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IF Testing and Treatment w/o 4/15

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Re: IF Testing and Treatment w/o 4/15

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    @celticknotfire oh man, that’s so scary! I’m so glad they were able to save your ovary and that you’re ok!
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    dpchickensdpchickens member
    edited April 2019
    *semi-lurking*
    begging4abump I had an endometrial biopsy and not to scare you but it was the WORST thing I think I've ever experienced TTCAL/IF medically. It was NOTHING like a pap smear (which to me is just uncomfortable and sometimes a bit pricky).  To be fair, I have NO pain tolerance, and apparently the catheter tube thing went up a bit crooked :scream: So that sucked.  Actually, I just had an IUD put in 5 weeks ago and it felt like that did, but much more prolonged (and the RE had me 'hold my womb in place' while they finished) SMH. I held it together til I left the waiting room and then I cried for hours, cursed DH and God and everyone else in the world, and I think that was pretty much the beginning of the 'end' of the TTCAL journey for me...
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    @dpchickens that sounds about right. I wouldn’t wish it on my worst enemy. 
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    @celticknotfire I’m so sorry you went through all that! It sounds like that was both painful and scary, but so glad that the surgery went well!

    @dpchickens 😬 I just made my appointment for three weeks from now. I really hope it’s worth it. Thanks for your candor. I wonder if I could take something prior to it to try to cut down on the pain. The stp paperwork said to take some drugs preemptively to help with it, but I received no warnings about biopsy pain. I’ll be sure to ask! And, definitely not least of all, I’m so sorry that your journey has been so rough. ❤️ 
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    begging4abump  I'm trying to remember... I know before my blue dye test sonogram thing they said to take motrin/tylonal, but the nurse looked at my chart and no shit said "Oh, with all you've been through you probably won't even need that!" and I was all like, "Um, thanks?" But that test was NOTHING. super easy for me.  I don't recall them saying I should take anything for the biopsy and remember later thinking they had their priorities greatly skewed...
    and thank you!  May you have less pain and a much better outcome than I did!
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    Thank you all so much!  My doctor called me personally today and told me to make sure I'm really careful with my movements because there's a chance it might twist again. I go in Monday for a check and I'm hoping my ovary is at least a little smaller.  It's just another wonderful stop along the IF journey. 
    Me:37 MH:37
    TTGP since 07/2017
    **TW** in spoiler
    DX: PCOS, anovulatory, AMA
    Femara X3: no response
    Clomid X3: BFN (cyst and thin lining)
    IUI (Dec '18) MMC
    IVF (April '19) 9 retrieved, 7 fertilized, 2 normal PGT-A
    FET 06/12/19 - BFP! EDD 02/27/20




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    @celticknotfire That is scary and I’m SO glad they could save the ovary! Hope you heal quickly and everything else is smooth sailing!
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    keikilovekeikilove member
    edited April 2019
    Hi friends, this is a follow-up to my post last week in TTCAL & IF threads.  I am going to add some details in a second post here in case it is useful to any of you.  The original post said:

    "I just learned about Locus Medicus in Greece, whose doctors do a free 30-minute consult by phone and everything else can be done via mail. I got an appointment just 36 HOURS later! I will update here with any helpful info."  They are specialists in Infertility & Repeat Pregnancy Loss, particularly if it has to do with unknown immunity issues. https://www.locus-medicus.com/

    [*I am absolutely not getting paid or any kickback for sharing about their services.]

    UPDATE: I had my call with the doctor, Dr. V. (Dr. Panagiotis Venieratos)  He spent over ONE HOUR on the phone with me FOR FREE! I highly recommend anyone using their service if you have had repeat losses or have gotten no answers. The Dr. and his wife have dealt with RPL  themselves.  **TW for PG:
    They just had their 2nd healthy baby a couple of weeks ago after years of trying & treating for hidden infections.  Because they have a brand new baby the dr. might take a few days to send you the follow-up info to your call. END TW**

    What I really appreciated is that he had very similar thoughts about my repeat losses & possible causes as my new hematologist and new RE.  They are the only ones who didn't dismiss my concerns, so the fact that this doctor repeated the same things as these two brilliant people really builds my trust in him. I cannot encourage you enough to call him if you have unexplained RPL.

    1) You go online and select an appointment time. https://www.locus-medicus.com/consultation

    2) You can email a one-page history if you want.  You can also send any tests/bloodwork that you'd like the doctor to look over. (I sent mine only 6 hours in advance & he had reviewed my one-pager in detail by the time we talked.)

    3) You call them at your scheduled time using WhatsApp or Skype.  You can select the video option if you want.  I didn't.

    4) The doctor will take time to discuss your documents, then will ask you lots of questions about your history, your partner's history, your family members' health histories, etc.

    5) The doctor may make recommendations for testing for you & maybe your SO.  He will write everything in an email so you can remember all the info.

