- How can I access support through the ongoing uncertainty on timescales for my treatment starting?
- What can I do when my treatment has been delayed to make the most of this time?
- How can I take back some control of the situation?
- What can I do to help when I’m feeling anxious about treatment delays and then getting started again?
- How can I find out the most up to date information on what will happen with my treatment?
Coping with uncertainty when the IVF treatment is being postponed
Sarah Banks, Fertility Coach and Mentor, is answering patients’ questions on how to cope through the uncertainty of coronavirus and IVF treatment being postponed.
Questions and Answers from the event
How can I access support through the ongoing uncertainty on timescales for my treatment starting?
There are various ways you can access support, and a lot of ways are offered. You must take advantage of it. As I said, there are counsellors, who are linked with clinics and who are still running sessions via Zoom or on Skype. They are running phone sessions as well. If there isn’t a fertility counsellor at your clinic or you want to contact somebody separately you can look at BICA web page. They have a list of counsellors, and you can type in your location and book your session. It is really worth trying if you are worried and you are struggling. I have been in contact with many patients, and I know what it means for them especially if they’re worried about how it will affect their future fertility and chances to have a child. I would recommend getting in touch with a counsellor, even if you just have one session to check if it’s right for you and if it’s helpful. And as I said, online support groups are great. I run a local one and a national one. We have been really busy with people supporting each other amazingly through this and keeping each other updated, sharing tips. I think most others that are around are closed, so nobody outside the group can see what you’re writing. The groups are a safe space to share support for one another and get advice. They’re a great way of doing that. you’re more than welcome to join my group and we can put the details for anybody who wants them. Speak to the staff at the clinic, if you are linked to aclinic, about the support that they can offer. They may have links to different support services. The nurses are there to support you. If you’re struggling you can speak to the clinic as well. Instagram is great for supportive accounts, so if you’re following people, there’s a lot of people who will be in exactly the same situation that you’re in and you can support each other through that. I’ll just tell you that friends and family can be a great source of support. Unfortunately, you may not be able to see them at the moment, but they’re there on the phone or Zoom. Rely on them, talk to them about how you feel, and if you feel comfortable doing that. Use your support network you have.
What can I do when my treatment has been delayed to make the most of this time?
As I mentioned before, the best thing you can do is to get yourself ready to start treatment again. You may not know when it will be, but you can get yourself ready. That includes preparing yourself physically, so eating well, and eating the recommended daily intake of fruit and vegetables, taking recommended vitamins. Your clinic will recommend those. Get lots of rest. Use an opportunity to catch up. We’re very often rushing about, and you may be having to go back out to work, but maybe some of the other things that you’ve rushed about too aren’t happening. So use that time, where you’d usually be rushing about from different appointments. You do not commute to work, so use that time to rest, to do things that help you feel calm. Maybe that is starting to meditate rather than your half an hour daily commute. Use that time to journal about how you’re getting the day or what you’d like to get done or meditate for half an hour. Whatever it is that works for you. You get lots a book and get lots of rest, get lots of sleep, and get yourself emotionally ready.
Thinking about how you want to feel, addressing some of those things. Maybe it’s trying to manage some negative thoughts around it and if you’re worrying about treatment starting, think about what you could do to manage those thoughts. That could be speaking to a counsellor or a coach. It could be speaking to your clinic about the worries you’ve got so that it puts those at rest. It could be some of the things like acupuncture and reflexology, which you, unfortunately, can’t go to at a minute, but you could always see if they do phone consultations just for the talking side of therapy. Do things that help you reduce your anxiety, things that help calm, and avoid the things that increase your anxiety, like watching the daily briefings that we have in the UK. If you don’t want to feel anxious every day or don’t look at certain social media if you find that quite triggering. Look at things you can do to reduce that anxiety and spend time as a couple together to help you cope through it together. Use that time to bond, to talk about how you feel about treatment starts. And also get the support and a bit o fa common theme, but it’s really important. There’s so much out there that you can access.
How can I take back some control of the situation?
A lot the people that I speak to stress that a really big thing with going through fertility treatment, needing fertility treatment, is feeling in control of your life. You have to give the control of your future, the possibility of having a child, to your fertility clinic and suddenly even that’s being taken away. I know a lot of people feeling really out of control at the minute. It’s really important just to focus on some of the things you can control at the moment. What I’d recommend is making a list of things that you can control, like keeping fully informed. You can ring your clinic to find out the situation with your specific situation. You can keep an eye on their social media, their website, for all the information so that you’re fully informed of when you need to contact them to get started again.
