Extremely large cyst, missing ovary...?

[ywggirl]

Hi everyone!

I'm brand new to this, but I wanted to come on here and see if anyone else is going/has gone through something similar?

I'm 27, and after having thought I was just really overweight in my abdominal region for the past few years, I discovered I have a large cyst! They're not 100% positive it's an ovarian cyst, but that's my best guess. (I'm meeting with my dr for a follow up on Tues.) This cyst is 50cm in length, from just under my rib cage all the way down to my nether regions, about 3 ft across, and at least 24 cm deep.

First off, I'm wondering how they might go about removing it? Someone mentioned it might have to be done like a c-section b/c of its sheer size, others think it could be done in a less invasive way.

Also, when they were giving me an internal ultrasound, they were unable to locate my left ovary - they had no explanation for that, except that maybe it's hidden behind the fluid. Is it possible that a cyst could swallow my ovary whole?!! Could my ovary have just ruptured entirely and caused this cyst? I'm obviously very naive when it comes to this, pls forgive me, this is all still so brand new and a bit shocking for me, it's hard to wait a few more days to get answers from a dr!

Anyone else with a really large cyst - how was it removed? What was the recovery time like? Anyone have an extra left ovary they could spare?! lol

Thanks for taking the time to read this - any help or insight anyone can give would be greatly appreciated!

cheers,
cat

[zoebean]

Hi
ywggirl, thanks for posting this thread!!!!
I am 34, no children. I have a large ovarian cyst as well 23x15cm.  I am scheduled for surgery on the 24th (laparotomy).  I feel swolen, not in pain. I am nervous, and just had another surgery to have a adjustable gastric band put on my tummy. I have been loosing weight because of it and my clothes are getting looser everywhere but my waist! I am so bummed to go through surgery again so soon.  I don't know what to do about work, I own a big business....On the upside, the test for cancer proteins came back neg. Not that that is for sure.... and I have an amazing crew!  Please keep posting updates, it is nice to not be the only one giving birth to a honeydew melon!

[ale88]

Hello, you are all such an inspiration and I wish I would have found this site sooner...I know I would have felt better about my situation.

One and a half weeks ago, I had a tubal ligation done and the doctor was concerned about my right ovary. It is the size (maybe even slightly larger) than my uterus. It is purplish/gray in color and is basically enlarged. I have worried myself sick thinking this is really big until finding this site and realizing what you all have been going through and just how big a cyst can get. Basically, they just told me that it could be something or it could be nothing and scheduled me for a ultrasound. Well I have never had any problems with cysts or any type of problems with becoming pregnant, with my menstrual cycles, etc., so I am not too educated on the subject of cysts and have been very worried about it. I am going on the 17th (Oct)for a ultrasound and hopefully it will be a simple cyst. I have had several of the symptoms of cysts (lower back pain, painful sex, extremely tender breasts, among others) for a while now, but never thought much of it and when telling the doctor at my yearly checkup or when going in approximately every six months for birth control it was never really made into a big deal that something could be wrong. I did have severe pain on my right side after my tubal and at one point I thought I needed to go to the ER. I felt like I was having spasms(something like contractions)on my right side in the ovary area, and it was extremely painful. But things are not as painful now just mostly discomfort. My back pain has gotten a lot worse though.

Basically, I just wanted to say that you are all in my prayers for those of you who are going to have these huge cysts removed and for those who have gone through it already, you will be my inspiration!

By the way is the purplish/gray color normal for an enlarged ovary/cyst?

Any words of wisdom would be welcomed and very much appreciated.

[lak82]

Hi all, i also have a reasonably large cyst: 18cm X 17.5 cm X 8 cm. Its ? a dermoid with yep teeth, hair etch-DISGUSTING! problem is i am also 13 wks pregnant! I dont know how long the cyst has been there as like most of you I have no symptoms. They found the cyst at my 9wk ultrasound-the DR thought I was having twins due to my high pregnancy levels, but no it was just a cyst of all things.  Thh dr is saying to get it out at 14wks just in case it ruptures but i am really not keen on this idea as there is a chance of miscarriage and i have never ever had surgery and am scared SHITLESS.  I would have to have a laparotomy due to the size. But am still undecided about what to do.

