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  1. #361
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    Thanks everyone for your well wishes

    Good luck to the ladies doing intralipids tomorrow. Hope they go well. Cool that you can meet and have a chat!
    @Miss Sagi - how was the safari! FX that your egg donor's 100% stays that way

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    MGC Bertie  (25-01-2015)

  3. #362
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    Quote Originally Posted by Karolina View Post
    @Miss Sagi, I forgot to ask. With your MTHFR homog, are you on the folinic/methylofolic acid? Or you didn't bother and doing Megafol?
    Karolina, i take methafolate (cant remember the name, the broken down form). I buy it from USA, iherb.com, solgar brand 1000mg.

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    Karolina  (23-01-2015)

  5. #363
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    Quote Originally Posted by Lulubee View Post
    Thanks everyone for your well wishes

    Good luck to the ladies doing intralipids tomorrow. Hope they go well. Cool that you can meet and have a chat!
    @Miss Sagi - how was the safari! FX that your egg donor's 100% stays that way
    Lulubee, i'm staying in a private safari lodge for 4 nights with 2 game drives a day, will let you know how i go as first drive is in a couple of hours 😊

  6. #364
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    Hi everyone! I've been off the board for a while but reading each day... so much happening here! Lulubee I am SO happy that you got good results, wonderful! Bertie you are a star being where you are at now, amazing! Miss Sagi how cool you're off to SA, all the very best with it and BBhope I hope all is going well for you. Francesthecat, great to see you cycling again! Why the change from dex to pred??? Legwarmer how the hell are you, I must catch up with you!!!

    Hello to everyone else and newbies, great to read your updates

    Well I got floored today... thanks so much to Sootymay, my enduring thanks to you for warning me about adenomyosis, the hope there is with zoladex and Dr Tremellen & his team at Repromed in Adelaide.

    I got my GP to refer me for an MRI and spoke to Dr T today on the phone. He said I had "very severe adenomyosis" that it was a "very significant disease"... he told me that a French study showed that less than 8mm junctional zone thickness is ok/normal; that 8-12mm JV thickness is mild; and that above 12mm is severe and you have a 2% chance of pregnancy above 12mm. My reading on the MRI was 25mm. So basically, with each transfer, I have had a zero % chance and have been wasting my time and money for 2 years. My Genea FS saw diffuse adenomyosis on an ultrasound in Jan 2013 and again in Feb 2014 and did nothing, said nothing. I am beyond furious at the $40K and 2 years we have wasted.

    Dr T says with 3 months zoladex and a PGD tested embryo I will have a 65% chance - only recommends 15mg pred, said I could do Dex if I wanted based on Dr M but doesn't think I need intralipid, neupogen, IVIG, etc etc. Why Dr M didn't take note of the adenomyosis on those 2 scans either is beyond me, but kept upping me to neupogen, IVIG instead. Dr T said most doctors "aren't there yet" with adeno, immune etc. Lucky all of us...

    Lulubee do you know what your JV was, did you get a copy of your adeno report?

    I urge you all to get tested for adeno if you are having big troubles, it can be done with biopsy or MRI. What's the point in taking dangerous and expensive drugs and wasting embryos when you are ****ing against the wind?!!! I have hardly any pain with the adeno I have so don't think you don't have pain to have it.

    We're thinking it over but will likely do one more round with our egg donor, have PGD freeze all and transfer after 3 months on zoladex, then one month getting back to normal on estrogen and crinone.

    Dr T said adeno causes glands in the uterus to inflame and there is no way implantation can take place, the severe inflammation prevents it and inactivating the glands with zoladex (you go into menopause) is the only way to stop this.

    Wow so that's me for now, hope you all have a great long weekend! Lovely Ladybug how are you going????? you must be nearly due, how are you?!!!

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    Fiona2  (24-01-2015),Little Ted  (23-01-2015),sootymay  (26-01-2015)

  8. #365
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    oh also, when I was raving about stopping dairy increasing my ferritin (iron stores) from 15 to 41, well guess what - it was the neupogen mucking with the levels same as it does with white blood count - so once I stopped the neupogen my iron went to a lowly 9... so don't bother stopping dairy for iron levels!!!! God knows what else the neupogen messes with, scary...

  9. #366
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    Great news Precious, I'm with you on the loss of money because most of the medical proffessionals do not understand immune issues. And from what I undetstand an MRI is the only way to detect Ademonoysis?

  10. #367
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    Oh dear, @precious... how frustrating! I mean it's amazing that you have diagnosis and a potential treatment but the fact that FS knew about it so long ago makes me literally sick. So much stress and money. I am super excited however to see what you will achieve after taking the recommended meds for 3 months + PGD. Hopefully you'll get your BFP soon .
    I am definitely adding MRI for adenomyosis to my next test list.
    Last edited by Karolina; 24-01-2015 at 06:09.

  11. #368
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    @PreciousHeart hello lovely! Wow that is frustrating although an incredible step forward in your journey. You are in great hands with that Dr in Adelaide!!!

    Sent from my SM-T210 using The Bub Hub mobile app

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    Wow precious. How frustrating! You should absolutely tell DrM about this. And the side effect from neupogen. It sounded like there are a lot success when I talked to him last with neupogen. And he told me that's next for me. To be honest, I hope I don't need it!

  13. #370
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    @precious Heart - Oh my goodness, PreciousHeart! I am so sorry this has gone unchecked for so long. I can't believe doctors have picked it up in the past and dismissed it! I don't blame you for being absolutely livid about this. I would be too! I have heard, so, so, so many success stories of women with adenomyosis (even severe cases like yours) having the Zoladex down regulation and then going on to have successful pregnancies so there is certainly a lot of hope. I'm so glad you finally have this diagnosis and can address the issue properly. Stupid F-ing doctors!!

    I actually haven't had the MRI, Precious. I had my adenomyosis diagnosed during a laparoscopy and hysteroscopy for suspected endometroisis as the end of September last year. Via the hysteroscopy my gyn/surgeon said that she could see that my uterus is larger than normal and 'bulky' in appearance. And from my pics it does look uneven. At the time I was a bit shell shocked and never asked how bad my case is but she said at the time she didn't think it would cause me any problems getting pregnant, so I assumed my case is mild. When I first saw my FS in November last year I asked about doing an MRI to assess the severity of my adeno and she brushed it off and said there's not much point for me (! not sure why, something about the MRI people not knowing what they're looking at??). So, yeah, I've never had it properly assessed.

    I don't know if it helps but in addition to the prednisolone, aspirin etc. that I'm on I also take a daily high-dose magnesium tablet as I get a lot of twitching in my uterus and I hope it helps calm things down.

    Fingers crossed that this proper treatment plan does the trick for you
    Last edited by Lulubee; 24-01-2015 at 12:55.


 

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