An alternative guide to fertility coaching for IVF patients

Professor Alan Thornhill
Fertility Expert & Coach, Alan Thornhill, Fertility Expert & Coach

Category:
Emotions and Support, Lifestyle and Fertility

From this video you will find out:

What do you need to know before starting IVF treatment?
Where to look for credible information?
What do you need to consider and what to look for when choosing the right treatment and clinic for you?
How to plan financing and the cost of your IVF treatment?

An alternative guide to fertility coaching for IVF patients

During this event, Professor Alan Thornhill, Fertility Expert & Coach shared some useful tips you can use before you embark on your IVF journey, for example, how to choose the right clinic, what questions to ask or where to look for credible information.

There are lots of different definitions and viewpoints around fertility coaching. One of the terms to define ‘fertility coaching’ is ‘Supporting people on their journey to becoming parents. There are many styles of coaching and types of coaches because there’s not one size fits all. You can find all kinds of coaches that can help you with nutrition, emotional support, lifestyle, mindset, stress, natural methods, and so on. Alan Thornhill, in his talk, focused on 7 tips that will help you prepare for your IVF journey, what questions you need to ask and how to handle it all.

Top tip #1 – all you need to know about IVF

Many times, patients ask if they need to become an expert in this. The truth is that you do. You need to do a bit of homework before you do IVF because if you don’t, you’re going to lose a lot of understanding of what’s being put in front of you. You do need to know the basics, learn about the terms, how it’s done, what kind of tests are out there that might help you and so on. Be aware of the sales agenda on the website and expect that you’ll see 95% of the same or similar information out there. It’s simply because the basics of IVF are the same everywhere.

Top tip # 2 – ask the right questions

Many times patients are not sure how to ask proper questions, or simply say no or complain. You need to remember that you have rights, so you don’t have to say yes to everything offered to you. If anything is not clear or you’ve never heard about a particular drug or test, keep in mind, you can ask for details or simply say no if you’re not convinced. You’re the one signing the checks, if you’re not sure about things, ask for the details and explanation. Always make sure you will ask a clear question so that you can get a clear and precise answer. If you find that hard to articulate when you’re speaking to a doctor or your medical team, then write it down, put it in an email, and then you’ve got a record of it as well. You can also confirm this with somebody else, so you can be clear about what you want. Put it in writing, but be persistent, if you don’t get an answer straight away, ask again. If it’s difficult for you to ask the question or you can’t even think straight, perhaps it would be good to go with a friend or a family member, just so they can perhaps take notes, and ask the questions that you’re forgetting.

Lots of cycles don’t go quite the way you want them to, and if something seems off to you, keep in mind that you can make a complaint. There’s a complaints process, all clinics have required to have a complaints process, it’s best to try to resolve it amicably at first because that’s the best way to get the thing you want.

To summarize, be friendly and firm. If you don’t say anything and the clinic doesn’t notice it, they’re probably not going to say anything to you. Therefore, if you’re not happy with something, you do need to make that clear.

Top tip #3 – choosing the right treatment & clinic

The most important thing is to go to the right clinic for you. Don’t go for the best clinic with the highest success rates. It’s all about your particular case and needs. Make sure you do thorough research to make sure you’re having the best treatment and clinic for you. You need to find trusted resources or a scoring scheme, even the UK regulator has a scoring scheme. Always be cautious and look at the reviews and how many reviews are there. It’s got to have a lot of reviews, but the truth is there are not that many clinics with massive numbers of reviews, and it tends to be skewed towards extremely happy patients, and extremely unhappy patients. You also need to look at your personal needs and finances, consider having treatment in the UK, your home country or overseas, and be aware of different laws regarding IVF in different countries.

You also need to understand the results. There are lots of different ways of presenting results, for example, you can present results as the live birth cycle started, or you could say clinical pregnancy rate per embryo transfer. Although those things are related, and a clinic with a very high live birth per cycle started may also be one with a high clinical pregnancy rate per embryo transfer, they’re not the same thing. If you’re comparing clinics, you have to compare them correctly. That’s a really important thing.

