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My experience of huge complex ovarian cyst

Posted , 52 users are following.

clareyscarey
clareyscarey

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. sad

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. sad

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! smile

9 likes, 178 replies

178 Replies

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  • pams5kidds
    pams5kidds clareyscarey

    Posted

    So, here I am 4 days post op. My Dr dissagreed with the diagnosis from both my gyno & two CT radiologists, who said I had a large complex ovarian cyst. My gyno/onc thought it "felt" more like a degenerative uterine fybroid... & low & behold, he said that's what it was after my surgery. I still have to wait for pathology report tomorrow, but he was confident enough in what he saw that he left all my lymph & my right ovary in place. Turns out it was the size of a honeydew melon... Which now explains all the gurgling, back & hip pain.

    The surgery was done robotically (5 holes using DaVinci) & a 4 inch transverse incision to remove all the parts! Only took 2 hours & 6 minutes. Surgeon video taped it all for me, so I'm hoping we can have a popcorn/movie night after I (Lord willing) get a good final report tomorrow.

    Best wishes to anyone else out there going through this type of experience!

    Blessings, p

    • clareyscarey
      clareyscarey pams5kidds

      Posted

      Delighted for you Pam. Good luck on the final report but needless to say you do deserve some pampering after all that!  Hopefully something nicer than watching a video of your op. smile

       

    • bev14365
      bev14365 pams5kidds

      Posted

      Hello im new to the site can you advise me i have a 22 cm by 13 cm cyst seein gyn on friday but all day today ive felt sick and headache is this a side effect   Thanks bev
    • clareyscarey
      clareyscarey bev14365

      Posted

      Bev, all that pressue in your abdomen will interfere with your digestion. A headache is hardly surprising, you must be stressed. It has been quite hot where I live and if it has been like that for you, make sure you have had enough fluid. Feeling sick doesn't help with drinking I know but you can start o feel quite poorly without enough to drink. If you get a temperature call your GP or make sure you see someone quickly.

       

    • bev14365
      bev14365 clareyscarey

      Posted

      Clare thankyou for your reply been to see gyn ive had bloodworks done and im having a ct scan on wednesday they are taking it out within in 5 weeks depends on the ct results as to how soon  scarey times i feel im not worrid but i suppose deep down you do x bev
    • clareyscarey
      clareyscarey bev14365

      Posted

      You will feel so much better after the op. Let us know how it goes. Keep your head up and well done for not worrying too much. I have become better at not worrying until I have to after my experience and you will too. It is one hel- of a journey but you will get to the other side.

       

    • bev14365
      bev14365 clareyscarey

      Posted

      Thankyou for taking time out to speak means a lot its always comforting to speak yo other people who have been through simular i will let you no how i get on ct wednesday gyn again friday for results i just wish this nausier would ease but im sure its nerves . Thanks bev
    • bev14365
      bev14365 clareyscarey

      Posted

      Hi clare hope your ok had results of ca125 and ct today consultant  is 80 % sure its benign he wants it out asap he says it is very large he also advised to remove everythink 😷
  • joan34059
    joan34059 clareyscarey

    Posted

    I'm finding this thread very interesting and somewhat reassuring. I went to my doc at the end of March as I was having irratic periods - heavy and long ones too. He said it was natural cos of my age (47) and got me booked in for a scan which showed a cyst and also some abnormal thickness of the womb lining. 2 months later I'm about to have the cyst (5.5cm??) removed. It's not so much that which scares me despite hating the thought of what will happen, but it's the pain which has increased over the past week, indigestion, bloatedness, bladder control, constipation, weird sensations around my vagina. Is this what you have experienced??I'm just worried that there's more bad news to come
    • clareyscarey
      clareyscarey joan34059

      Posted

      Hi Joan

      I certainly had all of those, every one. Plus stabbing in my thigh. I know all about the scares, but try to keep them down. None of this is pleasant and it is all so personal. I think I said before how everthing I though in this journey about my diagnosis, was wrong. The two friends I have who have, in fact, had ovarian cancer diagnosed, are both clear following surgery. I know, not even radiotherapy or chemotherapy. One had it ten years ago, the other two years -- but she is expected to remain clear. Yet, when you read about it...well, it all looks different. I am not denying that things are very hard sometimes, because they are. But, my advice is to keep plodding on, be optimistic as well as realistic; try not to worry and come to talk to us any time you want! X

       

    • clareyscarey
      clareyscarey joan34059

      Posted

      PS , I replied as I did because you expressed concern about bad news. not because I think you have anything particular!  Just thought I should clarify as I don't want to spoil your day.X

       

    • Kellers
      Kellers joan34059

      Posted

      Hi Joan, have you had your op?  let us know how you get on.  I have pain, constipation and that weird sensation you mention.  My ovary has been described as bulky so having ct next week to see what it is - very scared what that will show - just hoping it is a cyst - about same size as yours too.
  • joan34059
    joan34059 clareyscarey

    Posted

    Hi!

