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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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  • anne99761
    anne99761 maryvee

    Posted

    Hello maryvee,

    Sorry to hear of your worrying journey. I've just gone through exactly the same as yourself. I had two cysts, 13cms on the right ovary and a 6cms on the left ovary. I had exactly the same symptoms, feeling dizzy, nauseous, pain in back and going into the ribs, etc. my CA125 was 39. The cysts were both complex vascular and a solid area in the bigger cyst which the surgeon was not too happy about.  However six weeks ago I went through an operation to remove the ovaries and I decided to have a hysterectomy as well as I have no further use for any of these as I am 58. I was in hospital for two days and came home on the third and rested up....no lifting, bending, carrying, pushing, pulling etc.....I am perfectly well and feel great. They will tell you a week after the op the results of the biopsy...mine were benign. It sounds like you are the same as myself. Don't worry about the MRI the nurses talk to you and it isn't a full hour.  Good luck. Xx

    • maryvee
      maryvee anne99761

      Posted

      Thank you Anne, your story gives me some hope. 
  • chanelrly
    chanelrly maryvee

    Posted

    Hey, so I kinda skimmed through all of your replies and discussions so excuse me if I missed any points.

    So background for myself, I am 21 years old and I have 9 cm cyst inside my left ovary and I am scheduled for surgery on 06/09 which is in a couple days. CA125 markers are high and think it is a possible endometrioma. From what I read, You might have some sort of endometriosis which can cause cysts to grow in various places in the reproductive system so only way to treat it is by surgery, hormone treatments, or thorugh Birth control pills but they only prevent it for short term. Anyways as for your MRI, you can talk to your Doctor and tell them that you are claustrophobic and they will give you Xanax or something to calm you down. I did that and it worked for me.

    • maryvee
      maryvee chanelrly

      Posted

      Good luck for your surgery, do let me know how you get on, I will be thinking of you x
  • sam75653
    sam75653 maryvee

    Posted

    Hi marvee how are you getting on?

    I've just found this forum and am waiting to see the gyno myself, sick with worry, had a ultrasound scan where they found a 9cm csimple cyst and a small thickening of the endometrium - doctor did ca125 after this which came back 43

    Feeling extremely sad and worried - I'm 44 also

    • maryvee
      maryvee sam75653

      Posted

      It's really scary isn't it. It kinda sadly alters my attitude to my hubby also because I feel like "what if I'm not here for much longer..." We have to try to be positive I guess. I'm scared of having an operation and being asleep but I really want it done too so conflicted! 

      We went to the fun fair this last couple of days and I went on the kiddie coaster and It was so painful whenever it jolted... I can't wait to get this huge problem out of me and get rid of the pain!!!

  • maryvee
    maryvee

    Posted

    I am SO nervous. It seems to be that most women just have the cysts on one side or another, I think it looks bad to have it on both sides. I think it's awful how long this process takes. I'm scared that the docs will go... oh we can't do anything to fix it now. Really scared!
    • dobb34487
      dobb34487 maryvee

      Posted

      I know,it's all scary and your mind can't help thinking "what if" but try to keep busy and occupy time so you've not too much time to over think.Is your MRI tomorrow? Or have you had it?Technically I had cysts on both sides.Just deal with things as they come and you'll get through it.

      I won't lie I shall be nervous when I get my date through but I'll be glad to have this thing gone and will hopefully feel so much better once I'm healed.

      Stay strong and focas on the things in life that make you happy smile

    • maryvee
      maryvee dobb34487

      Posted

      Do they have to order a date for surgery? How long does it generally take? We are in London. My husband thinks that once they have the MRI it won't take much longer after that because they won't want the cysts to continue growing and the MRI gives some guidance for surgery if things don't change too much between the MRI and the surgery date. 

      Yes my MRI is tomorrow. Hopefully by tomorrow evening I will at least have that out of the way. Then it's just the wait to see the consultant and find out what it is.....

      WE have been keeping busy as much as possible, trip to the zoo and the funfair...it's when I'm at work and can just get lost in my thoughts that I panic!

