Pgd journey starting

[Tinkerbell88]

Could people share their pgd experiences please.

We're in the process if a referral and I want to know what to expect time scale, appointments etc x

[Hopeful10]

We're in the same position as you Tinkerbell. Sorry that we can't help with your questions. Would value the same information as you. Thought it might help to know you are not the only ones out there in this position.

[CharB]

Hi Hopeful and Tinkerbell,

My hubby and I are having PGD. I started the treatment on Christmas Day and my eggs were collected on Monday.

There were 7 eggs. 1 was not mature enough to be fertilised and of the 6 remaining 4 have fertilised. We are being updated every day. Today we were told that all 4 are developing as they should be, but we have to take it a day at a time as it could all change. The embryos need to make it to the blastocyst stage on day 5 to be able to be biopsied for the screening. It's going to be a long few days!

I think it took about 4 months from our first appointment at Nottingham to being ready to start. Then obviously we had to wait until the crucial part of my cycle to begin.

Fire away and I will do my best to answer your questions.

Kind regards

Charlotte

[Hopeful10]

Hi Charlotte - Sorry for the late reply. I didn't see your message until today. It's great to hear from someone who's started treatment. Well done one your egg collection. I'm hoping your embryos continued to develop and that the biopsy could go ahead. Where are you up to with things now? We're also going to be at Care Nottingham too. I appreciate you saying I can ask questions. I'm sure I'll come back to you later but right now I think I just need our initial appointment which is next month to feel I have more information about what is likely to happen. I'm sure I'll have loads of questions then. Right now I'm struggling to be patient and just feel like everything takes so long. It's good to have an idea of how long between first appointment and treatment starting and I know it's not really but four months seems like such a long time. It's not like we need everything to happen instantly but I'm feeling like i want to get on with things because of my age (about to turn 34) and feeling like the process could be long and complicated as it is.

Tinkerbell - I hope that you've heard more about your referral and hopefully have had or have an initial appointment scheduled.

[CharB]

Hopeful, I can totally relate to how you feel.

It's taken 2 and a half years from our first referral when we thought something was wrong to get to where we are now. Its been a lot of messing about and we had to put a complaint at derby before we were referred to care. I'm 32 and I definitely feel like time is ticking away. I've never known career wise what I've wanted to do. All I've ever wanted is a family. Its so frustrating.

2 embryos got to the blastocyst stage and we are awaiting the results. Our appointment is on 5th March which has meant a total of 5 weeks wait because there were no appointments sooner. The results take 2-3 weeks so it's very frustrating and feels very unfair. The waiting around is horrible, it's been 2 weeks so far. I'm told we won't get told anything until the appointment, but I'm going to call on Friday and see if I can find anything out. Probably pushing my luck.

I can appreciate this is a sensitive subject and you don't have to ask questions but just know I'm here to listen too ☺

[Hopeful10]

Goodness me Charlotte! 2 1/2 years is a rediculous amount of time! Is this your first cycle or have you had treatment elsewhere first. I understand what you mean about this being a sensitive subject though so if you don't want to respond to questions or want to continue the conversation through private messages that's fine. It's good that you've got two blastocysts but waiting for the results must be so difficult. You need to find some things to do to take your mind off it a bit and make the time pass quicker. I appreciate you support and it's great to know we're not alone in this situation. I feel it's quite hard being in limbo between not being in s position to make babies the old fashioned way yet not having started the OGD process yet but knowing this would be the path we would take for a long time.

[CharB]

Yes it's ridiculous. This is our first cycle, it's been s long time coming. We were originally referred to derby and the tests we both had before our first appointment confirmed that my husband has a low sperm count. This was a shock as I thought that the problem would lie with me. I had a major operation 13.5 years ago and was told there was a 25% chance of infertility.

As we are nhs funded I think this has slowed things down a lot. There are criteria that we had to meet and for me my weight was a problem. I am petite and skinny so was a little underweight. In late 2016 we returned to derby and I weighed enough. We were told we would be ready to start in March 17. March came and we were both excited but pgd hadn't been discussed despite my condition being discussed at every appointment. Not knowing the process we assumed we would be offered it at the appropriate point in the treatment. Then we asked about it and were told we would have to be referred to Nottingham. This was a nightmare, we had to wait for a referral to a genetic councillor to confirm my condition and be referred to Nottingham. This was a complete waste of time. Having had my diagnosis at 15 I know my condition very well and didn't not need any information. It was as though our consultant didn't believe me. We were shocked and the genetic councillor was shocked as we thought we were there to discuss the pgd and she thought were there because I wanted info about my condition. It was all very embarrassing. We also had an appointment for "pre-pregnancy counselling" this was another joke and waste of time. A 25min trip to derby only 2 be there for 10 mins. I was expecting it to be an emotional appointment and even though i felt i didnt need counselling i tried to be open minded. But turned out it wasnt even counselling. Turned out all it was was to discuss possible issues that could arise in pregnancy because of the surgery I had. This was things I already knew. We weren't impressed. These appointments lead to us putting a complaint in about our consultant. We were then referred to Nottingham and had our first appointments in August 17. Then we had to wait for genesis genetics to get in touch and they sent us cheek swab kits as they needed dna to start making our pgd test.

