Update: I have adenomyosis too!

For those who have been following my situation...

I finally saw my consultant today and he was amazing. He said that it sounds like the endo is definitely back and that a further lap will need to be done to investigate where it is. He did an internal scan and says that it appears I have adenomyosis as well... He said that unfortunately the only treatment for this is a hysterectomy but that he would want to do the lap first as he will need to investigate if other surgeons will be needed for the big op... depending on where the endo is.

I'm relieved and scared at the same time as at least there is a light at the end of the tunnel and I have a treatment plan.

I also spoke to work yesterday and my ops manager has told me to take the time I need and to stop worrying about work. If the gp feels I'm ready to return next week she said she will look at a phased return if needed and put an action plan in place to help me move forward and develop. My Case manager has also said that we could look at lighter duties, which means simple treatments and less complicated patients which should help with the fatigue and stress, until the ops are done and I'm in less pain.

So overall... even though this week has to date been my worst week pain wise... I'm feeling a little more positive than hopeless!

Hope you are all coping with your day! Xxxx

2 Replies

  • I am sorry to hear about your additional diagnosis but that's great that you at least know what you are facing and you have a treatment plan.

    I had my excision surgery for endo a few weeks ago, and they found then that I also have adenomyosis. I was really upset to hear this as I know the only treatment for this is a hysterectomy and I would really like to start a family (we have been trying since last year). So my surgeon told me that the next few months are my best opportunity to try.

    I was so relieved to have the surgery over with and thought I might be rid of the endo, but then getting told that I have another disease to contend with, which they can't remove, was a complete blow. I am choosing to remain positive though, and will just have to see how the next few months go, pain wise etc.. I don't really know if it was the endo or the adeno that was causing the most pain, so the coming months will be very telling.

    Do you know when your lap is scheduled? It's great that your work is being really supportive about it too :)

    soub x

  • Soub... Thank you so much for the reply, was feeling a little disheartened that no one was talking to me... silly I know!

    I'm sorry to hear you have adenomyosis too. It's hard enough dealing with one disease not to mention two... It has not hit me yet I don't think. I have found myself wondering what pains are now endo and what's adenomyosis. I'm lucky as I have got my family now and won't be having anymore children. I hope the lap has helped and improved things for you to be able to conceive and that it happens quickly for you. I know they say that pregnancy also helps with it all as it becomes dormant while pregnant so will give you some extra relief. It will be interesting to see how your pain is once everything settles... A good tell of what the adenomyosis was actually causing. Hopefully nothing major... Some woman don't have any symptoms. Hope you are one of them...

    Keep in touch please and let me know how it all goes. It's nice to have someone to lean on who is going through something similar.

    I don't have a lap date yet. Waiting for the letter. Last year I had to wait 2 months which I thought was not bad. Although it's on the NHS it's at a private hospital so I seem to get things done quicker. I know when I needed my gall bladder out a few years back I had to wait 8 months for that... hoping it's sooner rather than later. How long did you have to wait?

    Hope you are having a good weekend xxx

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