What do the abbreviations mean?

If you’ve been looking at fertility websites or forums (I think it should be “fora” but that sounds too weird), you may have been confused by the abbreviations…

They crop up throughout posts, and at first it can seem as if people are speaking an entirely different language when they talk about TTC (trying to conceive) and being on their 2ww (two week wait) hoping for a BFP (big fat positive – a positive pregnancy test).

Here is a brief guide to some common abbreviations for anyone who may a little help with translation…
A/F = Aunt Flo (period)
AH = Assisted hatching
AI = Artificial insemination
AIH = Artificial insemination by husband
AMH = Anti mullerian hormone
ART = Assisted reproductive technique
BBT = Basal body temperature
BFN = Big fat negative
BFP = Big fat positive
BICA = British Infertility Counselling Association
CD = Cycle day
DE = Donor eggs
DHEA = Dehydroepiandrosterone (a hormone which some believe can be beneficial for women with a low ovarian reserve)
DI = Donor insemination
DH = Darling husband
DPO = Days post ovulation
DPR = Days post retrieval
DP = Darling partner
DPT = Days post transfer
DS = Donor sperm
EC = Egg collection
ENDO = Endometriosis
ET = Embryo transfer
FER = Frozen embryo replacement
FET = Frozen embryo transfer
FP = Follicular phase
FSH = Follicle stimulating hormone
HCG = Human chorionic gonadotropin
HFEA = Human Fertilisation & Embryology Authority
HPT = Home pregnancy test
HRT = Hormone replacement therapy
HSC = Hysteroscopy
HSG = Hysterosalpingogram
ICSI = Intra-cytoplasmic sperm injection
IMHO = In my humble opinion
IMO = In my opinion
IUI = Intra-uterine insemination
IVF = In vitro fertilisation
IYKWIM = If you know what I mean
LAP = Laparoscopy
LH = Luteinising hormone
LMP = Last menstrual period
LP = Luteal phase
LPD = Luteal phase defect
M/C = Miscarriage
OI = Ovulation induction
OHSS = Ovarian hyperstimulation syndrome
OPK = Ovulation predictor kit
PCOS = Polycystic ovary syndrome
PESA Percutaneous epididymal sperm aspiration
PG = Pregnant
PI = Primary infertility
PID = Pelvic inflammatory disease
PMS = Pre-menstrual syndrome
POF = Premature ovarian failure
SI = Secondary infertility
TESA = Testicular sperm aspiration

And finally HTH (hope that helps)!

Running for the right to try

If you read this blog at all regularly, it won’t have escaped you that I am a huge fan of the brilliant Jessica Hepburn, Director of Fertility Fest and author of The Pursuit of Motherhood. You may have followed her Channel Swim to raise funds for Fertility Network UK, and now she’s doing it again with the London Marathon.

Jessica has written a fantastic blog post about this and if you want to read more about what she’s doing and why, you can find it here. There’s also a link to her JustGiving page where you can make a donation to support her through her 26 miles. For me, 10k feels like a marathon, and I think it’s a wonderful thing that she is doing – so support her if you possibly can and help to make it even more worthwhile.

Fertility Day of Action

If you’re concerned by the postcode lottery for fertility treatment, you can join the Fertility Network UK Day of Action on 25 March. You don’t have to go out marching anywhere, but just a few small actions can make all the difference

There are three ways you can join in –

  • Contact your MP, Tell them how the postcode lottery is affecting you and what is happening in your local area. You can find out more about how to find your MP’s contact details and what you might want to say in an email or letter here on the Fertility Network UK website.
  • You can tweet your support using the hashtags #IVFx3 #tellyourMP #righttotry
  • You can help create a fertility funding Thunderclap – a social media message sent collectively – on Facebook, Twitter and tumblr on Saturday 25 March at 3pm. Register your support for the Thunderclap at https://www.thunderclap.it/projects/52716-the-right-to-try-campaign

Fertility guidelines from the National Institute of Health and Clinical Excellence (NICE) say that if you should be able to access 3 full cycles of NHS IVF if you under 40 and eligible for treatment, An overwhelming 98 per cent of England’s 209 local clinical commissioning groups (CCGS) do not follow this guidance fully and have either cut the number of IVF cycles they offer and ration services by introducing additional non-medical access criteria, such as denying IVF to individuals if their partner has a child from a previous relationship.

Do join in and help your charity to help you to make a difference!

