Getting started Your guide to fertility treatment

www.hfea.gov.uk This guide is for general information only; the HFEA does not provide medical or legal advice to individuals. If you are considering fertility treatment, you should first get professional advice based on your specific circumstances. While we have made every effort to ensure that the guide is accurate as at September 2017, we make no representations or warranty of any kind, express or implied, as to its accuracy, completeness, suitability or reliability. We accept no liability for any consequences that may arise from your acting or not acting in reliance on the information in this guide. 1 We’re here to help

When you’re As chair of the HFEA, I am exploring fertility proud that we have used our treatment, it’s expertise and years of experience difficult to know to produce this guide, which is where to start. an excellent resource, and one There’s so much which I would have very much information appreciated when I was a out there and fertility patient. It brings together it’s hard to know which sources authoritative, independent you can trust. I know this from information on a wide range personal experience. of topics to help you through your journey, providing a holistic We are the Human Fertilisation view of the advice, treatment and Embryology Authority (HFEA), and support available. the UK regulator of fertility treatment and research. We work You can find more information hard to make sure that the on our website www.hfea.gov.uk treatment you have is high quality, Sally Cheshire CBE whatever the outcome. HFEA Chair 2

Contents

We’re here to help 1 How to choose a 24 Services offered 25 How and when to seek fertility treatment 4 Eligibility for treatment 25

If you are having problems Cost 25 conceiving 5 Location and opening times 25 If you are in a same sex Waiting times 25 couple 10 First appearances 26 If you are a single woman 12 Cycles of treatment If you have a attempted 26 genetic condition 13 transfer policy 26 If you want to preserve your fertility 15 Support groups and counselling 27 If you are trans or non-binary 16 Faith and language issues 27 Get started 18 What does our inspection NHS treatment 19 report say about this clinic? 27

Private treatment 19 Birth rates 27

Treatment abroad 20 How can I see birth rates relevant to me? 29 Boosting your chances 22

Get support and advice 23 3

What to expect at a clinic 31 Storing eggs, sperm and 66 Tests 32 Freezing and storing embryos 67 Forms 32 Freezing and storing sperm 70 Questions to ask at the clinic 34 Freezing and storing eggs 71 Treatment options 36 Ovarian tissue freezing 72 Fertility drugs 37 Testicular tissue freezing 73 (IVF) 40 What to think about Intra-cytoplasmic before starting treatment 75 sperm injection (ICSI) 46 Cost 76 Intrauterine insemination (IUI) 50 Risks 77 Using donated sperm, eggs or embryos in your treatment 53 Consent to treatment 81

Genetic testing 61 Get support and advice 87 Treatment add ons 65 If fertility treatment fails, what next? 88

Contacts 90 4

How and when to seek fertility treatment If you are thinking about having fertility treatment, it can be difficult to know where to start. This section gives you an overview of the initial steps you may take, depending on your situation, and how this guide might be useful to you in each case. Getting started: your guide to fertility treatment 5

While every person is different Your GP may also arrange for and it’s impossible to map you to have some initial tests. out every scenario, we have For women, this may include: identified the most common • a cervical smear test if you reasons for seeking fertility haven’t had one recently treatment. In every case there • a urine test for chlamydia, will be sections of this guide which can block your fallopian which are relevant to you. tubes, preventing you from becoming pregnant If you are having • a blood test to see if you problems conceiving are ovulating (this is done by If you are having trouble becoming measuring progesterone in pregnant, you’re not alone. About a blood sample taken seven one in seven couples have days before your period is due) difficulty conceiving naturally. • a blood test during your If you have been trying for a period to check for hormone baby for over a year you should imbalances – measuring follicle see your GP. You should see your stimulating hormone (FSH), GP sooner if you are aged 36 or luteinising hormone (LH) over, have been diagnosed with and oestradiol. a cause of or have a For men initial history of problems which may tests may include: affect your fertility. • a urine test for chlamydia, (S)he will listen to your concerns, which, as well as being a make a note of your medical known cause of infertility in history, ask you questions about women, can also affect sperm your diet and lifestyle and perhaps function and male fertility give you a physical examination. 6 Getting started: your guide to fertility treatment

