* Author Topic: St Mary's Manchester part 4  (Read 12108 times)

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Offline nuttynat1982

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St Mary's Manchester part 4
« Reply #10 on: 21/12/16, 11:58 »
Hi Eilidh

Sorry you didn't get your bfp with your last treatment. I transferred my funding from st mary's to Care this time last year as my treatment had become very complex and I felt st Marys were struggling to decide what to do with me.

My history is when I was referred to st Marys I had endo and pcos and approaching 30, I had a very early natural m/c in my early 20's but nothing since then. Initially everything was fine at st Marys as my treatment was pretty straight forward and I had 2 day 3 embies put back which I achieved a bfp with on embryo. Sadly when I had my 8 wk scan we found out that it had stopped developing at 6 weeks and had suffered a mmc which I had a d and c to remove.  After this there was some delays due to paper work mix ups and my file wasn't reviewed until 6 months later - which was when I started cycle no 2 which I ended up with 4 day 5 blasts and a day 6 blast , 1 was transferred and the remaining ones frozen, I got a bfn that cycle. For the next 12 months st Marys tried to get my lining nick enough for a FET but my body would not respond to he drugs despite being on double so lots of cancelled cycles after which they decided to do a hysteroscopy to look at the lining where they learnt that my womb was completely full of adhesions and scarrs as a result of my D and c and there was no healthy tissue for anything to implant in, they removed the adhesions but then really struggled for the next 12 months to decide how to handle my cycles the best to get the lining to grow plus as I was now complicated and they were very limited with what was available to hem under the NHS. This time last year they just decided to do a transfer anyway even bough he lining wasn't good to see what happened so transferred 2 of my blasts which again I got a bfn. Me and DH decided at this point to request s copy of all my notes (you have to pay for them) and start the process of moving my funding to care manchester. BEST DECISION I EVER MADE. Went for my consultation, the consultant knew all about ashermans syndrome (the name of the condition that called he scarring) and had the ability to fully Taylor my FET protocol for my needs which made a massive difference, I also went for acupuncture. My lining was of very good thickness and quality, I had 1 single blast transferred and got a bfp sadly I had another mmc again (least we knew now that we can still get a bfp) but we paid care privately for Chicago tests which showed I had elevated natural killer cells. Roll on to this cycle - care once again tailored my cycle to suit me - yes I have had to pay privately for some of the meds but they have thrown everything at me. Today I have had my remaining day 6 blast transferred which 100% survived the thaw and again my lining was how it should be. I've had no stress what so ever about trying to get through on the phone, I decided when I was starting so there was no waiting to get accepted, and I had 4 appointments in total - 1 for my consultation, 1 to sign consents/teach, 1 scan and 1 transfer.

I can fully recommend transferring over - especially if you are complicated, because they are able to work outside the box and aren't restricted to what the NHS has available.

This isn't intended to bad mouth st Marys as I think they are fantastic there - I'm under he gynae and recurrent m/c clinics there plus have had ops there. There is just so many ladies being treated and hey just don't have the staff or resources to be able to offer what care does. Care has regular information events which we went to when we were considering moving, where there was lots of different departments giving talks - I'd recommend going to one as they will speak to you afterwards. Lilly is a patient liaison manager there so I'm sure she'll be able to give you further info. X


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    Offline Eilidh15

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    St Mary's Manchester part 4
    « Reply #11 on: 21/12/16, 12:19 »
    Hi Nuttynat,

    Thank you for your reply. I'm so glad I'm not the only one who is 'complicated' to say the least. It's such a stressful journey and added pressure on top of it all doesn't help in the slightest. I was actually recommended to transfer over to Care by my mothers GP as she had been at Saint Mary's and had 1 unsuccessful cycle and again they pushed egg donation on to her as they said she only had a 4% chance of conceiving with her own eggs. Fast forward 2 more failed cycles and shes now 14 weeks pregnant with twins all thanks to Care. My DR at Saint Mary's basically said to me and my partner that we can go ahead with my own eggs again but due to all my problems and my last failed cycle they think I only have a 10% chance of a baby whereas if we use donated eggs I will have more like a 40% chance - the DR also told me that because I had the highest dosage of drug last time (0.25 down regs and 450 stims) that our next cycle will be same as they already gave me the highest dosage possible - I then found out from my mums GP that at care her dosage was like 520 and that she only stimulated for 11 days or so. She also informed me (which we didn't know as Saint Mary's failed to tell us) that the longer you stimulate for the higher chances of your embryos having a chromosome abnormality and I stimulated for 17 days!

    I feel that we would really benefit from moving to Care, I've been to my GP and she's putting everything in the works to transfer over to Care. My only concern is how long it's going to take to transfer over, as I'm worried that the longer I leave it the worse my endo is going to get as I have it on my bowel therefore it can't be removed.

    I fully agree with you that I am not on here to bad mouth Saint Mary's at all - We just want the best treatment because in the end we want our baby.

