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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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  • l95692
    l95692 clareyscarey

    Posted

    Hi everyone,

    Thanks for sharing your wisdom with all of us.

    My story: I am 52 years old, and in 2006 I had a radical hysterectomy. About 3 months ago, I started having pain in my left flank, groins, and lower back. I finally went to my doc, who then sent me to get a kidney CT. Kidney was clean, but the CT showed an "adnexal complex cyst (size of golf ball) with a 2mm septation" on the right side of my pelvis. Weird, I thought, since all the pain is in my left side. Have anyone experienced that type of reverse pain?

    Anyway, after the CT my doctor set me up for an ultrasound 3 days later. The U/S confirmed the cyst, and now doc is sending me to a GYN-oncologist. I have an appointment tomorrow morning. I have been trying not to worry about it, but--as you well know--that is not easy. I understand that, given my age, this thing might have to come out and I worry about the surgical procedure. I had my hysterectomy laparoscoply (sorry for mispelling it), and almost died from a blood clot as a result of the procedure. I also read that laparoscopies are not good for removing these kinds of cysts because of the potential for spill. I will find out more tomorrow, but in the meantime, I thank you for any feedback and for letting me vent my worries.

    Cheers!

     

    • june77782
      june77782 l95692

      Posted

      Hi

      Please try not to worry I know easier said than done. I am

      51 and previously had hysterectomy via horizontal I incision. April felt unwell , doc said bloods ok. Booked myself health screen and they found lump . Up to then not felt that but had felt light headed and dizzy all the time. Had ultrasound and diagnosed with 9x7x7 cm complex cyst. Then sent for

      Ct which was ok. Bloods also ok. Had consultant appointment and

      Surgery was booked for june. At this

      Appointment was greeted by Macmillan nurse which

      Freaked me out. This normal apparently just wish they

      Explained that. Anyhow was actually a benign adnexal amass in the

      Tube which had all

      Twisted and stuck to itself . Had to had vertical cut for this

      Op . Was looked after extremely well in hospital and surgeon was wonderful .

      Lucky as obviously not everyone

      Seems to be

      Getting sAme x

    • livi45947
      livi45947 june77782

      Posted

      Hi june77782

      Thanks for your reply. Glad that it wasn't anything too horrible for you and hope the op went okay? Mum has Her op in 2 weeks. Pleased that hospital are getting things moving. They still haven't t old us what they think it is, they want to now give her an m.r.i scan even  after ct, ultrasound and xrays chest xrays ect. Im worried why they now want an m.r.i.. Kept mentioning the 'C' word when mum had her bloods back. Shes got an m.r.i next tuesday as well as her pre opI. Im really worried if it is the big C. I wonder if they will mention anything at the pre op. I really want to know what this mass is, but at the same time im too scared to receive any bad news. My heads just all over the place.

  • livi45947
    livi45947 clareyscarey

    Posted

    Hello Ladies, I'm new to this site and am writing on behalf of my Mums story so far. 

    I've been reading so many replies in this feed and have found them very interesting and delighted to hear some of you are recovering well. My mums story is somewhat similar in accordance to symptoms, but in terms of the health care and urgentness perfomed by the medical team and the Gynochologist consaultant are far from acceptable. This post is going to be a bit of an essay, however if anyone has been kind enough to adknowlege and read all of mums story so far- I'd love to hear any feedback or advice!?

    So here goes..

    (My mum is 51 and we have been reffered to QA Hospital in Portsmouth.)

    Tracking back to late August mum noticed a lump growing in her lower pelvis area.so she waited until after her period to see if it went away, but it didnt. A few weeks later her stomach was so swollen and tender she looked 5 months pregnant. Went to see our GP to which she said it was an enlarged cyst and reffered mum immediately to have blood tests and a scan at a local health centre. 2 days later at 4am my mum was asleep when she awoke to a jolting sensation where the cyst was and felt alot of contractions across her lower stomach. She went downstairs to grab a drink of water to which I heard a loud thud. I ran downstairs and found her collapsed on the kitchen floor. I rang the ambulance and the fast responce was fantastic, mum came round but with a severly low BP they couldnt often get a reading, She was telling me her stomach was not as large and she couldnt feel the cyst anymore, We all thought it may have burst, so she was admitted to hospital. 

