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  1. #131
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    Congrats on your pregnancy also AllyFunk! It's nice to hear that miracles can happen! X

  2. #132
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    Hello all, I'm new to this thread but have been on the NK cells thread for over a year. I'm interested in testing for adenomyosis and Dr Tremellon's said via a nurse that I need an MRI to test this... for anyone who's had this done, can your GP write the referral for it in Sydney? I'm not sure if I need to ask for something in particular of if just saying it's for adeno is enough? I have my 1st call with Dr T in January so he isn't treating me yet as such, I just want to move things along if I can. Appreciate your help, I am trying to read through the whole thread but it's taking a while!

  3. #133
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    Thank you. Yes its very deflating I am happy to share my protocol- but not sure exactly what you were after? I've included it in a previous post - but if you wanted to know more, let me know.

    Quote Originally Posted by Hopeful Mama View Post
    Sootymay, a BIG congrats to you, how exciting!! Must be such a surreal feeling!
    We had our 8th unsuccessful cycle & it has really taken it's toll emotionally. Like you Sootymay, I have never had a BFP. It's so deflating.
    I saw Dr Kelton for a second opinion & really liked him, but after reviewing their sperm donor options have decided to stay with CFC.
    Sootymay, would you mind sharing the exact protocol he did for you? I want to share this approach with my FS & with any luck, our next one will also be a positive!! Fingers crossed.
    All the best with your pregnancy x

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    PreciousHeart  (21-12-2014)

  5. #134
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    Preciousheart - I'm not quite sure how you could go about getting a referral for an MRI. I had had one last December, immediately after a cycle when I had some issues and they were worried about my ovaries, hence the MRI. You could try asking Repromed to write a referral for you?

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    PreciousHeart  (21-12-2014)

  7. #135
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    Hi Sootymay,
    How is everything going? I have been crossing everything for you & hope you are doing well.
    I missed your response with the craziness of Xmas, thank you so much for that )
    I did scroll back to your protocol & noticed dr Kelton used zoladex for 3 months & then Lucrin for 2 weeks.
    He did mention to me that he also implements a steroid & aspirin as well for the immune/inflammation part of it all. Did he do this with you? If so, what did he prescribe & when & how long was this implemented for? Did you go on hormone replacement therapy prior to transfer? If so, how soon before transfer was that implemented & what did you use?
    Sorry the the 100's of questions, I just want to make sure we get it right, as I sometimes feel like a guinea pig with my FS! I wish I could take the expertise of Kelton with the donor plan of CFC & I would be happy! )
    This will probably be our last shot.
    Thanks once again x

  8. #136
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    Hopeful - I'm good thanks and progressing well, thank goodness.

    I only used Repromed for the down regulation, nothing else. I used CFC for the HRT prior to transfer and followed their protocol and I used Dr Matthias in Sydney for the immune protocol which of course involved steriods etc. I was also on Neupogen, IVIg, BA, metformin etc. If you have immune issues have you had these looked into? If its your last shot, I would look into it. We went 3 times to CFC and I was only aware of my immune issues a few months prior to our first cycle, from finding a forum and realising I should investigate, thank goodness I did.

    Good luck !

  9. #137
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    Thanks so much sootymay for pointing me in the direction if this thread. It is wonderful to read everyone's stories and it give me so much hope.

    Hi ladies - I hope you don't mind me joining in on this thread?

    A huge congrats to everyone who recently got their BFP! Sootymay - that is wonderful news. It sounds like you've been through so much! And AllyFunk - what a wonderful way to get a BFP just before you start IVF. Your stories give me hope.

    A little about me. I'm 35 and was diagnosed with endo and adenomyosis at the end of September last year after a laparoscopy and hysteroscopy. I haven't actually had the extent/severity of my adeno checked out via MRI but my gyn and FS said it's pretty clear I have it from the look of my uterus - which is apparently bigger than normal and looking 'bulky'. The reason I had all these investigations is because I'm having a lot of trouble trying for bub#2. We're incredibly lucky to have a beautiful daughter who is almost 2.5. She was conceived easily and with no miscarriage or issues. Trying for #2 has been a very, very different story. I've now had three early miscarriages all around 5 weeks. My most recent was last November. I had the lap done after my second miscarriage and that's when the adeno was diagnosed. I then was told to try naturally for a while. Got pregnant on the second cycle after the lap but again miscarried. I've just started seeing an FS who has done testing for nk cell issues. I'm borderline for those - with only slightly elevated blood levels (13) and high-normal uterine levels.