It is good to get to know the clinic before you start your IVF treatment. You can visit clinics, usually, you can do free consultations and virtual consultations. It’s worth getting to know some of the staff and understanding what your journey might be if you go to that clinic before you start signing checks and going there.

It’s very easy to have a consultation just to have your hormones checked or for the male partner to have sperm checked, and then suddenly you’re a patient of this clinic, and you haven’t done all of this stuff in advance. I think you should do all of this stuff before you choose a clinic and not just fall into the funnel.

Tip #4 – seek good resources

It’s good to ask perhaps your friends and family who perhaps had some experience already and can share with you their own experience. Be aware that your needs can be quite different as well, so beyond that, choosing a clinic only focusing on friends and family is not the best thing to do. You should be doing thorough research as your fertility situation might be different. Just because your friend had a particular procedure, it doesn’t necessarily mean it’s right for you. It’s important to listen and make your own decisions.

One other place for information is bulletin boards, although be aware as those are not the best places to find facts. They are good as they create this community, you’ve got people you can speak with, but people are usually sharing their own experience and what worked for them or not, it’s their opinions, but that is not the reason you’re there, you went there to get a very clear indication of whether this is good for you or not.

Beware of bulletin boards, not that they’re bad, they’re fulfilling a great need and a function for people, but I don’t think they are necessary places to go and find facts.

Top tip #5 – be sceptical

There’s a lot of misinformation out there. When someone tells you something, and you just think that just doesn’t fit with anything you’ve ever heard before, it’s probably not true, or it might be worth asking a few more questions. First thing, sense check. Another thing is you ask a question to anybody in the medical profession particularly, and you’re met with silence, which means they just don’t want to answer you or ignore you. Silence could be over the email as well, this is not a good sign. When people don’t answer your question, it can mean they’ve got something to hide, or they don’t want to answer it or it just means they’re rubbish at customer service, so why would you spend your time?

If you do a virtual consult or you visit the clinic, look at the body language. When somebody’s not telling you the truth or is uncomfortable about what they’re saying to you, watch the body language, it’s really important, and that’s why sometimes an email is not enough.

If you’re not feeling the trust, if your gut is saying there’s something wrong here, you should probably walk away because if it doesn’t work out and you’ve got to be prepared for it failing, and you think at least everybody was trustworthy, and they looked after me. However, if you’re thinking, I didn’t trust them from the start, and I failed, that is not a good place to be.

Top tip #6 – financing & understanding costs

You need to have a plan for more than 1 cycle. If you are thinking it’s going to work on the first go, for some of you it will, but it might not, and you’ll be in for a shock, and that’s not a good place to be. It might be good to talk to a financial planner and advisor because if this is going to end up being quite a lot of money, you probably want to factor this into your financial planning. You do need to get a costly treatment plan from the clinics, and in the UK, it’s a requirement. You’ve got to consider the difference between basic IVF and that there might be some extra things like add-ons which might be beneficial in your case. They shouldn’t just be part of everybody’s cycle every time, but you should ask when that’s offered to you and why it’s been offered.

Another thing that patients aren’t told about is that you can buy their medications from the pharmacy or at least attempt to. It’s quite clear on some clinic websites that they charge a markup for the benefit of you being able to pick up the drugs at the clinic, but if you’re prepared to pick them up from the pharmacy, you’ll usually get them cheaper. That’s an instant way to save money.

