My experience of huge complex ovarian cyst

Thank you Carol for sharing your experience which is so reassuring. Your recovery sounds like it is progressing really well particularly with the additional operation and the size of the cyst. I was told I would not be able to drive for 6-8 weeks so to hear that you are driving and doing housework after 5 weeks is amazing.

It helps to know that I am not the only one to have these concerns and fears. Incredible how this forum brings together women from all round the world.

May you continue to return to full strength. Best wishes for all good things in 2014.

Regina - UK

hi all-

a few weeks ago i noticed a bump in my lower abdomen. in both october & november, i had double periods. with these few things coupled together, i called my doctor right away. i was able to get in to see her the next day (christmas eve) and she said it was either another cyst or a fibroid). i had a decent size cyst 11 or 12 cm removed in 2011 that had been watched for 10 years or so. it was benign. the surgeon seemed confident of this from the beginning and didn't feel necessary to take my ovary (which she didn't). they never recommended any follow up. after that, i only went to my annual check ups, the last one being this past may.

after my doctors appointment on 12/24, she send me for an ultrasound 2 days later. they muttered but didn't say much (they never do, at least in the US). they did say of course i would have a bump and feel the need to urinate a bit more frequently due to its size…19cm! they seemed relatively calm and i said i'm happy to have it removed asap and the only thing i was concerned with is that it wasn't cancerous. the ultrasound technician said, it's too big to be cancer. then the lead dr came in to review and he also muttered a lot and looked at it 9 million different ways…he said he thought it could be benign and maybe possibly borderline malignant, but didn't really use those words again. i left feeling a sense of urgency to have it removed due to its size and the fact that it popped up out of nowhere, but not afraid for my life.

when my doctor called me 2 hrs later to review the findings, she just would say it's either benign or borderline malignant so i'm sending you to a gynocologic oncologist. at these words, i just about fainted. i went into total shock and am still there. i have no symptoms aside from a bump on my lower abdomen that i noticed maybe 2 weeks ago and feeling like something was pushing on my bladder.

is this precautionary???? I'm 37 yrs old, no history of cancer in the family, healthy, no other medical issues. i know nothing can be confirmed until the surgery which they say will be booked asap, but i am absolutely a wreck. any words of wisdom or anything to help calm me is very much appreciated.

thanks so much!!!!

It takes a while to get your head around these things and that mostly happens after you get the information you need. I had large ovarian cysts that came and went over time. My condition is borderline, originating in my appendix but the main symptom was my very large mucinous ovary. Other borderline diagnoses involve only the ovary. The same as benign ones, which it sounds like you have every reason to hope for. It could well be that this is your situation. I have read positive comments about he prognosis for this. It is difficult to stop contemplating disaster I know, but hang on, breathe and try to get the fear in control. It won't help much at the moment but I can tell you that you will feel a lot better about this that you do now.

Hi Carol, lovely to read that you recovered so quickly from your op, it fills me with hope. Especially that you feel a lot better than you did before the operation, as currently I feel awful.

Regina, looks like you and I will have our recovery together as I'm scheduled for the day after you. I know, I too was hoping to loose at least a stone with the removal of this cyst and all the other bits and bobs. To read about weight gain was a depressing thought to say the least.

And thanks to all the other ladies who have shared their experiences also. It helps make me feel I'm not so alone going through all this, altho... sometimes I can't help but feel alone being widowed and all my family living on the other side of the world. But Thank God for wonderful friends at a time like this.

Since I last posted I've had my CT Scan, seen the Oncologist Gynecologist and have my operation scheduled for the 7th Jan. The cyst is 21x19x17 - I hate the thought of this alien 'thing' growing inside of me and can't wait to have it out.

I've been feeling mostly positive about this all to date as my Consultant also assured me that the odds of it being benign is very high due to its size. That's not to say I haven't had my moments of feeling down.

Also, as a smoker I'm trying desperately to stop but failing miserably most days, despite sticking on my NRT patches but have at least managed to cut down drastically. I want to be healthy for the op and recovery. Did anyone end up with a chest infection after their surgery?

I've been trying to read up on what to expect post op but I guess it is all a very personal thing. I want to try prepare as much as I can before I go to hospital in so far as practical things go. Anything you can share would be most appreciated. Whilst I will have friends stay with me post op, I live alone so want to buy anything I may need before hand.

Wishing everyone a healthy and happy 2014. (Sending you warm thoughts and hugs nlkpd/Regina/Shanda...as clareyscarey says...hang in there. A few months from now, its going to be nothing but a memory)

Yes, Thank you to everyone for sharing their experiences. I am just preparing for my first follow up exam on my cyst today. It is really still a rollercoaster of emotions. I am typically not an anxious person. I usually feel empowered to know what is going on. But since they cannot really know what is going on for sure unless they take this out...I am assuming that is where my anxiety comes from. I doubt the ultrasound technician will tell me anything today. I will probably be looking to talk to my doctor in a little over a week about the exam today.

Appreciate everyone's support here. It really helps.

Shanda

It is a very worrying time - I do feel for you all, Regina, nlkpd, F1SH and Shanda.

I was an absolute mess prior to surgery as after the CT scan they told me there were some suspicious areas.

