Adenomyosis possible diagnosis and want to conceive. What are my chances?

Had mri and now been diagnosed with possible adenomyosis. Gynae not sure but thinks I probably have it. Can you get pregnant with it? I am desperate to try and get pregnant.

Had excision endo surgery 6 months ago now and no luck. Booked in for lap 3 in May and he wanted to take (also got fibroids) fibroids out and I said I wanted the rest of my endo out which is (3mm) on rectum and two small spots and right ovary. With a risk of colostomy and losing my ovary because it is on the blood supply althoug he said he can usually move the blood supply out of the way. I couldn't handle losing an ovary!

I don't know if I hae made the right decision in wanting rest of endo out first as gynae said he couldn't do both endo and fibroids at the same time. And now adenomyosis to add to the list of s--- I have inside me.

My theory is if he took the fibroids out he would also be taking the adenomyosis out too as he told me recently it was on another womans fibroids under examination. His secretary told me that because I wanted to ask a question (as I have been doing research on aden since Monday when I went to see him) I have to cancel my op date and wait for an appointment to talk to him for 10mins. This is so out of order as I have waited more than my fair share of time just like every other woman to be seen. I don't need all this extra hassle and am on ede and scared incase they cancel on me. This is the behaviour of the 'top' guy at the hospital. What does anyone else think? x

2 Replies

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  • Hi

    There are a lot of questions there so I'll do them bit by bit!

    Firstly the adeno/pregnancy - have a look at this link - lmgtfy.com/?q=can+i+get+pre... - it seems it can make things difficult but it's not impossible.

    With regard to losing an ovary - I had my left ovary removed years ago because it had been so ravaged by cysts that it couldn't do its job properly anymore. My right ovary promptly took over, and I ovulated normally every month. Also, I went ten years without an ovarian cyst developing on my remaning ovary, whereas previously it was practically every six months on the 'rotten' ovary, so although it sounded really negative, having that ovary out was the best thing I could have done.

    With regard to the appointment being moved - I understand that this is really frustrating when you have been waiting so long, but you said something very telling in your post - "I don't know if I have made the right decision" - you made that decision based on the information you had at the time. Now you have new information, the situation has changed from what was discussed at your appointment and you are having doubts, which is entirely natural. Again, I know it's a pain in the backside having to wait, but I actually think that the consultant is being very responsible in making sure that you completely understand the ramifications of what you're about to do, or what he's going to do to you. This decision could potentially affect the rest of your life; is a couple of months of extra delay going to make that much difference in the scheme of things for the peace of mind of knowing you're doing the right thing for you?

    Although obviously it's up to you and if you still think it's out of order you can contact the

    Patient Advice and Liaison Service at the hospital and complain.

    Good luck :)

    C xxx

  • Hi, it is possible to become pregnant but it is not easy and very much depends upon how far your condition has progressed. To get a definite adenomyosis diagnosis you will need to have an MRI scan whereby they will identify the adenomyosis areas with a colour doppler tool (which is like a filter that shows the bright red/white 'tumour' areas in action - bleeding into the wall of the uterus in time with your pulse. I have attached a link for you to see this in action to enable you to ask for them to show you how severe your adenomyosis

    PALS is an excellent service and will be able to support you, and remember you can always go back to your GP for another referral if necessary. I had to more than three times and finally had to go privately and even then that was only half way through my symptoms way before I was lucky enough to get a nurse from another country working for the NHS who spotted it by the above scan.

    For more information and support, (you are more than welcome if you have not already) to join the Adenomyosis Advice Association by 'Like'ing the facebook page or by simply going to the main website adenomyosisadviceassociatio... - I am based in the UK, but we have association members from all over the world, so you are not alone x Take care x Danielle x

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