    Thank you - I'm so pleased that there is a forum to share these experiences!

    It just feels weird that these pains and other things have just appeared in the last week - or perhaps I've not noticed them because of being wrapped up in work and whatnot...

    I only got informed that I would have the op on 14th May... and then got the date the following evening, so it's been very sudden.

    I've had the blood test CA125 - what does that find?

    Don't worry about spoiling my day - I have a dissertation deadline to meet for tomorrow so I'm consumed in that too much to have any additional worries. I'll wait and see what happens come Wednesday for that.

    Thank you again smile

  • june77782
    june77782 clareyscarey

    Posted

    Hello ladies

    this site is a breath of fresh air and I have been following your stories for weeks (much to dismay of hubby who thinks I will stress myself even more).  Bit long winded but had not been feeling well, no pain but headaches, palpitations and dizzy all the time. My husband has In operable tumours and has been having chemo and I just thought it was stress. Went to gp in February who did ECG and bloods and said I was fine. Had been taking hrt patches as flushes and not slept forever (hysterctomy 9'years ago aged 42) only for four months but thought perhaps they causing dizzy spells so stopped and not sleeping any way as worried about my husband. Started getting lower back pain and in the end booked a health screen. During examination doc felt a lump. Was so panicked, found an ultrasound place near me (60) who saw me that day. Diagnosed with a septated ovarian cyst, has chambers, fluid, thick fluid, some blood flow and recently found out has nodules ( not liking the sound of that). I got an appointment from my gp on the two week referral and have an op date for 9th june. This will be eight weeks from diagnosis. This is the longest eight weeks of my life, I have been through every scenario in my head. Now am uncomfortable, pains in my ribs, back, get indigestion and been getting pains in my lower leg. I have been near to tears on many occasions and this site has helped so much with that. Knowing I'm not alone and others experience these symptoms. I have already signed my consent form, removal of cyst, both ovaries then plus or minus omentum, appendix and lymph nodes, depending on what they find as biopsy whilst I'm under. Did anyone  else have this on their's. What also scared me is when i consultant he McMillan nurse in the room. My bloods and ct have come back okay but I'm still worried sick and keep thinking is there are any dodgy cells in there it could be roaming all over the place. Sorry gone on but have bottled this up for weeks and finally took the plunge to write it down. Hope all you post mop ladies are doing okay and we'll on the way to recovery

    • monicaincanada
      monicaincanada june77782

      Posted

      Hi June:

      I, too, have been reading here for weeks but your surgery date is the same as mine so I thought I'd respond.

      ClareyScarey is an angel to stick around a year after her surgery to encourage all the scared newcomers.  God bless her.

      I'm 49, premenopausal, with a 14X13X10 cm cyst on one ovary and a smaller one on the other.  My CT scan says complex, multi-sepatated cyst and I was sent to the gyn-oncologist at the biggest hospital in the city.  He said "suspicious" and I signed the same consent form you did.  

      I have all the symptoms you mention and am on two laxatives and constant water drinking to keep things moving since the cyst is pressing on my organs. I'm getting hot flashes for the first time, my stomach is distended, and having weird, vague pains all over the region.

      I'd like to be here telling you how my story turned out, but for now I just want you to know you are not alone and we will be having our surgeries on the same day -- even if you are across the pond. 

       

    • june77782
      june77782 monicaincanada

      Posted

      Hello Monica 

      it is so nice when you hear that someone else is experiencing the same symptoms. It is all so scary and I'm sure your mind plays tricks. It is easy for people to say try not to worry but when you laying awake at night it is easier said than done. 

      Yes she is angel, these updates help enormously. 

      Mine 9x7x7 from memory and is on the left.  Being 51 and going throught the change (according to blood tests) worries me.  Hopefully will lose some. Weight after surgery, as has been impossible for months. Feel bloated all the time and weight has gone up and up. What did you sign for on the consent form?

      scared about op but at the same time can't come quic enough xx

    • monicaincanada
      monicaincanada june77782

      Posted

      I know exactly how you feel, June.  Today is two weeks till our surgeries and I decided to stop trying to eat actual meals because I get so full so fast.  My weight is climbing up and up too.  And it's not from eating more.  

      Yes, I signed everything on the consent form.

      I lie awake at night too, and wonder how much bigger will this get in two weeks?  I have been icing it -- not that it helps -- but why give it a warm, comfortable environment?

      You don't deserve this. I pray we both can tell our stories in a few weeks with happy endings.

       

    • june77782
      june77782 monicaincanada

      Posted

      Fingers and toes crossed Monica, I will think of you on our surgery day, at least I won't feel it's only me x
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