4 months wait to have HUGE benign cyst removed?!

Posted , 6 users are following.

Hi everyone I'm 31 (no kids yet) and have been diagnosed with a large cyst about 21cm (8 inches) across on my right ovary. I look 6 months pregnant! I saw the cancer gynaecologist last week who explained she thinks it is a "large, benign, mucous cyst". Still need CT scan results to confirm fluid-only (no lumps in it) but obviously good news that specialist thinks it's not cancerous.

The BAD news is that she said I would now need to be re-referred to benign gynaecology, and that they have a wait list (here in Gloucestershire) of 16 weeks. 16 WEEKS!? I'm already huge and in pain! Ahhhh! 

Does anyone have experience of this? Either of being re-referred to benign (do you need to start at back of queue again?), or waiting to see a benign gynaecologist with a large cyst (do they prioritise those of us with big or painful cases)?

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  • Posted

    Oh dear Pam this is my fear right now too, have Gynae appnt finally after a year of investigation. Small cyst found at end of Nov but because small no plan to take action, it's only because I've asked for gynae refer that I'm having it, because of the pain it causes me. Have a horrid feeling that once I see gynae it will be 8 weeks for another scan and goodness knows how long after that for op if they agree to it. Think I wilk have to find the money to pay for it if that is the case
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    • Posted

      sad Oh dear Louise I'm orry to hear you're in pain. What kind of pain is it? Shooting, stich-like pain? I ask because I seem to have two kinds of pain - that one (sharp, but not often) and a general stretching, volume issue (shortness of breath, sore kidney, uncomfortable, need to pee lots). Thankfully I mostly have the second one, which is more like being pregnant (I imagine) and I can live with for now. My main problem is no so much the pain (though it is getting worse) but the impact on my life - I can't sleep properly or carry shopping or lift things or exercise or have sex. When people see me they assume I'm pregnant and when I say I'm not they look horrified. sad I'm otherwise healthy! I shouldn't have to live with this til the summer! 

      Anyway, sorry to moan! Thanks for listening. I'd be glad to hear of your story Louise (and other people's) so I don't feel I'm the only one with this. xxx

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    • Posted

      Yes my pains are the same as yours. Mostly the stretching one. I can't understand why mine is causing so much grief, it's tiny compared to yours, though I know they can change quickly so who knows. I have all the same problems as you have, the bloating means I've had to change the clothes I wear, any pressure from waistbands sets it off into painful spasms, I don't feel I can have sex, and often get nausea. On xmas night I ended up at A & E again this time was the worst attack, vomiting with pain. I'm dreading my next ovulate as will be right side again 😞
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    • Posted

      Oh gosh Louise you poor thing. Your pain sounds pretty bad. I haven't felt much sharp pain yet. I was told my cyst is "mobile", i.e. not attached to anything else but my ovary, which is apparently good because it can move around as I eat/pee/stretch or whatever. That could be a factor. Also what our cysts are made of couldale the pain different. I think mine's just liquid sacks. SO sorry to hear it is hurting you. Hopefully we can both get fixed soon. xx
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  • Posted

    Hi Pam, gosh how awful - I had a cyst of similar size 20cm on right ovary aswell so I know exactly how you feel. How did it get to this ? have you been to GP before it got to this size, I was going back and forth for months being dismissed over and over until I insisted on scans, after my scan I was in hospital within a week it was dealt with quickly by the hospital, you shouldn,t have to wait 16 weeks, thats awful - too long, I would go back and make a fuss, let us know and good luck xx
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    • Posted

      Hi Lou, I'm sorry to hear you had to battle to get seen. I've actually been VERY lucky (in some ways!) up to this point. I discovered it so late that the docs have been very quick.

      A month ago (2 weeks into January) I woke up in the night with a large sore bulge under my belly button sticking out like an egg on my right hand side! Phoned 999, but while talking to paramedic the bump went down and pain went away. They passed me to 111 and finally suggested I see GP next morning.

      GP referred me straight away for blood tests and an ultrasound. 2 weeks later the ultrasound shows a huge cyst and I get an urgent referral to cancer gyaecologist. 10 days after that the cancer specialist says it doesn't look cancerous so she'll send me for a CT and probably not see me again. 2 days later I get a phone call from CT dept offering me an appt that day due to cancellation. So all very quick really! 

      I'm a bit anxious though that they would all move SO quickly because it seemed serious and now they think it's not cancer, then what? Back of the queue, live with it?? rolleyes 

      I'd be grateful to know what happened with you re: surgery. What was your cyst made of? Dermoid or mucous? Any lumps or cancerous bits? Did they need to remove your ovary as well? Did they do open surgery due to size? So many questions! 

