Emma: ‘I was diagnosed with endometriosis, then discovered I had ovarian cancer’

Emma, now aged 42, found out that she had a cyst on her ovary at a routine ultrasound in 2022, during her treatment for endometriosis. She was diagnosed with ovarian cancer one year later, after a cyst grew rapidly on her other ovary.

Emma shares her journey to diagnosis, how she has managed to retain a positive outlook during her treatment, and her advice for other women with ovarian cancer.

“I was suffering from heavy and painful periods which got worse and worse. One night I was so poorly that I was throwing up and fainting.

After seeking advice from my GP and undergoing referrals, I was diagnosed with fibroids and endometriosis in March 2020. During a routine ultrasound two years later, a small cyst was found on my right ovary.

But the doctors weren’t too concerned so kept it monitored - until a second cyst appeared on my left ovary a couple of months later. This cyst grew rapidly to 11cm and I had a huge bulge in my lower belly. I was put on the surgery list in July 2022, for keyhole surgery. 

Following an MRI at University College London Hospitals (UCLH), the doctors became concerned and I was put on a waiting list for open surgery in March 2023. 

Although I was given information about the possibility of it being cancer, I remained very calm. I kept thinking of the best outcome. Ovarian cancer wasn’t at all something that crossed my mind before this. I didn't really have any of the symptoms except bloating - but perhaps this was just masked by my painful periods and endometriosis.

I was told that they planned to remove the ovary with the cyst, and test it there and then for cancer. The best case scenario was that no cancer would be found and they would close me up. But if cancer was found, they would do a complete hysterectomy and remove the local lymph nodes too.

My surgery day arrived in March 2023. I went in at 10.30am and woke up at 5pm - so I knew it wasn’t a good outcome. Cancer has been found, and the cyst also burst during surgery. When they sent a sample off of my womb to find out if the cancer had spread, I knew worrying about the outcome would get me nowhere. I remained positive until the results came back.

It was then that I was then diagnosed with ovarian cancer stage 1a. Following the diagnosis - they confirmed it the cancer hadn’t spread within the womb, but chemo was advised. 

The first few weeks after the surgery was really tough. My appetite went and I was of course weak. But three months on, I'm getting stronger, managing longer walks and eating lots again! I am also on Hormone Replacement Therapy (HRT) patches.

I’ve also been undergoing chemotherapy to make sure that there are no stray cancer cells remaining. This was a no brainer for me.

Chemo has been difficult. During my first session, I was very ill and ended up on antibiotics and a drip in A&E. I’d caught an infection and was very sick - I had a bad rash and felt incredibly fluey and achey. 

Luckily, round two was much better minus a few days of feeling exhausted and a bit wobbly. But NHS staff have been amazing to me.

I'm trying the cold cap to try to keep most of my hair as hair loss is a side effect with the drugs I'm on - unfortunately so far a lot is coming out! It's thinned so much on my crown and I have bald spots on my sides.

The hair loss was the trigger for me and I had a huge meltdown

Otherwise I am feeling very strong, looking forward and trying to keep positive. I have four chemos to go - here's hoping they're like my round two!

Looking back now, my other advice would say to other women with ovarian cancer that it’s always definitely worth asking your GP about your symptoms. Some of the symptoms of endometriosis are similar to ovarian cancer - like persistent stomach pain, bloating, needing to wee more frequently or urgently and difficulty eating or feeling full more quickly. The most important thing is to be symptom aware and to act on anything unusual quickly.

I’d also say, don't be afraid to ask questions during online searches and forums. Seek advice from other people in the same situation as you. It's helped me a lot knowing various symptoms and how I've felt during chemo happens to others too.

I still feel like one of the lucky ones that I was tested and treated early enough that the cancer was contained.

My scar is now just a part of me! I was always pretty body shy - but knowing what my body can take and what it’s been and still going through - I know I am tougher than I ever thought possible.”

Women with endometriosis have a small increased risk of developing ovarian cancer compared to the general population.

Our team of scientists are working to discover breakthroughs in ovarian cancer research, including for those with an increased risk of developing the disease.