 

Clean eating and your fertility

I know from running support groups that there’s a lot of interest in the idea of ‘clean eating’ and fertility – and the recent Fertility Network UK patient survey showed that 75% of respondents had changed their diets because of their fertility problems.

Of course, it makes sense to eat healthily if you are having difficulty getting pregnant or going through treatment – it is good for you, it makes you feel better about yourself and you really wouldn’t want to be living on beer and chips. However, so many fertility patients I see are on diets that can start to feel incredibly restrictive, and that may not be a good thing.

I always remember interviewing someone who’d been following a strict diet for her fertility who said she suddenly realised it was making her really miserable and dominating her life. She concluded that actually being happy was probably more important than not ever eating a biscuit or drinking a cup of tea (builders as opposed to herbal of course).

I think she was absolutely right. There is nothing worse than feeling constantly guilty. I have seen people who end up blaming themselves for their fertility problems because they like ice cream or having a glass of wine when they are out with friends. These things in moderation are really not going to stop you getting pregnant. This article from The Spectator may be of interest!

Leap In by Alexandra Heminsley

This is a book about swimming, about how Alexandra Heminsley overcame her fear of water and learnt not only to swim, but to enjoy swimming outdoors in choppy seas, cold rivers and dark tarns. Heminsley’s earlier book, Running Like a Girl, is about running when you don’t think you’re a runner and Leap In is the swimming version. It’s her honesty, the detail and her beautiful writing which make this such an engaging book; I could completely envisage the sweaty attempts to squeeze her body into a wetsuit, the feelings of panic in deep water, the anxiety about her bare feet when she does her first river swim.

Leap In is about pushing yourself, about facing up to difficulties – and we learn more than half-way through the book that Heminsley is going through fertility problems and IVF as she continues her swimming journey.  At that point, her battles to overcome her fears have an undercurrent of a more fundamental challenge.

Heminsley doesn’t tell us much about her fertility problems or the experiences of tests and treatment, but what she does say is rich with meaning for anyone who has been there. “When I think about never having a child, a sort of breathlessness, almost a vertigo, comes over me,” she writes, explaining in just one sentence the overwhelming hollow bleakness of infertility. She has a positive pregnancy test after her second IVF cycle, but miscarries – something she deals with in two poignant paragraphs in which she describes the sense of crushing grief and how this transforms her relationship with her body which she feels has betrayed her and which she now rejects.

I really love this book – it manages to be funny, sad, inspiring and thought-provoking. The last chapter of the first part ends with Heminsley pondering what lessons swimming has taught her and where her future lies. She says she doesn’t know if she will ever have a child, or even the strength to try IVF again, but her attitude to life is that we must Leap In, living life as a participant rather than a spectator, that we must not give into our fear of the unknown and must be courageous when we need to adapt or amend our plans and discover our inner strength and resilience. These are certainly thoughts to ponder for anyone who is in the midst of fertility problems.

Leap In is published by Hutchinson.

 

 

E-cigarettes and your fertility

They are often thought to be the safer version of smoking – but new research has found that the flavourings used in e-cigarettes may contain toxic chemicals which can damage men’s sperm.

A team from University College London found that two of the most popular flavours put into e-cigarettes were particularly damaging to sperm – bubblegum and cinnamon were both found to affect male fertility.  You can read more details about their research, which was presented at the Fertility 2017 Conference earlier this month, here 

Leap In

If you haven’t already seen this fabulous article from The Guardian by Alexandra Heminsley, it is worth a read.

You may have come across Alexandra Heminsley before as she wrote a previous book, Running Like a Girl,, about her experiences of running (which I found really inspiring as someone who is not remotely sporty but who has discovered an unexpected love of running – albeit very slowly…).

This article is about her new book Leap In, which deals with swimming and fertility treatment. We learn that she has been through two rounds of treatment, one of which resulted in a positive pregnancy test followed by a miscarriage. There is always a feeling of connection when you read about someone going through fertility treatment – we all understand something that others never really can – and I found her article incredibly moving. She talks about her changing feelings as she goes through the unsuccessful treatment and miscarriage, about how she feels betrayed by her body and rejects it. Describing all this through a focus on swimming somehow makes it an even more powerful read. When she talks about the “sort of breathlessness, almost a vertigo” that comes over her when she thinks about never having a child, she captures in just a few words the vast hollow emptiness and fear which are so familiar to many of us.

I’ll be posting a book review soon, but in the meantime, do read the article.

