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You Are The Captain of Your Soul

I’ll start by telling you why I’m writing. Why I need to write.

I’m writing because there are 3.5 million people in the UK alone who struggle to get pregnant every year; and while they test and cry and wait and bleed and hope, there’s not a lot out there to suggest that something good can happen. And I’m not talking about that elusive ‘BFP’.

During the 26 months of fertility fun we went through (one uterine operation, 6 rounds of Clomid, 4 rounds of ovulation induction and one successful round of IVF), I learned more about myself than I ever thought possible. I changed into a more patient, more confident and happier person. Despite how difficult it was, the process became a huge part of who I am now, how I look at the world and how I approach all aspects of my life.

This uplifting effect was unexpected!

But don’t get me wrong.

There were many occasions where I felt like a shell of a woman. There were many occasions where I felt jealous, angry, sad – desperately sad – impatient, stuck, terrified.

But all I had read and heard about was how stressful, difficult, sad and invasive a fertility journey would be. How the ups and downs could wreck relationships. The emotional upheaval, the frustration, the pain. There was absolutely nothing to suggest that going through a fertility journey could, in any way, be a positive thing. Well, mine was positive. That’s why I wouldn’t change it and why (argh, big moment…) I am writing a book. Oh yes I am.

I want to share hope – not hope that you might get pregnant, though that too – but hope that this doesn’t have to be the worst time in your life.

It takes some time, some effort and a bit of determination. But you can make this time truly count, and turn it into some of the most formative, productive, exciting months or years, full of incredible memories- not just difficult ones.

So I am writing a book for you, the person behind the cycles/uterus/sperm to share some of the things I found that transformed my life while we went through our fertility rollercoaster because against the odds: I think I found the key to being happy.

As part of my research, I am interviewing some amazing people in the fertility world and I will share extracts from these chats here for you to read.

My number one piece of advice in a nutshell?

Day by day.

Suddenly, everything becomes a lot bloody easier when you just take the pressure off. Day by day, you take whatever is happening and you accept it. That’s it. You process whatever feeling you’re having in that moment and you don’t worry about the next day. How do you do this?

It takes practice, but you do it through learning how to be present. Mindful. Aware. You do it through learning to acknowledge when you need help or support or when you need to be alone. You do it through learning when you need to distance yourself from a friendship to preserve it for the future.

You do it to know when to listen to that voice saying: ‘I need water, broccoli and vitamins’ and when to listen to the one saying: ‘I need wine and an entire packet of hobnobs’.

In my view, both are very valid.

I have been working on this bad boy book for three years and only now going public with it. I know how incredibly supportive the ttc community is, so I will share as much as I can to help you while I research and write and put as much uplifting, comforting, useful information together as I possibly can.

Disclaimer: I am not trained in any fertility support/mindfulness/counselling in anyway! I am just a girl, standing in front of the internet, sharing what I found and hoping it can bring some comfort, positivity and maybe a laugh here and there. I will be talking to people who ARE very much trained though, don’t worry!

Lastly, and just for you:

You are amazing. You are strong. You can do this. As my pal (ahem, famous Victorian poet) William Henley says:

Out of the night that covers me,

Black as the Pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

I believe in your infinite ability to cope, and not only to cope but to live a happy, fulfilled and joyful life while you go through one of the most difficult challenges life can throw at you.

You are the master of your fate and you are the captain of your soul.

(That was Will again.)

Back soon,

Alice X

 

 

 

 

 

 

 

 

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I’ve got a new name!

To all my amazing subscribers. Thank you so much for your support. I have decided to move this blog over to a new website, which is where I’ll be sharing my work from now on.

I will also be sharing live events and other news and information there. You can subscribe to the new blog over at:

http://www.thisisalicerose.com

And find me on Instagram here: @thisisalicerose

With grateful thanks for your support so far.

Alice xx

Sharing a Story: Sarah Tankel Ellis

Sarah kindly invited me to her house to talk all things fertility. A fashion stylist at ITV, Sarah also has a hugely successful fashion and lifestyle blog http://wearetwinset.com/

Sarah moved me with her calm resilience as she told me their tale. It was long and it was hard; but they had good times. They had great holidays, they made happy memories.

And – if you’ve tried standing on your head, eating nothing but lobsters and 300mg of spirulina every day to try and get a bun in the oven: Sarah’s done that too.

OK, not literally.

But she really left no stone unturned. She tried it all, she committed to it all and she emerged with some epic tales to tell. She speaks with such candour, honesty and acceptance of what happened to them, with such a centred, grounded connection to their story it’s impossible not to feel inspired.

We met at Sarah’s beautiful house. I met their gorgeous dog. We drank coffee and we talked and talked and… I’m just going to leave this here.

This is Sarah’s story.

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It was about 4 and a half years ago that we started trying naturally (I can’t even remember if I was using the peeing sticks) but my husband thought there might be something wrong. So, we went for some tests and he had low motility, the movement of the sperm.

We carried on trying but nothing happened, so we went to see a doctor who was recommended by a friend.

We had more tests, but everything came back OK. There was a bit of a motility issue but nothing too serious. We didn’t do any other tests and we didn’t know much about lifestyle or anything like that at this point.

About a year after we started trying we had an IUI. It was disastrous. We should never have done it in the first place. When we got there, the sample was bad, and the doctor said, ‘I don’t think it’s going to work but let’s do it anyway’. Looking back – is it better to do it in a bad way? Or not at all? Probably not at all.

It didn’t work. Then my best friend was getting married in Mexico, so we thought, let’s go and have a fab holiday, have my 30th and start IVF when we get back.

We rushed into IVF. I think in this day and age you think, ‘I want it now, now, now’. We were able to do it privately, so we carried on with this doctor – again, we had no other tests. We had the first round of IVF and got a good number of eggs; a good number of embryos and a fresh embryo transfer straight after the cycle, but it didn’t work. We were devastated but it was early days. You don’t know what you’re getting into.

We had a second frozen embryo transfer which worked. I thought, oh it wasn’t even that bad, life’s great! We had no information after the positive test, no scans or blood tests. When we went for the 8 week scan they said: oh, it’s not there.

We were devastated. You paint the picture that everything’s alright. So, then I had a third embryo left and did that transfer: but it didn’t take.

With the injections; I don’t know what kind of picture I had but I always imagined it being really terrible and I didn’t know anyone that had gone through it – but I found it OK. I didn’t do them myself, my husband did them for me, but I think it’s just what the drugs make you feel like. Emotionally you feel very different to everyone else and everyone’s announcing pregnancies and you feel quite separated from people. But I didn’t find it terrible terrible…I didn’t feel great. But I’m not someone to dwell. I just try and get on with things.

I think we had a couple of months break and I had a uterine scratch which basically cut my insides open!

Then went for round 2 of IVF. I think I found the injections a little harder this time because I thought, I’ve got to do this again…why me… and it’s more time, but we got three embryos again. The fresh transfer didn’t work, the second one took but I miscarried again within 6 weeks – they put two in for that one. By then, obviously I wasn’t feeling good and I thought, I can’t go on doing this without any other information. I feel like I’m doing the same thing, and I’m not getting anywhere.

I hated putting drugs into my body, I never take medicine, I’m not that type of person. I’m quite healthy and I really hated it – I felt like I was abusing my body.

I went to see someone else. He was great. He said, I think you need to go back to basics, I’m going to send you to a miscarriage expert, a nutritionist, a sperm specialist. Let’s just take a pause and find out what the hell’s going on. I vowed I didn’t want to do it again, it was too hard. I didn’t feel it was the right route for us and I just needed to take some time.

So, we did all of that, we had chromosome tests to see if we were incompatible and everything was fine. We went to this amazing nutritionist, Melanie Brown (you can read my interview with Melanie here). Funnily enough, our diets were good – my husbands could have been a bit better – but it wasn’t even what he was eating… it was what he wasn’t eating. So, it was adding in all the fruit and veg, the nuts every day. We took some supplements and his levels really changed from that.

It was good advice and it just felt like we were doing positive things without taking loads of drugs – which I really liked.

It was another 6 months of scans-  I think my lining was thin…but I just needed to get back to me before I went for anything again.

Then we said, let’s try IUI’s again. So, I had another 4 IUIs. I got pregnant on the third one but again miscarried within the 6 weeks.

I found that really hard because I knew that meant I would have to do IVF again and mentally I just thought, I’m not doing it again, not again, not again…

But throughout this time, I actually welcomed some really positive people into my life. There’s a lady called Rachel in St Albans who is a reflexologist (I also did acupuncture but it was quite far, and I followed good advice Rachel gave me – do things that could help you, but if they hinder you and make you stressed because you’ve got to rush there after work, it’s not worth doing- and that really rung true with my acupuncture). So, reflexology I found really good. We did a lot of chatting and she was very spiritual and I felt that was a side of me that I needed to delve into a bit.

We did some tapping – I saw her a lot and I felt like I could call her, and she really became a big part of my support network. She gave me some books to read and I had a lot of meditation tracks. I found one on Spotify that was just positive affirmations and I found that just listening to those things, ‘it’s fine, it will happen, I can get pregnant, this is going to be my time’ I found that really helped.

So, during that period I just tried to feel good about myself, because I realised I really hadn’t been.

We had a very strong marriage and we really had good times throughout. So, I really tried to get into a good head space.

I also went to see a kinesiologist. She told me to cut out gluten and dairy because I was so allergic to gluten I would never get pregnant eating gluten (this was, like, a 900 year old woman in Essex) and I said, sure I’ll try anything. I felt that if someone told me something that would work, I’ll do it.

I mean I don’t know how much it worked…

I went to see another kinesiologist (that my Mum met at a random party…who didn’t eat gluten and she got pregnant and Mum thought it was meant to be, so I had to go and see this woman…!) so I went to see her. She agreed with the gluten and dairy thing, gave me loads of other supplements, but in the end, I found it was too much.

I took on the gluten and dairy thing which I still do now with the help of Mel Brown in a better routine. But it was good at the time to have another outlet, another avenue of information.

When you’re having IVF it’s very clinical, doctor-y. Some things complement it, but you’ve got to find out what works for you to go alongside it.

Another person I want to mention who I found was my missing key, it’s a bit weird…she’s called Julia Butwold and she is an osteopath and a spiritual healer. I was told that: “she cures the ions in your body”.

Whatever that means. I was like – I’ll give it a go!

I really did everything and anything to help myself along the way. I was just about to start the first round of IVF when I went to an appointment with her, and it was the weirdest thing that’s ever been done in my life, but what I got from it was incredible. I’ve subsequently probably sent about 20 people to her, not for fertility reasons, but whatever they’re going through and she’s changed everyone’s life!

She is an osteopath, but she has this spiritual energy, I don’t even know what it is. So, you go there, and she scans your body and she will do whatever your body is asking for. The first time I went there, I ‘spose I can share this…

She said that my uterus felt twisted, maybe from all of the procedures or whatever, so she worked at manipulating – not forcefully – but she kind of puts her hands over your body and goes *fast sniffs*….I’m not even joking!

She pulls your hair and does weird things around your body. My eyes were closed but she does what your body asks for -it’s very hard to explain!

