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.

  • Im thinking of going for mirena. Since my case is quite unique, the consultant i met is soo not helpful since seem to be inexperienced and not knowledgeable in my case but now i have just changed to a new consultant, definitely have to pay more. Thank for your reply.Im glad this thread is active. Im seeing him tmr, so i hope it will enlighten me with why im still bleeding.

  • What you said is true, there is limited information esp among ppl of my age. I guess what is scary is the uncertainty, then there is the question about wanting to have children.

    Thank you for giving me questions to asked my doctor. I Hope he will enlighen me somehow. Im praying its nothing serious or bad. 

  • Hey, how did your appointment go ? Do you have a better answer now ? There really isn’t a lot of information out there for us and it’s such a shame as there isn’t anywhere else to turn :( x
  • Hi all,

     

    I am 18 years old and have been diagnosed with Complex Endometrial Hyperplasia with Atypia. I've read that some of you have the "coil" - what is that? 

     

    I have the mirena IUD in but have had abnormal (but rather light) bleeding every day for the past month. I had it put in on Oct 6 this year. Is this normal? I spoke to my GP about it and she said that she will try and rush my next appt with the Gynae doctors. Is the bleeding normal?

     

    Thanks

  • Hi Lea the coil is the same thing as the iud - I have had mine in since August and still spot every day. I’ve been told by my consultant to mark a chart everyday with how much I bleed to keep a record of it. I’m back in January but it can take 3 months to settle down so it sounds fairly normal. I would however make sure you get an appt ASAP if you are worried as it changed so quickly for me to cancer. It’s better to get checked than to leave it x
  • Hi. How is it going with the coil? I have been diagnosed with EH as well and am going to have one put in to thin the lining. I'm wondering how fast the IUD will resolve this for those of us with EH.
  • Hey Tracy, I’ve had my coil in now since August and still have daily bleeding. I’m due to have more biopsies and scans done in 4 months as they can’t do them again too soon. Apparently it works really well with hyperplasia prior to a-typia x
  • Hello Lovely Ladies, I am looking for your advice and would love to hear from anyone going through similar? I was diagnosed in 2014 with Cervical Cancer stage 1a1, had two lots of LLETZ and fingers crossed have had clear smear results since, next one due in March. Unfortunately I was left with scar tissue after the LLETZ which meant my cervix was closed so could not have proper periods. I have had surgery to reopen this twice since. In July 2017 I was diagnosed with Endometrial Hyperplasia with Atypia, I was undergoing fertility treatment as I had not been ovulating due to PCOS. I had an operation to drill my ovaries to try to encourage ovulation, when having this operation they noticed I had a polyp in my uterus and took a biopsy which came back as Endometrial Hyperplasia with Atypia. This news was obviously devastating, I had the Mirena coil fitted in the August and was told I will need to have this for a minimum of six months before they will take new biopsies? The six months will be up at the end of this month but have to not heard anything further from the hospital? I would love to hear from anyone that is going through similar. After trying to conceive for the past three years in fear my Cervical Cancer will come back and now this I am finding it hard to cope with. Many thanks I am 35, my history in brief: 2014 - Cervical Cancer 1a1, 2 x Leetz 2015,16,17 Smear Normal In July 2017 Endometrial Hyperplasia with Atypia 2017 August - Mirena Coil Fitted PCOS, BMI 28 and wanting children
  • Hey Yazmiine, 

           I just got diagnosed with Complex Hyperplasia Atypia yesterday and was wondering how Mirena has worked for you? I'm 32 and want kids more than anything! I hope you are well

    XO-Caitlin

  • Hey Sarah, I’ve had my Coil in now since August last year, I had an apt with my oncologist at the end of January and have had to keep a record of my bleeding ( that was the initial issue with me that showed something wasn’t right) he isn’t happy with the constant bleeding so I’m having to have more biopsies in may / June. I’m a lot heavier than you so they’re putting it down to my weight I’ve now lost 2 stone and still going which should take me out of the risk category. I’m not sure if you’re aware but they won’t harvest your eggs using the hormonal treatments as it can aggravate things so I was told by the fertility specialist. Also the cost is astronomical as it’s not covered by the nhs. I had a nightmare with the first hospital I was referred to and was then sent to ucwh (walsgrave) where I’ve been treated a lot better. Definitely phone them and get on the case because I got lost in the system twice ! As I said before if you do want to contact me for a rant or just to talk to someone who is going through the same thing. Sorry for the delayed response x