Adenomyosis as a result of Tamoxifen


I have been diagnosed with Adenomyosis as a result of Tamoxifen and I am wondering if anyone else is in a similar boat? I had oestrogen based cancer DCIS a couple of years ago. I am having a Hysteroscopy next week and having not taken Tamoxifen the swelling has gone down, but this of course is not a long term solution. My options given to me by my gynaecologist are: 

  • Continue with Tamoxifen & bear the Adenomyosis
  • Consider Zoladex as alternative treatment 
  • Consider hysterectomy + - bilateral salpingo oophorectomy

I am seeing my Oncologist this week to discuss the options, but to hear from someone who is or has been in a similar position would be great.

I would love to hear anyone’s experience and the choice they have made.

Sending you all love and light.

Fiona x

Hi @FionaC1975  Thank you for getting in touch. I’m sure someone will be along shortly to continue the conversation.

In the meantime you might be interested in our someone like me services - the Someone Like Me phone service can put you in touch with a volunteer who can support you by telephone. You’ll speak to someone who’s had a similar experience to you, who has finished their treatment and has been trained to help. We also have a Someone Like Me email service where a volunteer will support you by email correspondence.

You can also speak with one of our Breast Care Nurses, you can call them on 0808 800 6000. They are available during the week 9am-4pm and 9am-1pm on Saturdays.

Many thanks,
Forum Moderation Team

Hi @FionaC1975  

Sorry this is a late reply to you, I’m conscious you may have made a decision by now. I’m 45 and started on Tamoxifen with Zoladex injections a year ago. Many people including my female GP tried to put me off the Zoladex as the side effects can be bad. BUT a year in and I am fine, I do have hot flushes but I’m getting used to them now. I’ve been very fortunate that I’ve had no joint pain. As for the injection itself it is a sharp scratch but really nothing too bad at all, it is over in seconds. It goes into your belly and they switch sides every month. 

I too was originally debating whether to have my ovaries removed surgically, but delayed it due to covid. Now I’m tolerating the injections well, I think I am going to stay as I am. 

I’m surprised your team haven’t mentioned anastrozle to you or other inhibitor tablets, as once your ovaries are supressed (either via surgery or zoladex) you would be able to come off the tamoxifen and switch to AI’s. This might help with the Adenomyosis?

Good luck with whatever you decide, I found it incredibly difficult when the choice was given to me and would have preferred the specialists to decide for me! It is not easy!

I hope all goes well for you

Nameste x