going on & decide what to do next week I'm in 2 minds about surgery before we go & she did say if all's ok they can do it after our holiday I'm hoping nothing happens mid flight ( I think the only issue would be twisting or maybe rupture but I honestly don't know if there's more risk if I'm traveling?! I've already told my husband I'm not carrying heavy cases lol x

      It's going to be a long week! x

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  • Posted

    Hi Amber,

    I had an 8cm dermoid on my left ovary and got it removed via keyhole last November. For me, I wanted it out immediately because it was positioned in a way that it painfully pressed on my bladder and was at risk of torsion. I think it depends on how the cyst makes you feel to be honest. I would recommend waiting until you have a long enough recovery time available to you to make sure you aren't feeling stressed to recover quickly for something like a long flight. Many people have quick recoveries from keyhole, but mine had complications that left me out of commission for over a month.

    I hope they wouldn't jump to open surgery for you, and I hope you don't stress yourself thinking too much about it. This is very common and they do these surgeries every single day. xx

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    • Posted

      Thanks Kate 

      I'm glad I came on here it's good to hear from people that have the same problem it does make sense to wait & I will if that's an option for me. I have no pain or symptoms I just don't like the thought of having them inside me but perhaps once I've spoken to my gynocologist & got my head around it I might feel better ( I hope so anyway!) 

      Thank you though I have been really worried & feel more reassured now :-) xx

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    • Posted

      Hi Kate 

      So my appt was brought forward to yesterday ( because my original consultant had to cancel) apparently I have 2 cysts inside a big one! I've got to have another MRI so they can see what's going on & decide what to do next week x

      I'm in 2 minds about surgery before we go & she did say if all's ok they can do it after our holiday I'm hoping nothing happens mid flight ( I think the only issue would be twisting?!) 

      It's going to be a long week! x

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