Why one embryo may be better than two

Embryo,_8_cellsWhen it comes to embryo transfer, some people still worry that putting one back will reduce their chances of success. In fact, for those who have good quality embryos putting them both back will just increase your chances of having a multiple pregnancy – and although twins or triplets may sound like a wonderful idea when you are trying to conceive, it is the biggest health risk from fertility treatment. Now, some interesting new research suggests that perhaps it isn’t just those who have good embryos who should be having one embryo transferred.

A study by scientists at Nurture in Nottingham found that putting back one low quality embryo alongside a high quality one reduced the chance of becoming pregnant by more than a quarter. It was only when neither of the embryos were good quality that putting back two actually increased rather than decreased the chances of a successful pregnancy. You can read more about the research here.

This does back up the idea that single embryo transfer is the best option for many – but not all – fertility patients. It should always be something you discuss with the team treating you but it is really important to be aware that putting back more than one embryo may not increase the chances of success.

Free fertility support

Cmhc-LqWYAAWk88In recent years, there has been a huge increase in the numbers of people offering fertility support services – often at premium prices from people who have no relevant qualifications and limited knowledge or expertise. What many people don’t realise is that the national charity, Fertility Network UK, provides an amazing range of support services which are all completely free.

The Fertility Network Support Line, run by a former fertility nurse, Diane, offers a unique fertility support service. Diane has a wealth of experience and has worked for the charity for more than 20 years, She can help not only with minor medical questions but provide you with the help you need based on her years of experience, and all calls to her are in complete confidence.

The Support Line has often been described as a ‘lifeline’ by those dealing with fertility issues. It is very normal to feel isolated, out of control, lonely or depressed when dealing with infertility, and Diane is there to help. No question is too trivial to ask and even if you just want to talk you can give her a call on 0121 323 5025 between 10am – 4pm on Monday, Wednesday and Friday, or email her at support@fertilitynetworkuk.org.

Of course, that’s not all the charity has to offer. You can find a wide range of support groups right across the UK, an online community, a Facebook page and masses of information. Do check it out now at fertilitynetwork.org and save the money you were about to spend – or perhaps consider donating it!

Interview with Julia Leigh, author of AVALANCHE

7432976-1x1-700x700We spoke to Julia Leigh, author of Avalanche, at the start of our National Fertility Awareness Week and began by asking her what she thought of the idea.

It’s a wonderful idea which I hope will focus more attention on under-reported fertility issues. Also, it’s a special way to bring together those whose lives have been touched by infertility.

Do you think we are too reluctant to speak openly about fertility issues?
There’s no reluctance on the part of the multi-billion dollar worldwide fertility industry to promote this area of medicine. For example, this month [October] the American Society for Reproductive Medicine Scientific Congress & Expo took place in Salt Lake City, Utah. Exhibitors represented at the Expo included a fertility clinic network; a myriad of ‘bio tech’, ‘health technology’, ’genetic screening’ and ’diagnostic solutions’ laboratories; biopharmaceutical manufacturers; food and vitamin supplement manufacturers; pharmacists; surrogacy and donor organisations; laboratory equipment suppliers; attorneys; insurers; cryobankers and cryoshippers; marketing and brand strategists; a big data analyst; specialist software providers; and a joint venture partner who promised to turn growing medical practices into successful businesses. There’s also no reluctance on the part of the media to report successful ‘miracle’ births. There is a reluctance, however, to talk openly about the plain fact that most treatment cycles fail. To give some perspective, about 80% of treatment cycles fail. There’s also a disturbing reluctance to talk openly about the physical and emotional harms of treatment. It’s almost as if patients and doctors and others in the fertility world are so bewitched by the beautiful possibility of a ‘live birth’ that they turn a blind eye to the real harms.

Your book Avalanche about your own story is intensely personal – was it difficult to be so open in public?
At the time of writing I felt that I’d already lost so much I didn’t care about losing face – and that afforded me an enormous freedom. My heart goes out to anyone who is doing treatment now.

