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 CaitBax. I scribed the original post in this thread & wanted to reach out as can empathise. For me, my diagnosis & hysterectomy forced me into grieving for things I hadn't yet had. Like you, I was scared about early menopause too. My advice? Ask questions. Express your concerns. I kept my ovaries and 11 years on, I'm yet to go through menopause. I wish you peace and strength. You will get through this x

  • Hi Cait - I'm about to be 30 ( 20th March) and have my consultation with the oncologist on 9th March to make my mind up what way I want to go. 
    feel free to message me - I understand it's hard especially if none of your friends have gone through the same thing ! We're a "rare bunch" apparently - who knew !!

  • Hi Yazmiine can I just ask how you are getting on? What treatment are u on and was it successful? 

    I was also diagnosed with atypical hyperplasia in 2017. Initially I was advised hysterectomy but wanted to preserve my fertility due to not having any children yet. I had negative biopsies for 3 years, but last months in FEB 21 I had a positive biopsy again, the atypical cells have returned. I was hoping to go for IVF once lockdown eased.

    Has anyone on here gone on to having children after atypical hyperplasia diagnosis?? I am forever looking for positive stories. 

  • Hey Hope, I decided that enough was enough and have opted to go for the hysterectomy. Simply enough I am done being controlled by the fear of what if.. I have not got any children nor can I have fertility treatment so for me this was a hard decision.

    I don't know anyone else in real life that's been diagnosed and gone on to have children so I'd be useless at that part.

    I just know for me I'm looking forward to not having three monthly biopsies with the anxiety hanging over me all the time. They're taking everything apart from my ovaries to prevent me from going into menopause at 30. I should have the op in the next 3-4 months. Sending you lots of love and positivity. Ultimately it is your choice and the drs will work with you ! Xx

  • Hello Ladies!

    Found this thread through google! I have been diagnosed with atypical endometrial hyperplasia, originally the results came back with endometrial carcinoma, so had to do the retest. First had a biopsy due to abnormal smear test results and went back for curettage to get samples from my womb. I am only 35 and my husband and i just started trying for kids, so hearing the results wasnt easy. My doctor suggested to try prover for 3 or 6 months and then if it works try for a baby. But i am not sure if we'll get that far, one step at a time! What is everyones experience with prover? I am still in a bit of a shock and trying to get my head around this and finding this thread was a bit of relieve that i can talk to someone about it! Hope everyone is doing well xxx

  • Hello!

    I'm 29 years old, have no children..

    After having removed a small polyp during hysteroscopy, I had been diagnosed with complex atypical hyperplasia (there was a consilium of doctors to decide if it is atypical hyperplasia or a carcinoma). It was a real shock for me, since noone from doctors who consulted me before the hysteroscopy expected this kind of a thing. All previous examinations, including hormones and ultrasound, were alright (but for the polyp). Even the surgeon told me that everything seems to be ok after hysteroscopy.. "Just a small polyp, don't worry" he told me..But he was wrong. My life turned upside down. I planned to have a child soon and all my future plans were ruined into pieces..I cried so hard..

    Originally I was supposed to have a treatment with Mirena, but my oncologist told me that the cases appeared in her practice, when the desease returned in some cases after the treatment with the coil (even a case of cancer appeared after 18 month, when it seemed that the desease had gone away). So she suggested me to try Provera for 6 months. I'm going to start treatment in a week. Noone can tell what could cause the desease in my case..I'm so afraid that I'll never have a child. There are not so much information regarding the cases of successful treatment. But I still hope for the best outcome.

     

     

  • I was recently diagnosed with atypical EH, just had the results in of my 2nd biopsy which shows persistent atypia. It's devastated me, the lack of information online is also frustrating. I'm being treated with Provera to preserve my fertility as I am in my 30's with no children. Desparately hoping to find positive stories right now. 

  • Hi, sorry for the reply 4 years after your post. 
    I'd like to know how you are 4 years on? I am also 26 and have recently been diagnosed with the same. I am waiting for gynaecology & oncology to have a meeting to discuss what's next. 
     

    Take care 

    Poppy

  • Hi Poppy, the atypical cells didn't recur however I am booked in tomorrow (12th may) for a hysterectomy.

    the bleeding and pains never really stopped and my reasoning behind my decision is mainly my quality of life. I live on painkillers and suffer awfully with cramps. 
    I am keeping my ovaries but everything else is going. I wasn't willing to keep on subjecting myself to 3 monthly biopsies / scans and found this whole thing very invasive. 
    It is desexualising to keep being exposed to multiple drs I get told "you're so young to have been diagnosed with this, it's a rare case". It's something that doesn't get spoken about enough.

    I do apologise if I seem negative but I am so over this - I don't need a child to feel like a woman and lead a fulfilled life. 
    I more than support all of you who wish to preserve your fertility ( I tried for nearly 4 years) but it all just become too much for me to handle x

  • Hello  

    I wish you all the best for today and hope you have a speedy recovery!

    I can relate to a lot of those feelings, especially the regular invasive tests  & you're so right. 
    I am at my 4 year stage now of 'trying' and it is so mentally exhausting. 
     

    You've made me realise a little more that - it's ok, I'm still me with or without my womb.

    Thank you for replying and again, I wish you well! X