thread: adenomyosis - anyone have this condition?

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  1. #1
    Registered User

    Dec 2006
    Gold Coast
    35

    Well overdue update!

    I last posted on this thread in 2006 after my third miscarriage. I was in the middle of acupuncture treatment for this. Well I did get pregnant again twice but sadly lost one at 5 weeks and another at 10 weeks so my husband and I have decided to stop trying and move on to other things.

    It has been an extremely painful and sad time over the two years but at least we tried everything we could. We have a beautiful daughter whom we treasure more than anything and are extremely grateful for.

    I wish success to all you ladies and hope your dreams come true.

    My adenomyosis seems to be getting worse as the pain and bleeding each month has increased so I think Mirena may be the go? I shall be seeing a specialist soon about this.

    Susan

  2. #2
    Registered User

    Feb 2008
    2

    I'll update, too.

    We finally moved ahead w/IVF after being told they could not surgically remove the adenomyosis.

    We put back two grade-A 8 celled embies and both of them took
    I'm currently 30 weeks PG with twins and have had a complication-free PG.

    sjs I'm very sorry for your losses and the pain you're in

  3. #3
    Registered User
    Add Footsteps on Facebook

    Mar 2008
    Waterloo, Merseyside, UK
    2,543

    hi all you ladies,
    i dont have adeno but i have got endo, pcos and suffer from severe adhesion problems for which i cant have any surgery to my abdo not even a lap - and am on morphine for pain.
    im only 21 and dont have children yet but iam going to have to go through ivf and eventually have a hystorectomy.
    i to have pain constantly but i bled for weeks at a time on the pill so i had the mirena put in the 9/1/09 and i had a d&c done and a camera and biopsys taken.
    it hasent been bad so far apart from bleeding and pain but i have got a infection from it but i had more done than usual and it is uncommon apparently.
    this could help some.
    i hope you all get bfp's soon for those or trying and for the ones having beautiful bubbas i wish you all the love in the world and all the best.
    sorry to babble
    love rach xxx

  4. #4
    Registered User

    Dec 2006
    Gold Coast
    35

    Sea74 Thanks for your kind words, and CONGRATULATIONS to you! How exciting and so glad to hear its going well. You made my day!

    Susan

  5. #5
    Registered User

    Oct 2005
    43

    Hi everyone,

    I have endo and adeno. And WOW what a roller coaster ride this has been.

    I feel for each and everyone one of you, and know how frustrating it is with the little information that is available out there.

    I was first diagnosed with endo in May 05. Fell pregnant in Sept 05 and am now blessed with a now 2.6yr old DD. It wasn't until Sept 06 that the pain started again. changed from a mini pill to the pill. seemed to work for a little while. Gyn suggested lap and in July 07 confirmed had endo and had merina placed, he didn't want to operate to remove the endo, wanted to give the IUD a chance. as it has been proven to help with reducing the endo, with the pain and AF.

    the pain increased, AF became every day and general life was unbearable. I sought another Gyn, this time a specialist in the field.

    Had another lap Feb 08, this time had endo removed, well, as much as they could safely, the IUD removed, established R ovary not in the best condition and that my Uterus was enlarged and that the size of a 12wk pregnancy, and diagnosed with adeno.

    Since then I have been on 3 different pills. Tried progestogens without success and am now on Zoladex, yes at the age of 29, was induced chemically into early menopause, due to finish end of Feb 09 (only ever a 6month option)

    I was in server pain every day and managed it with a synthic morphine, not exactly ones choice, but was the only thing that helped numb the pain. And I had tried just about everything out there.

    Zoladex for me has been used as a temporary 'time out'. I had no energy as my body has been fighting with this, for the good part of 2 years now. I was not objective, I was irrational and highly emotional with any decision I needed to make. To help with the hot flushes associated with menopause and other side effects, I started on HRT back in Nov 08 and had a horrendous relapse which landed me in emergency with outrageous pain. So HRT was stopped and I have been living with hot flushes every single day. My body didn't like any hormones added back to it. And unfortunately this is also the last of the treatments, as such. My specialist has exhausted all options to try and give me quality of life with this disease, and now some decisions have to be made.

    With 1injection left (feb 12th) I have some rather incomplete choices to make. As All roads eventually lead to a hyst. Its a matter of when. So these are my options,

    1. do nothing and see what happens
    2. try for another baby. However my partner and I don't want another one, now. But what is to say that we don't want another one in 5 years time.
    3. My specialist is suggesting that I try the merina again, which will slowly allow the hormones to return (all the above options with lead to pain, when no one can answer this for me)
    4. Hyst, now, which I would need to get another 2 opinions first. And honestly, who can make that decision, I know I can't at this point in time. I need someone to find another way to help me deal with, I need for someone to reassure me NOW that I will be pain free and everything will be ok. Making the decision to have a hyst now or in 5 years time, would as I see it, is the biggest decision any woman would have to make or deal with.

    Ladies, I can't tell you enough how tired I am of this elimination processes I have been through, just to get here today. The process in which to try and get some sort of normality with all of this. I can't express how much I fear the pain returning and living constantly under a weighted cloud of broken hope.

    I will say that I have an amazing partner, who has been patient and understanding through the entire ordeal. And we started cousenlling today, in hope that someone from outside can help give some perspective on the matter and perhaps give us some tools to help us make an informed decision.

    I am truly sorry for the length of my post

    Vanessa

  6. #6
    Registered User

    Sep 2006
    Brisbane
    35

    Hi Ness,

    It certainly doesn't sound like an easy choice but I think I am in a similar situation to you. All I can really say is, if you even think that you MAY want another child don't get a hyst. Zoladex sounds like it's doing more harm than good so personally I would try to avoid it.

    Did you have any side effects from the mirena? I had one inserted to help with adeno but it's been 2 months of severe pain and pain killers I've been prescribed don't help at all. I'd be interested to hear more about this synthetic morphine though.
    Depending on your reaction to mirena it might be worth trying this again?

    I had my endo cut out and prescribed combined pill + progesterone only pill full time to keep it at bay. But the adeno is the problem.

    I'm 24 and want to have children within a few years so all I can really do it try to find the best painkilling method in the meantime until I'm ready. Unfortunately I'm yet to find this method and any help would certainly be appreciated.

    Although I'm not looking forward to coming off the pills to fall pg as the endo will return.

    You're right it is all very frustrating!!!! But what ever decision you make I'm sure it will be the right one for you. Good luck and keep us posted