Then, the second time she said there wasn’t a love connection between my heart and my uterus and she needed to take the pain and the loss out and feed it with love. She knows my husband, so she was putting love from him into my body and taking out the pain and the loss and the sadness.

Another time, she said I wasn’t grounded. This is something that Rachel also said. So, she ‘unravelled my roots’. For 20 minutes she was ‘unravelling’. She cries during this stuff, it’s bizarre.

I went to see Rachel, my reflexologist and before I’d even had a chance to tell her about it, she said, your feet feel so grounded.

Reflexologists can tell so much from your feet!

The final time I saw her she was doing really crazy stuff, she put her finger in my mouth (with a glove!) and at the end, she said, “I just had an experience” and I said, what?

She said, you had a fertility curse on you from a past life. I said…right.

So, she said that her spirit guide took me to Africa. Into a tribe. I was taken in to a tent with an Elder Tribesman, who pierced my nose and lifted the curse and I held a baby in the air and everyone danced around me!

I think she was my missing key. When I told her I was pregnant (even though she knew already apparently) I told her she was the final piece of the puzzle. She lifted the curse and the energy was flowing.

It’s… not for everyone but I’ve always been interested in that kind of thing. Then she said, that’s it. Your work is done.

She also told me that I really needed to accept what had happened to me.

It was a massive part of it all.

Massive. As much as I felt like all the things I’d done – a mindfulness course too, loads of stuff – and I was generally in quite a good place, she really wanted me to accept that it might not happen. That it might, but it also might not and that whatever happens it will be OK.

It took me a while to get that that was my journey and she really harped on about this acceptance thing which I knew I hadn’t done…she said I needed to apologise to my body for taking the pill for so many years and that I didn’t love my body enough, so I also did that.

She told me to go into a room and cry and get it all out, but I said to her and to Rachel- I can’t do it. I’m cried out. No more tears left. So she told me to put pen to paper, and write, ‘I don’t know what to write” again and again and it would come flowing out. I think I wrote 5 sides, whatever it was and I felt so much better and I thought you know what? I’ve tried everything.

My husbands tried everything, we can’t try anymore. And if it doesn’t happen – we can deal with that and I accept that, and I accept I might not be able to do this.

I also got a dog which I can’t recommend enough!

The advice I was constantly given was ‘my friend’s sister’s dog’s mum went on holiday and they got pregnant when they were about to have IVF’ and I always thought, well that’s great but if you’ve got serious problems, it’s probably not going to work.

The other one was: what about getting a pet.

So we found our dog really quickly and got her 6 weeks later. It gives you routine. Your focus isn’t appointments, blood tests…instead it’s: I’ve got to look after this thing, morning, noon and night. Going for walks, connecting with nature, all that kind of stuff, is so important and it gives you that focus.

And you pour your love into them. I love my dog so much, I love her! I could never imagine life without her. My dog, Rachel and Julia were my guardian angels.

This is how I felt about the people that I met. I had my acupuncturist, my reflexologist, my Doctor and my nutritionist – and they stay with you forever.

Your journey is your journey. I personally didn’t find it easy to share while I was going through it. It was a really long time, 4 and a half years and often there wasn’t anything to say. A few of my best friends knew what was going on, but I couldn’t start telling people stuff because it was so long.

I found it difficult to make decisions on who to go to for the next round of IVF. But we went to see another doctor and my husband was just convinced he was the right way to go. Everything he said, he backed up with information which I loved (I found with my other doctor he’d say, go and look online and decide what you want! And I used to think – how am I supposed to know what to listen to and what not?  I also found looking on the internet the worst thing in the world, because I’d be like: my eyelash is fluttering! It means I’m pregnant. I’ve got an itchy head! It means I’m pregnant. You can find anything on the internet, these crazy people on forums in their two week wait that can literally drive you to the point of insanity and I found it too overwhelming. Plus, everyone’s got different opinions so it’s fruitless).

So, we went with this other doctor. At our initial chat he told us to go and have a fabulous holiday and to come back refreshed, relaxed and then we’ll start which was really good advice as well.

He redid all the tests, so he had all the information in one go. I then felt in the past I had been given bad advice. The first thing I say to people and I have said to people now is: just don’t rush into it.

I rushed into it. Someone told me a consultant to see, he looked good online, but I didn’t really do any research, I didn’t know what I was doing and I put my trust in someone and that’s great- if you have reason to put all your trust in them. But now I just think: get every single test. Ask all the questions, don’t rush into it. Otherwise you could be three rounds down the line and that’s what we ended up with…

So, every test…we retested. We started IVF with the new doctor, and when I came to check my lining and levels he would do a scan and a blood test. I didn’t even know that was a thing compared with my other one. If he emailed me and I hadn’t got back to him within 10 minutes he would call me.

I felt like I could call him, text him, every decision we chatted through, he never rushed me. It just wasn’t bad. It really wasn’t bad at all. Even the injections were better. And one day I went to him because I was nervous to do it myself, my husband was away, and he did it for me.

He suggested genetic screening, which I would recommend. I’m not a doctor but if you’ve had a few failed rounds and you have enough embryos…

I think because we’d had three miscarriages and a lot of tries where I hadn’t got pregnant, he was thinking it was the embryos looking good on the outside in the labs, but not good on the inside.

With genetic screening, they take a sample and they send it away, so you have to wait a month and freeze it…it’s essentially a frozen embryo transfer. So, we had 5 embryos initially. After the genetic screening, 2 came back fine and 3 weren’t. It’s a risk with the screening that they could all come back abnormal, and in the UK, you are not allowed to transfer an abnormal embryo. In America, if an embryo is abnormal, you can still decide to put it back in. They are saying now that an abnormal embryo could work but it’s just the chances are lower… so they’re throwing away potential pregnancies for people who’ve had genetic screening.

I did the first round with him which took quite a long time. I did find it difficult but then I knew that was the approach I needed: to take it slow. It was Christmas and our Doctor was away so it was touch and go for the cycle whether I could have the transfer before Christmas but we did it.

It was December 27th or 28th and we got a call saying we were pregnant. He said it’s early, let’s get through the next couple of weeks. That’s another piece of advice– one hurdle at a time.

I never thought about ‘telling people in three months’. I just thought: let me get to that 6-week appointment. That’s all I could I could think about. I found thinking like that so helpful: one hurdle down.

Then we went to the 6-week appointment and it was a mm or something –  and I just thought: Thank Fuck. Thank Fuck! Then obviously it was the 10-week and the 12-week…

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I look back and people say it must have been so hard. But a) it’s easy to forget when you get to the end goal, and b) you know what? I got through it. People go through worse. When I was going through this, my friend lost her Dad and her husband lost his dad and me and my husband said to each other, it’s not that bad. This is our journey. Life goes on. You can’t always have everything you want right now. Despite what this world makes you think. I learnt a lot about myself and it was what it was.

Comparison is not a good thing in general. I had a close friend and we were both starting IVF at the same time, we started going through it together and she got pregnant first time. That was 4 years ago, and I said to my husband, I just can’t see her. She would check in with me all the time, but it was so raw and close.

I really just cut out people and things that didn’t make me feel good. I didn’t go to anyone’s baby shower, because it was too hard for me. I didn’t need to go and feel terrible for 2 hours just to be a good friend, I know I’m a good friend in other ways. And if I didn’t feel up to going to things, I didn’t go. It wasn’t worth the after effects of me not being well mentally and if they are real friends, they understand.

I didn’t share during the process but now I’m quite open. I thought if I can make one person feel better…I didn’t really know anyone going through it, not that I would have wanted to speak to anyone. I never imagined it would be hard because I never knew it. You can feel alone and different from people.

I felt like if I could let one person know that this is my story so the hundreds of people who messaged me on Instagram could see–  and the general consensus was, thank you I’m starting my journey if you’ve got any tips…thank you, you’ve given me hope.

The duality of Instagram and real life is interesting… I really found Instagram was a good escape for me. I would get dressed up and take my pictures, and everyone would think: oh this glamorous lifestyle – but really, I would come home, inject myself and cry myself to sleep.

I want people to not just stop asking people when someone is going to have kids, but to stop saying to couples with one child – “you only have one”. There are plenty of people who have one and would like two. I’ve got a friend whose got one child which took years and they had a terrible time. She would love to have another, and I’ve heard people say it to her. Why is that? I want to change people’s mind-set.

There is a complete lack of awareness. It shouldn’t be an acceptable thing to ask people why they haven’t had children yet.

If you haven’t gone though it, you will not understand and that’s mainly because it’s not discussed that much.

And just because you don’t openly cry and say: it’s so hard…means nothing. I had someone say to me, ‘you were fine! You didn’t find it that bad!’ And I thought, ‘how the fuck do you know!? When I see you weekly and I’m being normal because I’ve pepped myself up for going on a night out or whatever – how can you say that to me?’ People don’t understand. Some people don’t have the skills to be understanding. So, you don’t see them. You’ve got to be selfish.

You have to find things you enjoy, I did a lot of meditating, a bit of yoga (although my yoga teacher got pregnant! My fertility yoga teacher.) I used to do 3 things I was grateful for in bed at night, and Julia (osteopath and spiritual healer) said: that’s rubbish. Do ten!!

I always went to bed thinking, life’s not that bad. And it would set me up for the day.

I did a lot of Law of Attraction stuff during Round 2. I read The Secret and I had my Vision Boards and all of that. But I think when you come down from a real low from being so positive, it gets harder to get to that stage and then you need to get to that stage in a different way. I remember saying to a friend of mine who has a business centred around it and is massively successful and she said to me, but it doesn’t happen straight away, and I said I know but it’s so hard to get back up again.

I found different ways to do it. I did look at my Vision Board but I went through phases.

Rachel gave me the CD hypnotherapy thing – before embryo transfer and after which was really good.

I also had transitional hypnotherapy. You listen to a recording for 21 days to change your brain. This woman was totally weird, her voice was so annoying! But I did it. It was going back to the reasons why you might not be getting pregnant. And just family things rehashed and whatever. I felt better from it. I felt like I would try anything that would make me feel better. And that’s what I say to people about the spiritual healer. Just go for an hour and feel good. Even if you don’t get anything from it, it’s an hour without your friggin’ phone and you can’t come away from it not feeling good!

I found it was better for me to put my energy into things like that while our friends spent weekends together with their kids. It gave me something to do, which was positive.

THANK YOU SO MUCH SARAH FOR YOUR INSIGHTFUL, POSITIVE, BEAUTIFUL INTERVIEW. You can follow Sarah on Insta @sarahtankelellis and @wearetwinset

Sarah’s consultant was Dr. Talha Shawaf . You can read my interview with him here

So much of what Sarah says is echoed in my blog and Instagram account @ttcsupport_daybyday and Facebook @ttcdaybyday. I will try to share as much useful information as I can, to give you the tools to get yourself in the same positive mindset that Sarah found, whatever is happening in your fertility journey.

 

 

 

 

When I Interviewed my Fertility Consultant…

Its a fascinating and slightly weird experience, walking into a clinic which holds such profoundly moving memories and acting in a totally different capacity.