Top tip #7 – keep your relationship on track

The first thing to do before you even embark on the IVF journey is to be aligned on what you want. You’re going to get through a lot of challenging times on this journey and if you’re not aligned on what you want, it’s going to make it that much more difficult to get the result that you both want. Communicate together, and communicate with others. Reach out to people, there are some support groups, speak to your friends, you should speak to somebody outside that situation. You should communicate with your clinic as well, say what you want, what you like, what you didn’t like, what went wrong and if you don’t understand something ask, so you get the information you need to carry on, don’t make assumptions. If you think something is missing in your program, ask them about it. Lastly, support each other, be there for each other, try to understand what the other partner is going through, and communicate, so that you are on the same page.

- Questions and Answers

When you work with a couple how do you get men to open up about their thoughts, and emotions around male infertility?

I think it’s just about understanding that their experience is quite different. I work with one couple, and you know, he’s become super supportive, and I guess is exactly the right sort of person with the right mindset and behaviours to support his partner, but I don’t think it was always like that. I think it was looking at it through maybe a man’s eyes of how do we solve this? What’s my involvement in the process? Also, having other people to speak to outside the process itself is important, but the truth is that there are lots of men who don’t want to engage, and I think it’s very well-known that women often drive this process more than men. It’s quite common that people will say, oh well, you know he wants to have a child, but she’s the one turning up to all the webinars, the meetings, the clinic appointments, and so I think being more engaged means you’re more likely to open up, it’s probably a short way of saying it.

I’m soon to have my 10th IVF transfer, I’m using excellent quality euploid embryos and have never had positive pregnancy tests. Since my last transfer, we have tested for and optimized everything. It feels like so much is depending on what happens in the weeks after the transfer. I am well aware that the cycle may not work, after all, this is all I have ever experienced. What is the best way to frame this and get through the weeks after?

It’s difficult when you’ve had such a long journey with so many things. I don’t know every single thing that you’ve optimized, but I imagine on your 10th transfer, you’ve done a lot of different things, just reading about the fact that you’re using excellent quality embryos instantly tells me, you’re using the PGT-A test which probably means you’ve done endometrial testing as well. There are so many other things you could have done and may or may not have done, but one thing I would say is that sometimes people get to a point where they say there’s one little piece of the puzzle, and this isn’t perfect, or it isn’t exactly what I expected and they seem to have already written off the chance of it working. Perhaps, this isn’t so accurate to say this if you have a euploid embryo, but I was speaking with a client recently, and she said the embryo wasn’t very good quality, it was labelled of a certain quality, and I said, the label doesn’t matter, it’s the embryo that matters, and you have to believe that it’s going to work, there’s no point going into it thinking this isn’t going to work otherwise why do the transfer right now. I don’t have a lot of evidence to say that having a positive mindset is going to improve things, but I would say having a negative mindset is, at the very least, not going to make you very happy whatever happens next. I think you’ve got to stay as positive as you can. Another thing that I hear people doing is they’re almost thinking, let’s assume it doesn’t work, let’s start thinking about the next cycle, what am I going to do next, and it’s like you’re still in this cycle, you’re still in this part of the process. Try to stay positive about that part of the process, and don’t think ahead too much. Other than that, I can’t give too many other tips about what to do.

What are your thoughts on such methods as Chinese herbs, and acupuncture, are these things you would recommend?

I’m going to be upfront and open about this, there is some evidence that particularly acupuncture works, but it’s not the same as Western medicine, so it’s quite hard when you are going through IVF, and you’re still mixing these two things. There’s some evidence that acupuncture can help before and after the transfer, there’s also quite a lot of evidence saying it doesn’t help, but it does relax people. There’s a lot of evidence saying this relaxes people, and so if this is something that is going to make you feel better, then I don’t see the harm in that, there’s no evidence of harm and that’s quite important. I know that might not sound enough to some people, but I’m not an expert on acupuncture or Chinese herbs. There’s certainly not a huge amount of evidence of Chinese herbs improving IVF but general fertility. These things have been around for thousands of years, I think it’s just hard to make the comparisons and measure them in the same way we do with Western medicine and IVF.

Can you recommend any fertility counsellor in the UK?

