My experience of huge complex ovarian cyst

Posted , 52 users are following.

More of a story than a question in case it helps some of you get through the scary waiting time. I know that it is really hard as if you have this problem you will be looking for information and realising at the same time that your situation is only yours. I am telling you so that you can hope for a good outcome rather than expect the worst.

I am 50 years old and was still having regular periods.

I noticed my tummy looking a bit humpy on the right side about 3 months ago. I pushed the lump and the hump moved to the left. Trapped wind moving I thought. However it started getting bigger and when I tapped it sounded like a watery whump. It grew up and over to the middle so I looked pregnant. My insides gurgled, I was constipated and had bad backache every morning. My whole back was sore andI felt a bit out of breath. It got better when I stood up.

I could not get an appointment with my GP. Rang many days but missed the available slots. Called again and said I would have to use A&E, which I would rather not, if I couldn't see someone. Pain!

The GP sent me to A&E gynae assessment. Ultrasound revealed huge complex cyst. The registrar said they suspected cancer. sad

Two days later I saw the gynae oncologist who said the CA125 result was hardly significant bearing in mind the size. It was 70. I was booked in for surgery in 2 Weeks as he wanted to treat it as suspect cancer; respect it. I had a CT scan and overheard he technician saying he had never seen anything like it in his life. sad

I had a total hysterectomy and removal of my appendix.

After surgery the consultant told me he felt the cyst was benign. I know he would have to feel confident to say that and he does expect the pathology to confirm.

It was a mass of mucus filled chambers with very thin walls and he had to scoop it out as it had become a mush. The appendix was also filled with mucous.

So here I am 5 days post op, gone through the fears, made a will and died many times in my head. Now I just need to get the confirmation of pathology and get the HRT. I will make sure I get testosterone as well so that I do not lose all my pubic hair.

YAY! smile

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  • Posted

    Wow, thanks for sharing your experience and I hope you are feeling better. I am in the beginning phase having had an ultrasound on Saturday and now waiting for my GP to discuss the results, a 'quite large' ovarian cyst on the left side but experiencing backache, bloated stomach etc. V worried as I am 56 and post menopause. Have phoned the GP today to speak to the Dr as I am thinking about going private so speed things up due to work commitments recovery time etc. Waiting is dreadful every minute seems like an hour and I feel the thing inside me is growing with every second!
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  • Posted

    Well I was very happy that it wasn't ovarian cancer, but it did turn out to be something else. Pseudomyoxma peritonei. Not nice but not as hard as the former option. I am on a treatment path at the moment and will find out whether it will need to be managed, it is a slowly progressing disease, or whether I might be able to be rid of it completely after another big op and chemo in my tummy. I understand the waiting is terrible very well There is still a high possibility that yours is benign and I hated the feeling of not knowing too. The consultant at the scan I had said we must be thinking along the lines of cancer so I really thought I had it. The only way to know is after the op. Two friends of mine have had ovarian cancer and were clear after surgery. Both cases the bad bit was encased in endometriosis I will be thinking of you. This is such a dire time and I think every woman should be awarded a pair of golden spurs for going through it.
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  • Posted

    I spoke to my Dr today who said it wasn't clear in my ultrasound if it was a cyst I had or not but whatever it

    was was filled with liquid. I am now confused and really worried/upset. He is trying to get me an appointment next week I did say I was willing to go privately but he is not convinced this is the right option. He did say he

    would speak to consultant he knows. I am desperate to get things moving. So worried, why did the ultrasound technician say it was a cyst?

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  • Posted

    It could be a cyst caused by something else, it could be caused by a misbehaving ovary, but that does not necessarily mean cancer.. I was told that small hard ovarian cysts are more disposed to being dangerous. Liquid filled leaves more room for other possibilities. OK you are post menopausal but there is still plenty of room for not having cancer. Obviously you can't know, but guessing won't help you. I guessed myself silly, which you are likely to do as well, but it won't help much either. I was wrong, you may be too. The next thing that I had was a CTscan and blood tests. Your GP could sort these for you straight away. Even after that the situation was still not clear for me though. I had to wait until after the op. You may be able to get the tests privately but the NHS usually responds quickly so I hope you won't need to. I do know that blood test results can be turned around fast at private hospitals if they have the right facilities. I am sure your GP will be keen to help you as quickly as possible. In your position I would have a glass of wine tonight and keep reminding yourself that you should not be worrying until you have a reason. I do know the fear though and you will just have to let the waves crash over you until you see a clearer picture. A cyst is a fluid filled structure, it may not be clear what the origin is. I will be thinking of you. Fingers firmly crossed.
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  • Posted

    Thanks clareyscarey, perhaps you posted it three times to get the message across! So now I am wondering what else could cause a cyst in the lower left pelvic area. I have cramp period like pains and backache and

    can feel something. I too have heard what you say about fluid filled cysts, but who knows.

    Everyone says not to worry but I am sick with worry. It's the not knowing.

    In emotional turmoil but really appreciate your support.

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  • Posted

    Thanks for sharing clareyscarey... I hope that you are now recovered 6 months post op and enjoying life to the full again.

    I too have been diagnosed with a humongous complex cyst - some fluid filled, some solid. I'm awaiting my consultation with the gynecologist oncologist this coming week.