    During her stay she had a chest xray, CT scan, blood tests and ultra sound examination. In the mean time she was nil by mouth ready for op. No operation happened and she was only given paracetamol for pain and liquid morphine to ''help'' her sleep. (didnt work). Mum remained in hospital 2 days waiting for a follow up of scan results, 2 female gynochologists spoke to her and told her she has a complex cyst on her right ovary of 8cm and a smaller one on her left. Her CA125 was 100 and warned her that they are worried its possibly cancer. So what did they do? Nothing! Sent her home that day, we waited for a call as they promised a day later. No call, had to wait for MDT meeting, no call for a further week! At this point we are fuming. However a lovely Mcmillan nurse/ admin to the gynochology ward called us to say she will get back to us for a consaultation date. After many calls getting nowhere, our GP rang and got us in for the earliest appointment which wasnt for a further 2 weeks. So you can imagine how angry/upset./anxious we all are at this point. 3 days before our consaultation we got a letter saying our appointment had been cancelled and that she is now being reffered to another Gynochologist. So from being discharged from hospital we waited a month to speak to someone to find plan of action.....oh it doesnt end here!

    We arrive at the appointment last Thursday, met the consaultant *who I wont name* whos attitude was appauling. He sat us down, stared at us and said ''well, what have they told you then?'' and mum replied ''well theyve told me i possibly have cancerous cysts, i got discharged, a month later I'm here...'' and he then replies ''well, ive got none of your scan results or bloods here so i cant tell you anything'' at this point my blood is boiling and i wanted to lob a chair at him. Why not chase them up? Where were they?

    He examines her on the bed and later asks if shed like an operation- ummmm yes please!

    He told us absolutely nothing appart from ''hmmm lets hope its endometriosis. She has to now do an M.R.I scan and more bloods thats not till next tuesday.

    No sign of a further meeting after that, no operation date in sight- he said at least a month-6 weeks. Absoluletly wrong! How can they treat people like this. Just waiting and waiting. Ive heard so many horror stories where patients eventually get to the operating table and its not until then they realise they have cancer and its spread too much.

    I am so worried for my mum, none of us can sleep and we feel like were put at the back of a line. 

  • Kath_T
    Kath_T clareyscarey

    Posted

    Hi clareyscarey

    I have just posted a request for information before reading your post.  I have a large cyst also 8.7 x 5.5cm and have taken the CA125 test but am waiting for the results still.  I have been referred to a consultant as urgent.

    It is good to read your story and that you are OK.  Can you tell me how they did the operation (was it keyhole), how you felt afterwards and how long you had to stay in hospital for please?

    So glad you are OK.

    Kathy

  • clareyscarey
    clareyscarey

    Posted

    This is clareyscarey speaking. Something strange happened with logging in so I am not sure if I will appear as me. All is going well with my tummy issue. Although I have pseudomyoxma peritonei it is a slow grumbler and I still don't need further treatment. Apparently I might not ever, so the specialists say at Basingstoke. My CA 125 and C 19 (I think that is the) name of it but am hazy, are only very slightly raised and I have a very small amount of free fluid. So, I am doing very well and expect that to continue. Love and hugs to all of you.
  • clareyscarey
    clareyscarey

    Posted

    PS it wasn't keyhole, the incision was from belly button to pubic bone. I have healed well.
  • barbara95038
    barbara95038 clareyscarey

    Posted

    Hello... My  name is Barbara and I'm 28 years old. No kids but thinking about it. Two weeks ago I had a really strong pain in my abdomen area. After seeing a Gyno, he did all the swabs needed (Came out negative) but told me to take antibiotics just in case of a pelvic inflammatory disorder. Also booked me for an US (Ultrasound). The results came with an ovarian complex cyst and history of Policysts. This is only in my right ovary. After this I went to do the blood test for the CA 125 levels. Everyone says that according to my age this will probably be just a complex cyst and it will come out sooner or later with one of my menstrual cycles. But my mom had an uterus and ovaries tumour so of course I am really concerned about this. If the statistics are really low for my case, why would the doctor tell me to do the blood test? Even if it's a bloodying cyst, surgery is not recommended because I may loose the fertility of my right ovary.... Hopefully everything will work out. I just needed to talk with someone that was going trough the same.... Thank you all.
    • clareyscarey
      clareyscarey barbara95038

      Posted

      Hello Barbara, as you can see I am still here! Anyway, it isn't possible not to worry, but try to keep it all in perspective. You already have the likely diagnosis and you will be well looked after. The issues that you have with worrying about your fertility will be discussed with you. There will be strategies that you can choose. Until you know what this is and the course of treatment you are going to need to resign yourself to the wait for what is next. But you are up to that and try not to worry too much. I say never worry unless you must and it has saved me a lot of wasted hours.XX
  • jane68713
    jane68713 clareyscarey

