In recent years, crippling conditions such as endometriosis and polycystic ovaries have become more widely discussed thanks to women such as Lena Dunham talking about their experiences. The increasing awareness of these conditions is fantastic and needs to continue, yet very often, little is spoken about their cousin – dermoid cysts.
Dermoid ovarian cysts are benign tumours made up of a collection of cells that are used to create eggs. As eggs have the ability to create any type of cells, dermoid cysts can consist of a wide range of different types of human tissue, including blood, fat, bone, hair and teeth all in one beautiful lump, and effect on average 1 in 5 women, with cysts that cause symptoms affecting 1 in 25. They can vary in size and symptoms, with some women never even knowing they have one if it remains small. They can range from being 1cm up to 75cms. My first cyst was 15cm, my new one is currently sitting pretty at 4cm.
Dermoid cysts are a recurring problem and must be surgically removed when they begin to cause problems, yet there is surprisingly little information available on them. A quick google search led me to a forum of women asking for information from each other on the issue. These were women who had had multiple cysts removed, who’d had ovaries removed and yet still had very little information on the condition. I myself had never been told that they reoccurred until another one decided to pay me a visit, but I was quickly informed when I questioned the doctors that this is incredibly common and should have been unsurprising to me.
So why am I so keen to tell you all this? Well for one, I think it’s important for all of us to know a bit more about what can go on down there, but also, I want to spread awareness of how much this can affect people’s lives when they do show symptoms.
My first cyst was diagnosed after over a year of constant pain and tests. I had to take a year off school, and during that time I frequently cried and vomited from pain, and on multiple occasions, I was unable to move from my bed for several days at a time because of it; it really was a literal pain in the backside. I had scans of my brain and my spine – at one point they thought I had MS because the cyst was pressing on my spinal nerves and causing neurological symptoms such as my hands being unable to hold pens and cutlery. Eventually, after eighteen months (and a very perceptive trainee nurse) they found it, and I had emergency surgery. I was lucky. My surgeon was amazing and saved my ovary, but this is not the case for so many women. Many women who have dermoid cysts have had to have their ovaries removed for the sake of their health, but in turn, give up their fertility. I myself now have a life plan in place to manage the condition.
I can only speak from personal experience, but being told that I had another one devastated me. I remember practically skipping to the hospital to rid myself of this thing back in 2013 and three years later I was being told that I had to go through all that again.
I’m nowhere near where I was last time with the pain and discomfort, in fact, I can forget about it a lot of the time but then it comes back to remind me that it’s still there. I have missed meeting up with friends and going to their parties because “I have a really bad headache”, or “I just have too much work to do” whilst in reality I’ve typed that whilst curled up in a ball crying in pain desperately waiting for the paracetamol to kick in so that I can have the smallest slice of relief.
I have come to terms now with what lies ahead, I have a life plan organised with my doctors and I’m working on techniques to manage the pain (FYI – if you’re ever really frustrated it helps to watch YouTube clips of Malcolm Tucker and just let him channel your anger). Some women, as I have mentioned before, aren’t as lucky as I have been; they’ve had hysterectomies and cysts which have been much larger and more aggressive than mine. This is why I want to raise more awareness of dermoid ovarian cysts. I described my experience of my first cyst – a year and a half of pain and frustration whilst being poked and prodded – but my second one has so far been much better because this time I knew what to look out for. I went to the doctor, I got a scan and it was diagnosed early and now they are able to monitor it and largely keep it in check. I cannot express enough how much better it is to go to your doctor if you suspect anything than sit around hoping it will go away – it could be nothing, but it could be something and that’s worth finding out.
If you want more information about the signs and symptoms of dermoid ovarian cysts along with general gynaecological information visit the ‘Royal College of Obstetricians and Gynaecologists’ website.
Words by Eleanor Manley
Artwork by Celia Mohedano