LEicha

[leeloulee]

Hi everyone
Well I'm just thrilled to have found this site i was told 2 weeks ago that I to have 2 huge cysts one that also goes just below my breat all the way to my ovary
I have been in incredible pain they thought it was my appendix
no such luck
I am also over weight and always put my symptoms down to this
but it would seem that was only half the problem
I have been told I will be operated on and I am feeling very anxious due to my weight and condition
ywggirl I hope you are well and that your op goes supper
I so know where you are at ! Good luck
I'm worried my cysts are attached to something else I know that they are restricting my breathing and reducing the use of my bladder.(mmm great stuff eh )it is also very hard to get comfy at night not to mention I feel like I have a watermelon dragging me down
Isn't amazing how we can ignore symptoms for so long or they way we compensate .
Any way wishing everyone all the best

[ywggirl]

Just wanted to let you know that I'm going for surgery on Tuesday! They won't know until after it's out whether or not it's cancerous, but they figure b/c it's so big, that if it WAS cancerous, I'd probably be dead by now!

So they're going to give me an incision, drain me, and then pull the sac out. I'm hoping to lose at least 10lbs from this!!! HAHA!

[Kolbegirl]

I know exactly what you mean about thinking it was ovulation time. I just hope for your sake that you can get it out ASAP because the pain will come and will only get worse as more time passes. I know that mine was there for about 3 years, but the pain and discomfort was so sporatic that I truly dismissed it. Good luck and I have been thinking of you all week and what you are going through. GOOD LUCK with the oncologist!!!

[ywggirl]

Wow, your stories are truly an inspiration to me! Tina, your initial bouts of pain sound like mine - only I never went to see a dr about it! I always just associated it with ovulating or whatever, but now that I know it's a cyst, I'm really more aware of the pain than I was before. Not fun! It's hard to sleep at night, I never have a solid night of rest, b/c I'm always tossing and turning. I can't lay on my back or my side for too long b/c the pressure of this cyst is too much for the rest of my insides! It's good to hear that you're recovering nicely, and I can't believe your cyst grew so much in such a short period of time!!! Yikes! I've taken all your pointers into consideration, and I'm prepping my hubby so he knows kind of what to expect and what to have ready for me! Thank you for sharing!

And Anna - I'm hoping I get that complimentary tummy tuck, too! I'm a *bit* of a smoker myself, I can't imagine trying to quit at a time like that! But who knows, I just may have to (hubby won't let me smoke in the house, and I'll be darned if I have to get my arse outside in the chilly air to get my Vitamin N!) My cyst is pressing on my diaphragm, so I've been eating my small portions and any time I have more I feel sick. Plus, all this time I just thought I had a heart condition b/c I was getting irratic heart palpitations, but as it turns out, my heart's just fine. Stupid cyst!

I was so determined to lose weight (primarily my big ol' belly) that now my ribs are poking out, and my boobs are just like wrinkly flapjacks! All for nothing!, b/c I still have that cyst! But hopefully not for much longer!

I got the results of my bloodwork yesterday, and they couldn't conclusively rule out cancer, so now I've been referred to an oncologist, whom I see tomorrow. Hopefully I don't have to wait too much longer to get this removed!

Thanks again for sharing your stories, it's really been so helpful! Wish me luck tomorrow!!

[Anna-maria74]

There were absolutely no loose flaps of skin what so ever. I think without doubt there was some tummy tucking going on. The reason I put some weight back on - I think - is because I gave up smoking at the same time :D I swapped ciggies for sweeties and now I have to get off the sweeties :)) Also people with large cysts tend to be malnutritioned prior to surgery due to trying to loose what they think is excess weight when in reality it is the cyst.

When I came home I looked ill. I weighed 7 and a half stone which is erm little over 100 pounds because I had been dieting thinking I was over weight. Plus the cyst was pressing on my stomach and diaphram making it difficult to eat more than small portions. After about a week I was like a ravenous beast eating biscuits, crisps, even my kids were not safe if they sat too long! Ive put on about 20 pounds which my hubby loves because I have my boobs back.

Anna x

[ywggirl]

Nope, not a bit of pain! That's what's weirding me out, I don't have an ounce of pain (just the pain of embarassment that the "Oh, when are you due?" question always caused me!)

I'm glad to hear that after week 3 you're feeling great! That gives me hope (I hate being bed-ridden, can't stand it even if I'm sick with the flu for a day!). What exactly causes the swelly belly? With my luck, my swelly belly will look exactly like my tummy does now, like I'm 9 months pregnant! No one would even know the cyst was removed!!!!

