This Ovarian Cancer Awareness Month, Jess shares her story of being diagnosed with a rare form of ovarian cancer, called dysgerminoma, and her fertility preserving treatment.

Diagnosed with dysgerminoma

Back in 2021, at the age of 23 I was diagnosed with a rare form of ovarian cancer called dysgerminoma.

With no knowledge of the signs and symptoms of gynae cancers, and the belief that they only occurred in older women, I had kept overlooking symptoms and attributing them to other things. The diagnosis was a huge shock.

The first symptom I noticed was tiredness, but given we were in the middle of a lockdown I thought I was just feeling low and tired like everyone was at the time. I was working from home and started to get so tired that I would sleep through my whole lunch hour and then have to start taking quick power naps throughout the day. 

I had just taken up a new hobby, playing beach volleyball and thought I was feeling extra tired because of this, but then I started to get really dizzy and after playing would go home and be sick. I was sick multiple times, and it would often carry on for a few days after. The sickness started to happen at other times too, not just after exercise, and got progressively worse.  

The third symptom to add to the list was having to go to the toilet up to three or four times in a night and feeling thirsty all the time. I didn’t really think about what was causing me to be thirsty and I just thought I was going to the toilet more because I was drinking more.  

Finally, I started to lose weight… very quickly. Again, because this all started around the time I took up a new sport and started exercising more, I thought that this was why I was getting thinner. Then my lower belly started to protrude and became hard. I naively thought this was my natural body shape and maybe this was just some ab muscle. Women are always told to check for lumps in their boobs, but there is less advice to look for lumps and bumps elsewhere – so it never even occurred to me that this could be a tumour, let alone a tumour that measured 17cm across!!  

Not knowing the symptoms, I didn’t immediately put them together to think that there might be a link. However, when I rang my mum and started explaining the combination of tiredness, sickness, frequently going to the bathroom and a lower belly bump, she immediately instructed me to go and get a pregnancy test. Needless to say, after a very anxious trip to the pharmacy, the results were negative. I did another two just to be sure.

After one particularly bad weekend of not being able to eat or drink, I went to my GP. I had blood tests, another pregnancy test and she felt my belly. The doctor referred me for an urgent ultrasound, but told me it was just a precaution. The next day I was getting ready to start work when I had a call from the GP to say that I needed to get to A&E ASAP because my kidneys were really struggling. I was then admitted to the hospital and stayed there for almost a week, in which time I had a biopsy and a whole host of scans and tests.  

Ten days after I first went to the GP I was diagnosed with dysgerminoma, a form of ovarian cancer that occurs predominantly in young women.

I was quickly referred up to the Royal Marsden in Chelsea where I soon started my first of four rounds of intensive chemotherapy. I also underwent a laparotomy to remove my affected ovary, fallopian tube and some lymph nodes.  

Within 5 months of first visiting the GP, I completed all my treatment and received the all-important all-clear!