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Large Ovarian Cyst waiting time?

Posted , 24 users are following.

Bek
Bek

I went to the gym in October and thought I pulled a muscle in my stomach, but it was really painful so ended up going to the doctors. They referred me for a scan and I ended up being referred to a consultant. I have been diagnosed as have an Ovarian cyst 10 x 10 x 8cm. My stomach is huge and I have been on painkillers for 7 months now. I was not expecting that news from the scan as it was explained as a small cyst, which may need keyhole surgery. Very shocked to find out it was that big and I may need to be cut open and possibly have an ovary removed too. I have a 12 - 16 week wait and am feeling pretty nauseous with constant bad back pain (my job involves standing up most of the day) which I am struggling with. My stomach is getting huge and I am a petite person. I am not sure I can manage 16 weeks wait, I will also have to postpone the op if that is the case due to circumstances, cannot believe the timing of it all. I have been told to go to A&E immediately if in pain as my ovary may twist. I cannot sleep as it is so uncomfortable I am having to turn every 15 minutes or so and am constantly tearful, which I cannot control. I am now eating little and often, getting indigestion and also pain in my hip too, just a few of many symptoms I am experiencing. Does anyone have any experiences of the waiting time they had? Or experiences of laparotomy or laparoscopy to share? Maybe just to put my mind at rest.

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  • cynthia92584
    cynthia92584 Bek

    Posted

    Hi Bek, I am going through the exact same thing.  I actually have had no period for 3 months.  Was hoping to be pregnant...only to find that I was told  I needed alot of testing.  Ultrasound found cysts on ovary and calcification on uterus.  Mass blocking uterus so biopsy was not able to be performed.  My stomach was is so swollen and so many different pains.  Difficult sleeping, always waking for the bathroom, loss of appetite, vomiting/nausea/diahrea, and now the hip pain.  I thought I was going crazy.  Cannot understand the hip pain, but to read that you also have this I know it must be related to the other problems I have.  I was routed to an oncologist---not expected that at all.  It was very scary for a month waiting for all the test results.  Since the biopsy was not able to be performed, I will be having surgery in 2 weeks.  I know I will have a D&C, removal of the mass, removal of the calcification and cyst, and maybe lose an ovary.  At that time, I will also know if there is any cancer.  Calcification showed up on pelvic ultrasound; cysts showed up on CT scan.  Doctor did not see any signs of cancer, so I am crossing my fingers.  I cannot imagine having to wait longer than 2 weeks.  I know that they consider this a "small" surgery, but they should be able to fit you in--otherwise, ask for another doctor who can perform the surgery.   Just because that doctor diagnosed you does not mean that is the doctor who has to perform the surgery--especially if you are in pain.  I would call other doctors and explain the situation.  Good luck.

     

    • Bek
      Bek cynthia92584

      Posted

      Hi there, sounds painful (the calcification). Can I ask when you had your scan and have you had the pre op assessment etc?

      I am actually feeling a bit better this week, doubled up on my painkiller dose.

      I actually look very pregnant now and someone has told me, fab. I only ate a bowl of veggie soup today. I should obviously be looking like Claudia Schiffer by now!

      I have phoned nearly every day this week and got the name of my consultant finally!

      They are still unable to tell what kind of cyst it is and I will have to wait until Tuesday for when the registrar (doctor) comes back. It is a nightmare, but having all the tablets is controlling the pain slightly. Not keen on being on meds for so long as I feel a little spacey.

      It was only the other day after a phone call they said I will not be having keyhole. Up until that point, no one has actually said that outright. 

      I too am having pain in my hip and pins and needles in my feet at night.

      When is your surgery?

      Have you found you have put on weight or lost weight? 

      Let me know how it goes. I think for me the idea of waiting and taking painkillers for over a year is not good. I am also feeling uncomfortable as the left half of my womb is squashed up, which I am sure cannot be good news.

      Anyway hope you start to feel better soon. It is good they have got back to you so quickly. Where abouts in the country are you? x x 

       

    • Beccy53756
      Beccy53756 cynthia92584

      Posted

      How big was your cyst Cynthia? Totally sympathise with all the waiting - very jealous that you are being seen so quickly! wink

      2 weeks is not long to wait for your op. How do you feel about everything?