There we were in this room where I had spent so many appointments. This room where I had sat, nervously waiting to hear how my follicles were getting on, where I had sat, listening intently to our treatment plan and trying to take everything in. This room where I had cried. This room where I first saw my daughter’s tiny, flickering heartbeat at our 6 week scan after a successful round of IVF.

And now, here I was, getting out my interview notes and voice recorder!

 

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Blurry but happy pic, post interview!

Dr. Shawaf treated my husband and I when we reached the end of our NHS road. He agreed to let me interview him and gave up 2 hours of his incredibly valuable time to talk to me.

So, I asked a lot of questions. From how to avoid being exploited by private clinics to whether you can do anything to give yourself the best chance of success (and the IVF process explained step by step).

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This door…the door to so many hopes and dreams…

Here goes…

A: What advice would you give to someone going for their first appointment with their doctor? What helps when somebody comes to see you for the first time?

T: I usually give some sort of questionnaire, but it is much more important that the couple have all the tests that they need done, so you don’t have to repeat them.

They need to read a few sites.

ASRM www.asrm.org

The Royal college of Gynaecologists https://www.rcog.org.uk

The British Fertility Society https://britishfertilitysociety.org.uk/

The Human Fertilisation and Embryology Authority https://www.hfea.gov.uk

Just spend a couple of hours on them– not long, because it can get overwhelming. You think, what am I going to do? Some of them are very gloomy! You can start feeling like, ‘why am I going through this?’

A: Yes, it’s very difficult – how do you manage that? You’re coming from a medical point of view. How do you manage patients’ expectations and emotions?

T: Well, I always tell anyone coming to see me, that you have to feel that you’re doing the best you can do. And if you feel there is anywhere better, then go for it! That link between me and whoever I see is very important. To give them the power to say, ‘well I’m doing the best I can’.

I sit down and let them talk about the issues that they have. There is that barrier – a doctor/patient relationship and you can’t open it, so I always talk about seeing somebody outside, a counsellor, not a psychiatrist just someone who can sit down with them and talk to them about what they can expect, and how they could deal with their emotions. That is helpful.

I do also think that some complimentary therapy can help, to help relax. Not sure that it’s very high element of importance in treatment because they are complimentary by nature and by name. You cannot be complimentary and be the centre of things. But anything that helps them feel relaxed.

A: How important is it to stay relaxed? You’re told to relax all the time and it’s so frustrating.

T: I think it’s mostly about expectation. I think the stress hormones are a small part of it, but it’s the expectations and the fear of failure. That is what makes it so hard. When a couple comes in, they finish their cycle and its negative, the general feeling is that “I want to go again immediately”. Sometimes I think it’s detrimental. It adds onto the emotional upheaval. I usually say, take 2 or 3 months. Not to do with the ovaries but the emotion. They can go back to normal, see friends, go out, not tied to injections, go on holiday for a bit to relax.

A: I think that’s very good advice. I remember wanting to just try again immediately when we had failed cycles.

T: Timewise – people say, “but I’m going to be 37 next month!” Well, OK, but it’s not like if you cross the line you’re out! One needs the perspective. You look at it much more as: ‘you as a person’ (holistic). Gradual, relax, take things easy. Think about something else, to clear the mind a bit. When people do that they start thinking in a different way. Approach the whole problem more positive rather than keep on the negative.

 A: At what point should a couple go and seek medical advice?

T: If a couple feel there is a problem, a medical problem, they should try a few months and then go. But otherwise, if below 35: it’s a year. For investigation, not treatment. Over 35: 6 months. It doesn’t mean they should go for treatment, that’s a different issue. A couple could come in after a year and they could have all the tests and find nothing wrong, so you say, keep trying nothing wrong. But this is where NHS and private differ. NHS is bound by guidelines restrained by finance. Privately you can ask for treatment and it’s not that you won’t get the same objective, just that you get it quicker. That’s the only difference.

A: What are the treatment options available?

First, you make a decision about what the diagnosis is. You have a decision about that, then you go and target the diagnosis. If a woman has blocked tubes, you do surgery for the tubes, which is now not very much looked into – or you go for IVF. A man with very poor sperm count, you try and find out the reason and if you can’t, or there is nothing that you could do about it, then it’s IVF or ICSI. So, these are very much targeted.

Then you have things, for example, like a woman does not produce eggs regularly, so you give some medication. You do this for a few months and if that doesn’t work, you move to the next stage.

Then you have quite a large group which we call, ‘unexplained’ because we don’t know. Some are to do with some pathology, but that requires surgery like laparoscopy, to find out or you just don’t know.

The ‘unexplained’ category is getting bigger and bigger and particularly in the women who are over 37 and 35. People are delaying having a child and it is causing a lot of…work for us. People are making lots of money from it. It’s also causing a lot of difficulty, it gets difficult once you reach that age. Not impossible- but it gets a little bit difficult. It requires more money and more emotional stamina to persist, but mostly because we don’t know what it is.

We think it’s probably to do with the quality of the eggs. That’s what we believe now, at the present time (but in medicine…we always change our mind. And that is correct, because you always examine what you’ve done, and sometimes you find something wrong and that is quite common).

You try and treat the cause. If you can’t, then for young couples the advice is to wait. Don’t do anything. But if it doesn’t, then there’s two options. IUI or IVF. There’s a lot of controversy about IUI.

NICE has said it is not cost effective. They have stopped it from the NHS funded cycles. They thought it was better to direct the money to IVF. It has some sense…but has also some nonsense! Some do benefit from it. The question is time, it takes longer to achieve a pregnancy with IUI. And, of course, it’s the cost. 3 or 4 cycles of IUI would be the cost of IVF.

A: Do they still do ovarian drilling?

T: Yes, a possibility, but because of surgery and complications afterwards it’s a small group. You do it if a woman is having laparoscopy – because it is sometimes a combined problem – tubal disease, PCOS, a little bit of endometriosis. So, you do it as an adjunct to the main surgery. It’s not a decision that will be taken lightly because of the risk.

It is an easy procedure, but it is sometimes done by somebody who is inexperienced because of this, and people have noticed that some women who have been through it, you put them to the other end and they have very low egg reserve because they have burnt off so much in surgery. So, that is the difficulty. If it going to be done it needs to be by a highly specialised person. It has some bad press at the moment. 

A: What are the IVF success rates for a live birth?

T: Totally dependent on age. It depends on the quality of the eggs mostly. Looking at Pre Genetic Screening (PGS), they can detect if the embryo is to do with a male or female issue. It needs further study. But it is 90% to do with the egg. 10% with the sperm. This is related to age.

If you see the graphs looking at few thousand embryos with PGS, you see as they get older, the percentage of abnormal embryos gets higher and higher, until you get to 97%, so only 3% of a normal one, so it’s pot luck.

It will come – yes! And this is why you can still get pregnant naturally. But it is lower rate. Of course, human beings are all different. But we’re looking at the whole population. Some people might be fine but in general, age is most important.

To choose a clinic, I would suggest to any couple that they must spend an hour going through the HFEA website and looking at the success rate of all the clinics, so they choose what is best.

If you have one that is repeatedly on the top and one repeatedly at the bottom, you need to stay away from them.

There are additional factors – nearby, comfortable with them – and that is why, and I always tell couples when they come to see me – you decide. But to me, a couple come for having a child. You need to think, I’m going to spend so much money – or if NHS-  so much time with a clinic with such a lousy rate, why would I go there?

Ask your GP to send you somewhere else. Couples must have power in their hands to try and change these things. There are clinics – NHS and private – where their rate is so low, they should not be there. It’s not just one year, it is consistently low. Why should they be there? Everybody should be reaching more or less the same.

The HFEA publish rates according to the age of the woman. That’s because up until now, it is what we know is the best parameter.

People say you measure the AMH (egg reserve) but it is absolute rubbish! Many of the big guys in IVF said this will determine how we advise. But a publication in BMA (top journal in medicine), they had a group from university and followed women in 4 years- one with v low AMH (so everybody thinks: very low chance of pregnancy) and normal AMH. They followed them up and found natural conception was the same for both of them.

It makes no difference even with age. They had 200/300 in each. No difference.

A: That’s really interesting.

Low AMH only effects how many eggs we can collect from a woman; but it has no impact on live birth. It does have an impact on live IVF, as you have less chance of freezing embryos. We should be honest with couples, our only parameter that is important is age.

So, you go to the site, look for ‘find a clinic’, and then it will give you the region etc. Each one provides figures. Everyone starting stims has to be registered with the HFEA. Once registered, the HFEA will follow the progress of the woman being treated. If they don’t find them, they follow up with the clinic.

A: If you decide on private clinics there’s also an exploitation problem. How can couples avoid being exploited and get the best value?

T: It’s very difficult. The HFEA has not been able to tackle it. Patients are left to their own devices. The HFEA should take more responsibility in getting centres to be clearer, like put on their websites that the add-ons offered are not evidence based or accepted by main groups like Royal College of Gynaecologists.

They commissioned a centre in Oxford for stats and to look at add ons in IVF. From immunological tests, PGS, intravenous lipid (said to enhance implantation), endometrium scratching, assisted hatching; these are all the add-ons. They said maybe scratching will benefit – although recent evidence says it doesn’t…but there is no evidence to support them. It might work but there’s no evidence. Those people who provide it, must provide the evidence. It is not good. They just take one study that shows it works and not the others.

A: So, it is down to the patients to do research and make an informed decision on what they know, how they feel and what their budget is.

What are the best tips? How can I help myself succeed?

T: There are things. Lifestyle is very important. Just this week, something came up from Greece, a department from nutrition, for a couple going through IVF, those having a higher Mediterranean diet have significantly higher chance than those who do not. It is important to look at this. Eat healthily. Just a healthy diet. Fresh fruit, good veg, olive oil. Good exercise – not heavy. Heavy is not good because it has an effect on endocrine function with stressful exercise. Whatever is easy; don’t exert yourself. Something to enjoy and keep fit but not to do it to keep weight down and sweat…

Of course, the usual things smoking and drinking. Smoking you should stop completely. Alcohol, one glass or whatever or nothing…but this should be starting from women should start from when they are thinking about having a child. I read somewhere about Trimester Zero.

Take multi-vitamins and minerals. I’m not sure it’s that helpful for fertility, but for the baby.

There is more evidence from Israel–that taking the higher dose of folic acid may reduce the risk of autism. It first came from Australia a couple of years ago. So, you take 800mg instead of 400mg. I think it helps with having a healthy child – and healthy adult.

The ideal for BMI is 20/25. Below 30 helps with a lot of things in fertility treatment.

You could be veggie or meat eater. Lifestyle, weight, smoking, alcohol excess. Once a couple decides they are going to try and have a child then you think: I will do that for the child. It’s for the woman and the baby.

A: Nice way to think about it. I’m doing it for the baby.

T: Yes, it is mostly to do with that. As to how much it helps with fertility it is debatable. Same with complimentary therapy. Not clear…

A: But it can compliment…

 What advice would you give to someone deciding what treatment to have? I knew we wanted IVF even though you said we could have tried other things first for example.

