20cm Dermoid cyst

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Hi everyone,

I've been having on off pain in my stomach for quite some time now, so I finally decided to get it checked out.

The pain is sometimes dull like the feeling you have when you need a wee and it's sometimes really sharp and unbearable.

Anyway, I first went to my local GP on the 1st of May and with the symptoms I decribed he first thought I had IBS (Changes in bowel movements, lower abdominal pain, tiredness etc) but after feeling my stomach he thought I was 24 weeks pregnant and wanted to do an ultrasound, this was a bit of a shock as I'm only 23 and don't feel ready for kids, however he couldn't find a heartbeat so sent me for an emergency referral with the Gynecologist. 

My first apointment was on the 8th of May, the Dr examined my stomach and then did an internal. He immediaetly suspected an ovarian cyst as I had a pelvic mass right up to my umbilicus. He called for a blood test which was done the same day, results came back normal, an MRI Scan (20th May) and an ultrasound (09th June). My case was then discussed in two MDT meetings, they wanted to do another CT scan but decided against this because of my age and the risks it involves. I'm not entirely sure why my case was discussed in an MDT meeting but I can only assume it was because of the size. He is almost certaintly sure it's not cancerous because of my age and the type of cyst it is.

Anyway, the outcome was that I have a very large 20cm Dermoid cyst on my left ovary and a small one on my right ovary, he said he is going to leave the one on my right side until the left one has been removed. He has decided on a laparotomy due to the size and the fact that it's dermoid (fatty fluids can leak with a laparoscopy and cause scarring) he said he will need to cut a vertical incision because of how high up it is and he will need to remove my left ovary.

My main concern at the moment is with them removing one of my ovaries, what are the chances of having kids afterwards? and is it likely they will need to remove the other one as there is a cyst on it? 

What is the recovery time like? how long should I expect to be in hospital for and recovering at home? I'm also a bit worried about the scar, what are peoples experiences with this? 

I have my pre op booked in for the 15th of July, the nurse said the operation has to be within 12 weeks of the pre op and the doctor said he has marked me down as a priority, so thinks it will be done pretty quickly... but what is the waiting time usually like? I'm a bit worried that it is just going to continue to grow and cause me more problems. The doctor said it's like carrying around a 6 and a half month fetus haha.

Sorry for the long winded question, I just wanted to make sure I said everything haha! Thanks smile

 

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  • Posted

    Sorry I was saying blood tests could change . I have just had two ovaries and omentum removed. My scar is vertical

    And goes down low (actually

    Through my horiZontal hysterectomy scar so I look like hot cross bun). I was in from Monday to Sunday (bit if twmperature so in bit longer). It is

    Glued externally and never even had a dressing and has not leaked and considering is quite neat. Obviously sore for few days but I'm 2.5 post op and feeling ok. You just have to take it easy 

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  • Posted

    Hi Siobhan, 

    Sounds like your in a similar situation to me (although I'm not sure what type of cyst mine is).  I first went to the Dr in January and 7 months later, finally have an op booked in July (cannot wait). 

    My main concern is also about having kids (am 28) - but the consultant has explained that the other healthy ovary shouldn't have a problem. I would email or phone your consultant to voice your concerns - you can usually find this on the hospital website. 

    Recovery time really depends on how the op goes and how long it takes personally. I believe you will need to stay in hospital for 2-3 days and then you can need 2-4 weeks at home after that. But it really depends on how physical your job is and how well you do. It is best to just take your time and not rush recovery.

    I was told my case was urgent (ish) but my op has been booked for 3 months after my consultation. I would suggest phoning the in patient waiting list at your hospital to find out when you can expect your op. Mine was really helpful - u can let them know of any commitments you have and try to hurry things up a bit!

    Hope this helps a bit. Overall I've been pretty shocked by the whole process taking so long, and the lack of information available. If it was a man with a 20cm growth on his testicle I doubt it would have taken this long!

    Hannah

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    • Posted

      Hi Hannah!

      I'm guessing your op is quite soon now? How are you feeling about it all? 

      Unfortunately I have another cyst on my right ovary so it's not completely healthy but the doc wants to wait until I've had the surgery for the big one, so surely it's not too much of a concern. From what I've read though dermoid cysts don't just disappear so I'm sure it will have to be removed at some point as well. Sucks being a woman eh. My main concern is my fertility it's a big deal to me and I know it is to my boyfriend too... but I've just got to take every step as it comes, otherwise I would turn into a complete wreck haha. 

      Yeah I'm definitely going to ring the hospital on Monday. I have some questions for the doc and would like to know a rough idea of how long I will be waiting. Fortunately I've been quite busy in the last week but now of course when I have time on my hands I'm thinking about it! 

      The waiting time is ridiculous! Especially when one min they say it's urgent and the next they say oh yeah you'll have to wait! Sounds like you're having problems too! 

      Thanks for your comments, it's great talking to people in the same situation, you find out more info on your own than what the docs tell you! 

