IVF clinic - is this normal?!

(16 Posts)
sandytoes84 Wed 03-Oct-18 20:41:10

I’m about to start ivf and feel completely in the dark - it’s my first round so I have no idea what to expect, but I’m feeling frustrated with my clinic and here’s why!:

We had lots of appointments that could have been a phone call, followed by a group session that was very general - so far so normal. We then went in to meet a nurse and sign all paperwork, which included expected period dates and when we were unavailable for treatment (I’m travelling long haul for work next month and then husband is away for some training so we expected it wouldn’t start til next year). The dr was on holiday and the nurse told us he’d write in a couple of weeks.

Patiently waited for a little over a month and was about to call when letter came. Except it was just a copy of letter to gp and I didn’t understand any of the terminology or have a clue why some meds had been prescribed to me. They also had the wrong name in one paragraph and expected period date was 5 days later than it should’ve been, so I did wonder if the letter was an error.

I called every day over 3 days before I got a call back, the nurse confirmed treatment was for me and asked if I’d heard about my meds being delivered (I hadn’t) she asked me about some other letter which I hadn’t had and seemed annoyed that she had to investigate.

When I told her about period start date she acted like it was my fault (honestly, I wish I could control my periods!) and then I mentioned that I’d be flying a few days after expected egg transfer, would that be ok? She said it was up to me but they don’t recommend it. I asked if she thought I should be doing it now and I kind of got told off that ‘it’s nhs - you can’t pick and choose dates!’ I felt really badly like I’m using the nhs and she is assuming I’m swanning off an expensive tropical holiday when it is a business trip.

Anyway, meds have arrived today and I’m so overwhelmed - I’m watching you tube videos about injections and I just wondered - is this normal? To not see a dr and to be so left to your own devices?

Sorry for long message - I’m emotional or confused - or both! I’ve waited 6 years for this and dont want to sound ungrateful, I’m just not sure if I should stand up for myself or just take it and get on with it.

OP’s posts: |
Ohluckyme Wed 03-Oct-18 21:09:05

Oh gosh I’m so sorry to hear this. I’ve just been referred for ivf so I can’t help you but the consultant said I would have a training session with a nurse on how to do the injections and that we would get a dvd explaining everything. It really sounds like you’ve been left in the dark. Can you go to the clinic tomorrow and explain you situation? If you go in person you’re harder to ignore than a phone call!

sandytoes84 Wed 03-Oct-18 21:17:12

I’m just not sure if it’s normal across the board or varies clinic to clinic. I expected to take a fair amount of autonomy with the meds but it seems like they might have forgotten to give me some info - except I have no idea because I’m not sure what I should have had!

The clinic is quite a way away and I know they’re busy so I don’t want to keep ringing. I feel like I’ve already annoyed them!

Thank you for sharing the experience you’ve had so far - it’s good to hear so I can have some idea of what maybe should be happening! I hope all goes well worth your referral and you’re on the journey soon!

OP’s posts: |
AliceScarlett Wed 03-Oct-18 21:18:49

Group? It all sounds weird to me :/

Ohluckyme Wed 03-Oct-18 21:25:58

AliceScarlett I think there might be a group information evening with mine too but OP has absolutely not been given the information she needs about administering meds which I think is a bit dangerous!

OP call them first thing and explain you don’t know what your doing as no one has told you. They’re getting paid to do their job so don’t feel bad about bothering them.

physicskate Wed 03-Oct-18 21:49:20

It was pretty up to me with meds. Don't expect to be told anything - they do this a million times and forget it's new to the patients. Ask questions - be your own advocate. Get to know what's going on.

And flying is fine - people do ivf abroad and fly back, right??

Ohluckyme Thu 04-Oct-18 08:55:47

@physicskate really, gosh I wouldn’t have the first clue about how to inject myself or correct dose of meds! I shall be asking lots of questions!

Hope your pregnacy is going well xx


Si1ver Thu 04-Oct-18 10:34:28

Asking loads of questions is fine, but also help yourself out and do some research. Are you using pen injectors or mixing vials yourself?

The pens are easy - you twist a dial to the right setting then stick it in your stomach and depress the button, hold and remove. There are loads of videos on YouTube you can watch.

If you're self mixing then call your GPs and ask for an injection course with a nurse. They'll show you what to do. This is particularly useful if your clinic is far away.

Having said all of that, the mistakes in your paperwork and the nurses attitude don't sound great. That's got to have put your back up a bit.

Finally I had my IVF abroad and flew home the same day as my transfer. Don't fret about your work trip, just try and take it as easy as possible if you can. Good luck.

sandytoes84 Thu 04-Oct-18 17:10:22

Thanks all for taking the time to reply. Yes, self mixing - I’ve learnt a lot from you tube!

Great idea about asking local nurse, thank you!

It’s good to know I should be my own advocate - I didn’t want to be bratty but also wasn’t sure when to stand up for myself or demand more info.

Thanks again all for taking the time to reply, it has really put my mind at ease and good luck to all of you in the same boat!

OP’s posts: |
Fika Fri 05-Oct-18 05:07:35

My clinic didnt tell me anything about how to inject or event the meds themselves. I just got a huge box of meds fed exed to me and a list of directions on a piece of paper from my clinic and was told to you tube. The most confusing part was that some of the directions from my clinic were brand named meds and some sent to me had generic names so was scared on what I was mixing and injecting. I did figure it out via youtube but I had to watch each video like a million times. It is scary at first but the injections are pretty easy after you do it a few times. I think my clinic just assumes I will adjust my life schedule around the IVF schedule, they have never asked me if the scheduling was okay they just tell me what it is. They are right I do just adjust and sometimes with work it is not easy but IVF is my main focus right now. My nurses and doctor are really nice but I def get the vibe that I need to do just what they say and no questions..but recently I have been asking more questions.

Fika Fri 05-Oct-18 05:13:02

flying after transfer seems fine however I do wonder about retreival
it is kind of like a little surgery..the concern may be bleeding or clots...not for sure

sandytoes84 Fri 05-Oct-18 12:28:59

Thanks Fika, it’s good to know it’s fairly normal. I’ve also been googling brand names etc! It seems like the dose I’m on is really high and I don’t know why - I don’t even know what test results etc indicate, but I am now armed with questions for when I go in for baseline scan!

That was my main concern with flying, but I think if I take sensible steps to look after myself and move around on the plane the risk can’t be higher than a lot of flyers.

I hope your treatment is going well, best of luck!

OP’s posts: |
physicskate Fri 05-Oct-18 16:38:15

You could also read up on what your results mean... honestly you do need to become a lay expert.

It starts with the egg and taking charge of your fertility are recommended background reading...

sandytoes84 Fri 05-Oct-18 18:46:56

I’ve just bought it starts with the egg on your recommendation, so thank you smile

I guess I didn’t realise to what extent I would need to become an expert. No one is ever explained test results to me - in fact I only found them out when I received a copy of the letter to my go, so I’m now knee deep in amh research and preparing my questions for the clinic about why they’ve chosen the dosage etc. I haven’t even met the dr so I’ll be very prepared with my list when I go in for baseline scan!

Thanks all, I can’t tell you how much I appreciate the advice. I’ve found out more from you all than the clinic!

OP’s posts: |
Ohluckyme Fri 05-Oct-18 19:59:08

Great advice for me too, I’ve just purchased the same book. Thanks everyone 👍

Willow4987 Tue 09-Oct-18 00:14:51

Hi OP, to be honest this doesn’t sound right. The clinic I used made sure we were shown exactly how to administer the medication, in what order, how to mix the drugs and made us practice injecting. Maybe call again and ask for more support?

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