Atypical Endometrial Hyperplasia

I was diagnosed with AEH in 2016 and they wanted to do a hysterectomy. I had just had knee replacement surgery and was reluctant to have another major operation so soon (I was 67) so I was treated for 2 years with Provera. The AEH disappeared after the first 6 months and I had 6 monthly biopsies. Everything OK until last summer when I did develop endometrial cancer Grade 1 stage 1A. Now being treated with Provera again as the hysterectomy would be risky for me and once again the cancer is in remission after 6 months. The lesson that I learned from this is that I shouldn’t have stopped taking the Provera after the AEH was cleared. I did have a discussion with my GP at the time but he had no experience of anyone in my position.

This is a bit of a ramble but yes hormones can work. However I would think carefully about having the hysterectomy. I know how it feels to be really scared of a major operation but you are still young and once it is over (often on a day case basis) that’s it whereas with the hormones you would probably need to take them for the rest of your life and have 6 monthly biopsies.

Hope this helps your thinking rather than confusing you!

Thank you for replying Holly. It sounds like if I don't have the hysterectomy I'll never be free of this. I have been told if I go down the Provera route I will have to take 400mg per day which is also such a big dose there could be side effects. 

Hi Elsie1234,

although my situation is slightly different as was found to have endometrial cancer on my hystoscopy I am a similar age 54 and very fit and healthy. 

I think if my original test had shown hyperplasia I would have had the hysterectomy after all the worry etc I have been through in the last few months. 

At your age and fitness I imagine you would recover hopefully very quickly and they may do it robotically or laparoscopic. 

we are all different I agree 

you have to do what’s right for you 

Thanks for your reply. Sorry to hear you've been through a lot of worry. If you don't mind telling me, did you have the hysterectomy? Yes they are doing laparoscopic. 

Yes I had a hysterectomy 5 weeks ago. I am lucky it was caught early and I don’t need any further treatment.

Mine was done robotically, I was in for 1 night and home, I have 5 small wounds which appear to have healed well. Minimal pain and discomfort. 

I can’t explain the worry and the knowing you have had or have cancer it’s something I hope you never have to experience.

please don’t think I’m trying to influence you as I said we are all different with different lives etc. 

Thank you, it's really helpful hearing other's experiences. I'm glad you don't need further treatment and you're recovering well from the hysterectomy. That's good to hear. I can well imagine the worry, it's been bad enough being told I have AEH. All the thoughts of how could this have happened to me, fit and healthy etc etc. Makes you realise that cancer can affect anyone. 

It’s a journey I tell you that. I was fit and healthy. Ran and walked regularly etc 

mine may be genetic as I don’t fit any other criteria. 

Good luck with your journey and do what’s right for you xxx

Thank you, you too. We'll both be fit and healthy again. xx

Hello Elsie1234

Welcome to the Womb group.

I am sorry to hear of your diagnosis of atypical endometrial hyperplasia. 

I can understand that it is scary to be told that a hysterectomy is needed.

I had mine in 2022 and it was done via keyhole. I stayed in hospital one night and went home the next day. Within a couple of hours I was walking around my bed. In the early morning I was walking around the hospital. I had little pain. Once home I recovered quickly. It was a case of taking things easy and no heavy lifting. I was able to go for short walks each day and was able to walk to the local shops (as long as someone carried the shopping) I have no lasting effects from the surgery and would have been ok to return to work 6 weeks had it not been for needing chemo and radiotherapy. 

The hormone treatment can be offered to some ladies but personally I would be thinking of the possible side effects- particularly if taken orally. I would also imagine that there would then need to be repeat hysteroscopies. 

Only you can make the decision that is right for you, but having had endometrial cancer and the surgery/chemo/radiotherapy, I would say don't let the thought of the hysterectomy scare you. Although it is a big thing for us, they are doing them daily and routinely. And anything that completely takes away the chance of developing endometrial, uterine, ovarian, cervical and fallopian tube cancer is something to give consideration to.  

Do give the Support Line a call if you want to talk this through with someone.

I wish you well whatever you decide.

Jane

Thank you Jane, this is reassuring.