T: I face it every day with every couple who comes to see me. I give percentages with what I know, and I will make a decision with them based on two things. One, the age of the woman and how long they have been trying. Age will influence how quickly we need to move to higher technology. Length of time, after 3 or 4 years, couples are desperate to get on with it. So, going for IUI or something else and if it fails first, second or third – you are emotionally drained after that. To take them to IVF, they already have their emotion strained and it causes strain between them as a couple, even if it is donor sperm for gay or transgender or whatever, these two elements are important.

I give them an informed opinion and the couple make an informed choice.

A: Why might it not work?

T: You have to do all the tests. Ensure uterus has no fibroids etc. impinging the cavity. Check any issue with how eggs are getting out, how the ovaries are – cysts etc. Uterus needs to be clear. Once that’s done we assess how to stimulate and I do use AMH and FSH tests on day 1 or 2, to decide how am I going to stimulate.

If they have high egg reserve it is easy and if low, we decide how to do it. I give them options. Full throttle, intermediate or low medication; and we decide. It is centred, individualised – I am very much into individualised advice. No rigid thing. I chose what I think is the best approach and take from there. End of the day, they decide what option they take.

 A: What about abandoning? Can be very frustrating? OHSS (ovarian hyper stimulation syndrome)?

T: Haven’t had OHSS for donkey’s years! It is ‘Doctor made’. If you choose the right thing…it comes with experience. I do stop sometimes, but mostly because of poor response. I do ‘costing’, I’m pretty good at it – you stop the drugs for a couple of days, you manage it. You do a blood test every day and make quick decisions.

IVF PROCESS QUESTIONS

A: Can you tell us step by step what the IVF process is?

T: It is having more eggs, and more sperm together with very little distance between them. That’s what it is.

So, you stimulate more eggs to come out from the ovaries and we look and analyse and monitor with ultrasound and blood tests- hormone tests, what we call the follicle growth because we cannot see the eggs.

We usually give 2 types of injections. One is to stimulate the follicles and the second is to keep the eggs inside so you do not release before.

The stimulating drugs have many names. To me they’re all the same. They do the same thing. Some say my drug is better than yours but I say it’s Pepsi cola, Coca cola, what do you like, it’s a taste!

Mostly I think it’s important that you provide the drugs for the woman to use EASILY! That’s why I go for the easy option. Maybe a little more expensive, but it’s easier. You’re already under so much stress, then you have the stress also – oh 2 drops have stayed in the bottle, I couldn’t get it out, what do I do?, or there is so much air in this, is it going to go into my bloodstream, give it something simple. The stress is already too much.

So, to me that’s what the difference is. The administration for women so they can do this injection at home. But from an efficacy point of view, they’re all the same.

The other drug, the controlling ovulation drug, there are two types. You have to have a time limit on it, so you start it before a period starts, and I usually use a nasal spray for that rather than injection, to reduce number of injections.

One: Gonadotropin-releasing hormone agonist (GnRH agonist) is used for luteal down regulation schedule of drugs.

Mid luteal phase, a week before ovulation, then you have the period. It stops the Luteinising hormone and the follicle stimulating hormone from the pituitary gland, so the body does not think that it is time for ovulation – the body doesn’t know that you’re going for IVF, just this idea that there is high oestrogen when we give the stimulation and with this the impulse comes in that you’re ready for ovulation. The surge comes up with the Luteinising Hormone coming in, and the eggs get released.

With this you need about 10 days to two weeks. So, you start a week before period, 2 days after that you come in for a scan and blood test, if these are alright, then you start the stimulating drug

With the antagonist, which is the other type of drugs, you start before the agonist because it does not need the time, it’s immediate.

A: Short protocol?

T: Yes, but I don’t like this term – short and long. But with the short protocol, you start stimulating with Follicle Stimulating Hormone (the same hormone all humans produce, in the man it stimulates the testicles, and in the woman ovaries) and it does what it says on the label. We give it much higher dose than physiological, as we’re aiming for more than one follicle.

In the antagonist group, once they reach a certain size or basically 6 days after starting stimulation, you add the antagonist. And it works immediately.

With both types of protocols (these are the most common but there are so many types of variation) you try and start at the beginning of the cycle and you give daily injections and you have monitoring with ultrasound. On average, you’d need about 4 scans in that period of time, in general you need about 12 days of injections. When you see that there are a good number of follicles at a good size – 18mm and above – then you have the trigger injection which is HCG, pregnancy hormone, (in the old days until now you collect it from women’s urine).

So, you give that because it’s exactly the same as the LH. Because we’ve suppressed the pituitary gland, we have to override that but it also gives us better control.

(When Edward and Steptoe started they used to give a blood test every 4 hours when they reach that stage, to find out when the LH would come. Then they go ahead and collect the egg. Mostly they would have only one egg.)

This is the advantage of using agonist and antagonist, it gives us better control for the timing of when to do the egg collection. So, we give the HCG and 36 hours (between 34/38 people still haven’t decided what’s best) but usually 36 hours later you do the egg collection.

So, for this, it’s usually done under intravenous sedation, but sometimes in Europe with local anaesthesia.

We use trans-vaginal ultrasound scanning and guided by the scan (which is the same we use for monitoring) while the woman is asleep/sedated we pass a needle into the follicle and apply some pressure, suction and suck fluid out and with it the egg also comes out.

It is transferred to the embryologist next door or side by side, sometimes next floor up, into the lift, and they look at the eggs and separate them.

The process takes about 15/20 minutes. The woman wakes up and after that, she stays for a couple of hours, and goes home.

At the same time of course the male partner provides a sperm sample, or if you have a separate sperm donor you have it ready for the fertilisation. It is usually done on the same day.

They wait for a few hours. The person who does it takes time to prepare the sperm, and they think it is better to leave the eggs for a couple of hours in the incubator, and then they put them together.

If it is IVF, then you just add thousands of prepared sperm – they wash and take away the plasma, just the sperm cells, and they go through a column of culture medium so they select the most active and hyper-activate it, then they add it.

If it is ICSI, you strip away the cells surrounding the egg, the cumulus, and look at the egg. If it is mature, they take these and select the most normal sperm and inject one under a microscope.

Then they put in an incubator, they check overnight and the next day, you see what’s fertilised.

After fertilisation, you can see the nuclei, you can see the sperm still surrounding it because only one enters then the zona pellucida (the membrane) ‘shuts the door’ and it’s just one. If more enters it becomes abnormal.

Day 2 you see 4 to 6 cells.

Day 3 there are 8 average and day 5, the blastocyst.

Usually we do a day 3 or day 5 transfer. Mostly day 5 so we can select the best and transfer only 1. Chances are more or less the same but with a higher multiple pregnancy chance because on day 3 you transfer 2 or 3 depending on age.

Putting the embryos back, you take a catheter, and gently thread the embryos into the uterus and you just leave them in there. They are kept with very small amount of fluid and you just inject there, and take the catheter out.

Remember the uterus is not a hollow thing. It’s a closed book you could say, really tight between the sheath but you have to remember it is three dimensional, so from all the sides it is held in.

A: Lots of women don’t want to get up because they feel it will fall out!

T: The evidence suggests it makes no difference if you get straight up. But it doesn’t matter if you want to lie down, that’s fine.

So there you have it ladies and gents. Have a nice lie down. Its fine. Personally I think that’s pretty good advice for life.

Dr. Talha Shawaf

Dr Shawaf is a Consultant in Gynaecology and Fertility management including IVF and similar therapies for more than 30 years. During this long span of time he was involved directly in assisting tens of thousands of patients. He worked with many of the early pioneers in the field as like Professor Ian Craft at the Wellington and Cozen’s House London Fertility Centre, and at Bourn Hall in the early days of IVF. He was a founder of the Assisted Reproductive and Gynaecology Centre (ARGC) in London and led the care in the Centre for the first year. From 1995 to 2013 Dr Shawaf was a senior consultant and led the fertility service for many years at the Barts and The London Centre for Reproductive Medicine, Barts Health NHS Trust. He is a leader and an expert in IVF and related fertility treatment, well known nationally and internationally with more than 100 research publications and many more presentations nationally and internationally.

 

 

 

Fertility Fest 2018

“That sounds fun…but a bit dodgy!”

“Fertility and arts? That’s a bit weird.”

“Who would even go to that?!”

When I told some of my friends I was going to an Arts based festival all about fertility, infertility and the science of making babies, these were a few of the reactions I got.

It was helpful to be reminded that outside a relatively small online community that I am actively involved with, there are thousands – millions – of people for whom talking about fertility so openly (and in a theatre! Shocking!) seems…what? A bit weird? Overkill? Unnecessary? Cringe?

I don’t really know.

I supposed I have become desensitised to the stigma of talking about fertility because I am doing it every day.

I forget that, for some people, talking about it then making art about it; sharing that art; opening discussions and conversations and bringing experts, artists, patients and other audience members together could come across as “dodgy” or “weird” because of the subject matter. But making art when you go through something traumatic…well, that’s what art is! So why should it be ‘dodgy’ that there’s an arts festival about fertility? To me it seems so very natural.

But I forget that the stigma is ingrained. The taboo is still there. Have stigma and taboo ever helped anything?! Pretty sure I know the answer.

I forget that for most people it’s not normal to talk daily about an inability to conceive a child naturally. To talk about miscarriage, still birth, adoption, IVF and other fertility treatments. To talk about how it feels to be told you will never be able to have a baby. Or what it feels like as a man to be told you have zero sperm. Or how it can impact relationships, careers, friendships, finances: every part of your life.

I forget.

So, it was helpful to be reminded exactly why Fertility Fest is so brilliant. Why it imperative, vital, necessary. It was programmed by the fantastic Jessica Hepburn and Gabby Vautier, who in their own words are: ‘two sides of the fertility story’. Jessica has had 11 rounds of unsuccessful IVF and Gabby has IVF twins after 4 rounds of treatment.

Their theatre programming credentials are phenomenal. They have long track records in theatre and the 6-day event at the Bush Theatre in Shepherd’s Bush, London, was a clear reflection of their huge experience. With my own knowledge of the London theatre scene I know it is no small thing to commandeer an entire theatre in a great location for almost an entire week, morning ‘til night. It is A Big Deal.

With a cross section of artists performing everything from extracts of plays, book readings, songs, spoken word…and with every single event including a Q&A with the artists as well as experts from the fertility world, it was jam packed with talent and diversity. There were fascinating and important topics; heart-breaking and uplifting stories, inspiration and beauty. There was laughing! So much laughing.

 

We all know that talking helps. Whatever you’re going through, talking and sharing and learning and empowering yourself to understand: helps. The evidence was clear – every event almost ran over time because once the audience were offered the floor, you couldn’t shut them up! Everyone wanted to talk. Everyone wanted to share.

I learnt so much. I learnt about how it feels to cope with childlessness and what it’s like to adopt. I leant about the glaring lack of fertility education in schools. I learnt about the myriad ways artists use their experience to produce stunningly powerful art and how it can help them and their audiences to process what’s happened to them and to heal.

I also learnt not to hide away my own story. Telling people that you are a Mum can feel a bit like a confession when you’re hanging out with a lot of people who are desperate to be a Mum and can’t. But I learnt that my story is just as valid even though it was successful in the end.