Thinking back, I would have been a lot better if I could have had more positive thoughts. - I am by nature a very positive person - not this time though. It is mostly fear of the unknown, and wanting to rid your body of this grotesque alien thing.

I can assure you all that I am almost normal now, just can't hang out the clothes (the stretching thing), and except for the scar I don't feel a lot different. I do get very tired though and have to have a nap mid afternoon, but that could also be an age thing lol.

Prior to the op, I did ask the surgeon what is the prognosis if the cyst was cancerous and he told me that it was very good for a cyst of my type.

F1SH, I am also a smoker and the non smoking thing was almost as bad as worrying about the op. A few days before, I got myself a couple of electronic cigarettes, and they were marvelous. I smoked them on the day before the op. The first couple of days after the op, you really don't feel like smoking and I used it about the third and fourth day. Then, I really didn't feel like smoking at all so stopped all together. I have to admit though I weakly started again after I got out of hospital as I was concerned about putting on weight. At least now I know I can give up. I did get a cough after the op, but they told me that was because I had stopped smoking.

I will be thinking about you all getting ready for surgery and I know the outcome will be good. Take care of yourselves and try to make sure your bodies are in the best possible condition before the op. I did, and I think that did help.

Please don't hesitate to contact me if you want. I am happy to help if I can.

Take care - it will be all over in a couple of weeks - I agree with you clareyscary,

Lots of love and positive thoughts - Happy new year - Carol

Thank you Carol, Clareyscarey and F1SH for your messages and support. It means alot to hear from those who have been through similar experiences or are currently going through them.

My pre-op is tomorrow and operation on 6th January. I am keeping busy and getting as much done as possible at home and in the garden before the 'long rest', I have taken Clareyscarey's advice and am taking propolis tablets and also vitamins plus eating lots of good things as well as exercising.

Positive thoughts and good wishes to F1SH, Shand and anlkpd - together we can get through this.

Happy New Year to all on this Forum, we all deserve good health and happiness in 2014.

i am reading with interest these experiences, i too have been diagnosed with a large ovarian cyst i am 51 Regina for messaging me . I am waiting for a date for surgery good luck to everyone in same position. not an easy time for us and so frustrating and worrying .

hi everyone-thanks so much for your prayers and concern. i've had my surgery and am 1 week post op. it ended up being a borderline malignant tumor, but not cancerous. they took out my ovary, fallopian tube, lymph node, ovum and appendix as a precaution. i think i'm still in shock and upset but am trying to look at the positive. i wish it could have simply been benign, but am grateful it's not cancer.

i'm told all i need to do is be screened every 6 months or so. anyone else have a borderline situation? i'm still so scared of this returning (although they took out the ovary that produced it) and they say that it is unlikely to return.

this has been the scariest 2 weeks of my life. i'm hoping to get my head around all of this information, but i'm just still so stunned.

That is just terrific. Try not to worry now. It takes a while for the shock waves to calm down but they will. Believe what you are told. Sometime soon this experience will start to make you look at life through a different lens. Life is for living, not messing about! Many hugs to you.

Hi all, it's a week since my operation which was on Monday 6th Jan and I was discharged a day early on the Thursday. The op went ok, no complications. They took everything out, the tumour apparently looked like a haggis and was very smooth sided. I have a hospital appt next Wednesday so will get the results of the biopsy then, really hoping and praying all be ok.

Still a bit sore where the stitches are and abdominal area but increasing my walking everyday, I did a 25 minute walk today and energy levels pretty good, although resting as that is the advice everyone gives.

Best wishes to all those awaiting operations and also all those recovering.

Would welcome any recovery experiences particularly from first couple of weeks.

Hi All, its been 10 days since my operation (7th) to remove my cyst, which was accomplished successfully albeit 'tricky' according to the surgeon, still attached intact to the ovary all the other bits. I was very relieved when I heard that. I developed a complication of internal bleeding on my second day and had to be taken back to theater for a blood transfusion - 4 pints - as well as investigation into where/why as well as insert a drain. I felt very weak for my first few days, followed by one or two strong days and then all of a sudden I just felt awful which resulted in copious projectile vomiting, but once I had that under control its been a steady day by day progress towards feeling stronger and stronger. Because of my complication I ended up staying in hospital for a full 7 days.

These past 2 days I have felt relatively pain/discomfort free so I found I've been sleeping a lot, which has left me feeling very refreshed and energized. So much so I'm going to venture a short journey to the shops tomorrow with a friend to do some food shopping whilst she pushes my trolley and carries my bags

I hope it's not going to be too much, but I so hate sitting doing nothing.

I'm now at the stage where my wound/clips are itching like crazy (good sign I think) so can't wait to have them removed next Tues so I can start to rub in some bio oil to relieve the itching along with the arnica cream as I'm amazed at just how many bruises I have all over my arms, hips and buttocks not to mention the big haematoma on my pubic bone. All of them a delightful inky purple

I have about another week to wait for the results of my cyst/biopsy's and still trying hard not to think about it until I get the result.

But all in all, even with feeling bruised and battered I feel soooooo much better than I did before the surgery and I'm 6kgs lighter....woohoo! Good news also is I've been off the fags since the op so I'm hoping this is it for me and I can kick the habit once and for all.

Glad to hear your op's all went well Regina/nlkpd. Try to stay positive nlkpd...harder said than done, I know.

Lx