Endo and now adneo

Hi ladies need a moan had my 5th lap sat for Endo but have now been diagnosed with severe adeno !!!! I feel angry frustrated upset he couldn't remove any because how bad it was so feel no better off still gonna be in the same pain before the op said the only way to get rid of it all is a hysterectomy I'm 30 said he's not happy to do it till I'm 34 4 more years of pain nooooooooo were so lucky to have a beautiful 22 month daughter we were still trying but had a miscarriage in Feb : ( iv read up on adeno and says there's high risk of miscarriages still birth and premature birth ? Is there any ladies out there who suffers with Endo and adeno does this mean to forget trying and focus on our daughter were so lucky to have don't think I could cope with anymore miscarriages I just feel hopeless right now how much more bad news !!!!! Sorry just needed to get all that out lol xxx

10 Replies

  • Hi Laura

    I'm afraid a lot of women suffer from both and I know you have severe endo. Ultimately a hysterectomy would be the only 'cure' for adeno but you could retain your ovaries and have all your endo excised. I know you mention being seen by a specialist in a previous post but is it in a specialist centre where your sort of endo should only be dealt with? This is required by the NHS contract for severe endo if you are in England, and the European guidelines require it too. Click on my name and look at my post on finding a specialist just to check that your surgeon really is highly skilled. If so perhaps you need a second opinion as unfortunately not all the centres have the same expertise. It's concerning that you are having a 5th lap.

    This article is very informative about adeno:



  • Hi thanks for your reply Iv already had my 5th lap on sat that's when I got diagnosed with the adeno as well he is an endometriosis specialist I checked b4 hand I was sick of waiting so payed private for a consultation then he saw me and operated on the nhs this gyne is different from the one who did my last 4 laps its just raw only having my lap 3 days ago and getting the diagnosis of adeno as well alot to take in xxx

  • Hi laura,

    Read part of your story on another post and felt I should reply. Very similar situation here. Diagnosed with endo at 25, suspected adeno at 27, confirmed at 29, now 30. Advised for yrs not to come off the pill and to pursue multiple surgeries. Finally came off in may, no kids but one miscarriage a month ago - believe me I know how harrowing this can be.

    Re. Removal of the adeno, as far as I understand it there are two forms it can take (both types can occur together) - focal - where the adenomyosis is clustered in one area of the womb muscle wall as a benign tumor, - diffuse - where the adenomyosis is spread through the muscle tissue disrupting the muscle function.

    Focal adenomyosis can be removed, the surgery is somewhat like the removal of a fibroid, except that a fibroid has a capsule which makes it easier to 'pop out' without affecting the surrounding womb tissue too much. With adenomyomas you have to cut into the womb wall which is trickier and ultimately means future births must be by cesarean as a weakness is left in the wall.

    Diffuse disease can't be cut out as it can affect large areas of the womb and it's ultimately impossible for the surgeons to see where all of is in the muscle without cutting it open - that is why hysterectomy is really the only cure.

    People with adenomyosis can have patchy wombs where some areas are grand for implantation of a pregnancy and some are damaged, so it is a bit pot luck with early pregnancy - sometimes going with ivf the doc can pick a 'good' spot which solves the problem. There are also other things they can do to help with early pregnancy issues. I'm completely in the same boat with you on all that.

    Re. Late pregnancy probs the issue is that whenever the muscle has to stretch with.the growing baby, when it is damaged by adeno sometimes it simply can't so can cause late miscarriage or rupture of the womb wall. Again it depends on the extent of the disease, if you've had a successful pregnancy before that bodes well though - remember a minimum of 20% of pregnancies in 'normal' women end in miscarriage so you could have just had a bit of bad luck last time.

    Adeno definitely doesn't mean you should stop trying for baby, it is possible and everyone is different. A lot of the times you only read the worst case scenarios online.

    I am due for hysterectomy once we've fingers crossed had kids and honestly I feel that day can't come soon enough too!!

    Good luck xx

  • Thank you for taking the time to reply I'm so sorry you have gone through a miscarriage : ( I really hope you get ur baby all us sufferer's long and deserve !! yes my adeno is severe he said everywhere was affected from what I took in cus was still high on morphine when he came to see me said he would not be able to remove any of it only by hysterectomy and the situation with having another child its more my husband that said we should stop after this diagnosis because were so lucky to have our daughter said he doesn't want to see me go through another miscarriage so he said we need to focus on our daughter and get you well deep down I know he's right but I really want more I think the need is more after being told I couldn't have kids naturally then to have my daughter then fell pregnant again so I know I can its just the fear of not having another successful pregnancy I'm at the point where iv had enough and cant put up with much more : ( xx

  • I know how you feel, it is such an arduous experience. My husband is the same, wants to protect me - he is adamant we are drawing the line at trying for one baby, then wants me to get the hysterectomy. Maybe I'm being greedy at wanting two?! You go through so much with endo; giving up on lots of other things (certain career goals, social time, even holidays!!) sometimes certain things can feel too much to give up on.

    It's so frightening feeling that you could have another miscarriage, personally for me it has felt very alienating as in my every day life I don't know any other women who've been through this. A lot of people won't necessarily mention that it's happened to them, so it is much more common than you think. A lot of pregnancies fail due to things like chromosomal miscombination and it's very natural in the early stages. The fact it happened to you may have nothing to do with endo or adeno. I know out of my mums friends who've had kids at least half of them had miscarriages (one had 4 and had 4 healthy girls as well), when I told my best friend about it happening to me she mentioned a work colleague who has 5 kids also had 3 miscarriages. It is very sad and I don't think it's possible to forget the baby you lost, but for us anyway we're trying not to let it consume us as there is a chance of another wee one on the horizon.

    Were you far on with your last pregnancy?

  • Yeah my husband is the same wants me to have the hysterectomy asap but don't think our men realise how hard its going to be after think they think our womb is out were cured its over mine has defo got a shock coming lol and yeah I always wanted more than one child no was only 6 wks had the positive pregnancy 2 days later had the miscarriage: ( xx

  • Haha you are so right!! Was chatting to my hubby tonight about it and he'd no idea about osteoporosis etc. never mind continuing endo! We're going to start trying again soon so bbt thermometers at the ready lol

    I was the day before 6wk mark when ours happened so hoping and praying it's just a one off as very common then. Nervy heading into the unknown a little! It's been so good to chat to someone who knows exactly what all this is like!

    I know the adeno diagnosis is just like a slap in the face don't let it get to you, do what makes you happy and focus on the good stuff.

    Wishing you lots of luck xx

  • Same here good to talk with someone that knows and understands we can feel so isolated living with this and I wish you all the luck with trying for your bundle of joy keep me posted 😊 if you don't mind me asking what area you in ? Xx

  • Yeah I know, I only really know one other girl who has ongoing endo issues. Friends who are healthy can be empathetic but I think it's hard for them to understand what it's like. I'm in N.I., where abouts are you? And yes of course will keep you posted :-) keep me updated on how things go with you too! Lots of luck and get well hugs xx

  • Oh your far away from me lol I'm in west midlands England and yeah defo will keep you posted too 😊 and good luck to you as well xxx

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