I was 16 when I was diagnosed with polycystic ovary syndrome (PCOS), I hadn’t had a period since I was 13 and I had facial hair that most boys my age would have been jealous of.
I was given birth control and sent on my merry way. A few years after this diagnosis I came out as a lesbian, moved out of home and stopped taking the pill. I didn’t need them, I had no intention of becoming pregnant.
I had the odd few appointments, given metformin to help insulin resistance, hormone cream to see if it could cure hirsutism but no real support. It seems like things were very different twenty years ago.
Fast forward 15 years. I move in with my now wife and out of the blue I start spotting, spotting that turned into a period, a period that turned into daily haemorrhaging, daily haemorrhaging that lasted for over two years.
I went to the GP and had a cervical screening test that I found excruciating, and was just given medication to stop the bleeding. Treatment for the symptom and not the cause.
I doubled my night time sanitary towels to create a makeshift nappy and would get through a pack a day. I spent two years wearing long black jumpers and being too afraid to sit down. I went on two more trips to the GP and was again dismissed: it was my weight, my PCOS, possible early menopause in my mid-30s. I just accepted that this is my life now.
I went to New York and had most of the holiday ruined by heavy bleeding, having to run to the bathroom in Macy’s with people jeering at me for my urgency and in disgust as clots fell to the floor. With American toilet doors being higher, I felt like my dirty secret was being exposed (thank goodness for being prepared with spare underwear and cleaning supplies wherever we went).
Although the bleeding was daily without any respite, it seemed to get worse every month and peaked last year. I bled through a sanitary towel every ten minutes, I had time off work, I even became delirious at one point. I was again prescribed tranexamic acid and progesterone to stop the bleeding while another cervical screening test was arranged (by this time I was overdue but had put it off due to the bleeding). I couldn’t do it, it was too painful and I was bleeding too heavily. The nurse I saw seemed to listen, she put her hand on my shoulder and said “Stacey, enough is enough – Women become so resilient and get on with things when they are told it’s normal, it’s not normal”-that sentence changed my life. From then on, she lobbied for my referral and I was put on a waiting list. Luckily, it was brought forward to an eight week wait as I became anaemic and got rushed to urgent care when the cramps and muscle spasms became too much to bare. My wife was so understanding, rushing around to appointments and to pick up another stash of sanitary towels.
I saw a gynaecologist in a small community hospital, straight away she mentioned hyperplasia that can be treated with the IUD Coil, and occasionally hyperplasia turns cancerous. She called it straight away, but more under her breath rather than a direct diagnosis.
I had a hysteroscopy, womb biopsy, cervical screening test and some spots on my vulva biopsied under general anaesthetic. I had my letter to return to the hospital two weeks later, this time to see a new consultant. I googled his name… a gynaecological oncologist. I was stunned and spent the week crying. I sent a photo of my letter to my mum, and turns out googling runs in the family as she knew my consultants speciality already. My parents came with me to the appointment. Grade 1 endometrial adenocarcinoma.
An MRI was scheduled and I was allocated a new surgeon. She was great from the beginning, an expert in the field and a self-confessed womb cancer geek. This was extremely comforting. She was blunt, and said “your PCOS and being no size 8 is probably why you have this, it is unusual for somebody so young but not unheard of”. She warned that the surgical menopause would “hit me like a bus”, again her bluntness made me chuckle in a time of stress. I just wanted everything out.
I had a total abdominal hysterectomy with my ovaries, cervix and lymph nodes removed. It was slightly complicated surgery but I was home after five nights. I was staged as 1b as it had gone into the muscle wall, so I was offered 3 sessions of brachytherapy.
Surgical menopause has been manageable, not pleasant, but manageable. The mental repercussions of cancer is something I deal with daily. Everything happened so quickly that I don’t feel like I processed it at the time. The fear of recurrence is always in the back of my mind.
I do feel like my GP didn’t consider womb cancer especially as I’m on the younger side, and in hindsight, I didn’t push as hard as I should have. I learned to live with bleeding and I should have questioned it more. The nurse’s words saved my life. I have no idea how long I would have let it carry on for if I kept being told it was nothing to worry about.
Strangely my wife had to have a preventative salpingo-oophorectomy only three months after my surgery. The same surgeon, the same ward, the same hospital coffee, just with the roles reversed. 2019 was a gynaecological nightmare for our household but onwards and upwards.
If you are worried about any abnormal bleeding you are having, go and see your GP, or you can call our Gynae Specialist Nurse information line, Ask Eve, for some advice, email Ask Eve on nurse@eveappeal.org.uk or call 0808 802 0019.