I am a Mum who went through 10 rounds of fertility treatment before 1 successful round of IVF.

I am a Mum who understands what it’s like to feel desperate, despairing, disbelieving. I am a Mum who gets it and will never, ever forget it.

So, I will keep talking, sharing and supporting and I will advocate for more talking, sharing and supporting.

That’s why I don’t think a Festival using art to talk about Fertility is weird. Or dodgy. I think it’s vital. And powerful.

Thank you to all of the artists and especially to Gabby and Jessica, who were so welcoming and warm to every single person who walked through those doors. It was a very special event which will stay with me. Read more about it here

 

 

Help! I Need Somebody!

We are sitting in our NHS Fertility Clinic at our first consultation. The consultant is asking me to tell her the dates of my last 3 menstrual cycles. I explain they are not regular and the only way I can remember the (totally erratic and in no way memorable) dates, is by looking at my “period tracker” app on my phone. But it isn’t loading.

 She tells me to stop looking at my phone and to tell her the dates.

 I tell her I need to look at my phone if she wants the (f*&%^-ing) dates. (I don’t actually swear at her). Then I cry.

This doctor and me; we don’t seem to be…getting along.

The doctor says I am ‘clearly stressed’ and she’s going to refer me for counselling.

PFFFFFFFT!!! I think: I don’t get stressed. I am a very capable person. I have never had counselling and I don’t need it now.

Oh, how much I have learned since that fateful, emotional, stressed out day. How humbled, grateful and aware I am now about what it means to recognise when you are stressed and when you need support. How to take ownership of how you’re feeling. How to say: I need help. And be OK with that.

I had an amazing counsellor through the amazing NHS. And she changed my life at that point. I felt safe, supported and ‘held’. I got stronger because of my counselling. Acknowledging that I needed help was not a sign of weakness. It was a sign of strength.  

So, of course for my book and the blog and Instagram, this is a HUGE message that I feel very passionate about and I believe is sooooo important to get the hell out there!

Please. Please get support if you need it. It doesn’t have to be counselling, but counselling might be a good place to start. And FYI: if someone else goes through what you have and ‘coped’ without counselling, that is neither here nor there.

It doesn’t mean you are ‘weaker’ than they are. It doesn’t mean they get a medal at the end of it all because they didn’t seek help. They might just not have needed it and that’s normal too. 

It’s all normal. We are all normal whatever we need. We just need to learn to UNDERSTAND, honour and love ourselves enough not to berate ourselves for needing it.

I interviewed an absolutely wonderful fertility counsellor who explains a bit more about what counselling can do and why it can help people going through fertility.

 Ladies and Gents, meet the gorgeous, kind and generous: Vicky Parkin.

Vicky is a specialist infertility counsellor and an holistic fertility therapist which is AWESOME. She has some brilliant insights which I hope will help.

A:Vicky, why did you train?

V: I had trouble conceiving both of my boys and that prompted me to do two things. I trained as counsellor because like you, I realised what a massive difference having counselling made through my journey. I also trained as an holistic fertility therapist, as this made a huge difference to me getting pregnant.

I work as a counsellor independently, and for various fertility clinics.   I have also recently set up Fertility Fit. My idea is to forewarn people and get them into the best place they possibly can be before they even start treatment. I think that’s becoming more and more important now people are paying for their treatment.  I often see people who are going through a cycle and they say to me things like –I hadn’t done that, I wasn’t really fit, I wish I’d stopped etc…

It just occurred to me to revisit the training I did 10 years ago to try and get people in a good place before they even start. I would like to see everyone who has fertility treatment do that before they even think about having treatment.

A: That echoes something my doctor said when I interviewed him. He talks about trimester zero. It’s good to hear from a medical perspective that that’s what people should be doing.

V: Yes, and I know from my own experience! It took me 7 years to conceive my 2nd child ,in the 7 years I tried fertility treatment which didn’t work,  I had endometriosis which left me in agony. My aim to try to get pregnant actually changed at this point to: “I just want to be able to play with the child I’ve got, and not be in pain”. And for me, seeing a therapist who helped me change my lifestyle, my diet and my stress levels stopped my pain- but also got me pregnant.

I’ve had first-hand experience that it does work. Initially I had tried doing it myself. Self-medicating, researching on the internet and it didn’t work for me, I needed someone to look at me from an impartial point of view. And that’s where fertility fit came in, I just feel that people need somebody to help them get it all right, to be “fertility fit” in the lead up to treatment in a really un-stressful manner! So, that’s my vision.

I continually see people who say to me, “I stopped drinking coffee this cycle, but now I am drinking it cos I read something else saying I should” so the conflict was massive.

I really notice the difference it makes for people who are having some support. I think that most who are having their treatment when they’re offered counselling think, ‘I don’t need counselling, I don’t want to see some weirdo who’s a bit of a hippy!”.

And in a way, they’re quite right. If they weren’t having fertility treatment, they probably wouldn’t need it. So, it is a bit conflicting. I also think quite a lot of people are a little bit frightened of being labelled; they fear someone asking for counselling means they can’t cope and worry that their clinic may say they can’t have any more treatment because of this.

A: And also frightened of it because I think there’s still a stigma to having to admit that they need support, but I want to try and emphasise accepting support is not a weakness and in face recognising when you need it is one of the most important parts of this whole journey.

V: Absolutely. Interestingly I was sort of recognising this stigma and I think it’s about counselling if I’m honest – not ‘support’. In one of the clinics we changed the name from counselling to support, it was offered to everyone in an effort to normalise it and the difference in uptake was huge. This shows when people thought they were getting someone to support them through their journey, as a matter of course the acceptance was completely different to when someone said, do you think you need some counselling.

Support counselling is divided into three main sections. Before, during and after treatment and some of that can be very practical.

People come to see me before they even start and in this session we can do a lot of practical things like make a plan for their 2 week wait; decide whether they are going to work through the first bit (most don’t even know there is the possible option of being signed off by their GP). They don’t think anyone gets signed off because anyone they might know going through IVF seems like they’re coping so brilliantly well, juggling everything.

So, support counselling before you start can be a really practical time.

A: When do you think people should seek it if they haven’t been offered it?

V: I think in an ideal world everybody would have a session with the counsellor before they even start treatment. It’s really hard to access support when you’re actually struggling. If you’ve already met your counsellor, you will probably be able to face making contact –  you know your counsellor and it’s much easier to drop me an email or make a call and ask for a session.

I predominantly now work through Skype or phone and again, I think that has made a huge difference. I was finding that clients were saying, I would like some support but I can’t have any more time off work. Via skype I can get the time that works for people to make it less stressful rather than adding to the stress because they’re trying to juggle another day off work.

I firmly believe having IVF is a little like having a full-time job. If you’re trying to do your “IVF full time job” at the same time as trying to do your full time job, it’s going to be stressful! I don’t think people are told this – they think they can just slip in IVF alongside their normal life and actually it isn’t like that at all.

A: Yes, you need to concentrate on it. Not just for the practical side, but for your head.

V: Most GP’s will consider signing you off. One of the strategies I say to people is, don’t leave that until you start your IVF. Go two months before, tell them “I’m going to have IVF and I’m struggling” if the GP says no, at least you’ve got time to come up with a contingency plan, but you don’t want to be faced having to organise that during treatment.

Forewarned is forearmed so eliminating as much stress as possible before treatment, is a really good idea. Simple things can take the pressure off immensely.

A: It’s all about trying to eliminate stress isn’t it. Your approach is so practical and sensible. Having a plan.

V: Yes, before, during and after. And if it hasn’t worked it can be such a difficult time. Allowing people to express how they’re feeling and to recognise that a huge amount of people who have had a failed a cycle will be going through a grieving process.

We know it will be different for all of them, but what we also know is that the rest of the world around them will just think they had IVF that didn’t work. We know the emotions they’re going through maybe similar to those they would be having if they had lost a close family member. They’re maybe devastated, they maybe grieving, and people around them just don’t see it, they have “lost” nothing concrete – they are maybe asked if they’re going to be back in the office tomorrow, in a way they never would if they had a family bereavement – yet we know the feelings are the same

I think it can be quite frightening for people. Even the person experiencing this grief, doesn’t know why they feel so bad and may not recognise it as grief. They don’t understand why they’re feeling bereft. Talking to people, understanding that it’s perfectly normal to be grieving at this point and allowing themselves to be sad, to cry and to know that they will be ok is vital. I think some people get very frightened that they’re feeling so dreadful. It can be a relief to understand where these emotions are coming from.

A: That’s so important to validate your feelings and to say this is normal; it’s ok that I’m feeling this devastated.

V: Absolutely. Another way that fertility issues are unique, is that quite often both partners are going through this really traumatic event at the same time and that doesn’t happen in life often – one of very few situations I can think of is if a couples’ child is ill.

Usually you have one partner who is experiencing trauma and the other can be supportive. What I also notice in my work is when a treatment cycle doesn’t go well generally the couple deal with their grief completely differently. One person’s way of processing it is to talk about it over and over again, revisit it, then talk about it again. The other persons way of coping maybe to disappear into their cupboard, shut themselves away. They don’t want to talk about it with anyone, they just want to be left alone. That’s challenging because often couples haven’t got anyone else to talk to. No one else gets it.

A: Yes, I got to the point I didn’t have anyone I could talk to without some sense of guilt. You end up thinking, who can I talk to that can understand and offer me the support that I desperately need without me having to feel guilty about burdening them. That’s when I found my counselling such a lifesaver. I could just get it all out and you walk away feeling that someone gets you.

V: Yes, absolutely. Also, I think one of the other things I hear a lot, because IVF is so out of people’s experience and the effort of telling people about it defeats the point – you go to all the effort of telling your best friend and she says just relax and it will probably happen and then you could throttle her!

So, you’ve wasted all the effort of explaining it for him or her to say something really inappropriate, not out of unkindness, just through lack of understanding. Lack of ever being in that position. That’s what’s quite unique about fertility. Most people have experienced someone who’s died, or someone who’ve had cancer, but most people haven’t had any experience of someone with infertility, so when you talk to them they’re a little bit: ‘I don’t what to say’ or they do the ‘relax it will probably happen’.

A: Yes, well-meaning but uniformed ‘advice’ from friends can be so upsetting. It makes you think you’re doing something wrong.

V: Also, I think the other issue surrounding infertility is very often you start your journey with a peer group who are supporting you, but it tends to be that all the people start trailing off, getting pregnant, having babies, and then you start having that with your IVF clan too. You have a support group and they get pregnant and you think, oh now I’m losing these people. People getting pregnant can be incredibly difficult but it is very likely – your peer group will be probably at the age where babies are happening. So that can be really challenging for people to deal with as well.

In counselling, we can discuss how to cope – and think about how its ok to give yourself permission to say to people: it’s too hard to see you at the moment.

A: Yep, I agree with that. There were a couple of friendships I took a step back from at the time because I realised they weren’t helping my mental health. I had to take a step back from them to preserve that. To have some guidance on how to do that is so useful.

