* Author Topic: PGD for NF1. #1, #2, #3 #4 #5 #6= BFN'; surrogacy #7 = BFP.  (Read 23919 times)

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Offline Carrie88

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We're on a train to London tonight.
This time a month ago we were travelling down so happy and excited.
Now we're both miserable and meh.

Staying with a friend overnight otherwise it would of cost us 150 to get down tomorrow as we'd have to travel in peak time. I am so sick of travelling up and down to London and I am so sick of pgd.

I've got all our paperwork with us and I've wrote down all our treatment for Dr G. I've heard his clinic is called 'fertility bootcamp' and he often makes a bad first impression.

We'll see what happens tomorrow....

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    Offline Carrie88

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    Mixed emotional post.

    1. I thought dr Gorgy was great. He admitted we've exhausted a lot of options already but there's a few more tests to run.
    We had blood taken for:
    LAD
    Dq alpha
    KIr test
    Paip test
    And he's re testing my cytokines as they were borderline last year.

    He listened to us and I genuinely believe he knows his stuff.
    Results are in 10 days.

    So I was feeling okish until we had our follow up with guys today.

    The first thing they asked was do I wish to continue with treatment or do we want to move forward with something like surrogacy?

    This felt like a knife to my stomach, I've mentioned it on here but it's different when a medical professional says it.

    Guys have no advise - there's nothing else they can do.

    They also said the fact I bled for 1 day after this failed transfer isn't normal and it's a sign my lining is weak :(

    Feeling pretty heartbroken again.

    Should we actually just quit now?

    Offline Carrie88

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    Heading back down to London today for a consultation regarding the era test.

    My results have come back from Greece and have come back positive for ureaplasma parvum so me and DH need antibiotics.

    No results back yet from dr Gorgy, it's day 9 today so I'll probably give them a call next week sometime.
    The results of these tests will determine whether we will be carrying on or going via a surrogate.

    We've decided to stop using protection as well, guys have pretty much given up on us so why not? My periods are messed up though so I'd probably never get pregnant naturally anyway.

    Offline Carrie88

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    Not updated this for ages and ages so I'll start where I finished.

    I went down to see a consultant at city fertility about the era and he was lovely. He agreed this wasn't bad luck having so many failed transfers at my age. He thinks the era is a good move as I've never had any signs of implantation. He said he couldn't think of any more tests to do and I've covered everything once I've done the era test.
     
    The trip to London was a bit of a disaster. I forgot my purse so my husband had to use a NatWest emergency code so I could get money out, then I lost my return ticket so had to buy a new ticket for 90 (husband bought it online and euston printed it off for me) then I'd bought a new ticket and my ticket didn't even get checked by anyone!!!! Then I got back to Liverpool and went to the virgin help desk and my tickets were there, staff found them and did a call out for me but I must of already been sat on the train so didn't hear it. Nightmare!!!



    The results came back from Dr Gorgy, I'll just type my results.

    1. My high vaginal swab showed ureaplasma (so least it's consistent with Greece)
    2. Th1:th2 cytokines were normal therefore Gorgy wishes a repeat endometrial biopsy to check the NKC biopsy.
    3. My KIR showed that all 3 receptors they're looking for are missing therefore Gorgy wishes me to have neupogen treatment and a intrauterine wash.
    4. Lad result was low and dq alpha results mean DH is a suitable match so we need LIT therapy.
    5. PAI 4G/5G indicated insulin resistance so Gorgy wishes for me to take metformin.

    I was completely overwhelmed when I got these results so I had to get Gorgy to write it all down for me.
    So obviously there's more problems but they seem fixable?
    We're booked in for our first LIT therapy on 6th July and then we'll have our second one 3-4 weeks later, then A retest to check it's worked.
    So Gorgy thinks I have a touch of pcos due to the result of the last test which works explain my irregular periods, not ovulating, my hairy chin, my 40 follicles over my 2 ovaries, my spotty chin. Explains so much!!

    I went down to London again yesterday for my era lining scan.
    I moaned how pointless it was as I'd only been taking the medication for 10 days and Guys don't normally scan me till day 18/19 so if my lining is normally around 7mm then I was expecting it to be about 4mm.....nope 8.6mm?
    It's never ever been that high and I've had 4 transfers.
    Everything medication wise is exactly the same?
    The only thing I've changed is I've started acupuncture to regulate my periods (I came on CD35 today which is greet for me) and I wasn't on the pill the month before starting treatment.
    That's the only change which is crazy?

    Offline Carrie88

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    Back to London today for the era biopsy.
    I remember almost fainting due to the pain with the nkc one so I'm planning on taking codeine, paracetomol and ibuprofen.

    Then we're back down next week for the LIT therapy.
    We're staying at an air bnb for 100 as hotels were coming in at 300. Bloody ridiculous.

    Offline Carrie88

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    I can't believe I've not updated this for a month!! I'm going to do 2 posts as my news is quite long.

    So yes I had the ERA biopsy. I took 2 codiene and 2 ibuprofen and the pain was minimal but I was pretty out of it due to the cocodomol. The results are back and I'm getting them on Wednesday.
    Whilst I was there i asked them if they progesterone checks as this was a fake transfer and Guys don't check it I was interested in what it would be.

    Unfortunately it came back at 20. The doctor was pretty shocked as I've had 5 days of lubion.
    It needs to be about 80 on transfer day and I know some clinics such as CRGH like it to be 100.

    So a major issue with my progesterone absorption and it means my levels have always been low so guys have essentially wasted 5 of my embryos. Thanks a lot guys!!!

