Just diagnosed with a multiocular cystic structure in the right ovary extending to 7.0 x 5.6 cm. The anterior most component is made of several small size and a possible tubular. The posterior most component is composed of a larger cyst measuring 5.4 x 4.3cm. There is no nodular enhancement post administration of intravenous gadolinium. The posterior component has slightly elevated T1 signal but no evidence of haemorrage. The left ovary is unremarkable.
I have been told I need surgery to remove the mass both ovaries and fallopian tubes. I am 52 and still getting regular periods. I have history of endometriosis.
I don't really want surgery as I am a primary carer for my mum but I don't know if any other options open to me. My CA125 is 11 on a recent blood test. They have told me that they won't know if benign or malignant until they take out.
Anyone been through a similar experience? They have said it is a sold cyst and complex! Also worried about being thrown into menopause rapidly and the side effects given that my father had parkinson's and my mother has memory issues.
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Ova104
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can you pay privately to a endo center to make sure it’s not that recurring.
I was told I had a mass , had to go to Christie’s as they thought was cancer but was endo lost a ovary because of it when it could of more than likely be saved and the trauma of going through all of that was not great it’s made me very paranoid .
my surgeon had to call in their fellow consultants and change direction, as prepared as they were for horrific cancers they couldn’t deal with and weren’t prepared for severe endo and organs stuck together! Yes it leaves you with a lot of questions and you just get left to get on with life and deal with it all.
I think they shouldn’t have dismissed hrt, it’s way changed since decades ago and I think it should be part of the discussion- what happens after surgery, not just getting it done as such. I think taking a bit of time to make sure you know you’re making an informed decision will help, I am always thinking I may have got it wrong as was rushed. Then again it may have been best, just wish they’d been more informed about the endo and I’d taken more time.
I so appreciate you emailing back, going to take my time regardless of people going this could be ovarian cancer... I need some questions answered. I think they see complex mass, go she's 50s get ovaries out fallopian tubes, mass. Same thing said you don't need your ovaries when you hit menopause.... But I want to know how risk assessments are done exactly the features of the mass malignancy risk assessment and IOTA or whatever they use and still months later and don't have this info. I am wondering is this why Ireland has the highest mortality for ovarian cancer if patients can't get info they need. I really hope not but I am feeling frustrated. I am now going to see someone else who covers endometriosis and is someone not just gynae oncology. You can only go forward now and you have just helped me so much by replying. I wish I had been more informed about my Dad putting him into a hospital that ultimately destroyed his parkinsons but I learned the hard way from that to have very little trust which is also probably a bad thing. I think you made the decision with the best advice you were given at the time and that is not your fault. I am years looking at medical profession so I am very sceptical after the mistakes that were made with my Dad. I hope you are ok xxx hugs
Thankyou, and I still feel more guilt about my dad going into hospital with the paramedics but that was I think the only option really available at the time, you make the best decision you can.
My risk score was high because over 50, a recent bleed whilst allegedly post meno, the odd selection of cysts snd a mid high CA125, not in the thousands. CEA and another marker were both all low. I think there is a minimal understanding of endo unfortunately so hopefully a specialist in it will be more help
At least they check us out now, in the past I think we would have breen ignored which is why rates are high.
Is your dad ok? I feel awful guilt too because my Dad went into a hospital and they destroyed him changed all his drugs with the parkinsons and he got irreversible delerium and then it progressed to Lewy Body. He went into hospital perfect in his mind went in with urine infection and they destroyed him nearly come out dead.. Told me he had stopped eating etc due to Parkinson's but it wasn't the case. He lived at home with us for 3 years before he passed away in a terrible state hallucinations etc. I think the stress of it made my endometriosis worse because I was working and caring and had no time to get checked. I am very wary now of the medical profession. Doctors differ patients die. I am so sceptical and question everything now.