What their process of prioritization might be; and if they have one; how things will be in the clinic when you get back; if you need to organize getting a mask; if you need to work out different timings for going; can your partner come. Make a list of things that you can control there so you can keep informed. You could write a list of all the questions that you have for when you start the treatment again, in terms of timings, in terms of your actual treatment. That way, when you get the go-ahead to start treatment again you will have that list prepared. Look after yourself physically and emotionally, so you can control all that. You can control what you’re eating, and you can control how much rest you get in and make a list of all those things that you have control of. Planning each day while you’re in lockdown if you’re not able to work, is important.
Try to keep some kind of schedule going, so that you’re getting up and getting dressed, keep some normality and routine going. You can plan things that you do while you’re in lockdown. If there’s something you really wanted to do for a while just do it. If it’s looking for a new job, you could start doing the CV. If it’s decorating a room, you could maybe look at doing that. I know quite a few people who’ve been doing that during the lockdown. It might be helpful to you to write lists of things that you can’t control because then you can accept that they are out of your control and, then try to stop worrying about them. After all, no matter how much you worry about it, there’s nothing you can do. You can’t control when the treatment starts, you can’t control what happens with the virus. And as much as we would love to control all that, it’s out of your hands, and it’s one less thing for you to worry about. So to take back the control, write a list of things. A list will help you feel organized, and it just helps you look at the things you can do. I think you’ll realize that there are a lot of things you can control in this situation, which will just help you feel like you’re doing everything you can.
What can I do to help when I’m feeling anxious about treatment delays and then getting started again?
Remember about breathing. Sometimes when we get really overwhelmed, and everything gets a bit too much you can feel that panic is starting to rise and your chest and your heart is starting to beat faster, trying to just breathe, will just calm your mind, calm your body down. Take really deep breaths and calm yourself so that you can then think a bit more rationally about it. It is overwhelming and many people now do feel overwhelmed by what we’re all going through and unfortunately for those who’ve had treatment delays, it’s just another layer on top of what’s happening. So breathe, try to help yourself calm down, so that you can then think of ways to take control back. Things you could do to help yourself. Speak to your clinic to get the right facts for your situation. We have social media and blogs, but sometimes the information isn’t correct, or it might be correct for somebody else’s clinic or somebody else’s situation. I think if you’rereading lots of different bits of information it can get very overwhelming and you start to worry that your treatment will be delayed, that things that happened to somebody else might happen to you. I think to get the clear facts and the correct facts for you, for your clinic, is really important because it can help with some of those feelings and anxiety. Because you know what’s happening specifically to you, it helps to avoid the additional worry. As I said, it is important to do things that help you feel calm. So if you start feeling anxious about it read a book, meditate, do some journaling around how you’re feeling, or put on a film, go for a walk. I think it’s important to keep yourself occupied and do the things that are calming and relaxing for you, rather than things that are going to feel that anxiety.
How can I find out the most up-to-date information on what will happen with my treatment?
The best place to find out the correct information for your specific situation is to ring your clinic that you are linked to. If you were linked to a clinic already the best thing to do is to contact them and find out what’s going to happen with your specific situation. They’ll be able to tell you what to do if you were partway through a fresh cycle and you have had everything frozen. They’ll be able to tell you the next steps and when you need to contact them and what the process will be. If you were justabout to do your paperwork appointment, they may be able to get that online and get you started on that already. So the best policy is contacting your clinics as they may have Q and A sessions on it, that you could join. They may do a webinar, and they will update their social media and their websites. You can find that information from there, or you can contact the clinic. You should be mindful that they may be getting a lot of calls, you may not be able to get through straight away. What I hear from clinics is actually that for specific questions about people’s personal situations contacting the clinic is the best way because they cannot really share generic information. The Q and As are really good with your specific clinic for asking your questions. The best place is with your actual clinic. If you’re not already linked to a clinic and you’re looking at clinics, then you maybe need to check their websites, give them a call and find out what it means for new patients or just being referred patients in the UK. Keep an eye on their HFEA’s websites as they’re doing regular updates. There’re updates on which clinics have been approved to reopen. They’ve got a frequently asked questions section there, that tells you lots of information about how COVID seems to impact fertility or pregnancy. You can find links on their website. It is a great place to go to. If you’re in a different country, there are some regulatory bodies where you can find out the information.
Is there any information about the risk of COVID in fertility preservation treatment?
