My story starts in 2016 when I started to get really irregular periods. I was 22 and went back to my GP time and time again to ask for help. I was bleeding between periods, after sex and would bleed so heavily it was like a tap, and I ended up in A&E. I kept being told it was my pill (mini pill cerelle) and that it would settle down. I'd been on the pill since 2014 and I knew something wasn't right.
Eventually, after around a year I was referred to gynaecology through the quick 2 week route. I had an ultrasound which showed my womb lining was thick (18mm) and looked very cystic. The consultant tried to do a hysteroscopy but I had a polyp blocking my cervix so he brought me in a few weeks later to have it done under general anathetic. He removed the polyp, put in a camera and took some biopsies. The 3 week wait was horrible but the results showed Complex Hyperplasia without Atypia. My consultant said to have the Mirena coil and that should reverse the cells and thin down the lining. This was inserted (OUCH!!!) and she said she would do a repeat hysteroscopy and biopsy in 6 months time.
Everything went smoothly and 6 months later she repeated the procedure. 3 weeks later the biopsies showed no Hyperplasia, woohoo!
Again she said she would do another in 6 months and if that was also clear, the Mirena could be removed and my partner and I could start trying for a baby (Dream come true!). The final results after another 6 months were also clear and I had approval for the Mirena to be removed. It came out in October 2018 and I was told to give my body a few months to adjust, but I shouldnt expect any problems. My partner and I were really happy!
Roll round to January this year. Apart from a breakthrough bleed, I'd had no bleeding at all. I called my GP and asked for an ultrasound. I was told no and that I should wait a few more months (I couldnt believe this!). I said I was trying to concieve and he immediatly said, 'Oh ok we'll refer you for an ultrasound then'. Typical! I waited 6 weeks and heard nothing so called the hospital and they said they hadn't recieved any referral for me.
Called my GP again and they re-sent it. I finally had one in March and it showed my lining was back up to around 17mm, very cystic and generally didnt look great. Again I was referred back to gynaecology down the 2 week path and saw a consultant a week later. He said I needed another Hysteroscopy and Biopsy which was done at the end of April this year, and also put a Mirena coil in.
This is where things get tricky. I'm at work when the letter arrives so my mum sends me a photo of it. I ask her to open it and to send me a photo of the actual letter. Instead she phones me and says, 'Just to warn you, its not good news'.
I read it and it comfirms the Complex Hyperplasia is back but its now Atypical. I then spot the C word. A patch looks particularly bad and they cant rule out endometrial carcinoma.
I'm given an appointment to see my consultant a few days later and he says they dont know for sure, but I'm on the cusp of it being cancer. He arranges an MRI and also refers me to Oncology.
Two days later I'm at my Oncology appointment and I'm totally shell shocked, as is my partner. Thank god my mum was there and took in what she was saying (Mum also used to be a nurse). I'm basically told they would only know 100% if they did a Hysterectomy (big no from me!). I desperatly want children so this wasnt an option for me.
She is treating me as a grade 1 carcinoma and prescribes me Provera on top of the Mirena. She tells me she'll do a hysteroscopy and biopsy in 3 months time to see if its working.
In May I had my MRI which showed it hadnt spread (Yay!) and had blood tests which were also fine. My hysteroscopy and biopsy is booked on 5th August and Im seeing my Oncologst this Thursday.
This isn't my finished story, its just the beginning really! Didnt expect to experience this at my age (25 now) but thats life I suppose!