Ovarian terratoma

Hi everyone 

I’m at a point where I don’t feel like I can talk to my partner /friends anymore about this because they are worried and I don’t want to stress anyone out. I became ill at the end of February. I had stroke like symptoms - facial drooping , lost feeling in limbs and tingling etc. My symptoms didn’t fit with a stroke, after countless scans etc and seeing a consultant I’ve been referred to neurology to further investigate. These symptoms have continue leaving me unable to function some days. After a crippling 3 day headache and my body just not working properly I went back to A&E and during a CT scan on my heart they casually mentioned I had a 9cm ovarian terratoma. I was really surprised but asked straight away of this could be the cause of my issues. I’m a 38 yr old for healthy runner, don’t smoke or drink so being ill like this is just not normal at all.

I’ve waited 4 weeks to see a gynaecologist ( my appointment is tomorrow ) and in that 4 weeks have had terrible bloating , severe lower back pain , blood in urine etc. I went to out of hours on Friday just to check I didn’t have an infection . Whilst there I mentioned a very swollen large lymph in my back , my doctor said it wasn’t a lymph and that they would scan. after the scan mtge doctor said I would need to get an ultrasound on this as it didn’t appear to be a cyst as first thought. Surely thos must be related ? I’ve never had anything like this on my life.

I’m preparing myself for the worst news because I’m aware that I am ticking most of the boxes for cancer.  I’ve had weeks and weeks of waiting and my anxiety is through the roof I’m at a point where I just need to know. I just want my life back .
Has anyone else had experience of ovarian teratoma causing neurological issues? I’ve done a fair amount of research but just wanted to hear if anyone has any first hand experience and what the outcome of it was. 
Thanks for reading x

  • Hello! 
    I am also 38 and also have a 9x8x4cm dermoid cyst. Also called  mature teratoma. 
    The reason they found it in the first place is because of numbness and tingling in my left leg, I had a spinal MRI and they found it. my cyst is heavy and affects L3/4 of my spine and is very likely to be causing my symptoms. 
    otherwise I never would have known, no period issues, no bleeding, pain etc. 

    I started my journey in finding out about it in October and I’m going for surgery in July. Can’t wait to see what difference it makes to my life as this stupid numb leg when I’m running drives me mad. 
    blood in your urine - are you sure your cyst hasn’t had a rupture or maybe a uti?

    try not to worry, I know that’s a stupid thing to say, but cancer at our age is stil so rare. 
    ask them to test your CA125 blood levels, will help give a better picture to the gynae team.

    x