    I've done some research and found out there's a link between being insulin resistant which Gorgy has found I am and progesterone as if your glucose levels are too high and too low it affects the absorption.

    So now I'm on metformin I'm hoping this will help balance my levels out.

    I had the LIT which was so so painful. I literally just sat and cried my way through it.
    But once it was done it was ok.
    I have the second LIT on Monday and then we re test to check my LAD are raised enough.



    I'm continuing with acupuncture and I don't know whether it's the metformin or that but I've ovulated for the first time ever this month!! I know it's controversial in the pgd world but we've decided to try naturally for a bit.
    If I can't get pregnant though with ivf I doubt I will be able too but I thought well I ovulated, let's give it a try!! No one can judge us as no one else I know is in our shoes, needing pgd and having multiple failures.

    Offline Carrie88

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    So our next big news is we've decided to leave guys. The progesterone was the final nail in the NHS coffin.

    Here's the email I've sent them:

    We've not been in touch with guys for a while as we've been busy planning our next step.
    Our gut is telling us that after 4 transfers of 5 embryos there is a problem. This is not just bad luck and we find it hard to believe that all 5 embryos had problems with them to not implant so we've begun further testing.

    1. We've done the ERA test at city fertility - a complete mock transfer where they test your implantation window of whether you're receptive, pre or post receptive of a 5 day transfer. I followed my exact protocol set by Guys and on my fake transfer day and 5 days of lubion my progesterone levels were tested and they unfortunately came back at 20. City fertility said they like to see them at 80 on transfer day and I know CRGH like them to be at 100.

    So obviously a major major problem with my progesterone absorption. City fertility were surprised and shocked as I inject progesterone so my levels should easily be higher.

    I've had another test conducted which found out I have insulin resistant and its highly likely I have PCOS. I know I have polysistic acting ovaries from Guys but after I stopped the pill my periods have not returned properly, I'm not ovulating as well as a few other symptoms so I've been placed on metformin.

    After doing further research I found that a cause of low progesterone can be due to being insulin resistance as it interacts with your glucose levels. If my glucose levels are too high or too low it can affect the absorption of progesterone.
    Additionally my oestrogen was raised to the maximum dose for this past transfer and research also seems to suggest that high oestrogen can affect progesterone levels.

    Nobody's oestrogen or progesterone levels get checked for a FET, I was informed by Dr El-Touhky at my follow up. The Dr said I could have more lubion for my next transfer but after knowing what I know I don't feel comfortable transferring anything else without knowing my levels.

    This has not been an easy decision for us as we will be losing our NHS funding but we have decided we would like to move our embryos to a private clinic.
    We feel we have exhausted all NHS options and unless you fit into the generic NHS rules of 'success after 3 transfers' your options become limited due to the rigidity of the NHS.
    We need a clinic that will monitor my levels closely and leave no stone unturned and we've decided to move to Dr Gorgy at FGA.

    Ive found a courier company that we wish to use and I know we need to fill in forms with FGA.
    Do we need to fill in any forms with Guys?

    Please can you pass on our appreciation and thanks to everyone at the ACU at guys? We're really grateful for everything you've done for us so far and although we feel upset to leave as we got to know the staff really well, we feel we need to move to a clinic that will give us the best chance of success and at the moment, that's not Guys.

    Kind Regards





    I felt sick when I sent it as it means I've lost my NHS funding but I've had to follow my gut. Guys is not the right clinic for us.
    They emailed back and now I just need to sort out transferring my embabies across London to Gorgy!!

    Offline Carrie88

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    Off down to London tonight.
    We're shattered as we had a wedding in Huddersfield last night.

    Tomorrow this is our plan:

    DH going to Dr Gorgy at 8.15am to have his blood taken.
    He'll come back the hotel and we'll get breakfast.
    Head over to guys and sign the paperwork to release our embryos and give them the name of the courier.
    I'll go to dr Gorgy at 12.30 for the nkc biopsy.
    Lunch.
    Back to dr Gorgy at 3pm for the LIT.
    Tea.
    Train home.

    Offline Carrie88

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    I have returned from London and on annual leave today as I knew I'd be knackered from the wedding weekend and London.

    London went fine :)

    DH went for his blood taken at 8am at Dr Gorgys office.
    I also went as I read on Sunday night if you have pcos you can produce the LH surge but not ovulate so I wanted a progesterone test before the NKC biopsy to check I'd ovulated properly.
    Anything over 30 is a sign of ovulation and mine was 57.2 which is really good.

    I'm unsure how it was only 20 on the era test after 5 days of progesterone but maybe the metformin is really helping balance my levels out?

    I took 2 codiene for the NKC biopsy and it was still painful as Dr G had to do it a few times.

    The first time he didn't get enough tissue.
    Second time he struggled (my uterus is retroverted) so I know it can be tricky
    The 3rd time he had to use the ultrasound machine so he could properly see what he was doing and then that worked :)

    LIT went fine. I had numbing cream on for about an hour and a half. It still hurt but I didn't cry this time.
    The woman next to me though sounded like she was :(
    Bless us for what we have to go through (yes I've blessed myself)

    We also signed the forms with guys to start the ball moving with our embryos.

    Dr Gorgy has also said don't come back to London for the retest for the lad, which is amazing!! So they've given us the form and blood vial and we're getting our blood taken at the gp and then posting it Down to London.

    I'm gonna wait for these results and then get the NKC biopsy back together so we only have to pay 1 consultation fee.

    Once the results are back and our embryos have moved we can start preparing for transfer!!
    Maybe an October/November transfer? Eeek.

    Offline Carrie88

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    ERA came back as receptive!!

    :D