Advice/support/experiences please-ovarian cysts?

Posted , 12 users are following.

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

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260 Replies

  • Posted

    I should have said... I am 44. Still have periods, though they are getting irregular, sometimes heavy, sometimes light, sometimes 21 days between, sometimes several months. 
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    • Posted

      You must be worried sick.Why did they leave them so long and let them grow so big before considering surgery? I have had an 8×8 cm Dermoid Cyst removed along with One ovary and both fallopian tubes 4 years ago and another large Dermoid has now grown on my right side and I will be having that out soon.I have dizzy spells and remembered that from last time.Id no idea the Cysts were there.Im now 46 and have hot flushes,bowel issues and feel blah. I have pain in the right side mainly when I'm leading up to Ovulate and pain lasts until a week after my period.Also a bit of pain I certain positions with my husband.Id imagine as both of your Ovaries are bad at the same time you must be very uncomfortable. I also get stabbing pains in my ribs that is agony.I googled it and it's a strange pain referal from Ovarian Cysts.My periods vary between 3-9 weeks.I suppose as the Ovary ' s are battling to function properly.

      I know how worrying this is and the lack of information and support.

      I only found out I had another Dermoid growing 2 weeks ago and I was gutted but now relieved that it's been found and I wasn't imagining it all,I just thought it was pre menopause.

      My Cyst appears to have calcium and blood and possibly hair in and a small chance of Cancer.My last one had Oily sebaceous stuff and a piece of pointy calcium and no Cancer.So I'm hopeful that it'll be the same outcome.I won't know until it's removed and analysed.

      Feel free to ask me anything.It does help having these forums smile

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    • Posted

      I get stabbing pains if I turn to the side, my neck is sore because when I turn my body to the side it hurts so I try to just move my neck and end up hurting that too!

      I thought I might have been perimenopausal too the consultant says it is probably the cyst altering my periods. 

      I'm hoping they can just remove the cysts and leave everything else intact. I think I may have a lot of adhesions from a cesarean 26 months ago. It was at 25 months ago that they firs found "a collection" in my abdomen and they decided that as I was just after the birth that it may just be reabsorbed by the body and just go away.

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    • Posted

      Hi Marvyee

      I am 44 too our symptom is slightly different .Your period is irregular and mine isn't. Your cyst grew slow and mine grew fast affecting my bowl. I had to have a colonoscopy after my MRI due to my severe constipation and they found endometriOmaha in my sigmoid. So myou surgery will be a major one. I will be having laparoscopy, hystrectomy, and resection of my sigmoid rectum.I am praying for a miracle. I am trying to gett mind of it today since I was toled by the gynaecologist.

      Let me know about your MRI .

      Best wishes and prayer

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  • Posted


    Why have they left it this long?

    I'm surprised you being diabetic Aswell.

    I had an ovarian cyst when I was 19 that was back in the begging of the 80s!

    I had all these same pains. I don't understand why they have left it so long.

    I would press them to get you sorted right away!

    2 years how crazy is that!

    They should have find something about this ages ago.

    I hope you get sorted out now.

    You will feel better when they are gone!

    From liz😀

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    • Posted

      Thank you, I am nervous about surgery and about the MRI and what they find they consist of but I do really want them gone so I can feel better. The waiting is hard!!! It gives so much time to think.
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    • Posted

      You wouldn't be human if you weren't nervous.Ive been in that similar situation twice and given the Cancer chat.Luckily I turned out fine and am putting it to the back of my mind once again now another Cyst has grown.I know my remaining Ovary has to go along with the Cyst and I'll be thrown fully into menopause,great!!

      Congratulations on having a little one,see it as a good distraction and try to focal on the possitive. The stress and worry can drive you mad,and add in a bit of Googling horror stories!!!

      Best of luck with everything x

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  • Posted

    The consultant said that the MRI will be able to say if the cysts are cancerous....can't they do that?
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    • Posted

      MRI ' S show up the structure and contents of Cysts etc and can give an indication of Cancer like structures.Ive had multiple MRI 's and in another unrelated surgery they suspected Cancer but ultimately I had to wait until post surgery and tests on the thing that was removed,it turned out fine.

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    • Posted

      The MRI is fine.You go in a Tunnel and you have to wear ear plugs.The staff working with you will keep talking to you and checking you're ok.I had my spine done recently (which picked up my Cyst) I just tried to keep relaxed and before you know it,it's over.

      I try to stay calm as it sets my IBS off and then I get snappy and not nice to be around.I get busy and try to occupy my time.Distraction really helps

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    • Posted

      Thank you so much. Maybe they will play me a hornpipe or something smile I do hope it doesn't take the full hour!! I had a cat scan before and that was scary but not so long.
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