We were finally ready to start in November but had to wait until my Dec cycle as the theatre's were closed for 2 weeks over Christmas so they couldn't do an egg collection during that time. I started the treatment on Christmas day! Tablets first to suppress my own hormones and then injections to stimulate my ovaries.

It's hard now waiting and nothing happening as I just want to get a move on. Its hard to be patient with everything we've been through. I'm having good days and bad days. I suspect we will need a another treatment cycle as we were told we would need at least 3 embryos at the blastocyst stage. There have been lots of people pregnant at work which hasn't made life easy, as much as I'm really pleased for them. Being surrounded with the constant baby this baby that all the time has been hard. Though I do have a lot of support at work too.

Got to try and stay strong and remember my philosophy - everything happens for a reason.

[Hopeful10]

What a long journey you have had already Charlotte! Because we have yet to get started, it makes me nervous that we may be facing long delays. Luckily, we think we've at least been teetered to the right place so we've got through several of the steps already. We're also NHS funded though so I hope this doesn't slow things down too much. Because we've not had any testing yet it's playing in my mind that we might have fertility issues that we don't yet know about. My age is also on my mind so I'm keen to plan ahead.

I have thought of one question - with NHS funded treatment, what happens about the cost of medication etc? Do we have to pay for this and how much has it been? How did you cope with all of the medications? The thought of the treatment doesn't exactly thrill me but I'm sure I'll manage fine and it doesn't seem like that big a thing now in all there is to come.

I do know what you mean about lots of people being pregnant or having children. We're pretty much the last of all of our friends. I'm going to a baby shower on Saturday for my best friend who is having her third. At her last baby shower I kid you not that pretty much everyone there was pregnant. I felt like the odd one out but we were planning our wedding so that was to come first. I feel like it's not until recently that we've get ready to think about children. We've known that we wanted children for a long time but I guess we just put it to one side because we knew what we would face to have any. I guess it's only now that I'm letting myself think about seriously about us trying to have a baby.

I tried to send you a PM but couldn't figure out how! I'm rubbish at this online stuff!

[CharB]

Hi Hopeful,

Once we started at Care things moved much quicker.

The medication is all covered in the funding unless for some reason you need anything extra. Then you'll be given a prescription and it will be the normal cost.

Everyone has their own unique protocol to follow, there is a short protocol and a long protocol and I think it depends on height, weight, circumstances etc as to which you are on. Everyone is different so I can only tell you my own experience. I was on the short protocol an started on day 18 of my December cycle with a course of norethisterone tablets to suppress my own hormones. These didn't not affect me at all, I guess because there were no hormones raging lol. Once the course is finished you have to wait a few days for a bleed and on the 2nd day you start the injections. You get shown how to do it before hand and practice. I wasn't sure I would be able to do it as I used to be terrified of needles, but some how I managed fine. Just don't give yourself time to think about it. I started off on Gonal F once a day in evenings and then after about 5 days also had to inject Cetrotide. Tiredness was the main thing that got me. I also found it hard to keep my mood under control at times, especially during the last couple of days. I wanted to cry all the time but managed to hold it together until about 3 days before the egg collection and then I burst in to tears at work for no reason whatsoever. Luckily it was late in the date and I put it down to tiredness. Very embarrassing though. Like I say everyone is different so hopefully you will be fine.

It all gets a bit much sometimes doesn't it. People keeping saying I'm still young but all I can think is that most people I know have more than one child and the clock is ticking! We have always wanted children but it's only since 3.5 years ago that we have been in a position to as we didn't have our own place before then.

