My experience of huge complex ovarian cyst
Posted , 52 users are following.
More of a story than a question in case it helps some of you get through the scary waiting time. I know that it is really hard as if you have this problem you will be looking for information and realising at the same time that your situation is only yours. I am telling you so that you can hope for a good outcome rather than expect the worst.
I am 50 years old and was still having regular periods.
I noticed my tummy looking a bit humpy on the right side about 3 months ago. I pushed the lump and the hump moved to the left. Trapped wind moving I thought. However it started getting bigger and when I tapped it sounded like a watery whump. It grew up and over to the middle so I looked pregnant. My insides gurgled, I was constipated and had bad backache every morning. My whole back was sore andI felt a bit out of breath. It got better when I stood up.
I could not get an appointment with my GP. Rang many days but missed the available slots. Called again and said I would have to use A&E, which I would rather not, if I couldn't see someone. Pain!
The GP sent me to A&E gynae assessment. Ultrasound revealed huge complex cyst. The registrar said they suspected cancer.
Two days later I saw the gynae oncologist who said the CA125 result was hardly significant bearing in mind the size. It was 70. I was booked in for surgery in 2 Weeks as he wanted to treat it as suspect cancer; respect it. I had a CT scan and overheard he technician saying he had never seen anything like it in his life.
I had a total hysterectomy and removal of my appendix.
After surgery the consultant told me he felt the cyst was benign. I know he would have to feel confident to say that and he does expect the pathology to confirm.
It was a mass of mucus filled chambers with very thin walls and he had to scoop it out as it had become a mush. The appendix was also filled with mucous.
So here I am 5 days post op, gone through the fears, made a will and died many times in my head. Now I just need to get the confirmation of pathology and get the HRT. I will make sure I get testosterone as well so that I do not lose all my pubic hair.
YAY!
9 likes, 178 replies
Regina777
Posted
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
nlkpd
Posted
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!!!!
grace62251 nlkpd
Posted
I am literally going through the exact same thing. What ended up happening? I need some encouraging words.
becky39113 grace62251
Posted
Becky
847 710 3004.
grace62251 becky39113
Posted
clareyscarey
Posted
F1SH
Posted
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)
shanda
Posted
Appreciate everyone's support here. It really helps.
Shanda
deanomatino
Posted
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
Regina777
Posted
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.
Jane_24
Posted
nlkpd
Posted
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.
clareyscarey
Posted
Regina777
Posted
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.
F1SH
Posted
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