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    • Posted

      In hindsight, I should've gone to see a doc earlier. I noticed I was a bit fatter than usual in October/November and thought I needed to lose weight so started dieting. In December (after losing half a stone) it was more noticeably my belly. I just thought it was maybe gas (which I've had before) so I was drinking peppermint tea! In january I seemed to have gained 5 pounds over Christmas and felt quite big and bloated. Started running every day!!  Then the 999 night happened. Doh! I thought I was doing the right thing, but sometimes you really should just cut yourself some slack and see a doctor. rolleyes
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    • Posted

      Hi Pam, I really do undertand how you feel and I know the stress you are feeling aswell, I,ve been there . Like you I was panicking, and I mean seriously seriously panicking, couldn,t sleep, imagining all sorts of nasty things, googling everything ( bad idea ) and it actually took my Surgeon before I went to theatre and the nurses to calm me down, I really was in a state about it all. One thing that he said ( surgeon ) to me before I went down was and he held my hand to calm me down, that almost all cysts are totally benign and that whatever they found they would deal with, not to panic and when you wake up it will all be over, and I promise you that you will know nothing about it, the staff are all wonderful and reassuring and make you feel really comfortable and most of all you will feel safe and secure, so try not to worry too much. I went down and woke up 4 hours later in recovery, I did have a catheter which you may have due to the size of cyst but dont panic it,s fine and doesn,t hurt a bit - I had a drip and lots of painkillers ( no pain at all I promise ) and everyone is lovely to you and kind, I had about a 4 inch cut just under tummy button that was glued and fine, no pain at all - the anaethatist came to see me in recovery and told me that 3 and half litres of fluid was removed from my abdomen ( cyst ) that was a shock no wonder I was so big ! and then after that I was taken to the ward. I did have the ovary and tube removed but I am 52 and had previously had a hysterectomy with left ovary removed so not much point in my keeping anything, may be different with you as you are lots younger - had a peaceful pain free night in the ward with regular checks and pain relief and cathether taken out next morning with a bladder scan as it can be a little lazy after surgery, that was fine aswell. Surgeon came to see me that morning ( he was lovely ) and explained that it was cystic ( all fluid ) and borderline but only slightly, while he was in there he did a special tummy wash and checked everything he could see, bowels, liver, etc and all is was good - he took everything away and no further treatment would be needed, can,t tell you the relief. Came home same day and all was fine. Couple weeks later had letter asking me to go for CT with contrast to be doubly sure which I did, and that was fine too. Regular 6 monthly ultrasounds and transvaginal to check all well and they have been fine aswell, had one last week actually. So all in all I can say to you is try not to worry too much and remember that almost all cysts are fine even great big ones ! they are very common and I know ( trust me ) that it is all an ordeal but you will be very well looked after and cared for and I,m sure all will be well and remember you are not alone, so many of us have been there, sending you big hugs and let me know how you get on please xx
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    • Posted

      Oh Lou! Thank you SO much for sharing all that. I cannot tell you how much better this makes me feel. It is LOVELY of you to take the time to describe your experience. I feel safer knowing someone else has been through something similar. I feel reassured knowing what I might expect. And I feel a little bit soppy knowing a stranger just posted all that for my benefit. <3 thank you! xx xx thank="" you!="" xx="">
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    • Posted

      Hi Pam, thats ok ! it is a very emotional thing to go through, it,s your body and if you are anything like me your head is all over the place and believe me I am the worlds BIGGEST baby when it comes to medical things, the sight of a medical gown or just the smell of disinfectant or anything hospitaly sends me wobbly sick and acting pathetically ! it,s embarrassing - but take it from me that looking back now there really was no need for me to be SO worried, I think it,s because it was left so long I felt that no one took me seriously until I got to hospital and finally it was being sorted - I am sure all will be well and it will actually be a huge relief for you once you get in there as you will be safe and reassured that you will be coming home before you know it and can finally move on and slowly forget about everything and get better, good luck with everything - let me know how it goes please, try to relax a bit xx
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  • Posted

    Hi

    Just read your story and thought I'd share mine in the hope it helps you.

    I had an ultrasound in March last year after mentioning in passing a sort of discomfort/pressure feeling on my right side. Turns out I had a 17 x 11 cyst. It too was mucous tho I got refered to a specialist as they weren't sure if it was cancerous or not. Had blood tests and a MRI but had to wait 5 weeks to see the specialist, I badgered them by phone as I think I got lost between the two consultants. Anyway in June I had a laparotomy, 8 inch bikini line cut to remove the cyst the ovary and the tube. They thought they might have to do a vertical cut but it was mobile so got away with a bikini cut. I too was scared as had never had an anaesthetic before or anything major done but it was completely fine. I went through the thoughts what if I don't wake up, what if they've removed more than they said they would, what if I don't look the same. I didn't really feel much pain afterwards but more tightness of the muscles, the key is to move and walk as much as possible. Looking back I knew I had a round stomach but at the time just thought I had put on a few pounds. My cyst weighed 4lbs and I lost a stone and a half from diagnosis to after the operation! Think it was worry. After having it removed I realised how big it was and how much of a bulge it gave me! It made me wonder how I couldn't know it was in there! I barely had any pain from it.