• a referral to your local hospital • blood tests to find out whether or for a sperm test you are ovulating to check for poor morphology • an ultrasound scan to look (abnormal shape), poor motility at your womb and ovaries (not moving normally), or both. • follicle tracking – a series of If your test results are normal and ultrasound scans to follow the you have been trying for a baby for development of a follicle to less than 18 months, your GP may see if an egg is developing suggest you make a few lifestyle changes and continue trying to • hysterosalpingogram – an x-ray conceive naturally. to check your fallopian tubes If the tests reveal a possible fertility • laparoscopy – an operation issue, especially if you are in your to check for any blockages 30s or older, they may make an in the fallopian tubes appointment for you to see a • hysteroscopy – a procedure specialist for further tests. This which involves using a could be at your local hospital or telescope with a camera at a fertility clinic, where you would attached to view your also go on to have treatment if to check for conditions such necessary (see p24 for advice as fibroids or polyps on choosing a fertility clinic). • hysterosalpingo-contrast For women, the tests you sonography (HyCoSy) – a scan may have at your local hospital which uses a vaginal ultrasound or clinic include: probe to check the fallopian • a full hormone profile to tubes for blockages measure any hormone • occasionally, a tissue imbalance sample may be taken from the endometrium lining of your uterus to be analysed. Getting started: your guide to fertility treatment 7

For men, depending on the results of a semen analysis, Diagnosis the tests you could have at your When there is a fertility problem local hospital or clinic include: in men, this is usually linked to low • blood tests to find out numbers or poor quality of sperm. the reason for any sperm This might be due to past medical abnormalities treatments, genetic abnormalities or lifestyle factors, but more often • karyotyping – a test to than not there is no obvious cause. examine chromosomes In women the causes of fertility • a testicular to find problems are more varied. They out the reason for a low include the failure to release an sperm count. egg every month (to ovulate), If you are unable to produce endometriosis, damage to the sperm, you may have surgical fallopian tubes, and polycystic sperm retrieval – a procedure to ovary syndrome (PCOS). remove sperm from the epididymis or the – so that diagnostic tests can be performed. 8 Getting started: your guide to fertility treatment

Your lifestyle can affect your Key facts chances of conceiving, particularly • Endometriosis is a condition if you are a heavy smoker or are in which endometrial cells, significantly overweight or which normally line the underweight. womb, implant themselves In a quarter of cases, despite around the outside of the investigations, a clear cause of womb or ovaries (or both), infertility is never established. causing internal bleeding This is often called unexplained and pain and reducing infertility. fertility. Whatever your diagnosis, your • Polycystic ovary syndrome clinician will explain the treatment is a condition in which options that are available to you. many small cysts form on the ovary resulting in How this guide can help you hormonal imbalances, This booklet gives you a variety which can cause infertility. of useful information to guide you through your journey – from Women also become less fertile information about NHS funding as they get older. Of women aged and private treatment to how to 35 and under who have regular choose a fertility clinic, what unprotected , to expect at the clinic and the 95% will get pregnant within three treatment options and support years of trying, while by the age of available. A typical route through 38 only 75% of women will do so. this guide might be as follows: Getting started: your guide to fertility treatment 9

How and when to seek fertility treatment

Get started (p18)

How to choose a clinic You are considering (p24) using donated sperm, eggs or embryos in your treatment

What to expect at a clinic (p31)

Treatment options: Using donated sperm, • IVF (p40) eggs or embryos in • ICSI (p46) your treatment • IUI (p50) (p53)

You plan to freeze What to think about your unused embryos before starting (IVF and ICSI only) treatment (p75)

Storing eggs, sperm Get support and and embryos advice (p66) (p87) 10 Getting started: your guide to fertility treatment

