Borderline Ovarian Tumour Diagnosis
My life as a young woman trying to forge a creative career in London after university took an unexpected turn. In December 2014, I was diagnosed with a borderline ovarian tumour (losing my right ovary) at the age of 25. The ovarian mass was the size of a small baby. A traumatic ordeal that could have been prevented if I had not experienced medical gaslighting from various GPs. They ignored my symptoms. I visited the GP six times over four months, but I was constantly dismissed and asked, ‘Are you stressed? I think it could be irritable bowel syndrome.’
At the beginning, the GP did perform a pelvic examination, but they assured me that everything felt fine. I remember asking for a scan referral and they said it wasn’t necessary. The GP thought I may be experiencing irritable bowel syndrome (IBS), due to stress and referred me to a nutritionist.
The symptoms I experienced – extreme bloating, tummy pain, constipation, diarrhoea, nausea, acid reflux and fatigue. Every time I ate something when going out to a restaurant or even making a healthy meal at home, my stomach would blow up like a balloon. I switched to a gluten and dairy free and low fodmap diet. However, I was still experiencing the same symptoms. I had blood tests to see if I was intolerant to gluten and they came back negative.
I remember being asked by a colleague at work in September 2014, when my due date was and the same day, I doubled over in debilitating pain in Covent Garden whilst walking to the tube. I’m surprised I even made it home. Looking back, I should have gone straight to A&E.
I decided to go and see a kinesiologist (a holistic therapy which tests muscle response) who advised me to demand a scan, as she felt that something wasn’t quite right. I finally demanded an ultrasound scan and had a referral made. In October 2014 whilst the scan was happening, the sonographer looked rather concerned. They buzzed for a consultant and immediately I was signed off work. I had to wait two weeks before having an MRI and then a couple more weeks waiting patiently for major surgery.
I spent five days in an NHS hospital being closely monitored after surgery. It was a traumatic time, but I had a supportive network of family and friends. I got signed off work for eight weeks and recovery was total bed rest. It was important to keep my strength up as I had lost a considerable amount of weight. Returning to London, I only worked part-time for the first couple of weeks as my energy levels were very low. In hindsight I should have taken longer to recover. After five months I started to feel very anxious. I just couldn’t keep up mentally and physically with the pace of London life.
My consultant made the decision to sign me off (it ended up being for a year) as I was experiencing post-traumatic stress disorder (PTSD). An 8-week (NHS) mindfulness course and counselling (private) supported my PTSD during this time.
The trauma of surgery and living with scars has affected my mental health, body image and my ability to be intimate at times. However, holistic therapies have supported me to process trauma and to be accepting of change.
For the first few years I had ultrasounds, transvaginal scans and bloods (CA215) every three months and now they are every six months, to make sure that there is no evidence of a borderline ovarian tumour recurrence. Even though I feel very lucky to be monitored, it has been an emotionally exhausting experience.
A year after major surgery I started to experience raw pain in the vulva. My GP referred me to a physiotherapist and dermatologist. However, the creams they gave me exacerbated my symptoms.
I went back to my consultant in London, and they diagnosed me straight away with Vulvodynia – a chronic, debilitating neuropathic pain condition. I was given a cream called lidocaine which helped tremendously, and I was advised to use specific period products. Vulvodynia can prevent you from comfortably sitting and walking. At times, I have been unable to wear underwear which can be very distressing. Over the years I have found that surgery, stress and certain foods can trigger the condition.
Fast forward a few years, I underwent laparoscopic surgeries in 2018 and 2021 for severe endometriosis. As a young woman with ovarian endometriosis, I had the opportunity to preserve my fertility through IVF.
I have lost count of how many blood tests, transvaginal and MRI scans I have had. However, on a positive note, I am very grateful for the regular checkups, multidisciplinary teams and support from the consultants and specialist nurses.
My advice would be to stand strong and always advocate for yourself.
- Do not take no for an answer
- Make sure to take someone with you to your appointments
- Research into charities – helplines – forums – NHS & private clinics
- If you experience medical gaslighting, change doctors (I always ask for a GP that has a background in women’s health)
- There is no harm in asking for a second opinion
- Go to A&E if you have to
- Don’t suffer in silence – ask for support from GP, councilor, family, friends, partner
- An enormous amount of pressure on relationships – emotionally and intimately – being patient with each other – communication is key
- Maggie’s Centre – offers holistic therapies
Having a supportive network, yoga and living a mindful lifestyle whilst prioritising self-care has been paramount to my health journey. Self-advocacy and following your intuition if something doesn’t feel right is so important. Through the spoken and written word, we must openly talk and share our stories. Collectively women can empower, educate, support and accelerate change!
If you have any concerns or worries about any gynae symptoms you are having, you can contact our nurse-led information line, Ask Eve, for free advice and information. You can get in touch on nurse@eveappeal.org.uk or 0808 802 0019.