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Top IVF frustrations

Genea blog top IVF frustrationsI’ve been an IVF nurse for almost six years now and I can tell you I have seen it all. I’ve seen the tears, the anger, the frustration but I’ve also seen pure joy, excitement, great love and, of course, happy ever afters.
As you can imagine, I’ve had my fair share of feedback. Some completely justified and some, of course, born from a place of pure anxiety and anger. As a nurse, being on the receiving end of this feedback can sometimes sting quite harshly. But as an IVF nurse you have to constantly remember to try to walk in another person’s shoes and I can tell you those shoes aren’t always Louboutins because the journey can be really, really hard and IVF nurses know that better than anyone. 

So what I’d like to share with you is what I think are the top 5 frustrations as told to me by my patients and how I suggest you might deal with them:

Frustration No 1:

"I just need to know when my procedure will be so I can plan my life - why can’t anyone tell me?"

The thing about bodies is that no two are alike. I always explain by saying “is your nose exactly the same as anybody elses?” No. So your ovaries, follicles and response to medication isn’t going to be the same either. Of course we can make some general rules of thumb. You are probably going to have your egg collection about 12-14 days after you start the FSH or you’re probably going to have your embryo transfer on a frozen cycle around day 19 of a natural 28 day cycle.

Now, if you subscribe to Murphy’s Law,  the thing I can say is that if you have a wedding, christening, weekend away or party planned, something that you are really looking forward to it’s pretty much guaranteed that it will fall on that very day. Annoying I know!

Frustration No 2:

“Why do people bring their children to  the waiting room - don’t they know it upsets me?”

This is one of the trickiest pieces of feedback  we ever receive. My patients have said it so many times “I’m feeling so sad because my cycle was unsuccessful and there is a happy family sitting next to me in the waiting room cooing at their beautiful baby and it’s tearing me up”.

And the perspectives are so many and varied. I’ve had patients tell me they feel super guilty bringing their children but thought that it might give other patients hope that IVF will work for them. I’ve had patients feeling the weight of some serious death stares when they are in fact egg donors and they are doing a wonderful thing for their sister, cousin or friend.  And what we call, “Secondary infertility” is actually quite common, so the mum sitting in the waiting room with a child might be just as confused and distressed about this whole process as you are because she’s facing it for the first time after falling pregnant naturally.

I’ve had patients say that they don’t think it’s fair when Dad is in the room when they could take the toddler downstairs but sometimes we find that his partner is so anxious that she just needs him in the room for that extra bit of comfort and support when she’s having her blood test.

Of course there are definitely times when people probably just don’t really think about the impact of their kids on the poor person sitting next to them or when their munchkin is sitting up on the stools happily munching away on a scotch finger biscuit in full view. But I think for the most part people’s hearts are generally in the right place and every single person in the room has been through some tough times. All types of people do IVF; Mums, Dads, single people, same sex couples, people with children with disabilities, people with genetic illnesses themselves, even the nurse who is taking your blood that day.

We try to recommend patients don’t bring their children into the clinic but just know that our Nurses understand the impact of these situations. We get it, so if you need to be away from it cause it’s really hard to cope with on that particular day just let us know and we will happily make an arrangement that might help ease the burden.

Frustration 3:

“I get really annoyed playing phone tag with the nurse all day”

We know it’s frustrating when you can’t catch us on the phone so I thought I’d give you a bit of insight into what our nurses are up to during the day.

A usual day in the life of a Genea Nurse Coordinator:

From 7am
Morning clinic - during the clinic, the nurses seeing patients are also following up on embryo early checks and PGD biopsy results and getting in touch with your Specialist to discuss next steps for patients and then organise procedures for that same morning if need be.

From 10am
Next we always call the previous day’s patients with their fertilisation results and check they are okay after embryo transfers and also to give further instructions.

Around mid morning to lunch time we start receiving results and interpreting the patient's next steps. It can take a while for all the results to come in, especially those from outside of the Kent St clinic. Our absolutely favourite part of the day is calling to give the positive results.

A really important part of our day is meeting new couples coming in for a chat about their treatment.

From 1pm
Next we need to talk to your Fertility Specialists about the results and, as every patient is an individual, this can take a bit of time. We call each patient to speak with them about their results, clarify any questions they might have and set up for forthcoming procedures.

Once all of these other duties are performed it’s time to call all of our patients once all results are reviewed with your Doctor.

Attend to any questions, emails and call patients to give instructions for triggers and embryo transfers.

That’s a normal busy day and we know that many of you have similarly packed schedules. 

So you might ask, what’s the best way to connect with my nurse when I need to?

One recommendation is to let her know a convenient time to call you. It can be recorded in your file for everyone involved in your treatment to note.