    6) If you decide to order any of their tests online, they will ship you all the supplies you need to collect your own samples at home. Then you schedule their service to pick up your items for free and ship back to their lab.

    7) They will have results and any treatment recommendations ready to email to you within about one business week!

    **General TW for mention of PG & Loss: I am part of some private groups online, a few of the ladies there had repeat losses until working with this clinic to identify some hidden infections, got treated with antibiotics (and/or other things), and then were able to conceive healthy babies. Some of them have amazing IF stories of having never ever seen a positive pregnancy test in over a decade of trying natural/IUI/IVF, and then got their BFPs naturally after treating with this clinic's recommendations. Some of those ended in CP/MC but the women still count it as getting closer since it's the first time they were ever able to conceive naturally.

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    keikilovekeikilove member
    edited April 2019
    Additional info from Locus Medicus.  I had to wait to share until I received my lengthy follow-up email from the doctor. This may be particularly helpful to those who haven't considered immunity issues as a root cause of IF or for those who aren't working with an RE.

    (**General TW for talk of PG, Loss, and TMI**)

    --Locus Medicus offers all kinds of tests that can be ordered in combos.  I liked that the doctor knew I had all these prior health issues but still only recommended 4 tests out of the 31 that are available.  I didn't feel like he was going overboard or pushing his products on me.

    --They have several tests for men.  Dr. said that in the U.S. most Sperm Analysis just involves checking the number and motility/speed of the sperm (which he also encourages people to get done locally since the sperm can't be shipped live to his lab).  What he does recommend is shipping a semen sample that was collected at home so they can examine the dead sperm for DNA fragmentation.  They also test the sperm for hidden infections so that they can identify the possibility of "vertical transmission of (otherwise harmless) viruses from sperm to the egg during fertilization...If testing reveals intra-cellular viral infections inside sperm cells which may be transmitted to the egg during fertilization, we need to stop viral proliferation before or after fertilization in order to prevent very early miscarriage due to infectious or immunological reasons. A semen culture is also recommended to prevent having an infection going back and forth between the two of you." From what I have read in my private groups online, he tends to recommend Valtrex for the men in the two weeks before ovulation. I've also seen recommendations for doxycycline (a basic antibiotic) for both partners in the month before intended conception.  Please don't take this as a suggested prescription since I'm clearly not a doctor.

    --
    For women he often recommends the Silent/Hidden Infection testing using your own menstrual blood collected at home. This will identify "Any active or chronic sub-clinical infections in the endometrium which impair implantation and could lead to repeat miscarriages, infertility, and serious pregnancy complications."   He was very kind when we spoke; I told him I was currently experiencing a chemical pregnancy loss and asked if I could collect that blood sample without waiting for his test kit to arrive in the mail.  He said, "Absolutely, you do not want to lose any more time or have to wait for the next cycle.  Get a sterile sample cup from any lab or doctor's office and collect your sample at home.  You can keep this in your fridge for several weeks before shipping--don't let it freeze."

    --Dr. also recommended a "High Vaginal Swab/Vaginal Fluid Cultures" test which will assess normal flora and leukocytes in the sample. "Although it is considered routine testing, it is very important that sample collection is performed by an experienced healthcare professional in a reliable laboratory at your location.  If you have difficulty finding a lab to perform this test, you can order our self-swab kit so that we can perform this via mail-order as well."  (My OB's office said they can do the swab but there is no lab in my area that can process this so I may have to do the mail-in option.)

    --Reproductive Immunology Test Panel: "Under normal conditions the embryo should be able to evade an attack from the mother's immune system, but for many women this is not the case. Your immune system could be exceedingly aggressive toward cells of embryonic origin and your immunologic baseline could be pro inflammatory rather than in a relaxed state. This could lead to implantation failure and early miscarriages (sometimes these are happening so early that you misinterpret them as an inability to conceive). The Reproductive Immunology Panel is recommended to gain information on your Natural Killer cell levels, pro-inflammatory cytokine levels and NK cytotoxicity to evaluate the state of your immune system and act according to the results."

    He also acknowledged how test costs can add up and made a recommendation for how I may want to spread the tests out over time if finances are a concern.  I should add that he did state the obvious: he acknowledged that due to my age it could just be that my eggs aren't as healthy and that could be the reason for the recent early losses.  But he thought that since I have been able to conceive naturally, "even with advanced maternal age", that he suspects we can work to get a healthy embryo after we know what's going on in the cells. I just really liked his approach overall and felt he was a thorough, kind, patient doctor who can relate to his clients' struggles.  I am not sure how much of this may be helpful to any of you reading but I hope someone else can benefit from the information.
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    keikilovekeikilove member
    edited April 2019
    **TW: Article resource for those with RPL**

    My last resource upload for this weekend!😆 I’m always trying to cross-check everything with scientific info to make sure I’m not going down the BSC rabbit hole of TTC. 

    https://www.sciencedirect.com/science/article/pii/S1110569015300042

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