I would not be surprised what I have but I wish the consultants could answer the questions. I hope the next consultant is better at least he has endometriosis background and is probably a lot more senior for this kind of thing. He is supposed to have a good reputation. They don't even do CEA in Ireland I found out about that on this site and asked my own doctor could it be done. They just use CA125 here. I did that myself last week no consultant suggested it.
I went for years no one knowing I had endometriosis just fobbed off and told period pain even though crawling cold floors for years and fainting etc..
I think when consultants throw about the cancer word they expect me to go here take my brain no questions asked but now I am going you are frightening me more by not giving me all the facts...
Thankyou for asking, it was never going to be a happy ending, he was only in a few days and I was with him but I wish he had spent his last few days somewhere else. My treatment in hospital on a women’s oncology/gynae ward was so differ to what I saw in the elderly unit, or geriatric as they call it, but it was difficult as less than a year after my dad. It still haunts me tbh.
Yes I had the same with endo, horrific blood loss and doctors telling me it was a tablespoon, just looked worse- and yes I had fainting too, and also woken up on bathroom floor after passing out unable to move to get to my mobile, I wonder now if it was burst cysts it was so excruciatingly painful.
Endo is so complex isn’t it, I used to get fed up of hearing sanctimonious ‘all women get periods’ type statements!
oh my God that is awful. I am so sorry for you and it is so good of you to email me back. I have taken your advice and found another guy who is endometriosis, oncology and gynae it is a two month wait but would rather wait as I felt last two opinions are missing a lot of information and I am still trying to get answers to my questions. I am terrified of surgery as my Dad had parkinsons lewy body and my mum has vascular dementia and they say removing both ovaries when there is family history neurological is very dangerous because of long term risk of dementia removing both ovaries. I am a primary carer now for my mother. I would do anything to avoid this. My Dad was damaged in a hospital so I have no faith in the medical profession and that is putting in mildly...I won't even go into that to say I have ptsd from it is an understatment. Love to you and hope things get better for you. I am so sorry that happened to you xxxxxxxxxxxx
another thing I was confused about was they had no interest in saving either ovary and the left ovary has no cysts fibroids nothing. Right ovary is where they are saying the complex cyst is. They said if fertility was at stake then they would! So once 50s they have no interest in saving a perfectly healthy ovary? Is this not insane? Something about risk of same happening to that. But risks removing both? Seems so dumb to me. Again the age old 'ovaries have no use after menopause' ...
They seem to think it will stop anything bad in future rather than go through more surgery, especially if open. Both of mine weren’t good, else I would have been wondering too. Hysterectomy used to leave one I believe.
going to endo centre tomorrow and praying they can actually answer all my questions. 4th time I am going to a consult to get answers and hoping this is the man for the job as I have heard good things about him!
Had lots of complex things on my scan too, but mine turned out to be all endometriosis.
Oncologist surgeon was good but their aim was to minimise risk, and at 50, nhs did not give other options.
It was a stressful time and I was relieved it wasn’t ovarian cancer, but appointments were very short bit of a conveyor belt. It took multiple 2 week wait appointments for each scan and blood test so it was several months into the process before I saw a specialist to discuss, but then straight into surgery following week which was a shock
If I went through this again I would want a rescan in a month or so to see if anything has changed, and as recommended above I would want to discuss with endo specialist too, they may have more insight into the endo cysts in the scan.
In my case I wish I had hormone blood tests, I think I had thyroid issues which they attributed to age/menopause so I may not even have been recently post meno.
I also think hrt options are vital to discuss, they said there may be issues with endo and I didn’t need it as post meno. Either way the ovary removal with no hrt knocked me out. I have since been told even if post meno the ovaries are important, especially early on, yet when I asked the surgeons as I did my best to read up on it they said not- but they were oncologists I guess it’s not their specialism.