Email is okay and we can also SMS if that works better for you.

Give a little extra time if you need something to be answered by your Fertility Specialist as  sometimes it’s a little harder to get hold of them later in the day because they are with patients.

If you noticed during the scan in the morning that you had one or more mature follicles you may be taking your trigger injection that evening for your egg collection so the nurses are organising the procedure in the day surgery and need to get the correct time to tell you to take your trigger before they call.

Be sure to let your nurse know what works best for you, individual needs are many and varied so your team will be keen to make sure they are catering for yours.

Frustration 4:

I always seem to talk to a different nurse and need to explain my situation over and over again

Having a close relationship with your nurse is a mutually beneficial arrangement. I know this because I have been part of and have witnessed some wonderfully close relationships between patients and nurses. Sometimes people just click!

One of my best and worst experiences was with an amazing patient of mine who happened to live in the same suburb as me. She had many cycles and many devastating miscarriages, it was always so mixed delivering that positive pregnancy news - willing this one to work and then seeing her in Woolies and she would shake her  head and we would both give each other a squeeze and not one other person at the checkout would ever guess that we were standing in a secret sad universe. This experience does affect my colleagues and me.
We do experience the highs and lows of IVF. Now I’m not suggesting that we know all of the intricate details of the pain and suffering that some of our patients go through  (although many of my colleagues have undertaken IVF themselves) but we are acutely aware of the highs and lows and we really do care about you and what you are experiencing.

Our nurses are split into teams so they understand how their particular Fertility Specialist’s protocols flow and how to communicate that to a patient in a way that  reassures them and gives them knowledge about their bodies. Sometimes it might seem that you haven’t spoken to “your nurse” for a while but we are constantly handing over, updating and documenting all of the minute details of our patient’s experiences and questions so we have the full picture.

It’s a really good idea to ask that you deal with your favourite nurse and have a backup too as we need some days off sometimes. If you have to speak to another team nurse they will have good knowledge about your Fertility Specialist and their decision making process, it just might take them a moment to get up to date with your individual journey.

Frustration No 5:  

"Sometimes I can’t get enough information about how my cycle is progressing."

When I think about the sheer volume of information that we give our patients I wonder some times if it matches what the patients want to know? Hormone levels, embryo development, PGD testing , BhCG levels in early pregnancy etc.

To figure out how much to tell, I have this metaphor that I apply to myself - I don’t need to know the intricacies of aeronautical engineering everytime I get on a plane I just want it to run safely and reasonably on time. But at the other end of the spectrum if it doesn’t run on time I want to know why and how long it will be delayed so I can go and buy a magazine and a coffee if it’s going to be a long wait.

This is the fertility nurse dilemma regarding communicating the right amount of information to you about your cycle. As part of my duties, I perform follicle scanning in the morning clinic and I’ve had patients wanting to know the absolute minutest details regarding their follicle sizes, what we should expect at this stage, do I think they will be triggered soon, is the endometrium ok? The same goes for the hormone levels and cycle monitoring.

Alas, I have also had patients who say; “I don't want to know anything, I find it all too confronting,  I just want to get out of here and get to work and if you have to leave me a message with my next steps that’s fine”.

So I guess it’s up to the nurses to try and work out what best suits the patient by listening to them and watching their reactions if we can. If you feel a reluctance by your nurse to commit to a definitive answer sometimes it’s because they honestly may not have one. They can make assumptions based on their training and witnessing thousands of cycles regarding what the general rule of thumb is and sometimes they’re happy to discuss these situations. The problem is that what sometimes occurs is a patient will say to me “but the nurse told me this and something else happened”. It comes back to that adage - “everybody is different”. I know that can be so frustrating and maybe even feel like a brush off but it’s absolutely true.

If your nurse thinks it is out of her expertise she will happily run it by your specialist but she will usually have an idea about most of your questions. My advice would be; definitely ask any question that will give you as much information you need for your own peace of mind, that’s what you nurse coordinator is for and it’s a part of their job they enjoy.

Sometimes be prepared that you won’t get your unequivocal answer straight away, if at all, it’s the nature of the beast and all of the intricacies and variables that go into creating a human being naturally are equally true for fertility treatment.

If you’re concerned that the information isn’t quite right or what you expected, feel free ask to speak to someone different. It might be just that a different nurse communicates it in a way that suits the way you learn.

So that’s my Top 5 pieces of feedback I receive from patients and my suggestions to help with them. Of course everyone is an individual so there might be a million more. 

Disclaimer: Please note that this is a Genea Group blog and as such information may not be relevant for all clinics. We advise that you consult clinics directly for further information.