    My FS has put me on Prednisolone 20 mg/day and we are trying naturally for 3-4 cycles before moving to IVF. FS seems confident we'll get there with her 'tweaks' naturally and won't need IVF but I'm not so sure. I feel quite sure the adeno is a big part of my problem and therefore feel like we'll need to actually do something to address that before we'll be successful. So I'm guessing we'll soon be on the IVF train and doing a long down regulation.

    Sorry for my essay!!

  10. #138
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    Hi ladies,
    Me again - sorry!

    Just wondering if anyone else with adeno has issues with spotting? I have heaps of crazy spotting in my luteal phase. Usually starts around 5 dpo and continues till AF. This cycle, however, it started at o (!!!!!) and is still going (I'm 4 dpo now). It's sooooo infuriating and makes me feel out all the time. I've had my progesterone checked and it's fantastic. And had a biopsy to check my lining responds appropriately to progesterone and that was ok too.

    Because my progesterone always comes back good my FS doesn't think I need progesterone supps. But I'm wondering whether it's worth me trying them just for a cycle to see if it makes any difference to the spotting. It really does my head in!!

    Anyone else suffer something similar?

    I never used to spot like this before DD. I was always a pre-AF spotter but usually only about 4 days before AF. Now it's often most of my luteal phase and is often red whereas before DD it was only ever dark brown. Sorry TMI!

  11. #139
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    Welcome Lulubee - I'm glad you've read through our little thread - it really gave me renewed hope when I found this through a recommendation of a friend, as all my FS's had breezed over adneo. making out it wasn't an issue.

    I didn't have any spotting in between periods - no symptons at all of adneo other than sharp stabbing pains on my right hand side that I have had over the past 4 years (since commencing IVF) which would commence on the 1st or 2nd day of my period and it wasnt constant, maybe every 2nd/3rd cycle... and I'm still not sure if these were related to adeno or not.

    Good luck with everything - I wonder if you can down reg and then try naturally? Not sure how that works? But then you may lose time in trying to get your body back in sync to ovulate without HRT meds?
    Last edited by sootymay; 10-01-2015 at 16:15.

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  13. #140
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    Quote Originally Posted by sootymay View Post
    Welcome Lulubee - I'm glad you've read through our little thread - it really gave me renewed hope when I found this through a recommendation of a friend, as all my FS's had breezed over adneo. making out it wasn't an issue.

    I didn't have any spotting in between periods - no symptons at all of adneo other than sharp stabbing pains on my right hand side that I have had over the past 4 years (since commencing IVF) which would commence on the 1st or 2nd day of my period and it wasnt constant, maybe every 2nd/3rd cycle... and I'm still not sure if these were related to adeno or not.

    Good luck with everything - I wonder if you can down reg and then try naturally? Not sure how that works? But then you may lose time in trying to get your body back in sync to ovulate without HRT meds?
    Yes, I'm so glad you pointed this thread out Sooty! Thanks so much. I'm not good at just plodding along by myself on these things - I love talking to others who can relate. And it's so useful information sharing and hopefully helping one another out.

    I'm also experiencing issues with people down playing everything!!! First I had my GP telling me spotting for 10+ days before AF was 'no problem' and 'normal'. And then even after pushing and having the lap and being diagnosed my gyn and FS seem to not be bothered by the adeno. They tell me it won't cause problems for me getting pregnant. Gyn said it wouldn't be an issue at all and FS said it only causes people problems getting pregnant in the first place and that it doesn't cause miscarriages. Well, it certainly does seem to be causing miscarriages in my case. You read so much conflicting info too - I've read scientific paper after paper stating that adeno increases miscarriage risks and can play a role in recurrent pregnancy loss - which I'm experiencing. But my FS doesn't seem to think so. And even my FS was brushing off my three miscarriages in a row still saying it's likely to be chromosomal. So frustrating. I know it's not chromosomal. It's something else. I'm sure. I'll get there in the end. It might take some pushing but I'm doing my research and I know what I need to do. I'm actually looking forward to IVF and doing the down reg. It's giving me hope.

    I also don't have any real adeno or endo symptoms - aside from weird spotting. No pain at all. Bizarre how these things can present so differently in different women.

    Yes, Sooty, I'm definitely going to ask about down regging and then trying naturally. I'm not sure how that works either - in terms of what the body does about kicking in naturally after being put into menopause - and not even sure if it's possible or recommended to try naturally after a down reg. but definitely worth asking.

    How is your pregnancy going? How far along are you?


 

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