I’m not medically trained, so I’m unable to answer specifically, about how itimpacts fertility. I really wouldn’t like to tell you something that wasn’t correct, and I think they feel the risk is very low, which is why clinics have been allowed to reopen and, depending on where you are. I think fertility preservation was still the only treatment that was happening through the uncertainty, so you may find that if the treatment hasn’t started again then you may still be able to have fertility preservation treatment. If you are linked to a clinic the best thing to do would be to ring them and ask for advice on that. You could look on the HFEA website because there’re frequently asked questions. I’m fairly certain, there is something about it there, things like the risks of going through fertility treatment and any subsequent pregnancies that happen through fertility treatment. If you are linked to a clinic, it’s probably best checking with them from a medical point of view and whether they’re running.
I continued with my treatment during the corona times, but unlike other times (I did already ten times before) my body badly responded to Pergoveris, meaning after day six the follicle size has decreased. Do you think this could be attributed to COVID?
Unfortunately, I wouldn’t know from a medical point of view because I’m not medically trained and I would suggest speaking to your clinic and see if you can get a virtual appointment with them. I’d ring them, and if they can’t answer it there, then you could book an appointment with them and talk about your concerns. I don’t believe that COVID is affecting fertility treatment but, I would say that everybody’s different, and I don’t know how every person would be impacted, or if it could have a negative impact on you. I don’t know if you’ve had COVID and you’re worried that that could haveaffected you. I know that certainly in the UK, or I believe in the UK if you are showing signs of having COVID, then they would stop your treatment. I assume that’s partly a risk factor of being in the clinic and things like that. The best thing to do would be to just speak to your consultant about that and see if you can get a virtual appointment with them to have a longer chat about it and ask their thoughts on it and what todo.
I feel a bit confused as to who actually is going to decide (in case of going for egg donation abroad). How can I keep in view which clinics will reopen when, and which airports, etc.? I feel this is arbitrary even within Europe.
It’s really hard. There are many different factors and, in all honesty, I’m not sure who would decide. I guess, and if you are connected to a clinic in the UK, they could help you manage to go abroad for the egg donation if they have a linked clinic abroad. They would be able to advise because they’ll be monitoring it very closely. It will come down to probably three factors. If the clinic in the UK is open and in the country that you’re going to it is open, and also if flights are getting there. I mean you could contact the fertility network. They may have some ideas and the fertility network in the UK is the leading charity, who supports people through fertility and going through treatment. They may have ideas about that. If you’re with a clinic that is in the UK, you could speak to them about their links with the clinic abroad. If you’re going directly to the clinic abroad, they will be able to answer when you’re able to go to for treatment, when they’re open for treatment. They may be able to answer that for you. But then it’s the flights across and staying over there which may be problematic.
The clinic abroad quite often will join in with hotels, or they may be able to advise local hotels that are open. So in terms of organising your stay the logistics there, they will be able to help. But I think you’re probably going to be limited by flights to and from other countries and when the airport open. In the UK, there’s going to be the quarantine when you come back into the UK for 14 days, other than from France and Island. That may impact your decision. Regarding the situation in Belgium and a clinic in Cyprus, I’m not sure if they have a link. If you’re going direct to Cyprus but I’d speak to the big clinic where you’re having egg donation and find out when they’re opening, when they’re starting treatment, what their recommendations would be. You won’t be the only patient, who’s doing a similar thing, so they will have to look at how it works for any patients that are coming from other countries when they can safely start again in terms of airport’s opening, in terms of safety coming and going from the different countries. It might be a case of having to check it out with a few different people, and it’s such a lot of uncertainty.
I’m wondering maybe the HFEA may be able to advise if you’re going from the UK to Spain. I think it does depend on the different situations if you’re from one clinic travelling to another then their liaison should behappening.
If you’re already with a clinic, I think you’re probably in a better position in that they will be looking at all of this for their patients, because as I say, you won’t be the only one who’s travelling. From their point of view, it would make sense that they would be checking what’s happening and how they can help those patients. I think your first call is probably to the clinic and if they say they’re not sure maybe it’s a case of continually checking in with them.
Things are very up in the air in the UK at the minute and there’s the quarantine case and then also feeling comfortable about flying over. The clinic’s probably the first point of call. Keep checking in with them, ask if they’re not sure now when they think they’ll have a better idea of what’s happening so that you know when to call them again to get some information. I understand that it must be very difficult for you not knowing what’s going on with this and there are so many more complications.
I have been going through the first fertility preservation cycle in the UK but I would like to go for the second cycle to a different country. How will things be managed once I decide to use my eggs in order to move forward with an IVF treatment?
It is not certain yet. They may have different regulations on storing eggs where you could have the transfer done and moving to and from countries. Obviously, there’s the uncertainty about the travel to different countries that just put another side of it. Even if the preservation took place in the UK it would be the travel side that would impact you. And if they’re doing fertility preservation in another country, the issue would be getting there. If you do have a second cycle of preservation in another country, then it would just be deciding where you’d want the transfer to be done. If you wanted to have a transfer done in another country and you’d have the choice of using the eggs that you preserved in that country or moving your previously preserved eggs across from where you are. If the clinic that you had your preservation cycle is in the UK, they may be able to tell you if you could safely transfer the eggs abroad when you chose to use them. But I think you will need to wait until we are able to move around more freely before you’re able to go across to do it.
