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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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  • gardenfanatic
    gardenfanatic clareyscarey

    Posted

    Hi, I've read through this entire discussion and it has given me hope and comfort, as I am struggling with what everyone else on this thread has been struggling with.  I'm wondering how people who have posted are currently doing, as no one has posted for 7 months, which is rather concerning.

    • clareyscarey
      clareyscarey gardenfanatic

      Posted

      People tend to write when they are stuggling.  I am here and back at work full time even!  I only update when someone posts. 
  • polly1873
    polly1873 clareyscarey

    Posted

    I have read the whole thread and although I am very frightened I take heart from all you have been through and that you are back at work smile

    I went to my doctor with gall stone pain and the subsequent ultrascan showed a cyst on my ovary and some hard lumps. Today after waiting over the Christmas for an appointment for the results of the CT scan they said they would have to operate and I had more blood taken as my previous showed they were a bit 

    higher than normal. It is around 10cm diameter and I also have gallstones (haha)

    They said the op will be asap and will have an MRI if the the date for that comes before the op date if you see what I mean.  I am over 70 and very frightened, they could not give me any idea if it might be cancer (reasonable) but I am also afraid of the operation itself in case I don't come out of it.  I am holding up reasonably well but dark thoughts come in the night and I wish I knew of something to do that could be positive, like changing my diet or whatever. I do not drink or smoke. 

    Very pleased to see so many people coping and recovering.

    • clareyscarey
      clareyscarey polly1873

      Posted

      Dear Polly

      I can say that I know how you feel because I have felt the same.  Time makes things softer and this will be the case with you too.  One of the hard things is girding your loins to get answers and deal with things when you don't know what they will be, whether straightforward or less so.   Sometimes it is one foot in front of the other until the next step shines through the dark.  I am sure that the surgery will go well.  I had so many I should know!  I will be thinking of you and sending hugs. Please make sure that you let us know how you are.  None of us need to be lonely in hard times.  Keep as you are and try to stay away from dark thoughts if possible.  One thing I can say is every time I thought I knew something I was wrong.  None of my diagnoses were what I thought they were after spending hours researching.  All power to you. 

       

    • polly1873
      polly1873 clareyscarey

      Posted

      Thank you so much for your post, it does give me heart. I have written three previous replies and they disappeard so I will try later in the day but it is good to hear from someone who knows how it feels.
    • polly1873
      polly1873

      Posted

      I have been to the hospital today and have been passed as fit for a hysterectomy. I will be going in early tomorrow and will be in for 3 to 7 days depending on how I am and if they can do it by keyhole or not (suspect not).  I am happy that it is being done but terrified of the operation at the same time as all operations have a risk.  It is good to know that others have had a good outcome and I will come back and report what happened.
  • donna89362
    donna89362 clareyscarey

    Posted

    I hope you are still responding to this. I've read all of the responses and they have been helpful. I'm 45 and have had my fallopiant tubes removed due to cysts on my ovaries. I have ovarian cancer on both sides of my family...sigh. I recently started having bleeding between my periods and no matter how often I'm in the gym, this belly isn't going anywhere. Well I made an appointment with my doctor and she sent me for an ultrasound. I now have a right complex cysts and some of my fibroids have grown. I have to take the CA125 blood test tomorrow and needless to say I am terrified! It looks like I'll be having surgery one way or the other. I don't know if I have time to have a second opinion...ugh!

    • clareyscarey
      clareyscarey donna89362

      Posted

      Hi there, I know how you feel and how unreal and scary this time is. Well done for getting checked quickly although I have always wished I could get on a bus to a faraway sunshine beach at those times. You will get through this test. The answers may ne different than you think. The worst bit is not knowing. I will think of you in the next days. Please tell everyone how you go. Many hugs.
  • samantha73492
    samantha73492 clareyscarey

    Posted

    Hi I hope this finds you doing well. I have read through all the posts on this forum and they have been very helpful. Thank you.

    I hope you don't mind but I was hoping for your opinion, I am 49 still have regular periods and have been diagnosed with a large complex ovarian cyst my CA125 is 95. The thing is the consultant has said his advice is a total hysterectomy but it is my choice as the cyst is most likely benign. But if after they test it post surgery it isn't benign it would mean more surgery. I completely convince myself that I should just go for and get it over and done and then panic that I may needlessly be removing healthy organs!

    To add to this my CT results show I have an enlarged lymph gland in my chest but they believe it is not related to the cyst.

    I feel as though I am going round in circles and honestly just want to run away!

  • emma02833
    emma02833 clareyscarey

    Posted

    I'm currently only 14 with my second ovulation cyst. The first being a simple 4.4cm cyst on my right ovary about 3 months ago, the second (which i currently have) is a complex 7.4cm cyst on the same ovary. It is the most painful thing I have ever experienced. I was put on an oral contraceptive to eliminate the cyst which so far hasn't worked. I am now pending for surgery

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