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  1. #31
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    Lilybaby - thank you for your PM

    Octoberbaby - thank you so much for posting your story re adenomyosis on here. A huge congratulations on your new 6 week old baby, thats wonderful news.

    Can I ask why your FS had you on 6 months of zoladex implants rather than 3 months & also who your FS is? I'm in Melbourne, I've set up a phone consult with Kelton Tremellen - though its not until 1 August as he is on long service leave... me been so impatient I have another phone consult with Christine Kirby in the meantime, so I am hoping she knows as much as Kelton seems to, they are both from Repromed in Adelaide.

    I also saw Dr Matthias recently (Sydney Reproductive Immunology) - I've consulted with him before. This time I asked him about doing a long down reg to shrink the adenomyosis. His only thoughts were & he did say he doesn't really cross over into this side of things, I would need to ask my FS's - that even though it may shrink it for the time I'm on it:

    1. my clinic may not want me to go straight into a cycle immediately after as effectively my lining has been shut down too and will be very thin

    2. that as soon as I am back on estrogen (HRT for Egg donor cycle) that it could possibly revert straight back to how it was prior to the down reg?

    3. that by doubling my progesterone meds 2-3 days prior to transfer would have the same effect?

    I wondered if you had any thoughts on this?

    Thanks a million

  2. #32
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    Hi Sooty May, I saw Professor Bruce Dunphy at Monastery IVF, Sunnybank in Brisbane Unfortunately, I believe he has retired earlier this year but I owe him everything.

    He had recommended 3-5 doses of zolaex and when my results were moderate to severe adenomyosis he wanted 5 doses. The timing then didn't suit us as we had booked a holiday prior to starting, so we did an extra implant. I went straight into a cycle so I wouldn't think that would be a problem. My understanding is that it will grow back. I don't know how quickly, or what causes it but I know my FS said it would be fine if I needed to do a few cycles. I can't see how doubling your progesterone would have the same effect but I don't know.

    I got pregnant the 1st time on a long down reg using the pill. Then my FS decided to do short protocols which he said were better for poor responders and older women but I had no luck. Changed FS who checked for ado and did the zoladex and it worked next cycle. Down regs certsinly have worked for me.

    It really is such a game of trial and error. You sound like you have a lot of people involved. I really hope you hit on the winning combination soon. Good luck! Let me know if I can tell you anything else.

  3. The Following User Says Thank You to Octoberbaby2010 For This Useful Post:

    sootymay  (28-05-2014)

  4. #33
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    Thank you so much Octoberbaby - any information is of a great help and invaluable. I now know to ask / or at least remember to ask (!) if it will grow back and if so, how quickly. It makes sense I guess if someone has more severed adenomyosis to have a longer down reg on something like zoladex. I know that name Prof Dunphy from when I was in Qld What a shame he has retired.

    Yes, it sure is trial & error unfortunately!

    Thx again - I do really appreciate your help .

  5. The Following User Says Thank You to sootymay For This Useful Post:

    Octoberbaby2010  (31-05-2014)

  6. #34
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    Hi @sootymay I have suspected andenomyosis have twice been told I have endo after laps and once they do the biopsy it comes back negative. I'm see lynn burmeister at monash after switching from mivf. I have had 5 failed transfers no chemicals no implantation. After my first 3 failed cycles with mivf I had a natural pregnancy. I had a missed miscarriage at 7.5 Wks. I was waiting to get my period again so we could start a fresh stim cycle and it was the shock of my life to find out I was pregnant straight after 3 failed transfers. To this day I don't know why it happened.we are in the unexplained category. The only hung I can now think of is that I had been on synarel 3 mnths prior after doing a long down reg cycle. Now we are seeing lynn and she she suggested andneomyosis is the problem and I'm on synarel for a few mnths.we have 3 frozen embryos. Ttc 4 yrs. I'm hoping this will be out unexplained answer

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    sootymay  (31-05-2014)

  8. #35
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    Forgot to mention after I so a few mnths on the synarel I will most likely go straight on to the hrt. I would highly recommend dr burmeister if you have not seen her already. With my previous cycles I was in prendisilone and clexane. She thought that may shut things down to some extent well at least my immune system. It must not have been strong enough. I've been suffering from this horrible period pain for a long time now.

  9. The Following User Says Thank You to Flemo For This Useful Post:

    sootymay  (31-05-2014)

  10. #36
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    Hi flemo, thank you so much for your response & your interesting story, congratulations on your miracle BFP it's interesting they couldn't detect the adneo. In surgery. From the little I have found out todate, it seems the long down reg of 2-3 months could/does help.. Gosh I hope so as it means I'll have to be patient before I can cycle again! I read on one website that estrogen feeds adneyo. & older women can have more in their bodies, though I still have more research to do myself on it good luck for your next cycle & I'll let you know how I get on as well

  11. #37
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    I had a phone consult with Dr Christine Kirby from Repromed in Adelaide on Friday re. adneymosis & the possibility of treating with a long down reg on Zoladex. WOW - amazing.... I am SO glad that I found out about them. Thank you everyone.
    She was fabulous, very helpful & down to earth..., they fully believe that adneymosis contributes significantly to infertility and are very thorough in the scans they do - they have had good results with women that have failed to conceive for years on end and then treated with Zoladex and had success. They monitor by performing a 3D scan initially, then another 3D scan 2 weeks later after the first injection to check that the adneymosis is reducing - apparently the number should reduce by 1/2 in the first 2 weeks & you typically stay on it for 6-8 weeks.

    She said it is very obvious from previous scans and the uterus volume (number) I had - which is apparently very high, that I have significant adneymosis. She said they see it a lot, NKCells = adneymosis, in most cases. I'm wrapped that I got onto them, I've asked if she could send me a letter outlining all this so I can take it to my FS in Melb and hopefully he can administer the zoladex and arrange scans from this end etc and they will oversee it from their end.




    Sounding very promising & I am hopeful now with this new approach.

  12. #38
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    Hi sootymay I'm glad you got some good answers. How's things going now, have you been to see anyone in melbourne? I have been on synarel for 8 Wks now.'synarel is very similar to zoladex. By the time I have the transfer it will be close to 3'mnths on it. Will let you know if I have any success.'this is sort of the last resort for me

  13. #39
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    Hi Flemo. I am with Dr Logistias in Melbourne & have an apt in a few weeks to discuss zoladex. I look forward to hearing how you go on synarel - good luck. I think zoladex sounds easier with 1 injection every month rather than daily sprays - ha ha ! I will prob be on it for 6-8 weeks then look at cycling - possibly in November. Let me know how you go too!

  14. #40
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    I know of him and I have heard he is fantastic he is on lvl 5 at the epworth my spec is lvl 8. Both through monash. Will definitely let you know how I go. I don't mind the spray itself it's more the side effects. The zoladex injection would most likely be easier. I have just started all the hormone replacement drugs and I'm still on the spray. Will be a good. 12 Wks by transfer really hope this works


 

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