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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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  • Ellie1943
    Ellie1943 maryvee

    Posted

    Well if you've not started menopause yet, you are pre menopausal, not peri menopausal which I think means your on the verge of it after blood tests show hormonal changes. I've read that cysts can cause upset to your periods also so that's probably what it is. One week is not too long, try to keep busy and mind off it with other things and it will soon pass. You can ask any questions you need answers for at the appointment so don't hold back. I wrote a list of things I needed to know about. Niight night, I'm off to bed now. X surprised
  • maryvee
    maryvee

    Posted

    I went in to have my MRI today. I was so anxious and worried I got there about 5 hrs early and had to walk round and go for a coffee etc. When it was my turn they took me in and I went into a little room, took off my bra and waited to be taken into to the room. They went through a questionnaire with me and explained they had to put a cannula in and some dye. I got into the MRI scanner and when they pushed me in it was so close I felt really dizzy, so they pulled me out and the padded thing they put over my abdomen moved to one side. They said because that was moving they wouldn't be able to do the MRI today (oh God my worst nightmare). I have to go to a different hospital next week where they have a different type of MRI machine. I was scared... but I didn't want them to stop. This will mean I wont have the MRI done by the time of my next consultant visit... I can't believe I have to wait longer, I am in pain and really distressed now I am about ready to go do-lally. sad
    • dobb34487
      dobb34487 maryvee

      Posted

      Oh you poor lady.I don't even know what to say,I've never heard of one being stopped other than because someone's freaking out! You must be so frustrated!I really feel for you sad
    • maryvee
      maryvee dobb34487

      Posted

      Thanks hon.. I am feeling really trapped. I have these horrible cysts and it's taken all this time for the doctors to agree that they are undesirable and even then I can't get things done. I am feeling like....will they EVER get rid of them. Meanwhile they are just growing and growing. I am uncomfortable enough to take myself to A and E but that's not going to bring the MRI/surgery any closer to actually being done and I couldn't bear to go in and be scanned again and sent home with painkillers. And when I next go see the consultant they will have no more info than they had last time which will probably mean yet another wait for another consultant visit once they actually do have the MRI results (if they indeed do it).  
    • dobb34487
      dobb34487 maryvee

      Posted

      I just went back and read your first post again.That is alot of extra things to be in your abdomen.And on each side!!! I can't believe you are being made to wait even longer now.I always think "if I was one of those no nonsense shouty people, I would be sorted by now".Do you think it would make any difference if you went to A&E?They could give you a good painkiller.My beast was paining me last night so to have each side paining you and soo big too,I can only imagine how you feel.You need to get some answers and some helpful advice.Im so sorry your going through this sad x
    • maryvee
      maryvee dobb34487

      Posted

      Had a rough night last night.. couldn't get to sleep. Eventually dozed on the sofa but woke up suddenly needing to be sick. I don't know if I can just push on and wait for these appointments I feel awful I'm against going to a and e as I need something done that they can't do probably, but I'm not really able to do anything properly like this. Just trying to hold on.
    • dobb34487
      dobb34487 maryvee

      Posted

      How are you today after a horrible night?Getting sick isn't a common side effect if Cysts.You need to see someone.Ive has to go to A&E twice in the last 4 days! I've torn cartilage in my knee and collapsed in agony with stomach pains and to add to my list of ailments I now have Stomach Ulcers 😨

      Last time when I had the first Dermoid my husband hounded the docs/Oncologist.I don't know if it got me seen quicker but I know they were sick of him ringing them,and he's not a pushy man at all!!

      I don't see why you're being left so long and haven't been given much information.

      Hope you're ok x

    • maryvee
      maryvee dobb34487

      Posted

      Oh no that's a lot to deal with! Doesn't it always seem like when one thing goes wrong several others queue up to join in!! I hope you feel better soon x

      I had to work today but my mind isn't with it. I haven't eaten anything just sipped some water. Maybe it's just the upset of yesterday. 

  • maryvee
    maryvee

    Posted

    I was so distressed when they didnt do the MRI. It has literally taken me this time to come to terms with the fact it hasn't been done as yet. I am in pain and I can barely eat. I've just sipped water for two days now. I'm feeling emotionally stronger than yesterday though... one week to the next MRI appointment. 
    • dobb34487
      dobb34487 maryvee

      Posted

      You seriously need to be seen/listened to.Ive never heard of anyone being left so long and in so much pain.You shouldn't have to be left like this.Then will it be a week after MRI before you see anyone?or will you still have your original appointment? sad x
    • maryvee
      maryvee dobb34487

      Posted

      My original appointment is next thursday at 10am as they should have had the MRI results by then, but now my MRI is 2pm that same day, so when I see the consultant I wont have had the MRI yet! My husband said...well as its the same day maybe they can look at it straight away? But surely they have to make a report? I guess when I see the consultant he will tell me then and prob have to make another appointment after that.... drives me crazy. 
    • dobb34487
      dobb34487 maryvee

      Posted

      What a palaver!!! They should also be giving you a date for surgery!! Will your husband be going with you to that appointment?sometimes another person there to take control helps,even though you shouldn't have to fight your own corner!! sad
    • maryvee
      maryvee dobb34487

      Posted

      Yes he was even ready to come in the MRI room with me last time but they said it'd be fine! Hubby is quiet and thoughtful though... not the kind of person to shout and get things moving! But its good to have that support. 

      Part of the problem with the NHS I guess is the lack of being able to talk to someone in the know who could just easily sort out things like this and do things more efficiently. 

    • dobb34487
      dobb34487 maryvee

      Posted

      I suppose that's true re NHS .I'm from UK originally.And I do know that even in the worse case scenario waiting a few extra weeks is standard for them,where as it's a much bigger deal to the patient that's waiting.Even with a close relatives Cancer they said things don't have to be operated on now and waiting 3 weeks won't affect your long term outcome.Easy for them to say but living and trying to keep sane is impossible!! Once they know what they're dealing with then you'll get an op date and a plan will be made.
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