Complex atypical endometrial hyperplasia

Feeling a little lost in terms of where to look for help/guidelines and hoping that someone here might be able to help.

I'm 36 years old and was diagnosed with complex atypical endometrial hyperplasia following a hysteroscopy and biopsy last March. Due to my age and desire to retain the possibility of future pregnancies, my gynaecologist suggested we try hormone therapy before committing to a hysterectomy. In June this year I received an appointment with a gynaecological oncologist who stressed that hormone therapy could be a risk considering the extent of my symptoms and doubled my dosage of progestogen with strict instruction that I undergo a repeat biopsy/hysteroscopy in September.

Second biopsy/hysteroscopy happened this week and whilst I don't have results yet, I was advised post-procedure by one of the doctors present in theatre that I should prepare for the worst as things looked highly suspicious. I was also told that I was now officially an oncology patient and no longer to be treated via gynae, and that follow-up/results would happen within 6 weeks but most probably within two due to fact that I've already been diagnosed as pre-cancerous. Today I find out that I've been given a general gynae clinic appointment for nearly 8 weeks time and am now torn between preparing for a cancer diagnosis and hysterectomy or reassuring myself that perhaps the hormone therapy is having an effect.

It's been a year since I began attending appointments and tests for abnormal bleeding and I've been in increasing pain since December last year to the extent that eating and sleeping are now affected on a daily basis. Is it usual that I have another 8 weeks of waiting to find out whether it's cancer? Would really appreciate hearing from anyone that's gone through this process and can give me an idea of what's normal in terms of results and progression. Thanks in advance.

  • Hi ive just come across this site I have complex atypical hyperplasia at the moment have it for the last 20months have been on hormone pill for 6 months now have mirina. Im 34 no kids if mrina doest work my doctor told me hysterectomy is the only way .im heartbroken its the waiting around is agony.hope you all feel better thanks for listening.
  • Oh Megan ! I am sorry.. it's rubbish isn't it ? Not many people have been through the same experience so young. I haven't had my hysterectomy yet - I had the coil fitted back in may but already had a typical hyperplasia at that point. I've been back in to hospital last Tuesday for more biopsies to figure out what abnormalities are there. Feel free to message me and we can talk some more ️ :) xx

  • Hi Yasmine & other ladies on here. Isn't this just an awful, scary position to be in. After being seen by Dr, Mirena coil fitted & him saying I wouldn't need to see him again, my world was turned upside down on Monday when he rang & said I had atypical endometrial hyperplasia, needed chest x ray & mri, which I have now had & would need a hysterectomy in 4 weeks, I was numb! I am 52 & had my family, but I feel devestated for you younger ladies & wish you all well. This is such an awful condition with hardly any public awareness, I wasn't aware of the symptoms of it & put mine down to the menopause.

    I wish you all well, stay as strong as possible Xxx

  • Hey, that's pretty *** ! I haven't had to have an MRI as yet but I go next Wednesday for the results of my last lot of biopsies and d&c. I find myself getting impatient as I just want it to be over now ! Have they booked your hysterectomy in yet ? I'm guessing depending on the news I get next week I should find out about mine too. Good luck xx
  • Hi Yasmine

    First time back on here as things have been manic for the last couple of weeks. Can hardly believe it myself but i had a hysterectomy 2 days ago & am now back at home resting, am hoping when my results come from my womb that they were still just pre cancer cells, fingers crossed.

    How are things with you now, any date yet?

    Good luck & stay positive

    Donna x

     

  • Hi Donna, I finally had my results on 20th September following my biopsies. They found a tumour that was cancerous and have removed it put a new coil back in and now I’m being left until January to see if they have grown again. Seems like it’s a long road ahead still. I hope you’re feeling okay, how are you managing pain wise ? Yasmine xx
  • Hi Yasmine

    Sorry to hear what you've been through recently, it does seem like a long road ahead, have my fingers crossed for you.

    I seem to be recovering well, had hardly any pain after op, just sore really where they put the ports in to do op laproscopically. Still waiting for my results & desperate to be able to drive again lol.

    Take care 

    Donna x

  • Hello im 24 and was just dianosed with complex atypical endometrium hyperplasia..im at lost now..im taking 20 mg of provera (progesrrone) for about 20 days now and i was shocked that i am still getting my period now..im having cramps now and im thinking of the worse...

    Doctor said im a unique case because i dont fit the profile, that is not obese, no pcos...i just want to know whats the process like and do i have to remove my uterus or will it become cancer soon..im thinking negative now..

  • Hey there, it’s a worrying time as it can change so quickly. They say it’s rare for us (I’m 26) to get this so early on. I had the mirena coil fitted and have to go back in January for further tests but I am still bleeding & cramping too. I now have had cancer removed too. I think if you have a good consultant that you trust you’ll be fine. My first one was a complete ***. But my new one is great. Call them back if things still aren’t settling x
  • Hi Roselight, 

    So sorry to hear of your situation and others that have shared their stories. There's still limited information out there since I started this thread and I understand how lost you can feel when first diagnosed. 

    What I wanted to say is try to focus on the positive aspect of having a diagnosis. Whilst the future is scary right now, you have more options open when you know than when you don't. 

    Go back to your GP re. continued bleeding; this should be lessening over time. Speak to him/her about a hysteroscopy (pre & post progesterone) to establish how quickly abnormal cells are growing. Ask about options for freezing eggs if you're hoping to have children. 

    Take action where you can and don't give up hope. You have a diagnosis - that means you can be part of the fight rather than a victim. 

    Love and strength x