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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 have been so terribly down and depressed this last week or so. It feels like they are taking forever to remove these cysts. It seems like endless torture.... I just need a kick up the butt I expect. I have been so tearful the past couple of days too, wish I could get out of this funk and get the cysts removed.
    • dobb34487
      dobb34487 maryvee

      Posted

      Hi Mary,

      I can't can't believe you are still waiting and suffering!It's been months!Do you have a new date for surgery?

      You shouldve gone to A&E last time you were in a bad way and they may have moved surgery on a bit quicker.

      Hang in there and I'm not surprised you're all over the place x

    • maryvee
      maryvee dobb34487

      Posted

      Than you hon, how is your recovery going?

      I think you are right about going to A and E but I was afraid at the time that it would just waste time. Now I am more desperate... I guess I will see what the doc says this week and if necessary I will go to A and E next time I get that terrible pain.

    • dobb34487
      dobb34487 maryvee

      Posted

      Hi,

      My recovery has generally gone well thanks.Im now signed off and got the all clear smile I was struggling badly with hot flushes,mood swings,feeling down and seemed to shed alot of hair!! My Onc/Gyn strongly advised HRT due to risks of Osteoporosis,breast cancer and many other benefits as I'm still in my mid 40 ' s. I'm now on Femoston-Conti for the last 2 weeks and already feeling so much better in myself smile

      I really hope you get sorted soon.Write every single awful symptom down and tell them everything at appointments! Bleeding that often cannot be deemed ok!! Stay strong 💖

    • maryvee
      maryvee dobb34487

      Posted

      I am glad you are doing better. 

      Just an update from me. I called the hospital Friday as I am still waiting to hear whats happening.... the secretary said she'd get back to me and of course I am STILL waiting... 

      Infuriating!!!!!

  • maryvee
    maryvee

    Posted

    It has taken me a few days to assess since my last visit to the hospital. They are now saying that they won't try surgery again and they wish to aspirate the cysts. I have asked for a second opinion so we are going back next week. I'm not very happy as I have heard that aspirating the cysts will just mean they grow back the month after. It's like making me dependent on multiple aspirations. I would really rather just have the surgery and I wish they'd get on with it!! Also before they were telling me that they wouldn't be sure if they were cystic until they operated and now they're not concerned about that? It seems very weird to me. I'm not happy about it at all.

    I have spent much of this month bleeding... I think about 35 of the last 42 days. 

  • maryvee
    maryvee

    Posted

    Nothing has changed for me. I still have these huge cysts. I am still waiting for the doc to get back to me. I contacted PALS at the hospital to see if they could help me. I am going to call on Monday and then I'll have to make a formal complaint if I don't get anywhere else.

    • dobb34487
      dobb34487 maryvee

      Posted

      Hi Maryvee,

      I had been thinking about you and wondering if you'd got anywhere.Sorry to read that you're still in limbo and nothings been done! That is shocking.

      How are you feeling in yourself?

      My thoughts are with you 💖

    • maryvee
      maryvee dobb34487

      Posted

      I am feeling pretty hopeless today. I have contacted PALS to see if they can get any information for me I just seem to be locked inside "nothings happening" and it's soul sucking.  sad

      How are you doing?

      I am always glad to hear from you. I hope you are all healed up by now?

    • dobb34487
      dobb34487 maryvee

      Posted

      Oh hun,I really feel for you sad

      You must be so fed up of it all and still no resolve!! I'm so shocked that you've had to put up with it all for so long.Hopefully you will hear something soon.

      I'm doing well thankyou.The HRT seems to be working well for me and I'm otherwise fine smile

      Hang in there,though I'd imagine you're at the end of your tether sad

      💖

    • maryvee
      maryvee dobb34487

      Posted

      I find myself wondering all the time when there will ever be an end to it. 

      Today I saw my GP and they are sending me to an allergy centre to figure out which anaesthetics it is that I'm allergic to and which are safe. 

    • maryvee
      maryvee dobb34487

      Posted

      I am glad the HRT is working well. Are you all healed up now and doing things you did before the surgery or still healing?
  • maryvee
    maryvee

    Posted

    I am still in the same position... No further ahead. I have actually put in a complaint to the trust because I can't even get any response or information from the hospital, let alone any care. 

    • dobb34487
      dobb34487 maryvee

      Posted

      Hi Maryvee,

      I have been thinking about you and wondering if you'd got any further.I'm shocked that you still haven't got anywhere.You must be feeling awful and not knowing when it's all going to end!! I hope you get somewhere soon.It must be mind and body destroying! This day and age when we are supposed to have rights and get medical treatment when needed. Please let me know if you finally get a response.

      I'm sorry for not replying sooner,I was locked out of my account and couldn't reset the password.I finally sorted it today!

