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Advice/support/experiences please-ovarian cysts?

Posted , 12 users are following.

maryvee
maryvee

I have cysts on  both sides. left hand side about 11cm, right hand side 10cm. 

I am being sent for an "urgent" MRI in 7 days. Rather worried how I will stay still for a whole hour all by myself in the MRI? Any tips please?

Then I go back to the consultant the week after to see if they are cysts or cancerous and how we will treat them. 

I am having dizzy spells where I feel that the world is turning to the right. Constant back pain that feels like something is pressing on my back which makes me feel like I need to go poo.. Gassiness. I can feel the cysts as painful lumps from the front too. My stomach is hard and stretched. 

I'm feeling very tired from the discomfort and worry.

My appetite is still pretty normal.

Sex is a little painful in certain positions as my tummy is tender and I can't fold up my body properly. I'm not able to move as easily.

They have been "watching" the cysts for 2 years now and have seen them grow from 5cm to 7cm to 11cm. Only now are they doing something about it. 

My Ca125 test was 31 six months ago, it is now 37. 

I'm very anxious and on edge. 

I have no idea what the 'cysts' are made of though my last report said they have a "mild vascularity". 

Also, I am diabetic and I have PCOS.

Any advice or support ladies? I need it to get through this uncertain time.

5 likes, 260 replies

260 Replies

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  • maryvee
    maryvee

    Posted

    I finally have a new appointment for surgery. It is in early September. That is one year since their last attempt at surgery and three years now since I developed these cysts. My right hip is so painful now and my skin over the cysts looks purple rather than normal colour. I can't wait for the surgery to be over with. 

    • dobb34487
      dobb34487 maryvee

      Posted

      I know it's been a long time since we communicated but I've been thinking about you Maryvee and wondered how you are? Did you have the surgery?and what was found?how are you now?

      I feel bad that I didn't see your last message.

      My little granddaughter had been gravely ill (doing ok now ) and I was back and forth to the UK a lot last year!!

      Please let me know how you are when you get a chance.

      Take care 💗 x

    • maryvee
      maryvee dobb34487

      Posted

      Thank you for thinking of me. I did have my surgery and one tumour on the right hand side was removed and they biopsied the tumour on the left. They found them to be benign solid tumours. I feel much better with the right hand side one removed. I am back in hospital Monday for them to image the left hand side to see how much it has grown. It does not make me as ill as the right hand side did. I am dealing with a lot of menopausal symptoms since the removal of my right ovary and they wont give me HRT. Waiting to see what happens Monday..... 

      I hope your little grand daughter is much better now?

      I think of you and hope all is well with you and your family. xx

  • maryvee
    maryvee

    Posted

    Finally have had it done!!!

    The "tumour" as it is now called was removed from the right hand side. The ones on the left have been biopsied and I have to go back for the results. They aren't sure what the cysts are, hopefully benign but we have to wait for the biopsy results.

    My ovary and fallopian tube had been eaten by the tumour so that was removed too. 

    So glad it has been done at last!!!!!!

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