In November 2022, I had a laparotomy, which is a major abdominal surgery, for the removal of a giant, non-cancerous, paraovarian cyst and fallopian tube reconstruction. Unlike an ovarian cyst, a paraovarian cyst grows in the space between the ovary and fallopian tube and depending on size can be symptomless. My cyst was 30x20cm in size and contained 4.5 litres of fluid. If the size isn’t shocking enough, my gynaecologist told me that he suspected that it may have been silently growing in me for over four years.
Throughout those four years, I repeatedly visited my GP over concerns of my bloating, which was extreme at times, particularly during my period. Unfortunately, each time I was told that it was irritable bowel syndrome (IBS) and sent home. I now know that this is a very common misdiagnosis.
Despite having a gut feeling that something wasn’t quite right, I trusted the GP. I listened to my family and friends who told me that it was probably nothing to worry about and that I shouldn’t be critical of how I looked. I also took comfort in fitness and wellness influencers on social media telling me that bloating is ‘normal’ and that women have a ‘pouch’ to protect our reproductive system. I now know that this is a potentially dangerous message that, in my opinion and experience, could continue to deter women, girls and those with gynae organs from seeking medical help for their symptoms. I wish that I trusted my gut and advocated earlier for further medical investigations. I truly believe that if I had known the dangers of bloating and not dismissed it as ‘normal’, I might not have needed such a major surgery.
After I completed my master’s degree, I booked a GP appointment. My mind was no longer focused on my dissertation and so I decided to turn my focus onto my health and get my bloating, which was now more prominent and causing me discomfort, checked properly once and for all. Fortunately, after a physical examination, the doctor agreed to refer me to the hospital for an ultrasound scan.
So, there I was, a week or so later, lying on a bed in the hospital, having an ultrasound. I knew what to expect because I had seen them performed on TV, but I wasn’t at all prepared for all the anxious thoughts going through my mind. Two lovely, chatty sonographers performed the scan, and
they tried their best to put me at ease, but I could tell by the look on their faces that all was not well as soon as the cold gel (which, I can confirm, is rather cold) was put on my stomach. They told me that I had a large cyst, which they noted was around 10×10 cm in size. I remember bombarding them with questions: ‘Will it go away on its own?’, ‘Will I need surgery?’, ‘I’ll be ok, won’t I?’ But of course, they were not gynaecologists; they were not able to give me the answers.
Soon after, I met my amazing gynaecologist. They say that not all heroes wear capes, and this is true, they wear latex gloves and carry a transducer. As soon as I met my gynaecologist, I knew that I was in safe hands. He performed an external and internal ultrasound and explained his plan of action. He then listened to my worries and concerns; making me feel heard, comfortable and respected. He told me that I would need an MRI scan and blood tests to ascertain the scale and character of the cyst. The results of which would determine what kind of surgery I would have; either a laparoscopy, which is several small incisions, or a laparotomy, which is one large incision in the abdomen. He told me that I would most probably need the latter, given the size of my cyst. At hearing this, I had the overwhelming urge to cry. I had never had surgery before, and in a few weeks’ time I was going to have a huge vertical scar down my stomach. I knew that I was being completely unreasonable, but I felt massively let down. Let down by myself for not pushing for a scan sooner, let down by the doctors for misdiagnosing me, and let down by society for telling me that my bloating was normal. I held back the tears until I got back to my car and called my mum, who was over three hours away from my university city, Newcastle upon Tyne. I think that this was the first moment we knew the severity of the situation and we both cried… a lot.
After my MRI scan, I went back to my gynaecologist for the follow-up appointment, with my mum for moral support. I went in alone at first. I was relieved to hear that my blood tests were all ok; the tumour markers had come back normal, and it was not cancer. Then he showed me the MRI scan. I was speechless. This massive, white shape, which was 30x20cm in length and width, and 12cm in depth at the base, took up almost my entire abdomen. It had damaged my fallopian tube, was pressing on my other organs and was pushing against my diaphragm. My mum came in and was aghast. She asked, ‘where are all of her organs?!’ Needless to say, my insides were certainly not where they should be. I was told that I would most likely have to have the affected ovary removed, but that it would not affect my hormones or fertility. Of course, this worried me, but I was just so relieved to hear that it appeared to be simple (fluid-filled, with no other matter) and non-cancerous. My gynaecologist also told me that he was going to attempt to remove the cyst through a slightly smaller, horizontal incision on the bikini line.
I went back to my flat, in a state of shock, feeling as though my body was no longer my own, but instead the home of a parasite-esque cyst. Under strict orders, I took it easy until my surgery a couple of weeks later.
On the morning of my surgery, I was equal parts nervous and excited. I was nervous about being under general anaesthetic, how I would feel when I wake up, the pain, the incision and the recovery, but I was looking forward to finally have my body back.
The wonderful nurses led me to the little room where I was to be put under anaesthetic. I was rather scared at this point as I didn’t know what to expect. I began to panic, when my gynaecologist came in to check on me. He was calm and collected, which reminded me that I was in the best hands.
When I woke up in the recovery room, I was greeted by three nurses and wrapped in a heated blanket. After a cup of water and a lengthy chat about dogs, my gynaecologist came to see me. He told me that the surgery went very well; amazingly, he managed to save my ovary, successfully reconstructed my fallopian tube and removed the cyst. This was amazing news. I was then wheeled up to my room and reunited with my parents.
The recovery was longer than I expected. I struggled to stand up straight for a couple of weeks due to the shift in weight distribution. I had lost a stone in weight due to the surgery and so every time that I stood up, I felt as though I was going to topple over. A couple of days post-surgery, I noticed that I was breathless when walking just a couple of metres. After speaking with my gynaecologist, it became clear that, for as long as the cyst was pressing against my diaphragm, my breathing had been restricted. Because of this, I underwent chest physiotherapy for around 8 months to learn how to breathe properly again, using my diaphragm. I also had physiotherapy sessions to slowly regain strength in my abdominal muscles. Now, I am fully recovered!
In hindsight, I wish I had known the dangers of bloating. I wish that I had trusted my initial gut feeling that something was not right and advocated for further medical investigations sooner. Whilst my paraovarian cyst was not cancerous, I hope that my story highlights the importance of getting your symptoms checked. No one knows your body as well as you do, so don’t listen others, particularly people on social media telling you that bloating is ‘normal’. It may be for them, but it may not be for you. Similarly, if someone you know is concerned about their bloating, I urge you to advise them to get it checked.
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.