      I'm doing OK thanks.The HRT is working OK. I still have hot flushes and occasionally don't sleep but everything has calmed down.I could go on a stronger HRT but I'm not going to make that decision in haste.I've gained weight and am battling to get it off again.I can't totally blame HRT as I've been very greedy and lazy around the festive season and since surgery really.I've now taken back control and look forward to feeling more me again 😊

      Take care and good luck with the complaint 💖

    • maryvee
      maryvee dobb34487

      Posted

      Thank you so much for your response. I feel pretty alone with all this, never getting anywhere I seem to be shouting for help and no-one listening. I didn't want to make a complaint but what else can I do? I'm not getting anywhere.

      I read about your side effects with interest. How much weight do you think you have put on? I wonder if HRT does that to many people. How are you managing day to day now? 

    • dobb34487
      dobb34487 maryvee

      Posted

      I can't imagine how you are feeling.Do what you can to be heard.Hopefully your complaint will get some needed attention.

      I honestly couldn't of gone on without HRT my awful symptoms that started after surgery were unbearable.I didn't think I'd feel too bad as I only had the one damaged Ovary that wasn't working properly.I'm due for a check up and a chat before I can get my next prescription so I will go over my ongoing milder symptoms with the doc.

      I've always battled with my weight,either not eating then eating too much.I've had counselling and seen dieticians and had lost a nice deal of weight throughout 2016.I'm up over a stone.We had so many people staying and such a busy time between summer and New Year so I can't blame HRT alone.I over indulged and ate a lot around the festive period.I'm back on track now and have taken control of myself.I'm sure I've bored you with my ailments and mentioned my 2 prolapsed discs in my lower spine and I've 2 tears in my knee Cartilige and need both knees replacing.All these things give me constant pain and mean I can't exercise like I once could and lead me to comfort eat at times sad

      My Granddaughter is almost due now and I'm going to UK again next Friday for a few weeks.I'm so looking forward to meeting her and pray that the birth goes smoothly for my daughter and the baby arrives safe and well.I never worried with my own 4 pregnancies but when it's your daughter it's a whole other worry.

      Our ovaries are wonderful when they work properly.Who would think of the trouble and pain they cause when they malfunction.

      Take care and let me know if you get anywhere 💖

    • maryvee
      maryvee dobb34487

      Posted

      Hopefully you are a Grandma by now! Thinking of you x
    • maryvee
      maryvee

      Posted

      It is now April 2017 and I still havent had surgery. sad

      I am waiting for them to do allergy testing to see what general anaesthetic they can use on me. 

      I have been in an awful way just lately my abdomen is so large and hurts so much. I keep having cramps all over and my urine looks really dark.... I am so desperate for them to remove these cysts.

    • dobb34487
      dobb34487 maryvee

      Posted

      Hello Mary vee,

      My beautiful Granddaughter arrived safely thankyou and is now 11 weeks old and perfect smile

    • dobb34487
      dobb34487 maryvee

      Posted

      I was thinking about you and wondering what was happening.You hadn't responded in over 3 months so I'd hoped you were fighting fit.

      I really feel for you...this is ridiculous.I can't imagine the pain you're in.

      I really hope you get somewhere soon sad x

    • maryvee
      maryvee dobb34487

      Posted

      Thank you. I can't wait to get it all done. I was in such agony last week, I think my ovary was trying to ovulate and it was so so painful for days, I was living on ibruprofen and trying to get through Easter. it is easier again today but my stomach is HUGE now, I wonder how big they have grown in all this time. I have put on around 3 stone in all. The complaint I made really only got me an apology. Next week I go in for the allergy testing and then if they don't give me an appointment soon after that I will be making yet another complaint because I really feel so desperate and worried what is happening in there and there are times when the pain is terrible. 

      Are you effected by it all anymore or are you 100% better now?

    • dobb34487
      dobb34487 maryvee

      Posted

      Hi Mary vee,

      I'm so sorry that I hadn't got round to replying sooner.Life's been hectic and my daughter who recently had my beautiful Granddaughter has been very ill and in hospital for a few weeks so I was back in uk to help out.Shes thankfully better now but is on the waiting list for surgery!

      How are you?did you get any further with docs?how did the allergy testing go?I still can't believe you haven't been sorted! I can't imagine how you are feeling!

      I'm doing OK thankyou.I still have horrible night sweats and a bit of spotting but I don't want to go on a higher dose of HRT.I feel normal,no mood swings or feeling depressed so my dosage has stopped that.I'm still battling the bulge,as I always have.I'd gained 2 stone since surgery so I'm back on track for getting it off! I'm still a big shapely gal,but happy to get back to a normal size 18.Big for some I know but for me I'm quite happy being a well proportioned 18.At my biggest I was a 26/28 and a very unhappy self conscious lady sad

      I feel bad that you've gained 3 stone,I know how that must make you feel.Your cysto must be massive now?have you had any recent scans?

      I hope you have made some progress.

      Take care 💖

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