      I have seen so many people now I do wonder if any of them have spoken to each other! Bloody nightmare! xx

    • cynthia92584
      cynthia92584 Beccy53756

      Posted

      Hi Beccy, I really was not told the size of the cyst.  All I know is all the procedures that need to be done.  They wanted to do surgery this Monday (5th), but my husband returns from a trip--I need to get him from airport.  So, the 19th is the next available.  It is coming fast.  I cannot wait to get this over with.  Pretty sure I have been losing alot of weight the last 2 weeks because of the nausea.  So many different pains everyday.  Yuk~

       

    • cynthia92584
      cynthia92584 Bek

      Posted

      Bek, I had my scan 2 weeks ago.  I am told I will have my preop assessments this week.

    • Bek
      Bek cynthia92584

      Posted

      Hey Cynthia, good news that it is not long now.

      The pre-op assessments are pretty quick, they can't give me any info except that people have waited longer.

      Are you nervous? I guess the shorter the waiting time, the less chance you have to worry. Sounds like it really needed to be done.

      It will be worth it to get rid of the pain.

      One thing I have thought about is that if we are all losing weight and our cysts are getting bigger the weight loss may be more then we think. I am sure my weight loss was down to nausea too and discomfort of eating large meals.

      Are you taking a lot of medication like me?

      Keep us posted, glad things are happening quickly for you smile

  • vikki67830
    vikki67830 Bek

    Posted

    Hi bek I have a cyst on my left ovarian .I had to have two scans but of tyem aaid I had this cyst ove but in pain in my back, side and hip all on my left side. The doctor will not listen ive been trying for a baby with my husband but we have had 3 miscarriages.  We arw still trying but nothing I keep saying to the doctor that its somethink to do with my cyst. Im in so much pain and im only 27 I feel so carppy. I dont no wat to do anymore.  X 
    • Bek
      Bek vikki67830

      Posted

      Aw Vikki, that is terrible for you. You really do sound in a similar position to me. I am 33 and was planning on trying to start a family asap, it really is heartbreaking.

      The doctors are pretty bad at explaining things aren't they. I am hvaing the same, my periods stopped and it was the pill, my emotions ran high and it was stress etc etc. I have even spoken to a doctoor who said what do you want me to do about it?

      Not helpful. I am feeling pretty low, but did have a better week (upped the meds).

      Can I ask how long you have had the cyst? Are you waiting for surgery?

      Don't worry hun ,keep talking to us on here, we are all in the same boat. It is good to share our experiences and support eachother. 

    • Bek
      Bek vikki67830

      Posted

      (Sorry didn't quite finish).

      Also good to know that you are not alone.

      Keep us updated.

      What is your doctor doing about it all, you are clearly having a horrendous time at the moment. What you need is a little support right now.

      Keep chatting and look after yourself. We are all here for you smile x x 

       

    • vikki67830
      vikki67830 Bek

      Posted

      No im not having op thwy will not give  it to me. I feel ghat no one cares  I have this cyst seens 2012 but ive try  everythink  im in pain right now and I dont no wat to do anymore. X
    • Bek
      Bek vikki67830

      Posted

      Vikki it is so frustrating isn't it. Have you tried to make a complaint?

      What is your doctor like, do you feel you are being taken seriously?

      You sound very down about it all, I was feeling like that and am trying to get on with everything, but it is really hard isn't it.

      Why will they not give you an op, is it due to the size of the cyst?

      Will try and give you as much help as I can, although at the mo I think we are all in a similar position.

      Keep talking x x x

    • bonnie95504
      bonnie95504 Bek

      Posted

      Hi Bek, I too have a cyst which is described as 'medium' sized.However the pain it is giving me in my hip,groin and back is terrible so can't imagine how bad yours must be! To be honest I cannot believe you are having to wait so long-I thought my wait had been awful!I started getting problems over christmas and went for a scan in January which found a simple 3cm cyst even that was causing me pain.I returned again at beginning of April to have another scan to find it has doubled in size.They have then left it up to me to decide wether to leave it or have it operated on via laporoscapy.Seeing as it consumes my thoughts constantly on wether it is going to twist or rupture I have decided on the op which I am also dreading but cant live with it and the pain anymore.I am booked in for June 23rd 3 weeks before we are due to go to Florida.....just hope there are no complications else I wont be able to travel.I feel for you as your case seems so much worse than mine and yet they are not doing anything!