IVF would also be used where If you are in a same you carry the baby but use your sex female couple partner’s eggs in your treatment. Intra-cytoplasmic sperm injection More and more same sex female (ICSI) would not normally be used couples are choosing to have as a treatment option as this is fertility treatment to start a family. usually used when there is a If you are eligible for NHS-funded problem with the sperm (ie, low treatment, you should first visit sperm count, abnormal shape your GP for a referral; otherwise or when they are not moving you will need to approach private normally), which should not be directly. When using the case with donor sperm. donated sperm, your treatment option will usually be intrauterine How this guide can help you insemination (IUI) unless you have This guide provides you with fertility problems, in which case a variety of useful information – your clinician may recommend IVF. a typical route is outlined on the next page. Getting started: your guide to fertility treatment 11

How and when to seek fertility treatment

Get started (p18)

How to choose a clinic (p24)

What to expect at a clinic (p31)

Using donated sperm, eggs or embryos in your treatment (p53)

You plan to freeze Treatment options: your unused embryos • IVF (p40) (IVF and ICSI only) • ICSI (p46) • IUI (p50)

Storing eggs, sperm What to think about and embryos before starting (p66) treatment (p75)

Get support and advice (p90) 12 Getting started: your guide to fertility treatment

If you are a Key facts single woman • We don’t regulate If you do not have a partner and and so information about want to have a baby on your own, this is not contained within you will usually need to seek this guide. However, as private treatment (ie, not NHS- a starting point we have funded), but you may still wish provided some useful to visit your GP to have an initial information about this on discussion. A typical route through our website at www.hfea. this guide would be similar to the gov.uk/treatments/explore- diagram on the previous page. all-treatments/surrogacy • You can find information about other fertility treatment options, such as gamete intra-fallopian transfer (GIFT), on our website at www.hfea.gov. uk/treatments/explore-all- treatments Getting started: your guide to fertility treatment 13

Only certain clinics in the UK offer If you have a embryo testing – find the one genetic condition nearest to you by using the Choose a Fertility Clinic service on our If you have a high risk of passing website at www.hfea.gov.uk/ on an inherited disease to a child, choose-a-clinic/clinic-search. Select you may want to consider using PGD in ‘Fine tune your search’. donated sperm, eggs or embryos in your treatment, depending on Typical routes through this guide who carries the condition. are outlined on the next page. Alternatively, in some cases it Some serious inherited conditions may be possible to test your may be treated using a transfusion embryos so that only embryos of stem cells from the umbilical unaffected by the condition or cord of a matched donor. If you disease are transferred to the have a child affected by such a womb during treatment. condition you can read about pre-implantation tissue typing Your first step should be to talk to on p64. your GP to go through the options available. (S)he can refer you to see a genetic specialist or you can arrange to see one privately. 14 Getting started: your guide to fertility treatment

How and when to seek fertility treatment

Get started (p18)

How to choose a clinic (p24)

What to expect at a clinic (p31)

You have a genetic You want to use donor condition that embryos sperm, eggs or embryos can be tested for in your treatment

Genetic testing Using donated sperm, (p61) eggs or embryos in your treatment Treatment options: (p53) • IVF (p40) • ICSI (p46) • IUI (p50) (not for genetic testing and for sperm only in donation treatment)

What to think about before starting treatment (p75)

Get support and advice (p90) Getting started: your guide to fertility treatment 15

How and when to seek If you want to fertility treatment preserve your fertility

If you are concerned about your Get started future fertility (for example because (p18) you are about to undergo cancer treatment), you may want to consider freezing and storing How to choose a clinic your eggs, sperm, or embryos (p24) for use in future treatment. In rarer cases, you may want to consider What to expect freezing and storing ovarian or at a clinic testicular tissue. (p31) Your first point of call will depend on your individual situation. For Treatment options: example, you may initially visit your • IVF (p40) GP, get a referral to a fertility clinic • ICSI (p46) from your oncologist, or you may • IUI (p50) approach a fertility clinic directly.

