Hi i previously posted about being diagnosed with a large fibroid however my gyno now thinks I may have Adenomyosis. I was given no further information just asked to return in 4 weeks. I have found little information regarding this, has anybody on here had any experience of this that they could share? I am mainly concerned about fertility and what the treatment options are.



6 Replies

  • Hi Lisa,

    Hope this helps.

    Let me know how you get on

  • Google Adenomyosis to see what new options there are. I was diagnosed with it in 2000 and my only option was a hysterectomy which was ok with me because I was done having children anyway. Hope all works out for you.

  • There's a closed Facebook group called Nancy's Nook please look it up

  • I am part of a group on Facebook called EndoMetropolis, where a doctor regularly posts responses to any questions you may have. Look it up, it's very informative.

    I also have been diagnosed with sizeable fibroids, picked up on an ultrasound scan back in November. More recently a private consultant told me my uterus measures that of an 18-20 week pregnancy.

    Hugely concerned about this (thinking it may indicate adeno) I posted on the EndoMetropolis page and this doctor informed me that fibroids can make the womb extremely bulky and enlarged and that adenomyomas rarely grow to 8cm and 6.5cm which mine are measuring. He said in most cases anything measuring that sort of size within the wall of the womb is a fibroid.

    I too am TTC and this information has really put my mind at ease.

    Going into hospital on weds for a lap and hysteroscopy so will hopefully be more informed then.

    Wishing you all the very best.

    Rebecca x

  • Thankyou for your response, it is very reassuring to know that im not the only one in this situation. I find the lack of information about adenomyosis so scary. I worry that I'll never be properly diagnosed as this is often the case. I know the 'label' shouldn't matter but it really does to me. Mainly so others can understand that this is real and not just me having a moan. Aswell as the pain I find the bloating and swelling really difficult to deal with. As a teenager I suffered with eating problems and I can feel myself mentally going down that path again with the control giving me a sense of comfort (I hope this makes sense) I feel like my body is disgusting, my partner gets so frustration 1 because he doesn't understand the extent of the pain and 2 because I refuse to get undressed near him. I'm only 26 and feel like I'm defined by this unknown alien in my stomach. I'm not sure if this makes me a little strange! What part do u find most difficult to deal with? All the best with your next appointment and do let me know how you get on.


  • Mine is an overwhelming fear of never having children. I work as a primary school teacher and children are a huge part of my life already, but never having one of my own would leave me totally unfulfilled.

    My husband is really optimistic and doesn't doubt we'll have a baby one day. I wish I shared his optimism but can't shake off the feeling we'll end up childless.

    I too have a permanently swollen tummy, but i'm pretty heavy anyway so it probably isn't noticeable to others, and a heavy feeling in my lower abdomen which last from a day or two before my period starts until mid-cycle(ish). I also have terrible left hip and back ache during this time.

    Gyne problems are scary and unpredictable but this site has been a Godsend for information and a general place to have a moan! Try to stay positive if you can and by all means privately message me if you need a moan!

    Rebecca x

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