      Take care xx

    • Beccy53756
      Beccy53756 bonnie95504

      Posted

      Hi bonnie, sorry to poke my nose in but I would speak to your consultant about your flight if you can! Throughtout my process I went on holiday (also to America, but west coast)  and I was told that you cannot fly for 4 weeks after surgery because the DVT risk after surgery goes through the roof. Its best to check out with them as they will be able to tell you but wouldn't want you affected by that! 

      good luck, hopefully you can have your surgery done and go away pain free for a nice relaxing break! smile

    • Bek
      Bek bonnie95504

      Posted

      Hi Bonnie, glad they are sorting you out so quickly, but I totally agree with Beccy.

      They told me up to 5 weeks for flying and I have since read it is because of the risk of DVT.

      Florida is a pretty long haul. Do they know about the holiday? Be very careful, I hsve heard people feel better fairly quickly but make sure you still take it easy.

      Any idea what sort of size your cyst is? I am going to request another scan or check up so that they have to do something.

      Beccy and I are both having trouble getting our appointments and I have no idea why. 

      I stupidy twisted to pick something up today and have had shooting pains in my left side (which is just bearble) ever since. 

      Anyway glad you have all your dates sorted etc, I am desperately trying to get a date for my pre-op as a start. 

      On the bright side you will have had your op before the holiday and all the pain you have been experiencing should be gone, that is really good news x x 

       

    • bonnie95504
      bonnie95504 Bek

      Posted

      Well the consultant seemed completely non plussed about the holiday when I asked her and said you will be ok to fly a week or two after?But then I don't have much confidence in them to be honest.Throughout they have not seemed that bothered at all about the cyst and pain I am in.Just feel like another number to them!I have not seen the same consultant since the start and last time I went I was supposed to see the same guy but he had been called out to a meeting so saw someone else who had lost all my notes and didn't know why I was there!I had to go through it all again then she found me on computer! My cyst is 6x 6 x 4.5 so not massive but enough to be causing me many problems,can barely eat now without feeling sick,have put on half a stone and today have been most active I have been for ages and am now in agony with back and pressure on bladder.Who would have thought a cyst could cause so many problems.I am also having my tubes tied at same time as cyst operated on as I have 3 children and they think it will stop me getting any more cysts as am on mini pill at moment which can apparently contribute to getting them.Very nervous about it all!
    • Bek
      Bek bonnie95504

      Posted

      Hi Bonnie, I think the recovery time is much quicker for keyhole.

      Completely agree that they are not bothered. Managed to contact someone today regarding questions I asked last Wednesday. Spoke again on Thursday and no answers, so promised answers today. Unfortunately everyone was in a meeting compiling waiting lists and unabel to call me.

      I have managed to get another phone call appointment with my doctor (the first time I will see one twice).

      I still have not met or spoken to the consultant yet and am now slightly concerned that I have signed the consent form. 

      To be fair I was planning on starting a family around the next month or two and I am now gutted I may have to wait so mcuh longer. Would have started a family earlier, but just felt I needed a little stability after the past few years first.

      You are completely right about exercise, I have given up all together as it hurts, some light dog walking is it. Need to lose weight due to my wedding dress not fitting, but am struggling. Yesterday I turned to pick up an box and had terrible shooting pains in my left side all day.

      Also finding if I exercise I am exhausted for a good 2 hours and need to sleep.

      Am still trying to reduce my painkillers, have managed none today, but felt awful. Not sure whether it is better to take them or not.

      I am absolutely scared of the whole thing, but really want to get it over and done with. Just sat on my chair typing is really hurting at the mo!

      I am petrified that the cyst has got too big and caused more damage. All I want is someone to answer the phone and actually speak to me and not fob me off.

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