[CharB]

Also just to add, when you are are on the injections you will have regular scans so that they can make sure your ovaries are reacting correctly to the hormones. They may tweek the dosage and it's also so they can gauge when the eggs are ready to collect. I had 4 scans in the second week of the injections, every other day. On top of the tiredness from the drugs it was very wearing but also exciting to see them developing. I was amazed at how quickly the grew. They didn't tweek my dosage at all. I haven't talked about the egg collection as I didn't know if you'd want to know about that yet. But happy to tell you about it if you want.

I've had a voice mail from care today saying they have an update for me so I'm assuming the results are in. I'm rather scared. I work til 6pm so couldn't answer. Will call in the morning.

[Hopeful10]

I'm really hoping the update is good news for you Charlotte It's frustrating to miss a call and not be able to call back due to work but at least it will have been keeping you and your mind busy. My fingers will be crossed for you in the morning.

Thanks for sharing so much from your PGD experience. It's good to get a real life account as the brochures only tell you so much. I'm not worried about hearing about the process including egg collection. Think I need to know what to expect. I'm wondering how we'll manage the practicalities of lots of trips to clinic for scans as we're about 3 hours away from the clinic. We'll have to find a way to manage it. Thanks for the helpful information you provided about medication and prescriptions. I'm not sure I'll be able to inject myself but know my husband will be able to do it for me. I'm not looking forward to crazy hormone levels and the effect on my emotions! Right now I've just had my first week in many years without the pill. I'm trying to give my body some time off this to see what my natural cycle is. It's been so long that I honestly don't know. It's weird not to be taking the pill each day!

[CharB]

Morning Hopeful,

I'm sure you will be fine with the injections. I was worried that I wouldn't be able to do it too but but when I was handed the syringe, the nurse said as soon as the needle touches your skin push it in or it will hurt. So I didn't even think about it as I knew i wouldn't do it otherwise. I surprised myself to be honest.

The egg collection is done under sedation which is great because although it's not a full anaesthetic it feels like one and you don't know a thing about it. A probe is put into the uterus like when you have a scan as it's ultrasound guided, but the probe has a small needle on the end. The easiest way to get to the ovaries without causing damage to the fallopian tubes is to perforated the uterus and then the needle goes diagonally to each ovary. The eggs are in fluid in the follicles and are sucked through the needle. The procedure takes about 15 - 20 mins and i was back on the ward within 25-30 mins. Hubby will do his bit while you are in theatre. I was anticipating there to be more pain and bleeding than there was. I barely bled at all and pain wise pretty much none. I had the day of the egg collection and the following day off work to recover from the sedation as it stays in your system for 48hrs.

I have been on the pill so I can't relate to that unfortunately.

The other thing I forgot to mention is that I didn notice that the tablets that suppress your hormones seemed to thin my blood a bit. But the pill may do that as well so perhaps you may not notice? It just meant my period was a bit longer and a bit heavier than normal.

It's great to know someone else in the same position and I'm glad that I've been useful ☺.

I will let you know what the results are later.

[CharB]

I have spoken to the embryology team, one embryo wasn't useable as the chromosomes hadn't developed properly. So 1 left now which is fine to be tested but they can't test at the moment as there wasn't enough material. Another treatment cycle it is. Apparently we shouldn't have been told that we wouldn't get an update as they always let people know as soon as they can because they don't want people waiting any longer than they have to.

[CharB]

Had another call this pm. Can't start the next cycle until after the appt on 5th march as they have to review the medication. So looking like the egg collection will be in April.

Bit deflated but it is what it is. Obviously not meant to get any further just yet

[Hopeful10]

Hi Charlotte,

I'm so pleased to hear you've got one to test. It's a bit annoying to have to go through another cycle straight away but that should mean you get a few to test together and then hopefully something to transfer back. Thank goodness you didn't have to wait until March for the news! How do you feel about another cycle? When will you be able to get started? Will you discuss this in your appointment in March?

I had to do some shopping today for my friend's baby shower. In the past I've looked at all of the cute little outfits and hoped that one day we would be getting these for our little one. This time I couldn't help but hope that this will be the case and I just want it to happen as soon as possible now. It's hard to explain but my emotions about this are a lot stronger now. I hope I'll cope ok with the shower. Will get to spend some time with my friend tomorrow ahead of this.

I appreciate all of the information and help. I'm hear to support you too. Even if I can't advise on the process yet, I'm very happy to listen and respond as best I can.

[CharB]

Hopeful, I'm so glad we have each other, you seen to feel the same as me. I want it to happen as soon as possible as well and I get frustrated with waiting.

