Well ladies I am so glad I have found and read through this whole thread hearing your stories and seeing how supportive you are of each others journeys is wonderful. My journey began June 19th with a call from my GP my CA125 (which I didn’t know he had tested as I went to him with menopause symptoms and low mood) was elevated at 45. He referred me for an ultrasound. Had the ultrasound yesterday 29th July both abdominal and Transvaginal. I received a text from my GP today saying they have found a complex cyst on my right ovary suspected dermoid cyst but I have been referrred on 2ww pathway to gynae for further investigations to rule out anything sinister. Well my mind has gone into overdrive and panic mode. Scared of what’s to come what will be done and what it could be …. What comes next ? How long does it take? So many questions and no one to speak to but now I have found this thread and it’s given me some comfort. Thank you. I hope you are all healing well and looking after yourselves. I doubt I will sleep tonight not knowing for sure now there is something inside me that could be sinister. 

Hi there. Your story sounds very much like mine. I had post menopausal symptoms that I was concerned about, and was automatically put on an urgent 2ww referral for an ultrasound (abdominal and transvaginal). The last thing I expected was to be told I had a large complex mass. Just hearing the word "mass" completely terrified me. Right from the start, they thought it was probably a dermoid cyst, but continued to keep me on the suspected cancer pathway until further tests had been carried out. It was at this point that they did the CA125, and when I found out it was raised at 51, I really started freaking out. The only bits of information I could focus on were the sinister bits. This all happened at the beginning of December and I didn't find out what I was dealing with until around 9th January. It was the longest wait of my life! The MRI scan confirmed a dermoid cyst and I was finally removed from the cancer pathway. I think from reading other people's stories, it seems that if they think you've got a dermoid cyst, then you probably have. All the other tests are just extra reassurance. At the time, it feels like all the other tests are being done because something terrible must be happening, but it's just procedure. It's taken a long time to get my surgery and I've still not had my histology results back, but I'm healing well, I'm not in any pain and I'm basically back to all my pre-surgery activities. I was actually given the option to have no surgery at all and just monitor the cyst over time. At my age, I decided to just get rid to reduce any future issues. The additional procedure to remove my ovaries and fallopian tubes took no time at all and I was back home by 2pm! Try to keep reminding yourself that they think it's a dermoid cyst. They are most commonly found on the right ovary, they can cause raised CA125 and they have quite distinctive characteristics on ultrasound and MRI scans. They are also almost always benign. Take it easy and let us know how you get on. X

Hi cloudy, just reading over this again, I hadn't realised your surgery had taken so long! Glad you're doing well though. My belly bulge has reduced now thankfully. I've had one stitch fall out, but the others are still hanging on. I've been told by my doctor that this is normal and they will probably come out over the next couple of weeks. I've managed to book a city break to Porto in November. Can't wait! X

Thank you for taking the time to reply and easing my brain as to what will happen next. I go on holiday in 3 weeks so hoping to be seen before then. Your journey does sound like mine as do many others so I will keep that in my mind it’s a dermoid cyst. My best friend named it Gemma already why I do not know trying to keep it light hearted I bet. Sending you healing thoughts and thank you again x

Lovely to hear you have booked a trip! That’s great news. Glad to hear your bulge has gone down. I am pretty healed now, back to full health and no pains unless I lean on a counter or my baby nephew kicks me when holding him. I have a couple of small stiches still poking out but my incisions marks are now so small, all the glue has gone and just waiting for these stiches to disappear. Back to work next week. Still awaiting histology results of course, hopefully not long now x 

I nicknamed mine dermot, I think I read it on another forum and it made me laugh so that was its name until eviction day. 
As you have read through the thread you will know our stories and where we are. it’s a real positive to have already been told that it’s a complex cyst. I would assume next stage for you might be an MRI but maybe not if they can see it well on an ultrasound. I got my MRI as they weren’t sure what it was and also to determine what could be saved and what couldn’t. Funnily enough I was told that I would certainly lose my ovary and then the surgeon saved it in surgery so you can only tell so much  until they are in there in person. Did they tell you the size of your cyst? That will determine some of your plans moving forward too whether Igemma will also be getting evicted! Mine had long hair, I don’t know why I find that so freaky!x 

How are you?x

Hello ladies,

I posted on this thread earlier in the year but dipped out as I thought my issue was resolved.

I had my first MRI in June which showed a 35mm cystic lesion pressing against the ureter and overlaying the obturator muscle. This is very confusing as they removed a larger mass during my laparotomy which was benign. The MRI report suggests that this is the very cyst that showed up on the CT scan in December which kicked this off. It also has malignant looking features.

So I'm back to square one as they aren't sure they got what they thought they were getting?! 

I'm awaiting a transvaginal ultrasound guided biopsy. Had two failed attempts already - first of all they ran out of needles so couldn't do it. The following week I was all ready to go but I found it incredibly painful so I'm having it done under GA instead.

What a palaver!

Goodness what a palaver indeed. To get a laparotomy and didn’t get the thing they went in for! What a shame for you. So glad they seem to be trying to resolve and quickly though. Can I ask - why are they bothering with a biopsy instead of removal? Especially if you are being put under anyway? Hope you are ok x