Just sounding off, because no one else can really understand all this, so thank you for reading my posts these last few wks, you've all been so very kind
We have our follow up appt at the clinic after loosing our daughter over 8wks ago now, to discuss what happened and decide what are our options going forward.
I'm petrified, seriously scared that 1. they'll make us wait before starting again (even waiting 1 month will mess with my OH work, we won't have a choice financially, we'll have to delay it til probably the end of the year and I can't bare that😢), 2. they'll have found something else wrong, 3. That I'll break down in front of the specialist.
OH is convinced it will all be fine. I so hope he's right!
Xxx
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Parentsofangels
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Hi Parentsofangels. You’ve obviously had a rough time of it recently, and I was so sorry to read of the sad loss of your daughter. I just wanted to wish you both well with your forthcoming appointment with the clinic, and hope that you won’t have to wait too long for follow up treatment. I do have a list of questions you might like to look through before you go to the clinic, but it is too long to add here. There just may be one or two that you hadn’t thought of asking, so if you want, you can email me in confidence at dianearnold@infertilitynetworkuk.com and I will forward it to you. Diane
That would be fab thank you, I have a list, but memory isn't my strong point at the mo. Even though I'm feeling stronger every day it's still early days of loss again. Will email you now xx
Hi Diane, I did send an email to you, not sure why you didn't receive it. Anyway, appt didn't go well. No chance of starting for quite g significant time. They want me to have a hysterscopy, and he warned us waiting lists are long on nhs, but even a bit of a wait privately and 2K cost before icsi, so he suggested doing it through nhs. I'm so confused and saddened by it all. Why we have never been suggested to have this done this before is beyond me. Needless to say we were so taken a back with it that we barely able to ask any questions.
Hi. Thanks for the update and sorry I didn’t receive your email – for whatever reason. I realise this all seems like a setback for you having to wait for, and have a hysteroscopy. However, I feel it is always a good procedure to have done, as it does give the consultant a clear “map” of your womb, which is good to know before putting developing embryos back, and of course checks for any “blips” in the womb lining that could be a hindrance. Unfortunately, most clinicians don’t request this to be done, until there has been a failure, but although it is a bit of a delay, try and look at it as a positive thing, which may just come up with some answers. Take care. Diane
I know I have to have it done, and appreciate that it's not routine, but so very devastating to think that after nearly a decade of trying to get people to listen that something wasn't right, we've only just been told about this procedure, when they knew of all our previous losses. My hospital consultant thought we could get additional funding under extenuating circumstances, when they asked nhs said no because we've had our one go (fair enough), but also because of reoccurring miscarriage. In my opinion, would it have not been more beneficial to me and nhs funding committee to investigate my reoccurring miscarriages before authorising my funding? To me that's another baby who has died and wasted precious funds, all because they didn't check. I also have always had very heavy periods and painful to boot (used to be on medication for painful periods before we found out they aren't good for your ovaries), and now learn these are often reasons to refer women for a hysteroscopy. I can't change anything obviously, but this whole ordeal seems completely back to front and poorly managed. Imagine how it's going to feel if something turns out to be wrong and as the specialist fears contributed to the death of our child. Very unfair that we've been placed in this situation. Even if I'd had to pay, I would have been happy to save and do so whilst waiting all that time for nhs referal and funding if it meant doing everything in my power to prevent another child dying, and wasting that precious nhs funding we waited so patiently for
I'm so sorry to hear if your losses I can't imagine the impact it must have had on you. I hope that you can access counselling to help you both come to terms with your huge losses. This situation is hard enough to be anyway but to go through what you've gone through my heart breaks for you. Yes I agree the NHS can be shockingly bad Sometimes. You always seem to have to fight to get anywhere. You really have to know what you are entitled to medically otherwise you can get fobbed off by so called "experts". I've learnt this this the hard way in the beginning part of my journey I was far too trusting of the medical profession and I have felt let down too. For 2 and half years we were told it was unexplained and discharged coz we won't allowed funding to cut a long story short my scan indicated a sub mucus fibroid/polyp which consultant said had been there the whole time we were trying and I had an Hysteroscopy last month and an biopsy they couldn't find anything there. It had gone. I'm still bleeding and severe cramping between my periods experiencing painful heavy periods. You would not believe the kind of battle I have had with the hospital who told me I needed to see a gynae over it and then gave me the "run around" luckily an advisor last week spoke to my consultant who agreed to see my tomorrow. I'm hoping that he will get to the bottom of it all. I want to start trying again but I'm scared to with all this going on. If you have any questions at all on the hysteroscopy feel free to ask me 😊 I hope that you can get some answers for losses and can move forward,not that you'll ever completely get over it. Take care Hun wishing you the very best with everything 💗 x x x
Thank you for your reply, and apologies for the long delay getting back to you. I've been chasing over and over different doctors for nhs and private waiting list referals, but only once I left very unhappy messages did anyone take note and act. My referals have been sent and I'm awaiting details on this next week. I have in the mean time been told the nhs consultant (looked over our case after our daughter was born) wants me to have blood tests for clotting factors. Will be approx 6-7 months from her request til when we get the results due to waiting lists.....for a blood test!!!!!
Anyway, I will speak to the private clinic and seek their advice on these tests. It's absolutely cruel, I don't care if I have to pay for it, but I can't wait another 6 months before finding out if there is something else that killed my daughter. I don't want her to look down and see this shell of a person, I need answers and hope for the future.
How did your appt go? Xx
Blimey Hun wot an ordeal you both have been through and it's still not over 😔 I don't know what to say except I'm sorry to hear that you've had to chasing around so you can get your answers. Madness. As for 6 months for a blood test after what you've been through that's hideous. Can the GP or someone refer you to a private hospital that takes NHS patients? A lot of private hospitals take NHS patients and waiting lists will be so less long. Might be worth looking into. All you want is your answers and be able to move forward. 💗Sadly unless things are an emergency nothing is quick with the NHS.
Appointment was terrible Hun got discharged. The consultant was a complete pig 😡 my period issues are being caused by a fibroid which my ex consultant decided not to remove during my surgery I had in July. 😔 she was in a hurry and had family problems and was leaving to India that very day so no come back on her 😡😡😡 Consultant forced me to choose to have hormonal replacement treatment and not be able to get pregnant or suffer and I mean suffer these symptoms and can still try for a baby well guess wot I choose lol! That was that so I spoke to my GP who is horrified by how I have been treated by the hospital. The discharge he sent my GP did not mention my period problems, a cyst that was found on my ovary,or the fact I still have a fibroid in a different location to where scan indicated,or the fact he offered me hormonal treatment to ease the symptoms that are being caused by this fibroid. Anyway I got in touch with my GP who believed me and is fighting this. He is writing a letter to the consultant to say letter does not reflect the appointment I'm so glad he's on my side and helping me with this. I couldn't fight this alone. Sorry for the moan.
Do keep me posted and I hope things go well for you lots of love 💗 x x x
Don't ever worry about moaning to me, this shit is hard and we need to vent!!! I'm so sorry the appointment didn't go better, it's such a blow isn't it when you feel thrown out like that. I'm just sad. I miss my girl, and after 9yrs of testing and being told I was fine, just unlucky in the period game, to now be told there may be a prob and it might have caused all my babies losses, well it's hit me really hard. I know I couldn't have prevented it, but I wish I had known to fight for these new tests. Sad that we have to fight at all. Let me know how your gp gets on hun. My GP gp fab, but learning along with us about most of this crap 😢
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