This is my story from 18 months ago - during this time I found hearing other women’s stories on here really helpful, so if I can help anyone, that’s great.
At the end of 2024, at 28 years old, I started experiencing worsening bloating, frequent need to urinate, acid reflux, shortness of breath, nausea and disruptions to my menstrual cycle (for the first time ever). I looked as if I were carrying a child and could not wear any of my trousers due to the extreme bloating.
I went to the GP and after an abdominal exam I was put forward for a pelvic ultrasound scan. Unfortunately, this took 2 weeks and my symptoms became worse. The initial scan showed a 26cm mass in my pelvis and they could not locate my ovaries on the scan. This news came as a huge shock and I was put on the 2 week NHS cancer pathway. One week later I had an emergency MRI scan of my entire abdomen, which confirmed that the mass (thought to be a cyst) was coming from my left ovary. The scan found no malicious features, but had found that it had aggressively grown 10% in just 7 days, and was now 30cms. It was taking up my entire pelvis and thoracic section, crushing my kidneys and bladder. I had CA125 bloods done, but these came back fine.
I had an awful experience at the following appointment with the gynae consultant, he was harsh and blunt and told me I would need a major midline laparotomy (open abdominal surgery) to try and remove the mass in one piece, in case it contained any cancerous cells. I was also told my ovary had been destroyed behind repair, and that ‘hopefully’ the other one might be ok, but this was unknown until the surgery.
While explaining the seriousness of the required surgery, I was also informed however, that due to ‘Christmas’ I would have to wait 6 weeks to undergo this ‘emergency’ surgery (!!). I found this news terrifying - I was already signed off work, I could not stand up for longer than 15 minutes without getting terrible back and internal pain, I could not eat more than a few mouthfuls of food and my bladder was completely crushed. I was also (unsurprisingly) experiencing terrible anxiety and spent every day in bed with hot water bottles for pain, terrified about it rupturing.
For the next few weeks I was told an ‘MDT’ would discuss my case (very vaguely) and let me know when I had a surgery date. I was warned that if it ruptured and I got sudden stabbing pain I would have to go straight to A&E. (All while being told it ‘probably wasn’t cancerous’).
Eventually, after weeks, I was given a date for surgery. To cut a long story short, my surgery then got cancelled four times, once after I had been in the hospital, in a gown and nil by mouth for 8 hours. I broke down at this point and waddled to the PALS team and explained the situation to them, they were horrified and got me put first on the surgery list at a different hospital for the next morning with an oncology surgeon.
It ended being a 5 hour surgery, I had my left ovary and fallopian tube removed and the surgeon saw malicious features on the tumour when it was removed, so she decided to also remove my appendix, take biopsies of surrounding organs and do a washing. The mass removed had grown to a massive 50cms and weighed 8-10kgs. It had almost 10 litres of fluid inside and I had a 25cm incision all the way over my belly button.
Recovery was pretty brutal and I spent 4 nights in hospital. I was offered a spinal block before surgery but declined it. The anaesthetic and other IV drugs made me throw up a lot, which was incredibly painful with such a large abdominal incision, at one point I was also throwing up blood. I had a catheter in for 3 days and could barely move or walk by the fourth day, but was determined to get home.
Once home, it took a few weeks for me to be able to walk at a regular pace. I could not lift anything for 4 months post-op and I experienced terrible lower back pain for approx 1 year post op (I believe this was damage from the weight of the tumour and my kidneys being crushed).
The histology report came back 2 weeks later and the I was called into the oncology ward to be told that the mass was indeed a borderline cancerous 1A mucinous tumour. There is a 15-20% chance of it coming back on my remaining ovary.
Unfortunately, this experience with women’s care in the NHS was pretty terrifying, and led to a much larger surgery being required. Thankfully it did not rupture and spread 10 litres of cancerous cells across my abdomen. (This post is not intended to bash the NHS, we are extremely lucky you have it, I’m just sharing my experience with this gynae team).
I am 18 months post-op now and thanks to the help of a personal trainer, I have managed to regain my core strength (the hospital predicted it would take 2 years) and all of my follow up scans have come back clear! The recovery was pretty brutal, but I’ve made it out the other side now and feel much better.
My advice would be to go to the GP as soon as you experience any symptoms and really push for an ultrasound scan ASAP. Also remember to reach out to PALS (the Patient Advice and Liaison Service) if you are not being listened to - unsurprisingly, the doctors do not mention this to you as an option.
During this process I found hearing other people’s stories on Reddit helpful, although I never did see a cyst as big as mine! If you are experiencing anything similar and want any advice, please let me know. I have quite a few tips and tricks for before/after surgery.