To find a clinic near you, use What to think about the Choose a Fertility Clinic before starting treatment search function on our website at (p75) www.hfea.gov.uk/choose-a-clinic/ clinic-search, selecting the freezing and storage options which are Get support and most suitable for you. advice (p90) 16 Getting started: your guide to fertility treatment

If you’ve already gone through If you are trans puberty you may be able to freeze or non-binary your eggs or sperm and store them until you’re ready to start a family. Fertility may be the last thing on If you haven’t gone through your mind when you’re puberty yet and you’re keen to experiencing the distress of having start hormone therapy or puberty a body that doesn’t express your suppressing medication as soon identity. However, it’s currently not as possible, it may be possible possible to have children using your for you to store your ovarian tissue own sperm, eggs or embryos once or testicular tissue, which can be you’ve had genital reconstructive collected via a surgical procedure. surgery, and hormone therapies However, these treatments are and medications can also lead to experimental and there have only loss of fertility. You may find it a been a very small number of source of regret if you have resulting births worldwide following treatment for gender dysphoria replacement of the ovarian tissue, without preserving your fertility and and storing sperm is still the then realise later on that you want only established way to preserve a biological family. male fertility. Alternatively, you can consider other options for having a family, such as using donated sperm or eggs in treatment or . Done in the right way, using a donor is a safe and increasingly common way of creating a family (see p53). Getting started: your guide to fertility treatment 17

Thinking through all these issues now and understanding your options will help you make an informed decision. Read more about the choices available to you and find links to further support on our website at www.hfea.gov.uk/ treatments/fertility-preservation/ information-for-trans-and-non- binary-people-seeking-fertility- treatment

Costs and funding To find out whether you are eligible for NHS funding for fertility preservation or treatment the best thing to do is to talk to your GP. Otherwise you can approach private clinics directly. 18

Get started

When you’re starting out on your fertility journey, there are some important initial considerations. This section gives you an overview of these, along with some advice on how to boost your chances of getting pregnant. Getting started: your guide to fertility treatment 19

You can also find useful NHS treatment information on our website at Whatever your circumstances, www.hfea.gov.uk/treatments/ one of the first things to consider explore-all-treatments/costs-and- is whether you are eligible for, and funding and Fertility Network UK at would like, NHS treatment or if you http://fertilitynetworkuk.org/for- need to pay for your own treatment those-trying-to-become-parents/ (ie, be a private patient). nhs-funding The criteria for whom and what is If you are eligible for, and would funded by the NHS varies across like, NHS-funded treatment, your the UK. Your GP, local clinical first step is to get a referral from commissioning group (CCG) your GP. or health board should be able to advise you on local funding Private treatment arrangements. If you are unable to access NHS funding for your fertility treatment or are planning to pay for your own, you have the option of directly approaching private fertility clinics. Depending on your situation, you may still want to visit your GP first to have initial tests or discussions (more about this in ‘How and when to seek fertility treatment’). 20 Getting started: your guide to fertility treatment

We don’t regulate the cost of treatment; private clinics set their Treatment abroad own costs so prices can vary. You may be considering travelling You will therefore need to contact abroad for fertility treatment due clinics directly to find out how to, for example, lower costs. If so, much your treatment will cost. it’s important to bear in mind that When discussing prices with the standard of clinics in overseas clinics, it’s important to find out countries varies greatly and not all exactly what the price includes. countries will have organisations Some include consultation fees equivalent to the HFEA. Some and any recommended tests in places have no specific laws or their overall price; others may regulations relating to fertility not. Some clinics may offer some treatment as we do in the UK. free counselling, and others may If you are considering this option, charge for this. Fertility drugs are we advise you to carry out usually an extra cost and can be thorough research beforehand very expensive. The cost of your and only select a clinic that has treatment may also change as a proven record on quality and your treatment progresses. safety standards. Make sure your clinic provides you with a costed treatment plan detailing the specific procedures you need. More information on costs is on p76. Getting started: your guide to fertility treatment 21