What made you want to write the book?
I wrote an Author’s Note for my publishers and I think it gives the best idea of why I wanted to write the book. Here it is:
A writer contemplating whether or not to begin a new work asks herself – Is this truly a story worth telling? Avalanche felt necessary. I’ve tried to tell an intensely personal story about a common experience that has largely remained unspoken. I wanted to offer a ‘shared aloneness’ to anyone who has desperately longed for a child. I hope I’ve brought into the light the way the IVF industry really works – and I could only do that in non-fiction. I wanted to transmit what it feels like to be on the so-called ‘emotional roller-coaster’, to deeply honour that complex experience in all its detail. Ways of loving, the mysteries of the body, the vagaries of science, the ethics of medicine – the material raised so many questions. I started writing it very soon after I made the decision to stop treatment because I wanted to capture my strong feelings before they were blanketed by time. I wanted to write something for all the women who are contemplating IVF, or currently undergoing it, or who have stopped or who are thinking about stopping (it’s so hard – the decision to ‘give up’). I wanted to speak to their family and friends. I wanted to speak to young women who in a misguided way might be relying on fertility treatment as a kind of back-up. And I wanted to speak to the policy-makers too. Since there is so much IVF failure I wanted to provide an alternative voice to the miracle stories we frequently see in the media. I wanted to counter the push – yes, the push – of the worldwide multi-billion dollar IVF industry.

Do you think people need more emotional support when they are going through treatment?
It’s difficult to discuss treatment with family and friends but in so doing a patient can lighten the emotional burden. There’s also the counselling option. In my case, the clinic offered free in-house counselling as part of the very expensive treatment package…but I would advise seeking an outside independent therapist. I say this because the decision to stop treatment, to give up, that incredibly painful decision, sits uncomfortably with the fact that clinics are making money from their patients. In my case, when I was 44, using my own eggs, and I’d already done 2 IUI’s and 6 egg collections plus subsequent transfers, my doctor suggested I try once more. It was my sister who had the courage to tell me firmly that I needed to stop. I feel an independent therapist would be well-placed to basically warn patients of the emotional pitfalls that can lay ahead. Is there such a thing as pro-active counselling? Identifying the traps for new players and advising how best to respond to them…identifying the tricks of the mind that don’t serve patients well…I think a therapist who was familiar with the IVF world, who had experience in this area, would be best.

And do you think there is adequate support when treatment doesn¹t work?
There was little to no follow-up from my clinic after I decided to stop treatment. I can’t recall exactly – there may have been one phone call. I saw an independent therapist.

Here in the UK, the individual success rates for individual clinics are collated and published by the fertility regulator, the HFEA, and are broken down by age too. Do you think access to information like this would have made a difference to you?
Yes I would have loved to see results for my individual clinic. That would have helped. But I also want to note that I did see the graphs on my clinic website which used our ANZARD data and clearly showed how fertility dropped away with age. (The ANZARD report collates data from all clinics in Australia and New Zealand but doesn’t identify individual clinics). And when I was 40 my first doctor at the clinic said I had about a 20% chance of ‘taking home a baby’. BUT as it happened, at age 43, when I was transferring a thawed 5 day blastocyst, using my own egg, I asked my new doctor what my odds were of being pregnant (please note, pregnancy not live birth). Even though I’d seen the fertility graphs I figured my chances would somehow be better than the average because unlike some patients my age I was both responding to drugs and producing blastocyts: “Pollyanna Juggernaut could do amazing things with the numbers.” In reply to my question about odds, the doctor said “A Day 5 blastocyst has about a 40% chance.” I took that to mean I had a 40% chance of being pregnant – but later I discovered the 40% figure was for women of all ages. I hope that illustrates how statistics can be malleable…

What changes do you think we could make to try to ensure that fewer women suffer the kind of anguish you went through?
That’s a good question and I don’t have any easy answers. I wonder if there couldn’t be a buffer between women – especially older women – who are prepared to do almost anything to have a child and the clinics who are prepared to put patients through almost anything even though there is no guarantee of a successful outcome, far from it. In Australia a well-respected doctor put a patient through 37 cycles. 37! He had no qualms about that since she did end up with a child. But what if she hadn’t? I’m not sure what happens in the UK but in my case it was my General Practitioner who referred me to the fertility clinic. My GP never asked how my treatment was going. I wonder if GP’s could step in as a buffer, walk patients through the facts and figures, help decide whether or not to do an experimental protocol advocated by the clinic that will cause physical harm but has limited evidence of benefit, to basically serve as a ‘reality check’. There’s a great deal clinics can do to change…For example, during an embryo transfer my doctor pointed to an image of the blastocyst on the ultrasound screen and said ‘That’s the baby’. At the time, I thought it generous and I was touched that the doctor might be the only person in the world who would ever refer to ‘my baby’ but in retrospect the comment – that’s the baby – only heightened my intense desire for a child.