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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

    Managed to eat some chicken tonight..first food in 3 days yay
  • maryvee
    maryvee

    Posted

    I haven't felt as in pain for a couple of days but this morning is terrible. I feel SO nauseous and have so much heartburn. Weirdly I keep having dreams of people I have lost and I think I am just so worried about all this and the slowwness...the interminable wait that my worries about whether it is cancerous, how it will be during and after surgery and the MRI etc  are seeping into my dreams. 

    I don't know if it is the worry or the fact that the cysts are on my ovaries that is making it so difficult to maintain some positivity... my emotions are all over the place and I know this is awful not just for me but for all the people around me. 

    Click here to view image

    • dobb34487
      dobb34487 maryvee

      Posted

      Hi Maryvee,

      You're close now to the next appointment.Just Fuzz your way through each day as best you can.These Cysts do affect your hormones and pretty much every thing else! Are you managing to eat much?drink plenty if water etc.Itotally understand your frustration,remember all that when you see the docs! !! I'm still gobsmacked you've been left this long!!!!!

      I'd imagine your heartburn is to do with them too!!

      I was in hospital....3rd time in a week with Stomach Ulcers!! I'm sure my Cyst has something to do with it...I'm generally feeling blah,no energy,nauseous and in pain.I know I've Arthritis and Ulcers along with the Cyst but I'm sure everything is haywire more so because of it!!!

      You must be thinking about it all the time..The waiting,the worrying..the waiting!!!!!! So I'm not surprised you're dreaming anxious dreams.

      Hang in there x

    • maryvee
      maryvee dobb34487

      Posted

      Yes not long now to Thursday! And I have to work tomorrow as normal. 

      I've eaten 3 and a half days out of 7 which isn't too bad really. 

      How are you doing this evening? Sounds like you are really going through difficulties. I completely sympathise with the nausea and lack of energy. What do they plan to do to help with the ulcers?

    • dobb34487
      dobb34487 maryvee

      Posted

      Hi I'm ok thanks.Just tired and a bit sore. I'm on Antibiotics as docs suspect the ulcers are infected,yuck! !! I'm on Nexium to coat the stomach and Gaviscon in between.i have to watch every drink /food that I take In and not get too hungry as this affects the bile that is burning my Tum. I could really do without this...

      Do you also have brain fog?I forget what I'm doing and don't really take in what's going on?Almost like being pregnant when you get "babybrain" I think it's called. Fortunately my Ovary hasn't tried to Ovulate yet to add to my pains!!!I think I'm 6-7 weeks late,I've never gone longer than 9 so it's not too far off.

      Click here to view image

      Take care x

    • maryvee
      maryvee dobb34487

      Posted

      I am so sorry that the ulcers are bothering you. It's really not what you need right now is it. And having to use the gaviscon etc for meals makes it so difficult. 

      I havent had a period for about 3 months now. Definitely not pregnant. I don't think my ovaries can work with these cysts on them. I am feeling SO sick today it's terrible. Just a couple of mouthfuls of water today. My husband made himself bacon and the smell...ewww. I have nearly reached the day of my appointment. I haven't a clue what to say to the consultant in the morning. Do I tell him how sick and desperate I am feeling? I don't have the MRI until the afternoon so when I see him I wont actually have any new info for him. 

      Is all the bile and heartburn because I can't eat regularly? That would make sense. 

      I do have brain fog! I used to be quite intelligent when I was younger but as I've gotten older I forget dates and people's names and faces.... I even forget common words...like what a microwave is! I think that's a long term issue though. It irritates me not to be able to rely on my memory these days!

    • dobb34487
      dobb34487 maryvee

      Posted

      Thanks Maryvee, I'm doing ok and just taking each day as it comes.Im feeling a bit better but I'm sick of Gaviscon sad

      I honestly think large Cysts that interfer with Ovulating make you feel pregnant and all the side effects that come with it,yours are a fare size so I'm not surprised you're getting heartburn.

      I hope you get some information tomorrow.You should tell them everything and how nauseous and Ill you feel.like I've said before if you were a loud mouthy person do you think you would still be waiting? You need some answers and know that this is all coming to an end.And good luck with the MRI

      Please let me know how you get on,I shall be thinking of you x

    • Ellie1943
      Ellie1943 maryvee

      Posted

      Hi maryvee. If you don't mind me asking, what is your age? I had a para ovarian cyst removed in April. I'm 73 now and was having some strange symptoms and feelings, like pregnancy and menopause together! confused It probably is your cyst causing your problems but could be menopausal if you're in that age group. If I were you, make a list of all your questions before you go, just as a reminder. I know I always forget something when I have an appointment with doctors. I don't have dementia yet but felt like it when when I had the cyst! rolleyes The worst was worrying whether it was malignant or not and thank god it wasn't! smile Anxiety can make us feel quite ill I've found, I make more stomach acid at such times but the cyst didn't help matters of course. My best wishes for you at your appointment. Pollyanna UK
    • maryvee
      maryvee Ellie1943

      Posted

      Hi Pollyanna, I am 44. 