    I'm caught in between feelings of wanting it out yesterday and dreading the great discomfort I know will be ahead of me post op. I've been told to prepare for a cut from sternum to pelvic area to remove the cyst and have a total hysterectomy. I remain positive that it will come back benign as that is a bridge to cross when I hear otherwise.

    As I'm 51 I'm not too fussed at loosing my reproductive organs, however am a little nervous about all the HRT as I've not yet approached pre-menopause. I'd be very interested to hear your experience of it or if anyone else could share theirs. What can I expect?

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  • Posted

    I am using oestrogen gel and testosterone so that bit is OK. Because my condition isn't gynaecological this was allowed. I guess you will have to wait and see what is OK for you. Before I got the HRT the full menopause symtoms were, hot. I wasn't in any pain post op. My surgery was almost bloodless. Apparently I only lost 40 mls of blood. The incision was from belly button to just above my pelvic bone. I took lots of propolis tabs before and after, which may or may not have helped with my healing. I continue to take them though! My condition has a large amount of microbes associated with it including heliobacter so logically it is a good stab at doing something for myself.
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  • Posted

    Hi there, I have recently been diagnosed with a 2 CM Complex Ovarian Cyst in my right ovary. My doctor was straight up about telling me they are concerned about cancer with this type of cyst. I will do a follow up scan on December 30th. I have done a fair amount of reading because I usually feel better to have the information. That said, it seems to me that even if a doctor wants to take a "wait and see' approach, the only real way to determine if the cyst is benign is to take it out. I understand that it is only a small % of these cysts that are not benign...but on the flip side most ovarian cancers are advanced before they are usually discovered....which leads me to believe - "Better safe than sorry." I am still all over the place emotionally about this, even if I don't plan to have another child at my age. I am in Canada, but this forum looked like a good place to connect with others.

    How long is the recovery if I have surgery? Does any one know. Anyone that has talked to a gynelogical oncologist know their thoughts...is the wait and see approach really practical?

    Thanks!

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  • Posted

    No. It should come out. I have commented before that I know several people who only had cancer within the ovary, not outside, or contained within endometriosis. In my own case I had to have it out, but now we are on wait and see because my condition is a slow crawler. I recovered very quickly considering the enormity of the op. I really hope that you will get the very best news possible. Having said that I respect the feelings that you have because I have had them. Sail your ship steady and best wishes to you.
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    • Posted

      Hi there i had my hysterectomy one the 12th Sep because of a large cyst on my left ovary and i went for my post op onlast Friday and she told me i had early signs of cancer in thecyst so i went to have CTcan yesterday.just to check it was only in the cyst.I am petriefied  the out come.Do you n if this is prity common xxxxx
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  • Posted

    Had my appointment with the consultant this week and my op confirmed for 6th Jan. Complex cyst 18 X 12 cm, CA125 count 11. Consultant positive but taking everything out due to my age (56) and being post menopause. Really scared about the op as never been in hospital before and also the recovery period as I am normally a fit and active person. Have read about bad experiences and putting on weight. Any reassurance from those who have been through this very welcome.

    The period between the ultrasound, blood tests, CT scan and the meeting with the consultant to discuss the results has been been an emotional roller coaster ride and now getting through Christmas another challenge. I just hope the cyst is benign.

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    • Posted

      Thanks for asking. I had a biopsy which came back good. I also had a DandC and now bleed and cramp worse than before. My cysts haven't grown nor moved thankfully, but my fibroids are growing. I'm afraid of having surgery for fear of making it worse and having a 36 year old friend pass last week due to a clot after surgery. I'm just going to try to deal with it as long as I can.

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  • Posted

    Hi Regina777 - I thought I would write to tell you of my experience with the whole procedure.

    I have just been through this scenario - you are right , it is very scary - I am 65 (just) and it is now appx 5 weeks after my surgery which was the 11th of November. My cyst was 25cm and weighed just under 4 kgs. The surgeon removed everything. The worst part was leading up to the surgery, and like you I had not been in hospital since my early 20's. Also not knowing the outcome was a worry.

    Once you are in theatre, and are anesthetised , it seems like seconds later they are waking you up. I had a morphine drip, catheter, drain and breathing apparatus attached which was not too bad - I can barely remember it now. The nurses were amazing and I managed to get up the very next day and have a shower (with help). There was hardly any pain, but I was not well, unfortunately I am allergic to metal (which I did advise them about), and they had stitched me up with staples, so I had to have a further operation a week later to remove the staples and be restitched. I recovered very quickly after that and was home two days later. I was lucky and they advised me the day I was leaving that my cyst was benign. I should have only been in hospital for 5 days.

    Five weeks later I am driving, doing general housework, walking easily (with care) and am due to go back to work on the 5th Jan. I am being careful about reaching up and down as don't want to strain anything. I am feeling a lot better than I did before the op.

    I have actually lost weight (which is good), my CA count was 7, I am sure that as you are 10 years younger than I am you will breeze through the whole thing. I do hope this helps. Apparently the bigger the cyst, the more likely it is to be benign. ie. it has been there a long time.

    Regards Carol - New Zealand

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