V: In a practical way with counselling, we just talk about how they can cope – maybe they are saying no to any family events, a wedding etc. and when you investigate it’s because people are asking them, “when are you going to be having a baby?”, and that’s so incredibly painful. But again, just having strategies and things to have in your mind, so that when anyone says, “when are you having a baby?”, maybe you say, “actually it’s incredibly painful, it’s not something I want to talk about”. It makes people stop and think. It’s also being able to say, if people ask, “are you having trouble getting pregnant?”: “it’s actually really private and I don’t want to talk about it”. You don’t have to give everything or nothing.

A: You take the words out of my mouth. I ended up using a similar thing. I used to say, ‘thanks for asking but I don’t really want to talk about it’. That was my line.

V: Yes exactly, just having that line in your head gives you a shield that protects you. It makes it all much more manageable.

A: I love how much you’re talking about strategies. It makes you feel calm – whatever happens, I have my strategy in place. I know how I will respond. So useful.

V: It shoots me back to the beginning. If they weren’t having these problems they wouldn’t be having counselling, because actually they are fine, but they’re going through a very tough time so it’s making it as manageable as it can be. Part of that is talking about strategies, control. So many people feel so out of control.

This is a big thing they thought they had control over – they thought they would stop contraception and be pregnant in a jiffy – and that’s been taken away. And now someone is telling them when they should have sex, what they should eat, what they should do to improve or not do…suddenly they feel like it’s all out of their control. So, we talk about how to feel back in control. And that goes back to Fertility Fit. It empowers people to take control of their fertility before they start – knowing a bit about your fertility and knowing you’re in a really good place.

A: I also found I just started to feel a lot better when I had my lifestyle overhaul because mental health was improved, energy was better – I felt in control and empowered as you say which is a lovely side effect. It also takes the pressure off – yes, these things might help get you pregnant, but also, do them anyway because you’ll feel happier.

V: Yes, spot on. I talk a lot about if you can do these healthy things for 80% of the time, don’t worry about the 20% where you have a really stressy day, eat rubbish etc. it doesn’t matter. A lot of people hear all the things they shouldn’t do – don’t be stressed is the most stressful thing anyone can say!

You need to be told how not to be stressed and given some strategies to try. I think that: ‘you should be thinner’ doesn’t help. Don’t tell someone with PCOS they should lose weight, it will be really difficult for them. Tell them a few ways to help. It’s more about being very positive as opposed to: “I don’t think you should do that” or “you must relax” which I hear more than anything.

So many people say to me “if I hear anyone else telling me to relax…I’m going to throttle them! It’s so stressful…I know I should relax but fertility treatment isn’t actually conducive to feeling relaxed!”

A: I know a lot of people actually like hearing about fertility success stories, but at one point, I just felt like it was another pregnancy announcement that I was supposed to have a positive response to!

V: I think most people who are having fertility treatment are feeling fairly inadequate anyway so it just compounds that feeling of hopelessness. Positive strategies are really important as is support.

I guess one of the saddest things is that most of the clinics have a limit to the number of sessions of support you can have. This can be really challenging for people. Most of the clinics have one or zero sessions of free IVF. So, therefore people are paying for their IVF and counselling becomes a luxury item which is really tough and it is so varied from clinic to clinic.

Some offer 1 session, some 6, some 3 for the whole time you are there. So if you had 4 rounds you would get less than 1. So, there’s a very varied level of support and that can impact on people’s decisions on whether to access it.

A: What about if you’re not in active treatment, can they get it?

V: As far as I’m aware, if you access support through your GP you wouldn’t necessarily get a fertility specialist counsellor. I certainly think that makes a massive difference – not having to explain what ‘stimming’ is for example.

A: Draining isn’t it

V: Yes. I don’t do any counselling referred through a GP, which is a shame and I guess if people were referred at that point, they would be going into treatment a little bit more prepared & resilient.

A: I could have benefitted from seeing someone early on. Early access would be helpful. What can someone expect from their first session?

V: I usually start by asking people to just tell me what’s happened to them up to that point. It’s nice if they tell me from the beginning i.e. we started trying 6 months ago/5 years ago – I think that’s really relevant, how long has this been happening for them, have they had treatment at a different hospital, is this their first go.

Quite often in the first session we spend a lot of time just talking about what’s happened; how they’re feeling; how they are coping individually and as a couple. Quite often I think people are very aware of what they need: support/strategies, stress relieving techniques. It’s all about listening and supporting. There’s never a first session which is the same. 

A: Do you do couples counselling?

V: Yes, I’m happy for people to see me as a couple, individually or to dip in and out; some together, some alone. Quite often I see a couple to start with and sometimes it become apparent that one half doesn’t feel they need to talk about it; but they might say: “it helps me if you talk to her because then I haven’t got to talk to her”.

Sometimes I think people will start as a couple but one of them needs more support than the other. I notice men in particular come in the lead up to treatment – they like a plan and being proactive, but tend not to come between cycles quite so much.

Women really seem to want ongoing support. They just want to be able to offload and talk about all the stuff that their mum/sister/ best friend with the brand-new baby just doesn’t understand.

Sometimes men come by themselves. One man in particular who had found out the reason they couldn’t conceive was because he had zero sperm, so they were faced with probably of using a donor and he really needed to process that privately. Without anybody around.

A: Trying to get men to counselling can be a tricky old thing can’t it?

V: Absolutely and again, one of the things I hear more than anything, is: “I didn’t think it was going to be like this”.

If there was a way of people touching base before they start or perhaps in a less formal situation – it’s a shame there’s this ‘thing’ about counselling. Maybe it’s as simple as just calling it ‘support’ or ‘strategic planning’

A: It’s exactly what it is – strategic planning. Someone I was talking to was saying that it’s the one thing about the U.S they like, people just see a counsellor or therapist as a matter of course- it doesn’t have the stigma. The more the conversations are opening up about fertility and IVF, the more we can break down the idea that accessing support is a sign of weakness. And with any mental health treatment/therapy, there’s too much stigma.

V: And part of that starts with the clinics. It’s got to be seen as integral to treatment offered before you even need it.  For me the sign of a really good clinic, is when you see someone who has had 3 or 4 cycles that haven’t worked and they are still saying, my clinic was amazing, I had great support and they were really lovely.

If someone is telling me its good when it doesn’t work that’s the sign of a really good clinic. One of the things I continually hear is that for the first 2 weeks people are quite involved with their clinic. They are back and forth for scans, egg collections, transfer and then the clinic say: Good Luck! See you in 2 weeks!

I think ongoing support through the 2 weeks helps people to feel less abandoned in that moment.

I do think that if you have a cycle that doesn’t work, you may need some time to be left alone before you talk about what you are going to do now, but you do need the continued contact with the clinic.

A huge thank you to Vicky for lending her valuable time to talk to me.

If you want to get in touch with Vicky, here’s her website and check out her new venture Fertility Fit too  www.vickyparkin.co.uk & www.fertility-fit.co.uk

In summary, remember: accessing support is a sign of strength.

I might get badges made and wear one on my forehead. OK not badges. Stickers. Or maybe just a hashtag. YOU GET THE IDEA!!

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Embracing Fertility & ‘The Positivity Balance’

This week is Mental Health Awareness Week. I have made content for BBC Radio 2 around the topic of Mental Health Awareness before in my other life as a producer. When we were in the middle of our own fertility journey, I organised a Cabaret with all my super talented performer friends to raise money for Mind. It’s a topic very close to my heart.

So, this blog is about techniques that can help you cope with a your mental health while you’re going through a fertility struggle and I thought I should maybe interview someone who really knows what they’re talking about…

Naomi Woolfson is a mindfulness based cognitive hypnotherapist, trained in Emotional Freedom Technique. She has a coaching business as well as a dedicated Fertility Support website (www.embracefertility.co.uk ) with online courses, community and inspiration. Which is pretty bloody awesome!!

Naomi reaffirms a lot of the life-changing stuff I discovered on my own fertility journey…while being properly trained and having a very established business. Handy!!

I particularly love that Naomi talks about the dangers of worrying that you’re not being positive enough and thinking that’s why your treatment isn’t working. I got myself into this state at times so I know it’s easily done.

Let me reiterate her point: that’s not why it hasn’t worked.

Being positive is wonderful and I believe there are ways you can feel truly content and peaceful even throughout a fertility struggle (and even if its not every day). But please do not berate yourself if your affirmations and vision boards aren’t working.

Don’t get me wrong. I believe (strongly) that you can experience a different reality depending on your mindset (and I practice it myself with daily gratitude and other self care habits.)

But it’s NOT YOUR FAULT if all your best, tip top, fist punching, water drinking, yogi-karmic positive thinking… doesn’t result in a healthy pregnancy and baby.

IT IS NEVER YOUR FAULT.

I constantly work on my self care – it’s like brushing my teeth. Having breakfast. I check in with myself all the time to see if I need anything. This DOES NOT mean I’ve got it all figured out. It simply means I can give myself what I need when I need it.

I have started to call my daily self care: The Positivity Balance. Sorry if that sounds a bit wanky. Just, you know, trying to “coin a phrase” if you will…

Finding the balance between positivity and mindful awareness is a TOTAL game changer. Your head, your mental health, your experience of your fertility struggle can change when you practice this shit. It’s total f-ing magic.

Naomi and I had a lovely long chat; so here’s our interview in full. Read on for a really useful perspective:

Tell me why you set up your business?

 

I was going through fertility treatment myself. I was diagnosed with endometriosis when I was a teenager, so pretty much from that point was told I would need IVF to conceive, (as it turns out both Naomi’s children were conceived naturally) and then when we started trying, I really wanted to find positive ways to support myself and it seemed to me everyone was just talking about treatment.

I wanted to do everything I could before doing treatment, and I started learning about the mind body link – I thought I’m really stressed out, is that harming my fertility, how can I switch that? Also I wanted to have friends to talk to about it; but none of my friends were going through it. So, I thought: I’m going to have to make friends who are going through it – and that’s why I started the support group, to meet other ladies.

So you started it before you got pregnant?

Yes. We’d been trying for 2 years and I started the support group. Then ran the group for 2 years before I got pregnant.

Talk to me more about the mind body link?

When you’re trying to conceive you read and do anything you can to help yourself. You read that eating pineapples might help, so you buy 10 pineapples, you read needles in your forehead might help so you try acupuncture, you do anything to try and fix this problem and get pregnant.

Everyone keeps telling me that stress impacts on your fertility negatively but I was going through a rabbit hole of ‘if you think positively, just imagine you’re pregnant and this baby will arrive…and then of course when it didn’t happen, I then thought I’m not being positive enough!’ and getting more and more depressed, because I was trying to be really positive and you can’t just MAKE yourself be positive.

So I thought there’s something in this but how do I access it. I want to feel happier, but how the hell do I do that when I’m this low. That’s what I got interested in. My blog is about how to feel good now…then your chances of pregnancy are greater – for many reasons which I write about in my blog – but that’s not why we’re trying to get you happier.

If someone’s really happy, it’s not that having a baby isn’t as important, but THEY then become the most important thing again rather than, ‘I’ll only be nice to myself once I’m pregnant’.

This is such an important message. I just saw someone posting on Instagram: ‘I can’t visualise myself with a baby, does that mean I won’t get my BFP because I can’t picture it?’, I commented and said it’s normal to feel like that, but no it doesn’t mean that you won’t get pregnant.

