Liz
Ovacome member Liz’s experience with ovarian cancer all started back in June 2017, when she experienced a post-menopausal bleed. After an ultrasound, doctors discovered a cyst on her left ovary which led to Liz having surgery to remove the cyst as well as her ovaries and fallopian tubes. Unfortunately for Liz, despite having her ovaries removed, this was to be the start of several years of mystery pain and symptoms without a conclusive diagnosis or full understanding of the issues she was facing.
It was in 2021 that Liz began to experience new symptoms that mimicked her initial ovarian cyst symptoms, which led to her visiting the doctor for further investigation.
“I started having tummy cramps and I just didn't feel right. Anyway, went to the doctor - irritable bowel, I said, fine, okay. So, I went back a couple more times, and I said to him- ‘this feels like the same pain I had when I had the ovarian cyst’. We both laughed because he said- ‘it can't be because you haven't got any tubes or ovaries.’”
Liz subsequently faced two years of intermittent pain and discomfort while heading back and forth to the doctors with no clear answers, eventually having her abdomen examined by a doctor again to be told that her bowel was inflamed. It was in September of 2022 that Liz started to experience changes in her toilet habits, but because of the lack of major concern from her doctors combined with it being a stressful time in her life, she brushed it off as nothing to be too concerned about.
“In 2022 I started having problems with my waterworks, but my mum was seriously ill, and I was back and forth working full time looking after her. So up until that period, I was practically in hospital all day, every day you know - looking after her. During this time my symptoms got worse, and my tummy started swelling, but I thought to myself – ‘Oh, it's my age’ and I sort of dismissed it.”
It was only during 2023 that due to worsening symptoms and excruciating pain that Liz’s persistence with visits to the doctors paid off, as she was referred for another ultrasound. The scan showed that Liz had a cyst the size of a full-term baby, which had been causing so much of her pain. Urgent referrals swiftly followed and during a stay in hospital a CT scan actually revealed that Liz had four more ovarian cysts. Due to the concerning nature of the cysts and symptoms, Liz was able to have an operation quickly after referrals, in which she underwent a full hysterectomy.
After the surgery Liz then received a letter that stated she needed to attend an appointment in June, and two weeks after her 60th birthday, Liz received the news that they had found ovarian cancer in some of the cysts that were removed. Liz’s ovarian cancer was diagnosed as stage 2, and since her diagnosis she has had chemotherapy, something Liz found very challenging due to the neuropathy it caused.
During her journey of managing her diagnosis, Liz came across Ovacome and was encouraged to attend one of our Health and Wellbeing events in Bournemouth. These events are an opportunity for anyone who has been affected by ovarian cancer, as well as family and friends, to attend talks and workshops and to meet others affected by the disease.
“Oh, honestly, I can't tell you how much the day helped, because I went there and I thought I would only stay for an hour but ended up staying for the whole day. I got talked into going really but I’m glad I did because I absolutely loved it.”
Liz also spoke about her lack of awareness of ovarian cancer before being diagnosed and why Ovacome has been such a strong support network for her:
“I don't think I was aware of ovarian cancer at all – it just didn’t even cross my mind when getting treatment for the cysts. I’m so glad I found Ovacome as it’s specifically for the cancer I have, and I really liked the stories on the website because it made me feel less alone. They're like real people telling real stories. I really just want to say thank you for being there. It's a fantastic charity, and as I say, I didn't know about it before - with the information and support services, Ovacome has taken me from a lonely scary place to a place of empowerment.”
At Ovacome, we aim to provide a wealth of support resources, which take the form of our support line, information booklets, our online discussion forum and various support groups, activities and webinars. Liz explained that since she’s been diagnosed with ovarian cancer, she has found keeping active to be a big benefit for both her mental and physical health – which was something she could do with others using our online exercise classes and workshops.
“Initially, when I found Ovacome, I joined a couple of your support groups - there was a relaxation class, a facial and a massage class. I did a few things like that, which was great. Throughout the course of my diagnosis staying active is really important for me, so having the option to come to these groups is fantastic, especially as I still have so much energy. I’ve carried on my cycling twice a week. I do my yoga twice a week. I do a gym session, and I've got my PT trainer. I'm just so active, really active. It's just so bizarre to think sometimes I’ve got this ovarian cancer diagnosis but still have so much energy!”
One of the key themes in Liz’s story was the fact that actually getting a diagnosis of ovarian cancer proved very difficult for her, and a lot of her symptoms were attributed to other things and some were even dismissed altogether. She also experienced erratic fluctuations in her CA125 levels that weren’t helpful in aiding a diagnosis. Liz has also reflected on the fact that she didn’t have any prior awareness of ovarian cancer making things even harder.
By sharing her story, Liz hopes to inspire others living with ovarian cancer that they can still be active, as well as the importance of being persistent with getting symptoms checked out. At Ovacome, we hope that Liz’s story will help raise further awareness about ovarian cancer and encourage more people to share their experiences.
