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Thread: adenomyosis - anyone have this condition?

  1. #1

    Default adenomyosis - anyone have this condition?

    hi there,
    I have had endometriosis for many years and recently had my second lap operation. We have been TTC for a second child for 18 months.



    however, after my second lap, it was thought by my gyno that I may have adenomyosis, since my uterus is enlarged and I experienced some similar pains to endo pains just 6 weeks after my lap operation (and just days before my period).

    what do others know about this condition? and most importantly (well to me) are wondering what my chances are to get pregnant again.

    The plan is to try for the next 3 months as this is the optimal time after a lap operation....

    any experiences or info you have would be great to hear...

  2. #2

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    A bit disappointing that no one has replied.......

  3. #3

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    Sorry I don't know anyone who has this condition.. however I do have severe endo, but it has been removed, via excisionally surgery........ and now i have full relief!

    You might be better googling your query... I am sure there would be heaps of info out there, actually i think the ECCA website has something on this condition.. google ECCA..

    regards

    leisa

  4. #4

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    I have done som googling - but was looking for others to talk to.....

  5. #5
    ~Jane~ Guest

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    I haven't heard anyone mention having it on BB before, unfortunately most of us are boring old endo sufferers. I do hear it is a shocking condition though and extremely painful.

    Have you checked the endo association sites as well?

  6. #6

    Default

    Hi Jane, thanks for posting. Actually, I have endometriosis as well, just had a recently lap operation hoping it would help us conceive our 2nd child - no luck yet and it has been 18 months - we are going to start IVF in March I think....and I am scared.

    As for adenomyosis - well, I cannot say that I suffer PHYSCIALLY too much - I seem to have a fair bit of pain around ovulation and every 2nd period, but basically, I am EMOTIONAL about it all - apparently it may have happenned as a result of my long, intense and painful birth (28 hours ) of my (gorgeous) son. Because I was trying to be such a 'tough' girl, my labour I feel went on too long without any dilation and my uterus also suffered and is abnormally large now.

    I still don't know too much about it...and how it may affect IVF treatment.

  7. #7

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    I heard somewhere that stage 5 is the class they use for adenomyosis and other organ wall penetrations but have not heard it since

  8. #8
    maggie Guest

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    Hi, i have adenomysos, and i also did IVF , if you need any quesitons answered , feel free to ask me.

  9. #9
    Rainbow Guest

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    Hi, I just found this thread. I have severe endo + adenomyosis. Apparently lots of endo women also have adeno but they don't know it, since it's hard to diagnose without a hysterectomy. As far as I understand, it is basically endo of the uterus walls. It causes the same sort of pain as endo. Apparently it doesn't effect your fertility. I have found it a lot harder to get info on adeno than endo. It's also a lot harder to treat, as it can't be surgically removed (without a hysterectomy of course). All the best.

  10. #10
    Angelwings11 Guest

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    Hi, I had Adeno. I was diagnosed at age 40, my doctors explained to me that it is a thickening of the walls of the uterus and it becomes bulky. I also had endo at the same time, after my laparoscopy I was worse with pain but I had a few complications. I have wondered if after the removal of endo, was most of the pain caused by my heavy, bulky uterus?
    I have a link (rather a long time since I visited, I wanted local feedback) to an American site, quite like this one. Jen's Adenomyosis Support = geocities (dot) com/zoieangel
    I wish you well
    Last edited by Angelwings11; July 16th, 2007 at 06:27 PM. Reason: changed link to text

  11. #11

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    hi again everyone,
    well, it is several months later and still no 2nd baby. I have had 4 FET IVF transfers now with fantastic embyros but no pregnancy as yet. I really think there is a implantation problem going on due to my 'probable' adenomyosis......not formally diagnoised. I have just read that more advance MIRs can detect this now...

    I would love to hear from anyone out there who has this and even more from someone who has fallen pregnant with this disease. I need some hope and feel just depressed right now. I am very grateful to have one beautiful son, but would very much love to be a mother over again...

  12. #12

    Join Date
    Dec 2006
    Location
    Gold Coast
    Posts
    35

    Default

    Hi Runnermum, I have also been told I "probably" have adenomyosis by my Gynae. He told me that about 4 years ago after a lap. It seems to cause very heavy/painful periods for me, however, I have fallen pregnant 3 times over the last 18 mths (all ending in early m/c) My Obs said she didn't feel it was anything to do with my uterus, and I had all the recurrent m/c tests done - all normal.

    So .... I am now seeing a wonderful Chinese Medicine/Acupuncturist guy who is treating me and who has had great success helping women to have healthy babies. Some of these women have been infertile for years. For the first time in years my periods are lighter and less painful.

    Maybe this condition can be helped by alternative medicine? Heres hoping!

    All the best

  13. #13

    Join Date
    Dec 2006
    Location
    Gold Coast
    Posts
    35

    Default

    Oh Runnermum I forgot to mention my GP said the fact that I had a "bulkier" uterus should help with implantation (go figure!)

  14. #14

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    thanks sooooooo much for your reply susan - I needed to hear that. I feel just so terrible today, like I am not ever going to be pregnant again. I am so sorry for your miscarriages, but good to hear that your FS said it may have nothing to do with your uterus.

    I do see a chinese herb lady and get accuputure - although just taking herbs at the moment. I don't think she really knows much at all about adenomyosis however.

  15. #15

    Join Date
    Dec 2006
    Location
    Gold Coast
    Posts
    35

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    Your very welcome Runnermum. I found my Acupuncturist through the Australian Acupuncture and Chinese Medicine Association Australian Acupuncture & Chinese Medicine Association - Welcome to the AACMA website.

    When I rang them I told them I really needed a highly recommended practitioner which they are usually not allowed to say but after I gave her my story the lady on the phone gave me a whole bunch! If you like I could ask him to refer you to one in your area.

  16. #16

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    That would be fantastic if you could Susan! I live in the suburb of Blackburn, which is in the Eastern Suburbs of Melbourne.

    I notice you live on the Gold Coast! We are moving there late next year! Have you lived there for long? Do you like it?

    thanks again.

  17. #17

    Join Date
    Dec 2006
    Location
    Gold Coast
    Posts
    35

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    Runnermum - We love it here. Well at first it took getting used to - we came from London so BIG difference! THe weather is great once you've adapted to the long hot summers. We have been here 12 years now.

    Tomorrow Ill ring up the Acupuncturist and see if he knows someone good where u are. Adenomyosis is apparently hard to diagnose and is usually only confirmed after a hysterectomy so all the u/s's Ive had (sincebeing told I could have it 4 years ago) haven't picked it up

    Anyway I am waiting for the go ahead to ttc again from the AP

    I understand your depression in this situation it is heartbreaking sometimes but Ive found doing things about it helps like getting as healthy as possible and trying alternative medicine. We will get our BFP's soon!

  18. #18

    Default

    t hanks susan - very much appreciated. Great that you love the Gold Coast, I am sure we will too! I have heard that adenomyosis can be detected with MIRs now.

    Best of luck to you too - I just got my period this morning.......I have 3 more frosties left from this first IVF cycle.

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