It’s key to realise that just because you’re feeling sad, it doesn’t mean that nothing will work out.

Exactly, it can go very wrong. You can get really pulled in…I really know that the only thing we experience in life is the world through  our own thoughts and perceptions. So, I talk a lot about how our thoughts do create reality. I believe that. But it’s not in the way of: if I sit here and wish hard enough for a baby, a baby will magically appear. More – you need to get yourself happy, open and accepting of all the stuff that’s being thrown at you and that’s what got interesting to me…I didn’t get pregnant until I’d really come through this and started seeing the good things coming out of not having a baby yet.

I really wanted one, but it wasn’t this “if I don’t get pregnant this month, the world will end”. I shifted from that into the next phase. We took a break after our miscarriage and it  felt like the baby that I miscarried…he wasn’t supposed to stay. I had a very strong feeling that it was a boy. And I felt that ‘he’s not the baby we’re supposed to have first’. If it had happened to me 2 years before, I would have crashed and burned. I wouldn’t have coped at all. I was more depressed when we were going through IUI 2 years earlier than I was after the miscarriage.

People said: ‘but the miscarriage is so much worse’, and I said yes, but it’s the perspective you have on it. I just felt like it was amazing we had been pregnant – that we’d managed to create a child with his sperm and my egg. Wow! That in itself proves that its possible, where until that point we didn’t know if it was possible.

So, you started your blog- when did you start training as a mindfulness coach?

About 6 months after I’d been running the group. I did my Emotional Freedom Technique training first, and then the cognitive hypnotherapy the following September. I’d been writing, speaking to people and I did the volunteer training with the Fertility Network and the lady running the course asked if I had thought about helping people for a living and I thought – no I haven’t but yes!

And have you found that your work has made a massive difference to how people cope?

Definitely, I think the biggest thing is when someone realises themselves that they need help because that is the first step. Even if all they did is say, I need help: then come and sit with me in the room in silence…that massive step of recognising: I need to change something. My thinking and my thoughts are negatively impacting me now.

So, people come and they say: right I need to do something, I don’t what it is but that’s the start point for therapy. It’s generally overcoming anxiety, overcoming this dread of what if this isn’t successful. They don’t want to go into treatment being petrified that it won’t work, when they’re so stressed. They just can’t go through the process. More people drop out of doing treatment through the emotional impact rather than medical prognosis. If 10 people stop doing treatment the reason for most of them will be because they can’t hack it anymore and you can change these things so easily because it’s a way of getting to know your thoughts and patterns, learning techniques to strengthen your resilience.

That’s it isn’t it –  strengthening resilience. It’s going to be hard; if you know how to look after yourself, you will be ok, you will get through it and nothing that happens can change that if you’re able to access that strength.

Before you get it and feel it yourself it’s so hard to believe – I was seeing an amazing therapist who had been through infertility himself and he kept saying ‘you’ll be ok even if you’re not a parent’ and I said, ‘no, no I won’t, I have to, that’s not an option’ and pushing so hard against it.

In the work I do, I’m not trying to convince people they will be ok if they’re not a parent, because that is the ultimate fear and when you’re so entrenched in it, it’s too painful, it holds you back. I talk about getting you to a place where you are okay right now, you don’t need to think about next month, next year, what happens if treatment doesn’t work etc. etc.

I just say, maybe you will be ok for the next few weeks, the next few days, the next few hours. Let’s bring it right down. You don’t need to be OK in 4 years, you’re not there yet. Let’s wind it back to this moment.

Exactly. Day by day. Someone said it to me and it struck such a chord. Let’s not worry about whether or not it works. Let’s just have breakfast. Then go to the clinic. It just takes the pressure off. What are your top tips?

The main thing is self-care. Nourishing and nurturing yourself. If you want to be a mother and you’re expecting your body to grow a tiny life, you need to be nurturing yourself.

Meditation for me was a way to connect back with myself. We all think ‘I haven’t got time to meditate.’ or ‘I’m bad at this’ but the more you do it the more you benefit. It takes 6 seconds for body to go into stress response and 3 whole minutes to reverse it and initiate relaxation. It takes a few minutes for our bodies to calm down. To reverse the process and be calm. (Scroll to the end of this interview to read through the Letting Go meditation from Naomi).

 

You can practice it as many times through the day, you can ground yourself, breathe and focus on what’s actually happening in your body right now, what’s happening in your mind.

Does this practice every day work?

Yes. Even once a month is really helpful but if you build it up to be a habit it becomes a lot more powerful. You don’t practice to get better but you’re practicing how to bring yourself into alignment, so by deliberately practicing in those three minutes, then when you get stressed out in 2 hours time, you practice the ability to bring yourself back into calm, you’re more likely to be able to do it when you’re really stressed.

I found the more I was looking after myself the easier it was if I’d had a failed cycle or heard another pregnancy announcement. I was able to access the core, strength practices in my repertoire and re-align myself faster. What about how to recognise when you need support? When should someone seek help?

As soon as possible. I left it a lot later than I wish I had. I was focused so much on my physical body, changing my body but my health was being really impacted by my stress and the thoughts I was having. It was my fertility clinic – I had a panic attack during treatment and the doc said: you need to see our mindfulness specialist. So I did the course with her and I felt so ‘held’.

Someone I could talk to who wasn’t going to tell to take an extra 5mg of this, or avoid eating potatoes for a month…she didn’t give me answers, she asked me questions so I could find the answers myself. It was so liberating to give myself the space to say whatever I need to. She was not going to judge me.

I had a similar experience. Referred for counselling when I was in floods of tears! I learnt accepting support is not a weakness. A big message I want to get out there. You’re so much stronger when you do have someone to comfort you. It’s practical as well – they can give you strategies on how to cope

For me, it was finding a community of women not only going through it but looking for positive ways to support themselves.

I found forums depressing. One person would say “omg this has happened” and 50 people reply saying, try this, see this person, eat this! You’d never hear from that person again. You’d never know if they got pregnant or not. You invest all this time connecting and never hear from them again. Loads of depressed people freaking each other out! I tried to respond with mindful comments but people were negative about this – you’re being unrealistic. I realised it wasn’t helping me.

That’s why I started my own group. I wanted to be able to say to people, I’m feeling really good today. This has happened, let’s celebrate it. And in the group we invite people to share their pregnancy announcements! In forums you’re not allowed to announce it, but I thought if we can’t even cope with another woman who has been trying for 5 years getting pregnant, then we need to look at that. It’s very different from your best friend who has been trying for a week telling you over coffee to someone who has really struggled. We need to be able to celebrate and see that it’s possible. One lady had been trying for 8 years and she didn’t share it in the group, but I said she should! People need to hear its possible – it’s amazing! But people feel guilty. And sometimes I feel guilty now. But we’re all on these different paths and we can’t keep ourselves closed off.

So, what we’ve done is share announcements (no pics of scans though) and then there’s the mindful pregnancy group. Because even though you might get pregnant, you don’t suddenly change overnight and think – great, now I have no worries. New worries and anxieties come up and you need a space to talk about them without feeling guilty about upsetting others.

Then when you have your baby there’s our mindful parenting group. Everyone has extra high levels of guilt about the days we are finding it hard and struggling with being a mum. Because you’ve gone through so much to have them but it’s so normal to have some days where you want to sell them on eBay! Its ok not to love every single minute as long and you love your children. Parenting brings new challenges and things to deal with.

That’s what I’m writing about now how we can bring mindfulness to parenting and stay connected deeply to ourselves so we can connect deeply with our children.  There is a link to the group from the community page of my website www.embracefertility.co.uk.

A mindfulness practice: Let it be

This exercise can be used to release both fears and desires, allowing us to experience the moment as it is:

Close your eyes and tune into your current emotional state. Nervous, sad, excited, overwhelmed. What thoughts are behind this emotion? Are you experiencing any physical sensations linked to these thoughts, for example a tightness in your chest or fluttering in your stomach?

Bring your hands together and cup them as if you are holding a butterfly.

If you could allow all of these emotions, thoughts and feelings to flow down your arms into your hands and give them a shape or a colour, what would they look like?

Imagine holding all of your emotions, thoughts and feelings in the palms of your hands. Perhaps they might resemble a glowing ball of light, or have a physical shape, or you might just get an idea or a feeling of what they might be.

Then very gently, very slowly, open your hands, gradually turning your palms upwards towards the sky so that your little fingers are touching and your hands represent a bowl shape.

Say to this collection of your emotions, thoughts and feelings: “I release you, I let you be.”

Then stretch out the palms of your hands and slowly pull your hands apart, leaving the emotion floating in front of you in the air.

By releasing our grip on our desires and our fears that our desires may not be fulfilled we come to a place of acceptance that, just for this moment we can let these feelings be.  This doesn’t mean pushing them away. Just let them exist in front of us with no attachment.

Taken from the Embrace Fertility 10 week mindfulness course. Visit www.embracefertility.co.uk to download your free 5 minute mindfulness MP3 and poster  ’10 ways to bring mindfulness into your day while trying to conceive.’

Sophie’s Choice

Sophie Sulehria has had 6 rounds of failed IVF. At 35 and without ever having been pregnant, low ovarian reserve, endometriosis and poor egg quality she started to look into to other ways of becoming parents with her husband Jonny.

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Most people would just Google. But Sophie is not most people.

She’s a BBC journalist who decided that there wasn’t enough out there for couples in their position and that Radio 4 should broadcast her research as she did it.

Sophie’s enormously successful Radio 4 series, Our Fertility Journey is the most beautifully intimate and important work. In it, she keeps an audio diary of her last IVF round (cue full on floods of tears from me and my catalyst for contacting Sophie); then interviews with people who have become parents through other means; as well as talks with their families to raise awareness that infertility affects more than just the people going through it.

She’s doing a bloody brilliant job of ‘flipping the script’,  the theme for the US’s National Infertility Awareness Week (this week). By being so open about her journey and sharing what they are going through, she has singlehandedly (with her brilliant husband Jonny of course) been able to put this incredibly hard choice on a huge platform which, I have no doubt, has helped an enormous number of people already.

I met Sophie at BBC Broadcasting House to talk to her about her decision to go public and for her to tell me more about her journey too. Sophie, thank you for your honesty and for being so open with me when you didn’t know me from Adam.

 

(NB: who is Adam? Adam and Eve?? Never known.)

Sophie’s IVF attempts:

  • 1st round: 1 egg, fertilised well (didn’t work)
  • 2nd round: 2 eggs, 1 egg fertilised (didn’t work)
  • 3rd round: 1 egg, didn’t fertilise
  • 4th round: no eggs fertilised
  • 5th round: no eggs fertilised
  • 6th round: 2 eggs, 1 fertilised unsuccessfully

Sophie, what inspired you to document this part of your journey?

I’ve been working in TV/Radio for 8 years. It’s my passion and my job. Of course… I usually tell other people’s stories!  But after 4 years of IVF failing for us, Jonny and I started to approach the idea of looking at other options, because it just wasn’t working. My ovarian reserve is extremely low, I’m 35 and heading into the menopause quite quickly, which is depressing, plus I also had severe endometriosis as well.

