Been diagnosed with Endometrial hyperplasia without Atypia. Is hysterectomy the right choice for me?

Hi Lynzhom

Am sorry to hear that you are dealing with hyperplasia after going through treatment for breast cancer. 

Tamoxifen can be involved with hyperplasia. Hyperplasia put simply means that the endometrium is thicker than it should be. The type that is without atypia is the better one to have but in your circumstances it would likely need continued monitoring. Surgery is often suggested as an option for dealing with it and making sure that it does not become a pre cancer or cancer in the future.

Sometimes ladies are offered the mirena coil for hyperplasia but I can understand why hormone treatment would not be recommended in your circumstances- being treated with tamoxifen and having had treatment for a hormone positive breast cancer. 

My hysterectomy was for cancer and was done in 2022. It was pretty straightforward and I had little pain. I was in hospital for 1 night and recovered quickly. There have been ladies on here who have had the surgery for hyperplasia. 

Deciding whether or not to have surgery can be difficult so do give the Support Line a call if it would help to talk things through. They are there from 8am-8pm everyday. 

Jane

Hi, I was diagnosed with atypical EH in January, which is where the cells progressed to abnormal pre- malignant, a full hysterectomy was the gold standard treatment, I was petrified as at 55 ive  never had surgery before, from surgery point of view I had a robotic hysterectomy on 17th march with just an overnight hospital stay, home within 22 hours, its now a week on and I have had minimal.pain and discomfort, just using paracetamol when I go to bed at night, if I had refused surgery it would have meant regular biopsies and the waiting and worrying every time I wouldn't cope with and in my case risk letting things progress further, although I need to wait for histology report and may need further treatment, I feel some  peace of mind knowing that the womb along with ovaries, tubes and cervix has been taken away. the wonderful helpline gives great support, and I hope you get the help to make the decision best for you, take care x

Thank you so much for your reply. I'm just finding it really difficult to make peace with it - with the breast cancer it's an obvious choice, with this it feels a bit drastic. It doesn't help that it's come round really quickly - I got my results on the 4th March and surgery is booked for 11th April. What you are saying makes sense though - I don't want to have to go for regular biopsies and I don't want to take the risk of it becoming worse.

Thank you so much for your reply - I'm finding it really difficult to come to terms with. I think I'd really like to never have to see the inside of a hospital or doctors surgery again!

Clearly your team is being cautious about hormone treatment given your history.

However, as yet you have EH without atypia. Below is an extract taken from an NHS Hospital Trust guidance, which you can read on their website:

Taken from:

Chelsea and Westminster NHS Foundation Trust:

'If left untreated, endometrial hyperplasia can develop into endometrial hyperplasia with atypia and endometrial cancer. The exact risk depends on the individual patient’s circumstances/risk factors.'

EH progressing to endometrial cancer is less than 5% over 20 years. The majority of cases of endometrial hyperplasia without atypia will regress spontaneously.

You may be asked to stop your HRT and to reduce your weight/body mass index.

Watch and wait/conservative approach has about 75% chance of natural regression. You will still be recommended to complete surveillance and 6 monthly endometrial biopsies. This may be appropriate for women who can alter their risk factors (for example, by loosing weight or stopping HRT).

Hope this helps. Good luck!

Just wanted to add that I've had early grade EC and am now cancer-free due to hormone treatment, which I understand is not recommended for you. However, as things with me have now resolved I will be on annual biopsies very soon and always have pain relief by way of local anaesthetic and gas & air. It does help!

Thank you it does help! 

Good. I hope you make peace with whatever decision you make. All the best!

Hi there, I've had a similar diagnosis. Have they recommended removing your ovaries too? 

Hope the surgery went well? Did they take your ovaries as well? Xxx