    Posted

    Hi, just read your story with great interest as I to have just found that I have a huge ovarian cyst (hopefully) its so big it wasn't possible to measure it properly, over 25cms! I'm now awaiting CT scan. My CA125 was 87 and as in your case considering its size I'm hopeful that its just a cyst. I'm 49 and my periods stopped about 2 years ago and I just started gaining weight. I thought it was middle age spread and joined slimming world but as I began to lose weight my stomach just looked bigger! My inny belly button is now an outy and I started with period type pain. My GP got the CA125 done and sent me for USS and my gremlin was discovered! Im currently in limbo land but excited to get my waist back thanks for sharing
    • clareyscarey
      clareyscarey jane68713

      Posted

      Hi Jane68713. My issue was pseudomyoxma peritonei. Its a rare slow cancer which starts in the appendix and goes mad when it hits an ovary. I am lucky that it wasn't ovarian cancer but it is still there. Not doing much. They think I had it for 10 or so years before it errupted. Hopefully it will stay quiet for years. Either that or I will have an op to hopefully clear it, using a chemo wash in my abdomen. Responding to you from France. So not doing badly! Do let us know how you get on. X
  • jane68713
    jane68713 clareyscarey

    Posted

    Thanks for your reply! Clare? And oh my lord! From what I read I thought was just a cyst! But great news you are doing so well, I've never been to France but I'm sure it's beautiful! I'm in Stockport lol! I'm a staff nurse and work on an acute medical admissions unit so not use to being on the receiving end which is hard as I can't work at the moment and so use to being busy. I have a gyne appointment for Tuesday but no CT date yet. Will let you know how it goes and to be honest whatever the outcome I just want rid of this pain. My plan if it's bad news is to sell my house buy a camper van and head for Europe on the best ever road trip with my Spanish husband and two jack Russell's lol! It really makes you consider your life something like this eh? And I believe everything happens for a reason! Good luck, stay well and again thanks for taking the time to reply, it's heart warming x
    • clareyscarey
      clareyscarey jane68713

      Posted

      Try to keep calm. Big ones can just be cystic and benign. I know that is hard to do btw! Fingers crossed.
    • clareyscarey
      clareyscarey

      Posted

      Ps. Lowish csa125 is helpful. Mine was along the same lines as yours. Make sure you keep in touch with me. I'm working full time nhs as well. Don't panic.
    • jane68713
      jane68713 clareyscarey

      Posted

      Hi Claire, how's things with you? Just an update from old blighty. Had CT and cyst is 23x22 and after that I can't remember lol! It's fluid filled with chambers and fluid in my abdomen. I've been referred to Christie's under the most senior surgeon there so I'm a lucky girl! I go on the 12 march and hopefully get a date for my opp. So ready to get it out and full hysotectomy . fingers crossed all done soon as pain and lethergy driving me mad now. Hope your well. Jane x
    • Bexp66
      Bexp66 jane68713

      Posted

      Hi Jane, I am glad that you have a date for your next step. I am on a similar path as you - 3 weeks ago discovered I had a large complex ovarian cyst, 15.5cm so not quite as big as yours! I have seen a consultant and had the MRI today and am back for the results with the consultant on Monday. He will either give me a date for an op or will be referring me back to the general hospital if it looks pretty much certain to be benign. Then back on a waiting list! I know it has grown since  the last scan and I am just hoping that either way the wait for an operation isnt too long ... it is very uncomfortable isnt it?! It will be nice to keep in touch with someone else going through the same thing? x
    • clareyscarey
      clareyscarey jane68713

      Posted

      Hello yes am doing fine. This bit of the journey is hard. But it passes. Here if you want me any time. Xx
    • jane68713
      jane68713 Bexp66

      Posted

      Hi Bex, I'd like that a lot. A difficult path for us both eh? Good luck with your MRI results and I will keep you posted from my side. A problem shared and all that x
    • bev14365
      bev14365 jane68713

      Posted

      Hi jane hope your well my cyst was 23 by 22 i had it removed last june named it bernard the bas---d when it came out it was 6ld in weight had everythink removed lost a stone in weight straight into menapause with avengance now im doin ok put loads of weight on thou just havin bloods for underactive thyroids as i am physically fit active job x
    • jane68713
      jane68713 bev14365

      Posted

      Hi Bev, glad to hear that Bernard is out! Named mine animal out of the muppets and I think he knows his days ate numbered cos he's giving me some right jip! Lol! My periods stopped about 2 years ago, I don't know if the cyst caused early menopause cos I was 48. Do you mind if I ask how old you are? My weight gain has been so gradual since menopause it just crept up on me. Joined slimming world and lost 7.5lbs but as I lost weight it became more painful and that's how I ended up at GP. I suppose going into a sudden menopause would cause some weight gain but if it is your thyroid it can be controlled. Thanks for sharing x
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