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  1. #141
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    Your welcome Lulu - I think it's a hidden gem and its probably because specialists are downplaying the adneo as not been a problem. I've just about googled everything under the planet in the past 5 years and surprised I never found this either until recently

    I'm glad you are researching everything, we need to unfortunately. Its so sad to hear they say its chromosomal without even testing & just keep saying, good luck, try again.

    I'm 10 weeks today. Counting down until 13 weeks where I think I will relax a bit more. I've just come off 2mg dexamethsone and onto 30mg Prednisolone this week, so a little bit nervous, hoping I don't have any flares - not even sure if that's a possibility and I'm still on Neupogen until 12 weeks and had IVIg 2 weeks ago - so really, there's probably not a alot more I can do, but try and relax.. yeah right !

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    Lulubee  (11-01-2015)

  3. #142
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    Quote Originally Posted by sootymay View Post
    Your welcome Lulu - I think it's a hidden gem and its probably because specialists are downplaying the adneo as not been a problem. I've just about googled everything under the planet in the past 5 years and surprised I never found this either until recently

    I'm glad you are researching everything, we need to unfortunately. Its so sad to hear they say its chromosomal without even testing & just keep saying, good luck, try again.

    I'm 10 weeks today. Counting down until 13 weeks where I think I will relax a bit more. I've just come off 2mg dexamethsone and onto 30mg Prednisolone this week, so a little bit nervous, hoping I don't have any flares - not even sure if that's a possibility and I'm still on Neupogen until 12 weeks and had IVIg 2 weeks ago - so really, there's probably not a alot more I can do, but try and relax.. yeah right !
    After my experience with specialists and doctors over the last year or so I'm certainly a huge advocate of people being proactive and not taking anyone's word for anything. I think there's a lot to be said for trusting a patient's knowledge of their own body and their instincts. I'm certainly not going to be complacent anymore.

    That is fantastic that you're 10 weeks. Sounds like it's all going really well and you're getting the best possible care and treatment. I'll keep my fingers and toes crossed for you that everything keeps on going brilliantly.

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    sootymay  (11-01-2015)

  5. #143
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    I'm so happy I found you ladies. I feel so good today and I think it's honestly partly to do with finding this thread. The support, the wealth of knowledge and the shared experience just makes me feel better. I feel more hopeful. I really hope we all get sticky BFPs really soon.

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    sootymay  (11-01-2015)

  7. #144
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    Just popped I here to say congratulations to @sootymay - we were on the sa threads together for a while there. So pleased to see you're currently up the duff. You've been through so much!
    Em x

  8. #145
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    Thanks Emski - that's really thoughtful of you. I heard through the grapevine that you had success too and are planning another trip in the near future, Congratulations, that is really exciting. Amongst all the heartache & expense, the best part was visiting SA 3 times, I do love it and would even love to live there in another life! Thank goodness we got lucky this time - it wasn't an easy journey & I'm still adjusting to moving on from TTC to being pregnant - it really still doesn't feel real yet.
    Last edited by sootymay; 11-01-2015 at 16:26.

  9. #146
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    Hi ladies,
    I need some advice.

    I have adenomyosis and have had three early miscarriages which I suspect were cause at least in part by the condition.

    I am currently doing my first cycle on Prednisolone (steroid) to treat immune issues.

    I'm 8dpo currently, and suspect I might be pregnant. I am, however, worried as I'm spotting (I always spot and bleed in the luteal phase) and my uterus is twitching and acting up. I have complained of a twitching uterus for years and get fobbed off by doctors. I think it might be my uterus muscle contracting and spasming due to the adeno.

    Anyway, I'm worried as my miscarriages always seem to start with an increase in my uterine twitchings.

    My question is - do you think I should ask to be put on progesterone? I have been tested a few times before and my levels are always good so my FS doesn't think I need it. But in light of the spotting and my uterus muscle twitching like this I feel like maybe I should give progesterone a shot. I just want to do something to calm my uterus.

    If I am pregnant right now I just know I'll kick myself if I don't do everything I can.

    My FS is going to think I'm bonkers. Will KUP

  10. #147
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    Hi there-

    I tried posting before- so not sure if it worked.

    I'm sorry to hear about your miscarriages -

    I naturally conceived last year- and at 5 weeks I had spotting after a BM. My gyno put me straight on Progesterone 8% crinone pessaries until week 9 two a day. He never checked my blood- but wanted me on progesterone immediately.

    The spotting stopped and I'm currently 16 weeks on Sunday. I did have a slight spot last week- and that could be due to my retroverted uterus trying to tip into the right place ATM.

    I would suggest as soon as you get your BFP talk to your gyno about crinone


    Good luck- I know it's a scary time!!

  11. #148
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    Quote Originally Posted by AllyFunk View Post
    Hi there-

    I tried posting before- so not sure if it worked.

    I'm sorry to hear about your miscarriages -

    I naturally conceived last year- and at 5 weeks I had spotting after a BM. My gyno put me straight on Progesterone 8% crinone pessaries until week 9 two a day. He never checked my blood- but wanted me on progesterone immediately.

    The spotting stopped and I'm currently 16 weeks on Sunday. I did have a slight spot last week- and that could be due to my retroverted uterus trying to tip into the right place ATM.

    I would suggest as soon as you get your BFP talk to your gyno about crinone


    Good luck- I know it's a scary time!!
    Thanks so much for your reply AllyFunk. And huge congrats on being 16 weeks. I got my BFP today at 10 dpo. After a bit of confusion with my FS I have just started progesterone pessaries tonight. I am on 400 mg a day. Bit annoyed with my FS as she said I didn't need to be on them. So it's really only me pushing to be on them. My progesterone level only came back at 52 yesterday, so ok but not super high. And given that I've had three miscarriages and have endo and adeno I just would have thought she'd put me on progesterone as a matter of course. So I'm a little annoyed I'm only starting them today at 10 dpo. But hopefully this will be in time to keep this baby sticky!

  12. #149
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    P.S. do you know what dose in mg you're on?

  13. #150
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    Congratulations Ally Funk.

    Lulu - sorry just saw this, I don't pop in here too much. Congratulations ! So glad you've got your FS to give you progesterone. My understanding is high progesterone levels help with immune issues as well by keeping everything calm. I am on PIO (Progesterone in Oil injections, 1 per day) + 1 x 400mg pessarie in the morning and 1 x 90mg Crinone at lunch (for convenience as at work during day). My levels have remained at 160-190 which is really high, but bearing in mind that it calms the immune, I'm happy to have high levels. I'll stay on these qty's until 12-15 weeks when I start weaning - and then will re-test prog levels at 16 weeks.


 

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