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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 am still in hospital. I went in to my surgery Monday but then had some kind of spasm of my heart so they stopped surgery (still have cysts!!!) and treated for heart attack. Hope to go home tomorrow sad I have a gynaecologist app next month to discuss cysts but it has been suggested to me that they now won't give me a general anaesthetic. sad sad sad

    • BeenthereSr
      BeenthereSr maryvee

      Posted

      Mary,

      Oh you poor girl!!  I am guessing they did not make an incision and your episode occured shortly after you went under anesthia.  sad

      it's unbelieveable what you've had to go through.    Are they simple functional cysts?  Maybe they could just drain them to shrink the size and ease your pain.  Hopefully the gynecologist will have a treatment plan to help. 

      Did you actually have a heart attack or an irregular rythmn? 

      I can't even begin to think of what to say to ease your mind. 

      Please keep us posted.  I will continue to pray for you........xx

    • maryvee
      maryvee BeenthereSr

      Posted

      They said it was as soon as they administered the ga. my blood pressure dropped and they got an "st elevation" which makes them think heart attack so they blue lighted me to the heart centre and did an angioplasty which showed clean arteries no blockages but this "cardiac spasm" prob induced

      By the drug. I was asleep 10 hrs and

      Since

      Then have been having "stress tests" in the MRI already my least ever fab place to be! Echo shows "normal heart" blood tests suggest heart damage. Waiting for docs

      To say what happens next

      And to allow me home. Had

      Enough being

      In hospital for now for sure! Nothing is clear except I still have the original prob of the massive

      Cysts and now a heart

      Issue

      Too!

    • BeenthereSr
      BeenthereSr maryvee

      Posted

      Mary,

      Try to rest and take it one issue at a time.  Obviously the heart issue is the biggest concern.  Deal with that and then discuss options with the gynecologist at your appointment next month.

      This is a bump in the road, obviously, but test evaluations and recommendations are pending. 

      So again, rest.  Heal and ask the questions that are on your mind so you can digest and work with your Doctors to get you back on track.

      xx

      Pat

    • dobb34487
      dobb34487 maryvee

      Posted

      Oh Mary,

      That is a big blow to you sad I am so sorry to hear that you've still the monsters and now a heart problem.At least the heart issue was found while you were safely in the hands of a medical team and it didn't appear when you were alone at home.So maybe there is a blessing here.I really feel for you and hope you get everything sorted.

      Try not to stress too much and push to get an end result.I cannot even imagine how disillusioned you must feel.

      Thinking of you,Deb x

  • aged-too-fast
    aged-too-fast maryvee

    Posted

    Oh gosh Mary, that's awful! I hope they figure it all out soon and it's nothing serious. I'll be thinking and praying for you. Hugs.

  • Acejohnston
    Acejohnston maryvee

    Posted

    Mary I'm so sorry to read this and so sorry this happened to you. I just wanted to say I had my cyst drained after 2 years of symptoms as I was high risk so they wouldn't operate. It's a simple procedure and you don't need an anesthetic just a little sedation if you need it. My cyst was simple fluid filled at first but changed and had septation and also had a hemorrhagic cyst that grew on top of it bleeding into it. But my gynaecologist was great and felt aspiration was the best way to go. The procedure was quick and I felt relief immediately and it was a success. It may be a better solution for you. I wish you well and hope you get home soon. Take care xx

  • maryvee
    maryvee

    Posted

    Results back!! No myocardial infarction. Anaphylactic shock causing cardiac spasm. Allergic to the drug! No lasting heart damage. No further problems expected. Gynae clinic next week!!!! Good news all round really!!! Just wasted a week of my life lol but I am happy for the good news.
    • dobb34487
      dobb34487 maryvee

      Posted

      Well that is good news,phew.Though awful for you at least you know.

      Hopefully everything else will move quickly and you'll get sorted.

      Take care x

    • BeenthereSr
      BeenthereSr maryvee

      Posted

      Hallelujah!! Fantastic news. Let us know once all is sorted out. For your sake soon I hope.

      One problem, false alarm.

      Second problem tbd. Hopefully you can get the gynecologist to get them OUT!

      XXXXX

  • maryvee
    maryvee

    Posted

    So we are not allowed to leave! They want to scan my lungs first. sad

    • maryvee
      maryvee

      Posted

      Ct scan finished have to await results then hopefully home!
    • BeenthereSr
      BeenthereSr maryvee

      Posted

      Mary,

      Since the unfortunate turn of events be grateful they are being thorough. Now that your finally in hospital they are taking you seriously! This is a good thing.

      I pray this all has a good outcome and they can still deal with the cysts. I am so hopeful for you. xxx

  • maryvee
    maryvee

    Posted

    Spent the night in our bed, super comforting! Still having awful headache. See patterns of lights that aren't there. Daylight hurts. No sense of taste or smell. The world whirls round when I turn my head. Having pain meds which ease symptoms but not rule them out. I have outpatient cardiologist app Tuesday. I wonder if they will discharge me. Cousin who is a nurse said anaphylactic shock is harder on the body than a heart attack. I feel I should be all recovered by now!

    • BeenthereSr
      BeenthereSr maryvee

      Posted

      Being in your own bed must be heaven. Your body has been through a lot. Headache sounds like a migraine. Make sure you drink lots of fluids to flush out your body. Rest when tired. You've had a rough go but it will get better soon.

    • dobb34487
      dobb34487 maryvee

      Posted

      I'm glad you're back in your own home.Im not surprised you've a few side effects going on.Go easy on yourself and try to relax.

      You've had an awful experience and should feel better soon.

      Hope you get on well next week and you can get a plan to remove these Cysts safely!!!

      😀

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