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    • Posted

      Hi Siobhan,

      Did you hear anything from the drs? From what others have said it is good to keep in contact with them and the in patient waiting list so they cab keep you up to date. 

      Drs ideas of "urgent" does seem odd - you would think a couple of weeks and you end up waiting 3 months! Less than 3 weeks to wait now - I am mainly really excited, pain isn't too bad, but its the constant aches and looking enormous that I'm really fed up of. 

      Really sorry to hear of your other cyst - they should be able to operate on that one too. I think you can still successfully get pregnant even with a cyst, especially if it stays small. I would voice your concerns to your consultant - I did and he made me feel much better. 

      Take care of yourself

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    • Posted

      Hi Hannah!

      Good news my op is in two weeks! Yours must be in under a week now? How are you feeling about it all? 

      I'm looking forward to getting it all sorted and yes is very annoying when none of your clothes fit you and everyone is parading around in shorts because of the weather eh!! 

      I'm definitely going to make sure they onely take one ovary before I sign my life away haha! 

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    • Posted

      Hi Siobhan,

      That's great news! Congrats. How are you feeling about it all? 

      I found out today that my op's been cancelled due to short staff which is really frustrating! I'm on the case to try to get it done asap - it's just a waiting game that seems to go on and on and on - getting quite used to being whale sized now. All the summer sales are really depressing - all those lovely clothes wasted on me...

      Keep us updated on how you get on. I was still feeling relatively okay about the whole procedure earlier today - my main worry was being in hospital as it's so odd and unfamiliar and being really bored. But I was about to get anxious and then was postponed! 

      I think it's a good idea to try to be as prepared as possible afterthe op as you won't be able to do much by yourself - so get lots of shopping in etc but hopefully your nan can help you out anyway.

      I'm planning on taking photos of before and after shots like all those weight loss ads - should be the fastest ever! But I might just be being a bit strange...

      Take care, H

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  • Posted

    Hi siobahn, I also had a 20cm cyst on my left ovary last year. I ended up looking about 6 months pregnant and the doctor was convinced i was until the tests told him otherwise. I had the op to remove it and my ovary last August.

    I thought I would try to help you as I have already been through the same thing. 

    My operation was 3 weeks after the pre- op assessment. I was in hospital for 4 days. After the op I was off work for 6 weeks as I was not allowed to drive for that time.

    My scar went straight down and is approx 18 cm long and i had about 25 staples, but as its been 10 months is now quite faded and does look too bad now. I have also read that you can still have children with only one ovary and have heard of lots of people that went on to have several children afterwards. The younger you are the more easily your body can adapt to the changes so you should have no problem. I wish you luck and hope you get your operation date soon. Sending you a comforting hug x 

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    • Posted

      Thank you Chris that's really helpful! I'm glad you've made a full recovery and the scar isn't too bad! 

      How long did you have to wait in total? I first went to my doctor on the 1st of May... to be honest I would of left it longer if my mum hadn't pestered me to go... and I'm so glad I did! I couldn't Imagine it being any bigger than it is...I've always been a size 8-10 so it's a massive shock on my body... like you said you did I also look about 6 months pregnant and the docs have done numerous tests to check...In my final consultation the gyn said it's the same size as a 26week fetus. I constantly feel like my skin is stretching from it! Rather annoying but hey its going to be over soon (hopefully) wink  

      I asked the doctor how long I should expect to take off work and he said 6 weeks... I work in an office so it's not too strenuous... but I'm not going to let my boss pressure me into coming back too soon! NO WAY 

      Did they ever tell you what 20cm roughly was, like in relation to an object? 

      Thank you! X 

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  • Posted

    I had a 22cm cyst on my left ovary and I had to have open surgery, they originally said that I was going to have a vertical incision but I ended up with a bikini like one which was so much better! Mine was filled with fluid though so I don't know how that works with dermoid as I know they had to drain fluid off of mine.

    My appointment was marked as urgent as it was growing so fast (grew to 22cm in only 2.5 months) and I still had to fight tooth and nail for an appointment, after I saw my gynae it was almost five weeks until they even gave me a date for my 'urgent' surgery. And that was only because I practically kicked and screamed! lol

    my advice is just keep on their case, I know how uncomfortable you are as it was hell dealing with it so just keep on at them until you get somewhere. If you can, try and get the chief appointments officers name!

    i am eight weeks post op and I have just had a scan which says mine is back and. 7cm x 7cm already! So it's all about to start again for me. :,(

    good luck love!

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    • Posted

      Hi becky.... wow that's fast... did you have to have an ovary removed? 

      Yeah I think they change their minds all the time eh... I guess they don't actually know until they get in there and sort it out. Unfortunately they can't drain it cos it contains fatty oils which can cause scarring on your pelvis... did it make a big difference to your stomach afterwards? I'm trying to work out how big 20cm is...  I know mine has definitely grown since my first appointment, I feel like it is effecting me higher up as well as the lower pain now and he said its about my belly button. 

