Mel - complex atypical hyperplasia

Hi everyone just a little about me I have complex atypical hyperplasia for 20months im on my 6th biopsy and d and c and hysterospy im 34 no kids it started with a smear they found polyps 3outside the womb 3 inside the ones inside came bk abnormal then  d and c on sample of womb thats where hyperplasia....had 6months on progesterone pill .I have the mirina in for 4 and a half months now (hate every minute of it)had ct scan have a group of cysts on my right ovary had an mri a few weeks ago I have a lump in the right cornu of the womb ans they don't no what it is have another d and c on oct 1st ..my gyne said if this doesn't work have to have hysterectomy because its there to long and not getting better im heartbroken was trying to get pregnant for 3yrs ..Any one with similar situation would love some advice thanks for reading x

  • Welcome to the forum Mel although I'm sorry to read about your situation and the reason you find yourself here.

    Hopefully others who have been in a similar predicament will be along soon to offer their support and advice but in the meantime I just wanted to stop by and give you our cancer nurses telephone number in case you would like to chat to them about this. You can contact them on 0808 800 4040 (freephone), Monday - Friday between 9a.m - 5p.m.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Hello Mel, I have just been reading your post, so sorry to hear this news. I myself am in a similar situation, I have been trying for a baby since 2014 (I posted a post which I will copy and paste below which details my story) I think we are also the same age as I was born in 1983. I was wondering how you are getting on and I wanted to say I know how you are feeling and please do get in contact if you want to chat. Best Wishes Sarah 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 Sarah!

          I just got the result of my biopsy yesterday and it came back saying that I had Complex Hyperplasia Atypia also. I haven't had Mirena or anything like that. The only reason I found this out is because I've been trying to conceive without success and my gynie wanted to see why, so we did a biopsy. I'm sorry to hear about your issues and I will keep you in my thoughts that it isn't Cervical Cancer. What is the next step for you? I am meeting with an oncologist on Wednesday to have a consultation and then a D&C so they can really see what is going on. I am trying to stay positive and hope that I don't have to get a hysterectomy! I need to stop reading the worse case scenarios online. 

    I hope it works out, we can chat if you need an ear!

    XO- Caitlin

  • Hello Caitlin, Lovely to hear from you. When they found my Complex Hyperplasia Atypia the consultant put me straight on Progesterone tablets until I had the Mirena coil put in place. As I understand it the Mirena coil releases the progesterone straight in to the uterus which much more effective then the tablets, where the progesterone goes round your whole body. I also had a MRI scan which came back fine. I was told that I needed to have the coil fitted for 6 months before they would take another biopsy to see if the cells were still a problem. I am due to have these in March, I need to discuss with them whats next if the cells have improved. Have they given you a plan yet? xx
  • [@SarahBuggies]‍ 

    Hey Sarah, 

         It sounds like we are at a similar points. I am currently on Progesterone tablets, I meet with an oncologist tomorrow morning and I will know more after that! Have you had any issues with Mirena? Can you feel it at all? Was it painful when it was put in? The idea of Mirena freaks me out honestly, haha! I don't like the idea of having a foreign object in my hoo-hah! 

    Sending you all the best! I hope that the biopsy comes back with cell improvement.

    XO-Caitlin 

  • Hello Caitlin, 

    I have got on well with the Mirena, nothing to worry about!!! It is a little unpleasant when they put it in, but is very fast.

    I do sometimes get what I would call period pains but nothing worse, a little spotting every now and again but I have been told this normal. No period for the past six months and I am blissfully unaware of it being inside me, so do not worry!

    You hear stories of women feeling very down as a result of the hormones but I would not say mine have been any different to normal. With our situation you are going to feel highteed emotions anyway.

    How did you get on with your new oncoloigist? Have they given you a plan?

    I have sent you a friend request so we can direct message each other, it is so nice to talk to someone who knows what your really going through.

    Sending you nothing but positive thoughts! Sarah xx

  • Thank you Sarah for you're reply I had my hysterectomy on the 30th of jan this year.My body could not take any more medication the mirina coil didn't work for me but after that I was put on a high dose of megace which made me really sick and very low moods.so my doctor said hysterectomy would be the safest option because it was not going away .I still have my ovaries but I must get a scan once a year and a blood test incase my ovaries change.if you need any advice please contact me.im just taking one day at a time...

  • Hi everyone 

    would love an update on how your all doing. I am due a scan and a hystroscopy (think that's what it's called) as I had a polyp removed and a blind womb biopsy that showed thick lining. Consultant said no abnormal cells were present but wants to have a full look at my womb. I don't have regular periods due to pcos and I don't think I ovulate (been trying to get pregnant) he mentioned the mirena coil to help shed the lining regular. I'm terrified as I have been googling (I know I shouldn't) and I have seen lots of horror stories. I feel totally lost and alone as nobody I know has been through anything like this. I'm just praying it is all normal and just a thick lining. 

  • Hi, just found out that I have complex atypical hyperplasia. Had 3 polyps removed and was found in them. Was sent for an mri today and now waiting for results and freaking out. Would be great to hear from others who have been through the same