      I'm honestly not sure if I am premenopausal or what anymore! I had periods up to my baby being born 2 yrs ago, then a couple after her birth, then these cysts started to grow. I had a CT scan at that point and they reported a "collection" inbetween my womb and bowel which they said would be hard to drain and likely to disappear by itself. Since then my periods have been weird, sometimes light hardly there, sometimes terribly heavy, sometimes 3 weeks between a period, sometimes 5 weeks. I havent had a period since 31st March now. 

      I too am praying my cysts aren't malignant!!!!

    • maryvee
      maryvee dobb34487

      Posted

      How are you doing now? You must have finished the antibiotics by now? x
  • maryvee
    maryvee

    Posted

    Well ladies I did it. 

    My consultant visit was set for this morning and she just smiled at me, said sorry they hadn't been able to do the MRI last week and better luck this afternoon. 

    She said my nausea and dizziness is likely a result of my anxiety. 

    And asked me to return in a week. 

    We went out found a restaurant and we managed to eat a little chicken, then back to the hospital. They came out to say the MRI wasn't working, but they had another one and they'd try to fit me in that same afternoon since it had been altered once already! I said I'd wait I just wanted it done!!

    She let me get into the scanner and we tried it out and this one I had to lie in feet first. My head still went in, but I could look up and see a bit of the ceiling!! What a better design than going in head first! So I told them I was happy and they put in a cannula and I had towait for space to come up, then they did it. I was in the MRI  for an hour and a half, partially because when they put dye into me, it went into the soft tissue in my arm so we had to run that bit again with a different cannula. They did both an abdominal and a pelvic MRI and said that was it, so I assume my consultant will be able to see the results by next week and hopefully have a plan at my next appointment!!!  I so hope it isn't cancer. 

    I was scared all through the MRI, it isn't pleasant the machine is loud and goes beep and sounds like alarms are going off and feels like things inside it kick and it gets pretty warm over the stomach area. They said they'd play me music but after a few songs the music stopped and the machine is really loud then!!

    At least the MRI is done now. Now its just the worry of what they find.... 

    I think I was brave today! 

    • dobb34487
      dobb34487 maryvee

      Posted

      Well done!!!!You made it through 😀 I know they are Claustrophobic and clanky but serve a good purpose.You should now be a good step closer to your plan/surgery and ending all this.

      They do annoy me with the 'anxiety' card. Of course you're anxious.I don't feel anxious and I'm still having the same issues.i know I've endless other health problems at the mo but I'm 100% sure they are worse now I've the Cyst growing.

      You do sound relieved.

      You were very brave today 💖 and got through it x

    • Ellie1943
      Ellie1943 maryvee

      Posted

      Extremely brave maryvee! smile The worst bits over anyway, now you can look forward to a treatment plan. Keep posting on here for a chat and words of encouragement. There's plenty of that from all these lovely ladies. Best wishesX razz
    • maryvee
      maryvee dobb34487

      Posted

      Thanks so much for your encouragement and support. it has helped so much not to feel so alone with this x
    • maryvee
      maryvee Ellie1943

      Posted

      Thank you so much hon.. I think the surgery may be the worst bit... we will see!! But it is a little easier speaking to you all about it x
    • dobb34487
      dobb34487 maryvee

      Posted

      You are most welcome.It really does help me too.whilst all around us are Sympathetic we don't like to burden them too much and us ladies that are going through this can help each other.

      Don't think too far ahead.ive had 2 abdominal surgeries and I won't lie,I know too much.But you get through and everyone heals differently.A day at a time.

      Just think how great you'll feel when your body and hormones get used to functioning normally again 😁 x

    • Ellie1943
      Ellie1943 maryvee

      Posted

      I'm sure you will be OK as I was. I've had surgery for gynae things three times now and still feeling cheerful and much more comfy. I have another one coming up when I've fully recovered from the last one, salpingo oophrectomy and cyst removal. Prolapse repair. It does take time but worth it for peace of mind and comfort in retrospect. Take care and carry on being brave with all the help you can find on here and elsewhere. Have a good weekend and rest up!  Best wishes, Pollyanna smile
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