Hello,

My name is Nicole. I'm 27 years old and have had a diagnosis of complex endometrial hyperplasia for three years.

Initially, I had the mirena coil inserted as treatment - I had this for roughly a year. Whilst it did slow down progression, it significantly impacted my life so I had to have it removed. Non-stop, I had excruciating pain in my abdomen, non-stop bleeding, heavy clots and sickness. I am no stranger to pain (already being chronically ill, with fibromyalgia and Ulcerative Colitis), but this was truly unbearable. I was essentially bed bound. 

A month after having the coil removed, I felt better. At my next appointment, Provera was suggested as an alternative. Again, I tried this for a long time and it produced the exact same symptoms. And, again, when I stopped taking this medication, I felt better.

I should note that my endometrial hyperplasia diagnosis does not present me with any of the key symptoms. My hormone levels appear normal on blood tests. My only symptoms is a lack of periods (I haven't had one in well over a year now). No pain or any other symptoms. 

Despite being required to have a hysteroscopy and biopsy every six months, I did not receive one for over a year until this year in September. At my appointment my doctor noted there was a lot of fluffy material blocking my fallopian tubes, which she thinks is scar tissue from a previous procedure. 

My biopsy results just came back. She noted that the findings showed severe hyperplasia, to the point the lab could NOT rule out cancer. So I have a scheduled MRI on Monday, which is to see the extent of the hyperplasia and if it is deeper/in my muscles. My doctor also mentioned a possible referral to a cancer team. But I'm not entirely clear and was too stunned to ask questions at the time.

I plan on following up today's conversation, but I was wondering if anyone here had answers or even just similar experiences. Is provera really my only option, and not a hysterectomy? I'm only 27, but I'd much prefer to have my womb removed than go through the pain of that medication again. 

I am just so worried and tired, more about the medication than the potential diagnosis, which I know seems strange but every type of hormonal pill I've tried has resulted in absolute hell for my body. I don't know what to do or what questions to even begin asking my doctor.

Thanks for any help