1. Community
  2. Women's health
  3. Ovarian Cyst

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

Prev Next
  • paula57069
    paula57069 clareyscarey

    Posted

    Hi... I feel i'm living on info sites at the moment..... smile  I found out 2 weeks ago that I had a liquid/solid cyst of 5cm x 3 cm during a check up with my gyne he did a vaginal scan as part of the check up....  I had by blood test done and the CA125 came out at 41... I then had an MRI 2 days ago and then my gyne called to say that they are going to have to take out my ovary by laprascopy... due to the language barrier (Iam living in France) he mentioned what it was, but couldn't explain the name in english... my French is fairly good but not in medical terms and under stress I wilt.... :0 !!  now I am waiting for a call from his secretary for a surgery date... I think the waiting is the worst.... I feel for anyone going through this... I am trying not to be snappy especially in front of my 12 year old son...
    • Bexp66
      Bexp66 paula57069

      Posted

      The waiting is always the worst part. DO you have a date yet? Nothing will stop you worrying and dont be too hard on yourself with regard to being snappy - you have lots on your mind! Can you get an interpreter for your meetings? it must be very frustrating! Can you be referred to a gyn oncologist for the surgery? Or before for a second opinion. In the UK if there is any question about the nature of a cyst you are seen by a gyne onc and then most often they do the surgery, which is usually a hysterectomy ... much better than having to have a second surgery if they find there is anything.

      Sorry you are going through this ... tough times. But ask away if you have any specific questions. Love Becky

    • paula57069
      paula57069 Bexp66

      Posted

      Hi Bex, Thanks for your message... have a date for the 16th July to see the surgeon.. bit of a bummer as we are on holiday from the 11th for 2 weeks.. but we will drive up for the consultation..( we are holidaying 4 hours away and will incoperate trip back with the holiday for my son wink..)  I totaly agree with you..get the whole lot out at once.... I had a laporatomy 14 years ago.. so I know what is a head of me....and don't want to take chances.... am a bit bowled over to be honest..hate 'google'..wasn't there 14 years ago..so lived in blissfull harmony....  I really have no problem with the language, I just go into melt down and a fuzzy head...really it's just the technical terms.. I think I would be the same in English at the moment....  The French system is very good I must admit and they tend to go in overdrive and are hypochondriacs so am expecting the next consultation to be full on and very quick....am all for getting everything out.....   will let you know how I get on and thanks a million for your support it means a lot ..Love Paula xx
    • paula57069
      paula57069

      Posted

      Ps... am trying to keep the snappy jaw under control....(for a bit anyway)...

       

  • MistyBurg517
    MistyBurg517 clareyscarey

    Posted

    I am grateful to be able to read someone else's experience while I wait info for the same thing.

    I go for the MRI this Thursday, hopefully they will know more. Right now my mass is so large they can not even tell me where it starts or ends. Or what it is connected to act. My problem however is that I am a 35 yr old with a very rare extensive cardiac history. I am scared to death because they have never before wanted me to get pregnant, take birth control (high risk for blood clots) or have a hysterectomy because of the compications my other health issues. So this has changed that and made it necessary to do. After the MRI Thursday I should know more but in till then all I know is that the cysts is so large that it will defiantly have to be taken by c-section! Please wish me luck cause I am very nervous to find out what this thing is attatched to and where it will lead. However Thank you cause your story did make some of the waiting less stressful and give me hope!

    • clareyscarey
      clareyscarey MistyBurg517

      Posted

      Hello MistyBurg517. I am still here! And doing well. Nothing much helps during this time I know. But hope is there that this large interloper is only a mtutterer rather that a snarler! A little humour at a dark time. Perhaps you have had a blood test to check your ca125? Did it grow fast? Mine did. Keep in touch and I will be thinking of you. X
    • clareyscarey
      clareyscarey

      Posted

      Ps I didn't mean to be flippant. All good thoughts you way.
  • willowkawe
    willowkawe clareyscarey

    Posted

    It's Willow here. Wow. I've just been reading through this thread and have found it immensely reassuring. It's so nice to know that other folks are going through a similar situation. 

    My story is that I'm 39 and two weeks ago  I got diagnosed with a 21cm x 20cm x 9 cm ovarian mass. CA marker plus other cancer markers are in the normal range. My operation is in four weeks and my tumour is growing a cm each day. The gyn-onc team at the women's hospital are going to remove it. I'll have a frozen section where they analyse the tumour and then will remove parts of my insides in accordance with what they find. 

    My hope is that the tumour won't twist around my uterus or affect my left ovary, both of which are in ok shape. My partner and I have been planning for our first child this year. Fingers crossed.

    I feel a little less sorry for myself after reading everyone's contributions. It's nice to know I'm not alone with my mammoth ovarian cyst from hell!

    I am grateful to have no pain, just discomfort, and a cancer-free outlook at this point, even though time will tell...