And could they not identify that beforehand that is what all endometriosis it is frightening. I had my last scan in June and they put no suspicious findings and now this consultant saying the multi disciplinary team have come back and said suspicious yet won't give me all the reasons and findings. I don't want to end up worse off after surgery. So as I mentioned I am going to someone else more senior and who has endometriosis background even if I have to wait. I asked the second consultant 'is everyone like me asking a lot of questions', she said 'no'. She said your questions are also based on the bad experience you had with your Dad. My first cousin had double mastectomy and ovaries removed and she could not have HRT as hormone driven cancer in breast. Totally hit wall no hrt... and no real other solution offered minding two young kids. But it should be their specialism as what happens after you have surgery is hugely important. Yes I read a lot how important ovaries are and more risky removing if parents have neurological issues. I hope you are doing better now??
ultrasound looked horrendous, but that was because in my case there were adhesions so the image was messed up, the MRI I think was clearer and mentioned one or more of the cysts being haemorrhaging endometria. But they weren’t endo specialists so I think that’s where the problem was. When I asked what stage endo it was after lap and surgery they were not able to say. I think with the adhesions I had and extent, it is quite widespread, but I was a bit shocked they had no idea.
Keyhole I believe has much much quicker surgical recovery time than the c section type scar.
this is so basic that if the person has endometriosis surely the surgeon and the multi disciplinary team need knowledge on this..it honestly just scares me. I may have to wait another two months for apt endometriosis guy that's referral time. I am not going to be rushing despite being classed as urgent enough last consultant. I really don't know the info is all too vague and of course I didn't get exact classification of the mass. Hopefully next consultant is a bit more with it on the endometriosis front. ..
Hi all still didn't get an endo centre appointment so difficult in this country only one good one.
I got my results recently of MRI repeated. The mass has only increased marginally in size. I am still in limbo. I have repeated CEA and CA125 so should get those results tomorrow.
Got letter from other hospital which said 'our impression from reviewing the images with our consultant radiologist is it is possible that this is tubular in nature, but it is of course hard to be definitive and it may or may not involve the ovary. Certainly it seems reasonable given both the symptomatic component and the age of the patient to proceed with salpingo oophorectomy. Of course it is up to the clinical judgement of the surgeon at the time of surgery whether salpingectomy alone can be performed but this may or may not be possible. Conservation of ovary would seem reasonable although the patient will have to be counselled that this may result in a second surgery if the pathology from the unilateral new salpingo oophorectomy is sinister in nature'.
They have not seen the new MRI yet which was done in October they are going on the March MRI. To be honest they did not seem interested in redoing the mri in either hospital so I took it on myself based on all your advice here.
Now I have a) one consultant who wanted to remove both ovaries and fallopian tubes and the mass saying possibly malignant could be benign. The second concologist saying salpingo oophorectomy but that depends and the other one before that full hysterectomy! Does anyone really know. They clearly don't seem interested in watchful waiting.
I am sending back the new results to each oncology/gynae again which state:
"5.2 x 5.8 x 7.4 cm complex cystic lesion again at right adnexal level which possibly contains a tubular component anteriorly. This appears to marginally increase in size from prior study of march 2023 but it is otherwise unchanged. Specifically no solid component or other concerning features. 1.8cm simple appearing follicular cyst seen within the left ovary. Normal appearing retroverted uterus. No adenexal or pelvic mass seen otherwise. No free fluid or other pelvic abnormality seen".
I do have dull ache pelvis all the time sometimes pain into the lower back worse lying down at night can't get comfortable. My periods have stopped since August. Hope they stay away as so painful for years and had become heavier. I have suffered with endometriosis since 14 only diagnosed in 2015 after years of horror and doctors fobbing me off. I'm 52. I have back issues anyway from hoisting lifting for years (caring for Parkinson's) where now facet joints hurt and degenerative changes.
Any advice welcome. Just waiting for CA125 blood results and CEA tomorrow. Also waiting for apt proper endometriosis centre as I really don't have confidence in all I am being told..Can this not be taken out/burst without going near fallopian tubes/ovaries.
Sorry for long drawn out writing.. This is growing but very slowly so as it is not solid could it go away? I am caring for my mum and I really don't want to end up worse such is my faith in the medical profession after years of being fobbed off. The endometriosis never gets mentioned even now it's just ridiculous.
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