My name is Ailis. I am a 42 year old mum of 3. I have never been blessed with the best of health, having gotten sick with an undiagnosable autoimmune condition in 1999, 3 months after having my 1st daughter.
Having been “sick" for so long and from a young age, I have, luckily, been in tune with my body and I am usually very aware when something is just not quiet right. Being prone to vulval cysts, it’s something that has always been a literal pain and inconvenience something I’ve kept an eye on, but was never very concerned about.
In the summer of 2016 I noticed a “pimple" on my perineum. I thought as usual it was a cyst, but kept an eye on it. It changed slowly over the next few months into a wart like growth.
In September of that year I went to my GP who seemed pretty unconcerned, but she relented and referred me onto a gyne oncologist. I saw him late November privately, and again he seemed unconcerned, saying that at my age (39), I was not in the demographic for “ any thing sinister “. So he would see me in 6 months to continue monitoring the situation .
I went home that day feeling angry and upset at myself for not speaking up. I knew there was something not right, but what? Luckily I also was give a public appointment, which I decided to attend and push my concerns. In Ireland the system is split into public and private. Private consultation you most often see the head consultant, public, you see one of the registrars, who will then refer you on up if they deem necessary. I explained that I had already attended a private consultation and he was of the opinionthat we should wait, see and monitor. I further explained that I was unhappy with this and really felt further tests were needed. The registrar explained that biopsy would be the most likely way to test and because of the area and the fact that I “wasn’t in the demographic for any thing sinister" it would be a traumatic procedure to put myself through. I told her to go ahead, I wasn’t prepared to wait and see.
Early December I went for my biopsy, which was done by the man himself, who was surprised to see me there. My follow up appointment was to be Christmas week, but because of the week that was in it, and that fact that no one seemed concerned about my symptoms, I decided to postpone. My new appointment date was the 5th Jan. I waited and waited to be called for my appointment and as the room emptied out I started to get a sinking feeling. When I was finally called it was the main consultant that called me, and then my stomach fell into my shoes. In Ireland you only see the top guy if there is a problem.
He brought me in and explained that yes, the biopsy had come back cancerous and further treatment would be needed. My first question was “ is it cervical?”. Cause down there, what else would it be?? No, he said, it’s vulval. Queue confused face and blank stare, “what?”
I like many others had never heard of this cancer and never knew it existed or it was possible. Only 38 women in ireland a year are diagnosed with this cancer, 38!! We have more chance of winning the lotto then having vulval cancer, but here I was. Not in the demographic of over 60, with a rare form of taboo cancer, that not only makes everyone uncomfortable to talk about, but it kills. I was scheduled for a partial radical vulvectomy for the following Monday, the 9th and would go on to spend a week in hospital.
I have been so much luckier than most women with this horrible disease. I caught it early, and despite doctors being slow to be proactive, they did act on my concerns. Surgery, all be it life changing was the only treatment I required. I am always on high alert when I discover a new bump or a cyst. I may be cancer free, but I am still living with the after effects of the surgery and the feeling of although it’s not there, is it ever truly gone? I believe knowing, monitoring and checking my body saved my life. Know your body, check your self, knowledge is power.
Write something about yourself. No need to be fancy, just an overview.