How long after surgery were you mobile again? Sounds like quite the incision they had to make on you. How long after it was diagnosed did you go for surgery? Is this something they typically consider "emergency" surgery?

Glad to hear you're doing so well after all is said and done!!!

[shopaholic]

thank you for your good luck vibes.  my surgery is halloween !!!
and am looking forward to my tummy not be shaped like a pumpkin
good luck and best wishes to you


jane
shopaholic uk

[Kolbegirl]

My question to you is....ARE YOU IN TERRIBLE PAIN???????????? If not, you are an amazing woman. I had surgery 3 weeks ago to remove a 28 cm cyst (size of a basketball, weight 10 lbs) and I thought that I was going to die before they could get it out. Because of the size of mine, my dr cut me twice, my incision looks like an upside down T. 23 staples up and down, 17 across. Mine was a laparotomy. As far as recovery time, you are probably looking at 6-8 weeks. I am starting my 3rd week at home and I feel great, except for having a small seroma that is being "packed" with gauze every day by Home Health. My dr also told me that the swelly belly of mine would last 4-6 months. I have already lost 15 lbs, so I am definitely looking forward to the swelling going down where I can where those clothes that have been a little snug. Good luck with everything!!!!

Tina

[ywggirl]

WOW Shopaholic - teeth in your abdomen??!! When is your surgery?  I'm sending some good luck vibes and well wishes your way.

Anna - the massive mass club!! That's hilarious! I'm pretty confident that it's not cancerous, as the ultrasound tech said there were no solid masses to be found. So that's good! (but there's always that small little voice of doubt in the back of my head - guess I'll just have to wait until tomorrow!)

What do they do with all the extra skin? I'm sure once the cyst is removed, there must be flaps of loose skin hanging about - do they just give you a complimentary tummy tuck while removing the cyst?!! I've always had issues with my weight, thinking I was just extremely large, and always having strangers ask me when I was due. I was horribly embarassed, but now that I know I'll be losing my gut, I'm pretty excited about it all! Anna, just out of curiousity, if you came home a size 6 (fantastic, btw!!!), did your body just adjust itself to a sz 10? I don't think I've ever been anything smaller than a 10, and I'm sure I was a sz 10 when I was born!, so I can't imagine losing that much - but I'm wondering would I be gaining a lot of weight back after the surgery? (Or is this just pretty much due to lack of activity during recovery?)

Tascha - I don't know if there will be a gyn present for the surgery, but the doctor who got this ball rolling is my fertility specialist, so I'm guessing he'll definitely want to be there. Do you think I could possibly lose my left ovary, since they were unable to find it?

I'm looking forward to the swelly belly if it means that I'll have a normal-looking stomach afterwards!!!

Thanks again for all your input and advice, sorry if my questions seem ignorant, but this is totally brand new to me here!!!

[Kolbegirl]

I am absolutely amazed that you have not been in any pain. I have had some sort of discomfort for about 3 years now. I told my dr but she told me that it was probably just having to do with my period. So, trusting her like I should, I forgot about it. But, honestly, the discomfort went away, and ironcially appeared around that time of the month. I really began to feel constant pain this summer, but I thought that I was having another round of kidney stones. My breaking point came on Aug 25 when the pain was so bad that I seriously thought that death would be better than that type of pain. I spent 7 hours in the ER (in another city to top it off), and that is when the ER dr found my huge cyst. He gave me hydrocodone, which nummed the pain, but it NEVER went away where I was comfortable. I took a full prescription from Saturday morning to Monday morning. I went to my OBGYN on Monday and she scheduled surgery on Tuesday morning. From Friday night to Monday morning, it grew from 20 cm to 22 cm, then from Monday morning to Tuesday morning the day of the surgery from 22 cm to 28 cm, so it was a fast grower, and i consider myelf VERY lucky because I feel like it was just about to rupture. My dr even gave me pictures after she removed it, so I have a constant souvenir of why I was hurting all that time.