    3 weeks ago I felt a pain on my left side and had an ultrasound last week that showed a 6cm cyst! Have pushed again to get an urgent appt as if it's grown that much in a maximum of 8 months I am not willing to wait and risk losing my left ovary too! I have an appt on Weds with the consultant. This one is far more painful which I don't get if its smaller but I am worried it's a different type or it's not benign! Also getting nausea with it. Pretty anxious to get this one out before it grows too big to leave the ovary in place!

    Has anyone been told what might be causing them? People keep telling me I am unlucky to get two but could it be something to do with a hormone problem?

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    • Posted

      Hi Philippa,

      I'm sorry to reply so late. How did your appointment with the consultant go? I wonder if this new cyst you have might be causing more pain because its less mobile - I have read that can make a big difference to how much your body can accommodate it. I can physically press on my abdomen to make it move slightly when it hurts me. Anyway I hope it is benign and all is sorted out for you, and I hope you get to keep your left ovary I know having that removed must be a worry for you but try not to worry about what might not happen! 

      I have now been given my appointment with the next consultant for 10th March. Apparently this is pretty good and quick, but it feels like an age away given I'm already huge! Not getting too much intense pain, but a lot of stretching/dull/pressure type pains. So far manageable with paracetamol and ibuprofen, thankfully. I am interested to know how long you had to wait between your specialist (2nd) consultant amd your laparotomy? I will almost certainly need a laparotomy as this cyst is big, has multiple sacks and seems fairly robust. I just want it gone so I can get back to my life! My New Year's fitness resolutions have not exactly gone to plan so far!!

      Pam

       

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    • Posted

      Hi Pam

      I saw the consultant last Wednesday, unfortunate the one who did my op and who is a specilaist is off sick so saw a locum. They did blood tests as the ultrasound showed it is multi locular, so has lots of depart compartments, so they want to make sure it's benign. They also gave me their first available ultrasound slot, which is tomorrow. I had one done privately but they want to do another one themselves (fed up of being prodded and poked!). Then she is going to disxuss my case at a weekly medical meeting on Friday and go from there. Their first option is to leave it but because I am in pain they are going to remove it. Almost fell off the chair when she said they could leave it as definitely don't want it to grow any bigger! If they're happy it's benign and it's easy to get at they will do key hold surgery and leave the ovary behind, if not they will do another laparotomy sad she is rushing it through because of my history.

      Last time I saw the specialist then had the op within 4 weeks. 16 weeks is a massive length of time to wait! How come they are leaving it so long if ur cyst is that big?

      Probably due to the size of yours you will need a laparotomy. It may have damaged the ovary too but don't be scared of they have to remove that too, I was really worried but you really can live with one. They said I wouldn't notice any difference and I haven't really, just felt a bit emotional during my first few periods after the operation and that was it. 8 months on and my scar is turning white. The operation itself was fine although i was pretty scared, and just wanted it done with. You do feel groggy and sick due to the morphine, my advice is take all the drugs they offer u and be as active as u can be but don't over do it, be prepared to sleep and don't even try to lift anything or drive for 6 weeks. It's not worth it.

      Don't worry about your fitness routine, you will suddenly be slim once it's removed! smile

      Let me know how your appt goes.

      Philippa

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    • Posted

      Oh and yes I think it is less mobile, she said it was located behind my uterus and might be stuck to the muscles at the back! Yuk! But explains why it hurts and why I feel sick when I stretch!
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    • Posted

      Hi Philippa,

      No, they can't leave it there! eek Best of luck with your ultrasound today. Hopefully they'll make swift plans to remove it by laparoscopy for you. Mine has multiple compartments too. Gosh, I wonder how long it was growing down there!

      About the wait time - I was told benign gyn waits were 16 weeks by the cancer specialist. I'm not sure if that meant 16 weeks for a specialist appt, or for surgery, or what. But anyway I have been given this Gyn consultant apt for 10th March which is about 5 weeks from my GP referral. I know my GP has been fighting my corner to het me seen sooner. Let's just wait and see how long the next stage is I guess! 

      I have sports teams I play on and the softball season (which is like baseball) starts at end of April. Very sad to think I might miss the whole season through til August if this drags on! sad But thanks for describing your experience, that does help me to know what I might expect. xxx

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    • Posted

      Hi Pam

      I had my second ultrasound today and it showed no cyst!! I did have a pain as I rolled over in bed about ten days ago which took a few days to settle down and had bouts of nausea so I am not wondering if that was the cyst rupturing. Though I still have pains so am a bit confused. Not really sure what happens now whether I still go back and see the consultant now.

      Oh sorry you might end up missing all that sport. Fingers crossed they will sort it quickly following ur appt on 10th

      Philippa

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