 

It’s been a really crappy journey. I was really struggling and Jonny wanted to look at alternatives. But I didn’t want to. I sat with it for a year and while my mind was processing it, I started to realise if I was in this position there must be thousands and thousands of other people in this same position. I was searching and searching for people’s testimonies, other people’s experiences and found very little who were in the same position as me.

 

The only things you would find were the people who had come out the other end, found their path, and it was great. But you never found the people who were in my position which is: this is what we’re doing and its hideous and we don’t know what to do next.

Around March 2017, I decided I was going to make a podcast.  Because I worked for the BBC, that podcast turned into a conversation with someone at Radio 4. Rosie, my editor, then said: we’d like to do this series.  I told her I was about to start my final round of IVF and she said – ‘would you record it for us?’.  Immediately I thought, yeah this is a great idea. And it felt like a great idea. Like I was using my skills as a reporter and our experience, for some good. Cathartic. It felt like a natural thing to do and it felt like I was doing something good with the experience, which had been hideous.

 

So that’s the reason we decided to do it. The response and my feelings about a month after we’d gone public were very different from that, I don’t think I realised the enormity of the situation.  I think I thought that I would put this piece out and it would just kind of go with the rest of pieces over time – interesting to some people and not to others. But the response was insane.

In the first couple of days I had hundreds of people contact me. People I know of course, people I hadn’t heard from in years, and then all these strangers that it had affected.

 

If you think about it, nearly 4 million people in the UK a year struggle to get pregnant. If you even tap into a third of those people it’s vast. It was completely overwhelming. I think I had some kind of nervous breakdown in that first month, just through sheer shock.

I felt completely exposed. I felt naked and vulnerable. And also, I hate to admit this, I absolutely hate to admit this: but I felt ashamed that I was a woman that couldn’t do what a woman should be able to do which is create eggs and have a baby, and I’d told the world about my flaw.

While I got used to it in my own head, I don’t think I had processed how it would feel to tell everyone the same thing. So that first month was quite tough. But as the series continued, I realised that I was making complete shift, and meeting people who had been in my position, and had come through into a different realm and had moved on… In fact, what was heartening was that every single person that I met – bar the childless couple to be fair – but the others, through egg donation, overseas adoption, adoption in the UK, the fostering to adopt scenario, these people were telling us that this was not their first option for a baby…but had now become their first option.

 

We’re really glad we’ve done the series now.

So you’ve spoken to all these people. Are you making decisions now about what you want to do? Have you made a decision?

 

We know what we don’t want to do. We know that childlessness isn’t an option for us yet. It will have to be if it is the only option but we’d rather it be the last option.

We’ve got a really good relationship and we’ve got an amazing little cat who is literally our baby. This cat has been a turning point and a saviour, Olive. She’s amazing.

Tell me more!

Our worst year was 2016/17. Really awful. We’d had our third round with one egg collected at this really difficult clinic to be at. I went through the ringer. It was horrific.

 

And at the end of that round, we had one egg collected and it didn’t even fertilise. I was in the gutter at this point. I was absolutely bereft. I was hideous to be around as well.

I didn’t want to hear about people’s children, I didn’t want to see pregnant women, I didn’t want to speak to women of my age group in case they told me they were pregnant. It was absolutely horrible. And I hit real depression.

But it was that October that we went to our friend’s 40th birthday party. I remember feeling like a shell of my former self, just really low. Then we saw our friend Helen. She works at a vet and we ended up telling her, in this bar, what was going on and saying we don’t know what to do.

 

And she said – have you thought about getting a pet?

I said yes, we had talked about a kitten.  But I didn’t want it to ruin our sofa and my very special arm chair! Plus I had allergies when I was growing up, and they’re expensive, and the care…

But she said, oh ok, I think you should probably just ignore all that.

Then by pure coincidence that week, she had this bin man come into her vet with this tiny bundle of fluff. He’d found this cat on the wheel arch of his lorry. And he’d driven around with her for two days. So, he went to the vet and said I’ve just found this on my bin lorry. Helen took the cat, washed her up, took a photo and tagged me on Facebook saying “I think I’ve found your cat”. So: we went and got her! Her name’s Olive and I could honestly tell you that she was a turning point. I am allergic, she has ruined my chair, she is expensive because we pay for the most expensive food for her, but she’s our baby.

 

For us, the two places where we’re on the same page: overseas adoption, or donor eggs. Jonny more on board with the donor eggs than I am, because I still feel like I would be carrying another woman’s baby. But I’ve had a lot of counselling around that and it might be something that we decide to do. Overseas adoption appeals to us, because my dad’s side of the family are from Pakistan, Turkey and Egypt. So, it wouldn’t be completely random to go to one of those countries and perhaps look into that.

You and Jonny sound like you have an amazing relationship, how have you got through this?

 

We still try to find the happy. I think that’s the key. If you’re going through IVF, if you are going through any fertility journey, really important to remember why you wanted a child in the first place – we wanted them because we wanted a baby…this is the sad thing for us. We wanted a child because we loved each-other and we wanted a part of us to be joined together and that’s what I find the most difficult. The genetic side of things, I’m an only child, I have very mixed heritage, I find it very depressing that I may never meet my biological child.

But you have to remember why you wanted the child in the first place and why you got together in the first place – and the fun you had. We’ve been at our lowest ebb and I’ve had to really 

 

focus and remember why we’re together, what makes you happy. I’ve been known, and we have done this, to get up after a really depressing spell and just go to Thorpe Park. We have spent some of our most depressing times –I have sat on a rollercoaster and cried for the whole ride! But I thought, we have to get out of here and just have fun. Because what are we going to do? Sit in this bedroom and just cry?

So, I have dragged him to Legoland, Thorpe park and I thoroughly advise that that’s what you do.  Find the fun.

 

I interviewed a woman whose relationship broke down after 8 years of fertility and she doesn’t blame him for walking. She said she doesn’t recognise herself when she thinks back to the person she was.  She says she can see that, in the main part, this was because she just completely became obsessed with a baby. 

There wasn’t any relationship left.

How do you deal with other challenges? How do you cope with pregnancy announcements?

Those have been my most depressing times. Even this year, when I felt like I turned a corner, we were making the series, it was Christmas – it’s a very difficult time for a childless couple, but this Christmas I felt in control of it – and I had 5 pregnancy announcements within 2 months. But one in particular floored me because she was about to start IVF. And I can’t help but feel bitter and jealous of that. Why did she get saved from the boat?

 

I’ve got friends that can sneeze and get pregnant and I don’t find that a difficulty. But the moment someone puts themselves in your boat and they say – oh god, this is awful, I can’t get pregnant, this is our experience, it’s been hideous – and I start imparting my wisdom, bring them in, feel like I’m with them in some way.  Then later they say they’re pregnant and it floors me.

 

Every time. It’s got to the point that when people say they’re struggling now, I have to give myself some distance. Because for you, it might work, but for us, it hasn’t.

Do you think communication is super important?

Yes it’s key, it’s one of the main reasons I did the series. I still feel like some people can’t handle it. People who aren’t in it don’t always get it, and think it’s a private issue – I think there’s still a stigma and it’s still taboo.

 

Sometimes I say to people, even after the series, “sorry I can’t do that because I’m at the hospital having a scan” and they’ll look another way and I know they’re thinking, ‘I don’t know what to do with that information, she’s talking about a scan for her baby thing…’!

I get it I guess, it’s been a private issue for so long.  But if somebody has cancer and says they’re going to have chemo, I don’t think they’d react like that – people rally round. When someone goes through fertility issues it’s like, why are you talking about it so publicly! People probably think it even now with this series.  It doesn’t matter that 4 million people are struggling to have a baby every year, why are you talking about it so publicly, it’s supposed to happen behind closed doors!

 

I know you said you had some counselling – I did as well, which I found really helpful.

Yes, and I’m still having it.

How did you find your counsellor? I think it’s really important that people get support if they need it.

Yes, it is. It’s the one thing about America – you go to a counsellor as soon as you go to the doctor, gynae, osteopath. Again, it’s so awkward in this country – people hate to admit they need some help, though I think that’s on the turn.

 

I actually can’t thank my counsellors enough, I had three at one time! CBT for the anxiety side of stuff; I’ve been to one for past experiences and how it led to the present – basically sorting out your core stability and feeling like you’re enough…which is really key if you are trying for children and you can’t have any. You need to live with yourself. And we’ve been to couples counselling through the clinic – I can’t thank the Lister enough. Their counselling is a free policy, and they’re always on hand. I have an amazing counsellor at the Lister. She has cleared her diary for hours in the past because we have desperately needed to talk it through.

I bet you’ve tried all the alternative stuff as well as IVF.

I’ve done anything and everything. I’ve read books that said it was better to be vegetarian, I read books that said you shouldn’t, so I didn’t, I read books that said a nutritional diet would help.  I’ve tried them all, but I’m only human and this is year 5 and…and you have holidays, birthdays, you have Christmas… it wasn’t helping that I was stressing myself out, putting a huge amount of pressure on myself if I wasn’t sticking to the regular diet, then berating myself if I ate a burger! We spent so much money on vitamins, acupuncture  – the head one – reflexology… the lot.

 

I’ve got to a point now where nothing’s actually worked. So I’m just trying to be chilled. Because every single one of those things would cause me some stress. I don’t like needles and I don’t have time for appointments. Yet I was trying to shoe horn acupuncture into my life every week for a year. I would be stressed trying to fit it in, stressed because I don’t like needles, and at the end of it I was a mess. And yet I’d spend £45 a week on this thing. Then there were the vitamins tablets – they were getting more and more difficult to source! The minute I’d run out I’d have a panic attack. The whole vegan thing…I would be ok for a couple of days, then I’d be so upset and low because I felt like ‘I can’t even eat that’…so, because nothing seems to have worked so far, I gave up…

 

It’s what works for you. And actually, I do believe my doctor – who I now have a friend like relationship with because I’ve had him in my life for 5 years – who said ‘do what makes you feel like you’re happy because when push comes to shove, you have endometriosis, you have low egg supply and your eggs are bad quality for the same reason. Do what makes you feel happier, but you are ill. I don’t want you to feel like because you spent a year eating meat that it was your fault’.

 

I want to try and encourage people to try everything, find what works and that is what you do.

Yes. And with the mental health thing: to say ‘relax’ is the worst. If I’m told I should relax one more time, or that ‘it will happen when you’re not trying, or when you least expect it…’ it’s so frustrating. And actually, there’s not a single element of truth in this because the same amount of people who are super stressed out verses the ones using mindfulness techniques get pregnant equally!

The difference is how it helps you to cope.

It’s about your mental health, not the success of the treatment.

Sophie and I could have chatted for hours (her last comment there about how frustrating it is to be told to relax was a good 2 months before Relaxgate!) The way she is sharing her journey and putting herself out there to try and change the conversation about infertility is incredibly inspiring.

 

 

Follow Sophie at @sophiesulehria for more updates on her journey and links to her brilliant work.  And here’s a link to her series on Radio 4 ‘s PM.

Let’s keep talking. Let’s break the stigma.