I am trying to be independent, I don’t want to just favour 1 clinical, 1 nurse or a doctor because I don’t have experience with all of them. I know a lot of them, and I probably have preferences, but they’re based on my interactions with them, not as a patient. I’d rather teach you how to fish rather than give you the fish. I would say, you can find all these people on the web, most clinics have a fertility counsellor, they’ll be independent ones as well so you can find these on the internet, they probably have ratings so you can look at the ratings, look for people with large numbers of ratings. This is where probably friends and family are a good type of recommendation or a bulletin board. A good counsellor has spoken to a lot of different patients with a lot of different issues and is good with all of them, and that’s why they’ve got a good rating too. Perhaps damage during ICSI injection.

If errors happen in the lab, do they get reported to the patient?

I worked in a lab, so my short answer is yes, but I think it probably depends on what you define as an error. If you’re talking about what they call a reportable error, for example, losing an embryo, or mixing up somebody’s eggs, these are extremely rare events, but they have happened in history. Things like that get reported not only to the HFEA, but also to the patient. If by error you mean something was left out of the incubator for 30 seconds longer than normal, for example, you could say that was an error, would that get reported? Maybe, maybe not. The answer depends, but if you’ve got any indication from anything or anyone that something didn’t go according to plan, you should question it, and you should get a response. To consider damage during the ICSI procedure an error is difficult to say. Again, that would depend on what exactly happened because if you had 10 eggs and 9 of them were damaged, it’s unlikely, but if that were to happen, a question to ask is what’s the normal damage rate, and then they might say it’s 3% I’m making the number up and then you go mine was 90% and your average is 3%, this doesn’t sound right. The underlying part here is Key Performance Indicators measurements that are done every week, every month to make sure that damage rate is under control, and so if that damage rate creeps up, that’s something the clinic is meant to do something about potentially report it but on an individual basis for individual patient and damage rate is one of those things that will be considered suboptimal.

Do you work with patients seeking treatment abroad?

I have done this in the past, I’ve got quite a few friends that I’ve worked with who’ve ended up going abroad and were very successful. I’m very open-minded about it. I think it’s about finding the right thing for them, and sometimes going abroad is the right thing for them.

What are the advantages of Comprehensive Chromosome Screening (PGT-A/ CCS) for Advanced Maternal Age patients (+38)?

Non-Invasive Prenatal Testing (NIPT) following IVF or IVF+PGT-A, beneficial or not?

How important is male factor and how to overcome that?

PGT-A Success Stories Explained: Outcome vs total cost of IVF treatment

IVF & fertility treatment for women over 40 – what are your chances?

What to do after failed cycles and miscarriages?

Authors

Professor Alan Thornhill

Professor Alan Thornhill is a fertility expert with over 25 years of experience and more than 100 scientific publications in IVF. Specifically, he’s a clinical scientist (specialising in embryology and genetics). Uniquely, he’s worked in IVF and diagnostic laboratories, research, clinical and business management, and even with the UK’s fertility regulator. Working in US and UK-based IVF clinics and consulting globally, he’s been involved in the IVF journeys of thousands of couples (both professionally and personally). He’s helped and advised patients, friends and strangers with issues including low sperm count, sperm and egg donation, genetic testing, surrogacy, treatment overseas and more. He currently works in the biotech industry, and his personal mission is to provide his unique brand of fertility coaching to people in need of help.

Event Moderator

Caroline Kulczycka

Caroline Kulczycka is managing MyIVFAnswers.com and has been hosting IVFWEBINARS dedicated to patients struggling with infertility since 2020. She's highly motivated and believes that educating patients so that they can make informed decisions is essential in their IVF journey. In the past, she has been working as an International Patient Coordinator, where she was helping and directing patients on their right path. She also worked in the tourism industry, and dealt with international customers on a daily basis, including working abroad. In her free time, you’ll find her travelling, biking, learning new things, or spending time outdoors.

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