    What's Care like then? I've heard your like part of the Care family?

    Thank you Nuttynat. xx


    Offline nuttynat1982

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    St Mary's Manchester part 4
    « Reply #12 on: 21/12/16, 12:33 »
    Care is lovely, everyone is smiling and happy and have time for you, most importantly it is calm and relaxed. I've not felt any stress either cycle. It didn't  t take long at all to transfer over - if you speak to Julie Maj at care she will get the ball moving at their end and chase  things up for you. , think we started to process Nov last year and was all sorted by xmas and I cycled in Feb/march You will need a copy of your ivf file from st Marys though and this is what takes the time to get through otherwise care will need to repeat all the tests again, it's also good so they can see what treatment you were given last time. This cycle as i'm on a FET I've had 12mg of estrodol, an estrogen patch, asprin, prednisterone, clexane, intralipids, calcichew and obviously cyclogest, had the 12 mg of Estradol at st Marys but they used to build it up gradually over the space of a week plus they made me d/r, there's been no d/r at care as they said there was no need for FET and I started on the maximum dose straight away - lining only ever got to 5.8mm at st Marys and today measured 9mm. I can also fully recommend acupuncture as had it the last 2 cycles and found it relaxed me and helped

    Offline Eilidh15

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    St Mary's Manchester part 4
    « Reply #13 on: 21/12/16, 12:55 »
    My GP said yesterday that she will get the ball rolling and told me to ring care in the new year to see if they have received all our information. I know my GP will have to contact the CCG to get my funding transferred over as we have 3 NHS funding although we've already used one shot. When we started with Saint Mary's we asked about asprin etc and they told me that was something they did in the US not over here!!! It's becoming apparent that Saint Mary's are held back on things they are allowed to do and follow through with, I've also found that the waiting times are pretty shocking if I'm totally honest. We had our failed cycle in July, they told me to ring back in September, did that they told me they sent me a letter for an appointment in October, received that letter to then find out our appointment had been changed to November 28Th. Only when I rang up and complained did I actually get somewhere, they brought forward my appointment by a week - not that it made a difference. That's when we received the news that we might need a donor eggs, at the minute I'm not wanting to give up and go straight to donor eggs.

    I just hope the transfer over to Care happens quicker than the waits did between appointments at Saint Mary's.
    We have an appointment with the DR and the Councillor at Saint Mary's on Jan 10Th, shall I request my notes then? Will I still have to pay for my notes even though we have NHS funding?

    Sorry I'm bombarding you with all these questions but I don't have anyone else to ask as the don't understand.

    Thanks

    Offline nuttynat1982

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    St Mary's Manchester part 4
    « Reply #14 on: 21/12/16, 13:22 »
    I'm NHS funded too, you don't get the notes from the clinic, you have to request them formally from the medical legal department - they will send you forms out then ask you to pay. I'm also from Tameside so dealt with Tameside and Glossop CCG (Droylsden/Audenshaw). http://www.cmft.nhs.uk/medico-legal-forms

    Here is the link to forms and also gives you the contact number to speak to them. X

    /links

    Offline Eilidh15

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    « Reply #15 on: 21/12/16, 13:49 »
    Oh gosh we didn't even get told by my GP that we would need to request our own notes and pay for them...how much do you have to pay?

    Yeah Tameside and Glossop CCG is a nightmare, they declined us so many times based on my age, I hope it's not a problem transferring over.

    Thanks for all your help!

    So where are you up to now then? And what are you hoping for in the future?

    Offline nuttynat1982

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    St Mary's Manchester part 4
    « Reply #16 on: 21/12/16, 14:08 »
    It's 50 to get your notes. I've had ET today so will know the result on 31st. I've got 1 funded fresh cycle left and any frozen embryos from it x

    Offline Eilidh15

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    « Reply #17 on: 21/12/16, 14:45 »
    That's ok, not that expensive then, thanks for letting me know. I clicked on that link but which sublink do i click on? I'm a little confused.

    Happy egg transfer! did you transfer one or two embies? and what day transfer? 2,3 or 5? hope all goes well and you get your positive!! x

    Offline nuttynat1982

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    St Mary's Manchester part 4
    « Reply #18 on: 21/12/16, 15:39 »
    You need to complete the adult one - first one on the list! I had one lovely day 6 hatching blast transferred (they left it until day 6 to see if it developed into a blast before freezing) it is absolutely Perfect and 100% survived the thaw

    Offline Eilidh15

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    St Mary's Manchester part 4
    « Reply #19 on: 21/12/16, 17:02 »
    Thank you for helping me :)

    I'm glad you got a good blast. Because I only have one ovary and taking into account all my problems I only actually got 2 eggs, both fertilised and split to cell stage 4 and we had a day 2 transfer. Pretty upsetting considering we had 2 little soldiers :(

    I hope you get what you deserve. How many cycles have you had?