Been told ideally they will do hysterectomy... :(

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So this is my second large cyst, first over ten years ago and they removed the ovary and tube too. This on is growing quickly and its now over 12.5cm long. I also have some thing called hydronephrosis., which I've found is something with fluid in the kidneys.

I'm 31 and have two children, but always wanted more. The thought of having that choice taken away has sent me on an emotional rollercoaster! Add to that going through menopause as a result of that operation and its such a hard place to be. I know I'm lucky that there are no signs of cancer but I feel so angry at my body for doing this.

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8 Replies

  • Posted

    I completely understand and just wanted you to know you are not alone.

    I am having a total abdominal hysterectomy on 9th July due to a large cyst on my left ovary and a slightly smaller one on my right ovary. I have just turned 40 and have 2 children. Our family is complete but I still feel a sense of loss. I too am scared about the menopuase. In fact it terrifies me. I have bad endometriosis too.

    I understand what you are going through and you right it's such an emotional roller coaster. Try not to read up too much as I have found it scares me even more buy try to be prepared with reading some good reptitable articles on well known websites. There are lots of horror stories out there but also lots of success stories. Easier said than done but try to stay positive.

    Have you a good network of support. Have they said how long before op and whether it will be abdominal or keyhole?

    Take care

    Julie x

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    • Posted

      Thank you Julie, it is good to know I'm not on my own. I have avoiding reading too much as it is terrible some of the stories you come across. Have you had any counselling before your op? or is there much you can do to prepare?

      I'm not sure of a time scale just yet but have a consultant app on Monday so hoping to get some answers then. My last op a big cut but it was emergency surgery. But I'd imagine with the size of the cyst this could be the same.

      Andrea x

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    • Posted

      Hi Andrea.

      Keep a notepad handy for the questions as you think of them so you are prepared for your next appointment.

      My consultant has been very upfront and has said that whilst I am having such a big operation that he would advise a full hysterectomy otherwise it's more than likely I will be back in for further operations. He also feels it's unlikely my ovaries can be saved. My CA 125 levels are rising and with the endometriosis he feels it's best to remove everything so i can start living my life. My periods are horrendous. I literally flood, passing large clots (sorry if tmi).

      Definitely dont agree to hysterectomy if you have any reservations. It's your body and whilst they can advise, the final decision is yours.

      I am scared beyond scared and whilst its mainly the menopuase that scares me the worst I can't keep letting all these other problems stop me having a better quality of life.

      Yesterday my period started and I have today felt awful but knowing it's my last ever one is keeping me going.

      I have read some good success stories after a hysterectomy and the menopause but that can only be an option if you are sure.

      Take care

      Julie x

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  • Posted

    Hi there smile

    I had a 16cm cyst removed 3 weeks ago. The specialist was adamant that I need a full hysterectomy. However, I'm only 22 so firmly put my foot down and said I would not allow it. On each appointment I told them that I would not have a hysterectomy. Anyway, the surgeon managed to get the cyst out without even taking an ovary! Turns out there was another 6cm cyst on my other ovary too but I got to keep everything. I have been told that when my family is complete I will have to have a husterctomy but please don't let them take away that option for you without trying every other possible avenue first xx

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    • Posted

      Thank you Megg, I have so many questions to ask them, and the main one being is it totally necessary! I am very lucky to have two gorgeous daughters and to have conceived them both with just one ovary. I've got myself signed of work as the emotional stress alone is pushing me and the pains r getting worse now. Hope your recovery is going ok.

      Andrea x

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    • Posted

      Best of luck. I really hate the way they focus on it medically and not personally. It's your life so they can't take anything smile especially with no concern of cancer! Mine was pre ovarian cancer and they still managed to let me keep it all.

      Recovery is going very well thank you, I hope you get the answers that you need! Xx

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    • Posted

      Hello smile

      I had an 8 inch vertical laparotomy. From my belly button down. I had an afternoon operation so didn't get out til 6pm. I would've been able to go home on Wednesday had I not been sick on the Wednesday morning so I was in Monday afternoon until 10am Thursday morning smile.

      I was up and out of bed on the Tuesday to have a sit in my chair etc.

      Please do let me know if you have anymore questions smile xx

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