      Thanks for the advise I'm definitely going to ring them on Monday... I'm guessing they don't open over the weekend? 

      My gyn said that he is going on holiday for two and a half weeks so it might be someone else operating on me. 

      I keep having visions of them accidently taking both my ovaries and I'm left infertile. You hear these horror stories... just being dramatic now haha. 

      Ah I can't imagine how upset you are right now..  but I guess you just have to look at the positives and at least you have an idea of the process.... good luck with yours!

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  • Posted

    Hi siobahn

    I hope you are doing ok. I think it was about 6-7 weeks from knowing what was wrong to having the op. I am also usually an 8-10 dress size so must have looked a similar size tummy to yours. I was off work for 7 weeks after the operation and also work in an office usually it's a minimum of six weeks until they let you drive again. 

    To work out the size it is about the same size as a medium size melon or a volleyball. You could try measuring and drawing 20 cm using a ruler on a bit of paper , if you fold a bit of paper in quarters then unfold and draw a horizontal line 20 cm long through the centre and one vertical line the same length so you end up with a cross you can then join each point with a curved line to make a circle. This will give you a circle which you then need to imagine in 3D to picture what the size looks like. Hope that helps you visualise it. Good luck let us know when you get your date or if you need any more help

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  • Posted

    Hello, sounds like they have messed you about a bit and you need to get this sorted asap. I'm 33 and like you have no kids and have not yet made my mind up on that one. I went to my GP on xmas eve complaining of pain and they booked my in for a scan around new year. Like you, I had a large dermoid on my right ovary. I was then booked in to see the consultant and immediately booked in for a pre-op and then op. (I delayed my op slightly sure to work obligations). I am not 5 weeks post op. 

    I had a laparoscopy converted to laparotomy so have a few small incisions and one large one. The small ones are fine, they had dissolvable stitches which I ended up having to cut out as they were too tight and annoying me. 

    On the day of surgery, you feel very little pain due to the morphine (wonderful stuff) and you will be catheterised so you wont need to move. Usually after a good night sleep that is removed (feels weird but doesn't hurt). I stayed i for 4 days and then they allowed me to come home. 

    To begin with it is hard work, after every trip to the loo I needed a nap!! Its exhausting!! 

    Gradually you begin to feel better and start to move around more. The tiredness lasts quite a while but your body is using all of its energy resources in repairing the damage. 

    I am now starting a phased return to work, I am not driving as I am still quite sore and sleepy, I think for me it will be another week or so. I can only walk at a slow pace for about an hour before I need to rest and my tummy swells up. There are a lot in internal stitches that can take a long time to heal so this causes some discomfort, plus, the muscle is cut and this takes a long time to heal! Don't expect miracles and allow yourself the time to heal. 

    With regards to the removing of the ovary, I know you are in a more vulnerable position with having 2 cysts but the one that is 20cm is most likely no good now anyway and could cause major pregnancy complications so you are best to get it out. There is a high possibility they will be able to remove the other smaller cyst with no lasting effect so don't worry about it. Im afraid sometimes us girls just have to deal with what life throws at us but the main thing is……you can deal with it. Be strong and think positive!!

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  • Posted

    Just to keep you all updated... I've got my op date on the 6 August.. two weeks tomorrow eeek .... only now have I started to get a bit nervous!

    I've got to go for a blood test two days before for blood grouping. My admission on the day is at 7.30am and I have to ring at 6.30am to double check they have a bed because it's an emergency hospital, has anyone had to do this before? Bit worried they might postpone it, but hey ho.

    So just a lot of organising now! Luckily I'm going to stay with my nan post op, so I can stay there as long as I want. 

    Any advise anyone would give about what to take to hospital? What to eat and drink once recovering etc? My auntie said Vitamin E cream is great for the scarring.

    I have agreed with work that I will do some remote work from home on a laptop after about the third week, has anyone done this before and felt fit enough to do it? 

    Look forward to hearing from you x

     

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    • Posted

      Pleased you have a date for your op! 

      You will want nothing but loose comfy clothes, my friend lent me some maternity pj bottoms and I swear I wore them for a month!! I could not wear any of my normal clothes for weeks as the swelling was very bad, plus its so uncomfortable. In hosipital you will want a light dressing gown, hair brush, tooth brush and tooth paste, phone and charger, sanitary towels (just in case), slippers, face/body wipes to freshen up, deodrant, clean (big) knickers and any other activity type thing like books or magazines. You will have drsesings on the wounds and probably best you keep them clean and dry for a couple of weeks. I bought waterproof dressings for when I got home and dod not get my wound wet for over 2 weeks and by that point it was healed and looking great. Water/moisture prolongs healing.

      You may need to stay in for a couple of nights and it can get a bit boring but you will probably sleep and rest most of the time anyway. I know its scary but trust me, its not that bad. Its just something you could do with out!! 

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