Being at home has been difficult for me. I am a teacher, and I was only with my students for 3 days when all of this happened to me. Luckily, I have 2 amazing co-workers who have taken care of EVERYTHING for me. The first few days at home were hard. I tried getting into the shower, but I was so weak that I would just shake and be out of breath just raising my hands to wash my hair. After about a week, things got much better. Now, I can get out of the chair or couch without needing help, I can sit up in a chair at the dining table to eat without being so tired and I am just beginning to feel normal again. My best friend who has had 3 c-sections told me that I would make drastic changes every day and that I would be amazed on how quickly I improved every day. She was so right. Before you have a major surgery like this, you do not realize what muscles you use and do not realize. Where I was cut has been dramatic for me. This was my first (and hopefully only surgery) and so I really had not idea what I was facing. I learned very quickly to keep pillows around me. I felt like a marshmellow, but it was so comfortable because of all the cushioning. Also keep one for your tummy. When you have to cough or want to laugh, that pillow will be your best friend. I only forgot my pillow once when I needed to sneeze.

My swelly belly was because of all the nerves and muscles that were cut. All of those nerves and muscles have to heal inside and have to rejuvenate themselves. I am not looking forward to being swolen for 4-6 months, but I guess I will just have to deal with it. If you have any other questions, please let me know. This forum has been a great source of therapy for me, so if I can help, let me know!!

[Gatsby]

Hi there and welcome!  Due to the size of the cyst, you may have a laparotomy.  If they are able to drain it prior to removal, than your incision may not be that big.  Of course they will bag the cyst so that there is no spillage.  Although 99% of ovarian cysts are benign, you are wise in seeking medical attention.  Do you know it a gyn/onc will be present for the surgery?  They are specialists in women's gyn issues and have seen it all.  Also, your left ovary could very well be hiding, as that seems to be a common occurance with left ovaries (they can hide behind the bowels, etc.)  You will have a swelly belly after surgery, but once that goes away you will see a marked difference in your abs.  Good luck and keep us posted.
~Tascha

[Anna-maria74]

Welcome to the massive mass club :)

I am still in shock at the size of your tumor WOW thats a record for sure! Mine was 20cm Nats was 25 and I remember a 42 but I can't recall who it was? I dont even know where to start answering your questions but one positive thing is that it is VERY unlikely to be cancer. It is up for debate as there is no sure fire way of assesing malignancy until biopsy (after surgery) but a tumor of that size would have most likely killed you by now if it were cancer (this is what my surgeon said to me but there are contradictory opinions)My money is on a mucinous cystadenoma!

If I were you I would ASK for a laparotomy. I know of one other patient who had keyhole for a tumor this size and it was successfull but the risk of spilage in a tumor this size is vast. You must have litres of fluid in there you dont want them faffing about with little instruments let them get in there properly. Your ca 125 will probably be slightly elevated due to the size of the cyst, dont worry about that for even a second - means nothing.  

You my dear are going to feel FANTASTIC after the surgery. I just led there staring at my tiny little waste thinking WWWOOOWWWWW I went into hospital a size UK 12 came home a size 6! Im a 10 now :( so enjoy while it lasts. You will have a bit of swelly belly but it will be nothing compared to what it is now. That is where the massive mass cysters differ our swelly bellys are smaller softer and at least we have something to look forward to!

Anna x

[shopaholic]

Hi
I have a large cyst (dermoid) measuring 19cm by 25cm which i will be having removed by laparotomy.  I also thought i was just overweight in my stomach area and only found out about the cyst after having hip pain.  My doctor sent me for an xray and then discovered teeth in my abdomen.  I had no symptoms, apart from slight hip pain which i put down to sciatica and constipation which i thought was from my constant yo yo dieting. One of my ovaries will have to be removed and at the time of the scan they couldnt see the other one so i will have to wait until they open me up to see if i will be losing that as well.  I have been told I will be in hospital for 4 to 5 days and the incision will be from my navel to my pubic area.  Recovery will be 6 to 8 weeks so i have been told.
I found this forum by accident but it has been invaluable to me the people here are wonderful and give great advise (and a good deal of humour which we need at these times. Take care and let us know how you get on.

Shopaholic u.k.

[ywggirl]

I also just wanted to add that, while they're not sure if it's cancerous or not, I did get bloodwork done. Can they really tell from bloodwork if it is cancerous? And if it was, would I be having any symptoms?

Also, for anyone who's had a large cyst removed, how did your body react once it was removed? Is there any massive amounts of swelling afterwards? Since all my internal organs are displaced b/c of this cyst, I'm trying to speculate how my body will look once it's gone, if I'll still have a liver poking out of my back for weeks after the procedure!

Thanks!