I hopefully we can start quite quickly as my periods happen at the start of the month so I could start the tablets mid March. I guess it depends if they do decide to change anything and how long it takes to get the drugs to me. I have 10 days supply of the tablets left and was on them 12 days before so I need 2 more if it stays the same. Then I have 2 of the Cetrotide injections left but nothing else.

It is good to be slowly getting closer to achieving the goal. But I can't help but wonder what else is round the corner. Just need to take it as it comes. When is your appt?

[Hopeful10]

Charlotte,
Hopefully you can get started quite quickly after your appointment and there will be time to get any extra medication to you befor it's needed. It's good to have a review appointment to see if there is anything they can do to maximise the number and quality of eggs from your next cycle.

The waiting is so difficult but more bearable if I feel like I can actively do something to prepare. Even stopping the pill and go using on my diet at least feel like I'm doing something rather than just sitting waiting. That said I've had a couple of cheat days this week with valentines and my husband cooking a yummy curry from scratch. I'm back with it again though. I have been doing more exercise but definitely need to increase this. Off work this week so hoping this will help me to focus. It's not that I need to be pregnant now but I'm really worried that will be a number of problems along the way which will hold things up. I feel like I'm ready now. Appointment not until later in March. There's some info I'm happy to share with you but not on the message board but can't seem to find the private message function so maybe it's not an option.

Heading to my friend's today in time for her baby shower tomorrow so I'll check the message board at some point but may not have time to reply. Just so you know.

[CharB]

Yes I'm hoping that perhaps there's something they can do with the meds. I think it's all sunk in a bit more now so not feeling to bad about it at the moment and it gives me chance to get a few things sorted before the cycle.

Ive tried to work out how to pm.as well, I've added you as a friend but can't find a way of sending a pm. Are you on fb?

[CharB]

Been looking at settings etc, can see that there is a setting on the user control panel that stays users can contact you by email. Have you got yes selected on yours? This maybe why. Have you added me as a friend?

[Hopeful10]

Hi Charlotte,
Sorry for the lack of response over the last few days but I was away visiting my friend and at her baby shower. I've survived it though. It really confirmed that I feel ready for pregnancy and to have a baby. I just hope that this will be possible an hopefully quite soon.

How are you? Hopefully you can stay positive in preparation for another cycle. What are you hoping to get done ahead of your next cycle?

I had already added you as a friend. It always says I can be contacted by email. I can't find a way of sending a private message so maybe it isn't possible. I am on Facebook but don't post publicly. I do use the messenger to contact friends.

[CharB]

Hi Hopeful,

Glad you survived the baby shower. I knew you wouldn't reply sooner so don't worry.

I am ok, just got keep trying to be positive. Just wish we could get started again.

The condition I have means I have to be regularly monitored. I have endoscopies every other year and they are due this year. I have an appointment with my consultant on Tuesday, I see him privately as I have insurance so I'm hoping the endoscopies can be done as soon as possible. I was going to put them off because of the treatment but a little concerned something isn't right. I'm probably worrying about nothing but I don't want to take any chances.

When I go on your profile it says contact hopeful but if I click on it, it doesn't do anything. The help section mentions private messages but doesn't tell you how to do it. Some use! Perhaps admin haven't enabled it.

[Hopeful10]

Hi Charlotte,

You must do all you can to enaure your own health is ok. It would be no good letting yourself get unwell. It's not just about the treatment but all being well you need to make sure you'll be healthy throughout a pregnancy too. I hope your appointment goes ok and that you can get any tests and checks arranged ASAP. Hopefully you'll be given a clean bill of health which should ease any anxieties about something being wrong.

I get the same option but can't click through to contact you. I don't think the option is enabled.

[Hopeful10]

Hope your appointment goes well today Charlotte x

[CharB]

Appointment went ok, my consultant doesn't think there is anything to worry about. Going to have my endoscopies on 12th march.
I emailed the administrator and they tell me you can't PM. Glad to know im not stupid but i think its daft. I may have to give you my email address and then delete the message when you've seen it. x

[Hopeful10]

Good news about your appointment today. Hopefully after the endoscopes you will feel good knowing that you have a clean bill of health. It's good to know everything is ok with your body as part of this process. I'm waiting on the results from my smear test. It's just routine. I had one just after Christmas but not enough cells were taken which was a bit annoying.

Shame about not being able to send private messages on here but glad to know it's not just my rubbish tech skills! I'll turn on the option to be emailed if you send a message on here and try to check as quick as I can so that if you do send an email address you can delete it from here ASAP. Happy to share contact details with you just not with the whole internet. Off work this week but at home and supposed to be getting started with decorating but having a slow start.