    My thoughts go out to all folks on this thread who are facing a cancer diagnosis of any kind. 

    I hope you're all well and am thinking of you. 

    Kind regards, 

    Willow

  • willowkawe
    willowkawe clareyscarey

    Posted

    I should just clarify that my tumour isn't growing a cm each day but a cm in five days! Sorry. I forgot to put the word 'five' before the word 'day'. 
  • clareyscarey
    clareyscarey

    Posted

    This is clareyscarey.  Not sure why my my login has not recognised me.  Hello there willowkawe

     

    Good luck with your operation and family plans.  Although this does not look as though it will be cancer, it is still a big thing to get your body through.  You will soon be on the other side though so very best wishes for a quick recovery.

     

    I am having a big surgery on 9th Feb to hopefully get rid of the bits that remain slowly grumbling.  I am having moments of anxiousness that make me want to reach for several glasses of wine.  However I am not sure that is very good so I need to try and stop!

  • willowkawe
    willowkawe clareyscarey

    Posted

    Hi clarey, 

    Many thanks for your reply. 

    How many surgeries have you had to go through? You sound like you've been through so much. Yes, sometimes it's easy to reach for a glass - it stops the voices in your head and the anxiety, but I always feel better if I don't go there. I keep thinking my body has a lot to deal with and my liver doesn't want a bigger load! 

    I noticed that you went to Paris a while back. Did you enjoy it? I went in September last year. I think it's a remarkable, incredible city. 

    Love to you and hope you're surviving at the moment. 9th of Feb. I'm marking it on my calendar and I'm sending support and encouragement to you wherever you are. 

    Kindest regards, 

    Willow x

  • Guest
    Guest clareyscarey

    Posted

    Hello to everyone here... I am grateful to find this forum and have read every post, not having found another discussion as helpful as this one!  I am keeping positive thoughts for all of you!  Here's my story...

    I will be 45 this month, have had perimenopausal symptoms for about 1.5 years, still have regular periods, and recently have had a complex ovarian mass diagnosed (CT scan report says right adnexa measures 7.7 cm x 4.6 cm).  The only symptom I've had is having to urinate frequently, so I started out with a GP looking to diagnose a UTI, had three urinalysis tests that all showed blood in the urine, and prescribed antibiotics did not help.  Since then, I've had a cystoscopy, CT scan, pelvic exam, and vaginal and pelvic ultrasound testing, plus two more urinalysis tests that were both normal and an extensive amount of bloodwork, including hormone evaluations, that were all normal as well.  The CT scan only shows the enlarged ovary; everything else on the scan report is normal.  In addition to the ovarian mass, the ultrasound shows two small fibroids and one small polyp in the uterus as well as a thickened lining.  I will be having the ovary removed and my gynecologist ordered more bloodwork to try to find out which hormone is involved with the mass.  All I know for now is that I'll be having the ovary removed and will see the gyn doctor next Tuesday when she has the lab results back.  I am trying to keep positive thoughts, but of course it is hard, and like all of you, I've had some very dark moments this last couple of days since finding out about the mass.

    Again, I really appreciate this discussion forum and that you have all shared so much about your experiences.  Reading your posts has really helped me a lot and I send best wishes to all of you.

    Take care,

    Elizabeth

  • clareyscarey
    clareyscarey

    Posted

    Hi all, I am home from surgery and a three week stay in hospital.  They "got it all" and I had a chemo wash through my abdomen.  The pathology came out low grade which means there is a 70% chance that it will not come back.  My condition is pseudomyoxma peritonei, originally diagnosed as ovarian cancer. Apparently I had it for over ten years before it leapt to my ovary.  So, still here and moving forwards. XX
    • Guest
      Guest clareyscarey

      Posted

      Clareyscarey, it is good to hear your results and that you are home and moving forwards after you have been through so much.  Sending positive thoughts and a warm hug your way!

      Take care,

      Elizabeth

  • jm35710
    jm35710 clareyscarey

    Posted

    Hi Clarey, why did they have to take the ovaries out even though cyst was just benign? I too have a 9cm simple cyst and 2cm complex cyst. I'm scared they'll remove my ovaries because I don't have kids yet sad I'm really, really scared.
    • clareyscarey
      clareyscarey jm35710

      Posted

      Dear jm35710

      At first I was told it was not cancer, then I was told that it was, but low grade meaning not aggressive, or slow to develop.   It did not start in my ovaries, was not a gynae cancer, so did not start as a result of hormonal inflences.  It started in my appendix.  

      You need to speak about your concerns with your specialist.  I know about the fear, but without the facts you are having to guess.  This will take you, understandably, along many dark though processes.  Some people take action to preserve their eggs for the future, if it is possible.  But hang on!  You are nowhere near a place where you can know what the options are for your treatment.  From straightforward to complicated, you don't know where you sit.  This is one of those times in life.  All you can do is anything to keep sane while you wait, which I hope won't be too long.  That is the worst part but we are with you! XX  

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.