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4 months wait to have HUGE benign cyst removed?!

Posted , 6 users are following.

pam1984
pam1984

Hi everyone I'm 31 (no kids yet) and have been diagnosed with a large cyst about 21cm (8 inches) across on my right ovary. I look 6 months pregnant! I saw the cancer gynaecologist last week who explained she thinks it is a "large, benign, mucous cyst". Still need CT scan results to confirm fluid-only (no lumps in it) but obviously good news that specialist thinks it's not cancerous.

The BAD news is that she said I would now need to be re-referred to benign gynaecology, and that they have a wait list (here in Gloucestershire) of 16 weeks. 16 WEEKS!? I'm already huge and in pain! Ahhhh! 

Does anyone have experience of this? Either of being re-referred to benign (do you need to start at back of queue again?), or waiting to see a benign gynaecologist with a large cyst (do they prioritise those of us with big or painful cases)?

0 likes, 21 replies

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  • Bexp66
    Bexp66 pam1984

    Posted

    Hello ladies,

    Can I join your huge cyst family? It makes me feel so much better reading that there are others in the same boat.

    I found an egg sized lump in my abdomen just before Christmas and went to the doctors just after christmas and he told me that I had so much fatty tissue that he couldnt find any lump!! I was so embarrassed that I left and went on a diet! But the lump kept growing and three weeks ago my sister who is a nurse persauded me to to go back to a different doctor!

    This lovely doctor told me that I had a huge fibroid and just needed an ultrasound to confirm it. The ultrasound showed no fibroid but instead a large multilocular cyst - 15.5cm. As it looked a little dodgy the doctor then referred me to the Gynea Oncologist who I saw on Monday. He has said that it doesnt look too worrisome, tha he would need an MRI to rule cancer out and then would referr  me to a different hospital for general gynea. While I dont want cancer the thought of waiting and starting all over again is a nightmare!

    I am waiting for an urgent mri ... which may be another week and then back to the consultant to hear their decision a week monday ... hopefully if the MRI gets done!! But the thought of joining the back of the quue is awful. They cyst is still growing and has gone from a little uncomfortable to painful and I feel nauseous all of the time, I cant sleep and am having trouble weeing!!!

    Anyway it will be interesting to see how we all get on and how quickly the wheels will turn - lets hope for speedy removal for us all!

     

    • louise55264
      louise55264 Bexp66

      Posted

      hi Bex and welcome

      Hope you get on ok with MRI. I'm with you on the waiting times, I've just seen my gynae and now have up to 16 week wait for laproscopy!

      Louise xx

  • e48717
    e48717 pam1984

    Posted

    This is exactly what happened to me.  I really don't think health professionals understand cysts and how painful they can be.  I had shooting pains at night, cramping pains, back pain and vomiting. This went on for months and (like you) I was put on a waiting list, although mine was 'only' 9 months.

    At the time, it wasn't clear if my cyst was benign or not, so I was frantic with worry.

    I went back to my GP several times (I got to the point where I didn't care what they thought of me) and demanded they contact the hospital.

    When I had my cyst removed, they had left it too late to save the ovary as the cyst was completely wrapped around it.  Mine was 14cm x 14cm (so I can't imagine the pain you must be in).

    Oh, and the surgeon saw me the next day, she told me that she found "things floating in my abdomen and did I know what they were???"  No!!!!!  Turned out that it was poison and gunk coming off the cyst.

    I'm now having problems with fibroids (does it ever end?!) and I've been a lot more vocal in getting treatment.

    Seriously, just keep going back to the GP and demand to be brought forward. You need to be firm. I'm convinced GP's just don't get the pain that this causes and how it affects your life....let me know how you get on x

  • philippa59653
    philippa59653 pam1984

    Posted

    Hi All

    So since my last update I saw the consultant following my second ultrasound which showed nothing as the cyst had ruptured and she gave me a follow up ultrasound at the end of April. She said I could go back if I had any problems in the meantime though when I questioned why I was still having pains and my cycle was completely messed up she told me cycles can change as we get older and our brain can make us feel pain that isn't there!!! Was gobsmacked.

    That was ten days ago and about 5 days ago I can feel a THIRD cyst! I contacted her as she said I could but her last day before a two week holiday was Friday and she never got back to me so have just been left! Got an appt with my GP on Wednesday and going to go private. Seriously fed up now!

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