    • dobb34487
      dobb34487 maryvee

      Posted

      Good that you're keeping busy,it sounds fun.Im sure once you've the results from the MRI then an op date will be arranged with your consultant.Im in Southern Ireland so I'm not sure if it's the same in uk.Last time I had a Dermoid It was treated as urgent and from my scan to surgery was only 3 weeks.Im delaying the new one being removed as I've a holiday in 4 weeks with my husband and son/girlfriend,last year's holiday was ruined by my back (I'm riddled with Arthritis ) and then I nursed my Mum through a nightmare diagnosis followed by surgery/chemo/radiotherapy.Then my Dad was gravely ill too.They made it through fine smile so I'm going to visit them too for a little break.Then they can operate and rid me if this monster and I know I can deal with whatever comes!We are all stronger than we think.

      Best of luck tomorrow and let me know how you get on.Its one big step closer to getting sorted.

    • maryvee
      maryvee dobb34487

      Posted

      Thank you, I will.

      My mind is a mess with -how much time will I need from work/managing my emotions through all this/getting through the MRI/waiting for the results/waiting for surgery/managing to stay calm before surgery/how will they deal with my diabetes while I'm unconscious (I am on insulin)/getting better so I am all over the place.

      But yes tomorrow will be a good few steps progress. 

      Enjoy your holidays with family. Sounds lovely! x

  • Ellie1943
    Ellie1943 maryvee

    Posted

    Hi Mary, have you tried phoning your consultants secretary? If and when they have all you results you will be placed on the operating list if you're not already on it. She will know all the details so you can phone her and discuss and maybe ask for the consultant to call you. This is what mine did. I'm in the UK, may be different elswhere. So after your MRI, phone her if you have the number, otherwise phone the clinic and ask for it, it is allowed. I did it! Dermoid's can cause CA125 to rise plus other conditions like endo for instance. I had mine removed in April, it was causing all sorts of problems including IBS, pain in back, swollen tummy,hip pain etc. It was not malignant, just a simple cyst full of fluid.  Best wishes Pollyanna. X
    • maryvee
      maryvee Ellie1943

      Posted

      Hi Pollyanna, glad yours was just a simple cyst. Are you doing well now? Are you back to work and recovered yet? I am wondering if they still do tests after surgery also. 

      I have called the consultants secretary before. Back in October my ultrasound was due on a day we were away on holiday and I called the secretary to see if they could pull the appointment up sooner. No dice. My CA125 was at 31 back then and the cysts were 7cm at that time. The ultrasonographer was the only one who seemed concerned.  I didn't want to bring the whole family back off holiday so I ended up coming back by myself and then going back to my hubby on the evening just so not to impact on anyone else! 

      As I said they've been watching these cysts for 2 yrs now. At least now they are actually doing something. They seemed surprised last time that they had got so big and not disappeared. 

    • Ellie1943
      Ellie1943 maryvee

      Posted

      I'm retired Mary so no more work as such! rolleyes They did biopsies on mine and results came back clear so no more worries on that score as I had my ovaries, tubes etc removed also at my own request. Don't need em at 73 after all, lol twisted Give the secretary a week or so after MRI and then phone if you can't wait until next appt. Explain how concerned and anxious you are, it worked for me and was soooooo true! The sonographers can't always tell much until the results have been studied by a technician who specialises in these things. One ultra sound apparently showed that my cyst had shrunk but when I went in for the op it had grown a couple of cms in about three weeks! The only way that they can tell anything is when it's removed and checked so please try to stay calm and not worry too much. Cysts are very common, especially in pre menopausal women apparently. All those hormones I suppose. rolleyes
    • maryvee
      maryvee Ellie1943

      Posted

      My next appointment to see the consultant is the week after the MRI anyway so I won't have to wait long, he booked that at the same time as the MRI...it'll just be a nail biting few days (literally I have bitten my nails to shreds!!). 

      I'm not sure I am premenopausal as such... Since I gave birth 2 yrs ago, my periods have been every 3 weeks then not for a couple of months, then 2 weeks... so irregular. The consultant said that's probably caused by the cysts but I'm unsure. 

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