Is there any psychological trick to go to an advanced level of preparation?
I think it’s just a case if you answer from an emotional point of view on getting ready to start treatment. It seems like managing the negative thoughts that you have is extremely important. When I was going through my second cycle and struggled to think that it could not work for us, because my first cycle hadn’t. For me, a big part of getting ready was managing some of those negative thoughts or reminding myself that actually there was still a chance this could happen. First, just because the experienced didn’t show that it could work for us, we’ve had a negative cycle to start with. I had to work on my negative thoughts going into it. I know everybody says to stay positive’ and it’s not about being positive all the time, but it is about managing some of those negative thoughts. When you start thinking that it isn’t going to work, that it’s going to have an impact on your chances of it working, try to remind yourself that it isn’t necessarily true and you’re doing everything you can to stay in the best shape you can be for going into it. Look at things that help keep you calm and try and stop that cycle of worry when one thing sparks off another one, and you can quickly find yourself right at the bottom of a hole. When I had those, I used to click my fingers to snap myself out and say stop it is not helping my worry. I used to tell myself my worry is going to make it less likely to happen for me because it was something that snapped me out of that cycle. I think it’s managing those negative thoughts going into it. You have got to believe that there is still a chance and do things that help you cope. If you were struggling psychologically, if you are really worrying, if you’ve been through quite a lot of cycles or you’ve suffered a loss at some point, and you’re really struggling psychologically to go into counsellor meant, then I definitely recommend speaking toa counsellor to get some more psychological support. They can help manage some of those deeper-seated fears and manage some of the emotions around any loss through. I would always recommend speaking to a counsellor before you start treatment, because if it works for you then it’s amazing. If it does not work for you, then you can at least say you’ve tried everything. I think to get the support going through treatment is really important, and I’d say that the biggest thing is managing those negative thoughts.
There are times when you feel that you’re losing a battle and everything is going against you, although with the current situation you cannot do anything. What can you do to get overthese waves of sad thoughts and helplessness?
I completely understand. I mean, it’s hard enough as it is and when you’re struggling to get pregnant and you’re going through treatment, and then on top of that, no one could predict what’s happened now. Coping with the thoughts that come with that is very hard and it all comes back to trying to take control of the things you can do. There’s very little we can control in terms of when the clinics open, or when airports open but it’s worth trying to control the things you can control. You can control how much rest you get and how you look after yourself. You can control distracting yourself and using coping mechanisms to help when you’re feeling those things. As I just mentioned managing negative thoughts when you’re getting them is crucial. Looking at what it is that you’re worried about. For example, thinking that the clinics are never going to open, looking at it rationally will help. They will open when it’s safe, and actually, that’s the best time to do it because you want to make sure that you’re safe and healthy. Going through treatment gives you the best chance when you are well and healthy. When you feel sad about the situation but just remind yourself that it’s better to go through treatment once they’ve got this under control and it’s safer for you and you’re in a better place. Use your support network, this is where and support groups are really good. I have regular comments every day about people feeling very similar things so I’m just having a really bad day and then you just get a load of amazing people who completely get it replying trying to help to remind somebody how strong they’re being and giving you advice and things that worked for them. I think that it’s a safe place to talk openly. Unfortunately, people who haven’t been through it don’t always get what we’re going through. Friends and family may not understand why you’re so upset on a day to day basis, whereas support groups are great for that. They will help and they’ll help keep you up. I think you should make a list of all the things you can control, and even if that is things like ringing the clinic every other day to find out any more updates, or checking the clinic’s website every day, you’ll feel like you’re doing something and taking control. Focus on your relationship and spend time as a couple, and you may have been in false lockdown together and seeing a lot of each other as it is, but make it quality time to spend together, so that you know the time you’re waiting to start treatment again you’re at least trying to enjoy it. Having a date night in your kitchen and watching a film together is a good idea. I think planning something for each day, that makes you smile, however small. We are a bit more limited while we’re stuck in our houses but try and plan something for every day that makes you smile. Write a list of the things that you can control and a list of things you can’t control. Say: ‘I can’t control you, so I’m not going to worry about you’. Seek support, because it is great to be completely understood when you’re feeling like that. It’s not about saying you shouldn’t feel like that, everybody feels like that, and it’s helping you come back up again. I hope that helps all those
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