It’s also worth doing thorough • laws and rules and how research on your treatment options they differ from the UK in the UK, if that’s where you’d • availability of counselling prefer to be treated. Some people and support assume that it’s hard to access treatment at home – eg, if you’re • if applicable, donor issues using donor sperm in your such as legal parenthood treatment– when it is in fact and whether or not donation easier than expected. is anonymous (in the UK, you can find out non-identifying If you decide to go abroad, information about your donor we suggest you take a number and donor-conceived children of issues into consideration, can find out identifying including: information about them when • standards and safety they reach 18. Read more on p60) • birth rates (and how they are calculated) • if applicable, surrogacy issues (such as legal parenthood). • how your medical information is stored and who has access You can find more information to it on things to consider for each of these issues on our website at • what happens if www.hfea.gov.uk/treatments/ treatment goes wrong explore-all-treatments/fertility- • how they minimise multiple treatment-abroad births (twins, triplets or more) 22 Getting started: your guide to fertility treatment

limit of three to four units. Drinking Boosting your chances too much can have a negative If you are trying to get pregnant, impact on and there are things that you and, if can harm a developing fetus. applicable, your partner can do Medication and drugs to boost your chances. Some prescription drugs Eat healthily can reduce your chances of A balanced diet will help ensure conceiving, so if you are taking your body is healthy enough to regular medication, ask your GP become pregnant and can also about suitable alternatives. All help to keep sperm production recreational drugs should be at optimum levels. completely avoided. Exercise regularly Stop smoking Regular exercise will keep you fit Smoking has been linked to and help you to maintain a healthy infertility and early menopause weight. It can also help to reduce in women and has been shown your stress levels, in what can be to reduce sperm quality in men. an emotionally draining situation. It is also a factor in premature and low birth-weight babies. Drink sensibly Keep cool Women who are trying to become pregnant should drink no more For maximum sperm production, than one or two units of alcohol the testes should be a couple of once or twice per week. Men degrees cooler than the rest of should stick within the Department your body. It may help to avoid of Health’s recommended daily tight-fitting clothing, saunas and hot showers. Getting started: your guide to fertility treatment 23

Take folic acid Counselling For women, it’s important that you Counselling aims to help you take 400mcg of folic acid a day to understand exactly what your help prevent conditions such as treatment will involve and how it spina bifida in your child. This might affect you and those close should be taken from three months to you – now and in the future. before you start trying to conceive All clinics licensed by us must and can be bought over the offer you an opportunity to talk to counter from pharmacies and a counsellor about the implications supermarkets. of your suggested treatment before you consent to it. Get support and advice Counselling on the implications of Fertility treatment can be an treatment is especially important if emotional rollercoaster so it’s you are considering using donated important that you have the sperm, eggs or embryos or support you need before, surrogacy arrangements – all of during and after treatment. which involve complicated issues. You may need time to explore how Support groups you feel, to consider the needs and You may want to consider legal rights of donor-conceived joining a support group. This children and to talk about whether will introduce you to people in this is going to be the right similar circumstances to your own decision for you. who will understand what you are Different clinics have different going through. Your GP or fertility costing policies for counselling clinic can advise you on support so check whether you have to pay groups in your area, or you can extra for counselling. For more contact Infertility Network UK. information, contact the British There are also many online support Infertility Counselling Association groups that you can find at the (BICA): www.bica.net back of this guide. 24

How to choose a clinic

Choosing a fertility clinic is a very personal decision and the criteria that matter to you will depend on your circumstances. This section gives you a list of things to consider when choosing the best clinic for your needs. Getting started: your guide to fertility treatment 25

Services offered Location and opening times Does the clinic offer the treatment that is best for you? What about How convenient is the location? other services you may want If you choose a clinic that is further such as a support group or free away, you may be able to have counselling? Use the Choose a certain treatments at a local Fertility Clinic tool on our website hospital (known as a satellite or at www.hfea.gov.uk/choose-a- transport centre). This will save clinic/clinic-search to find clinics you travelling to the clinic for which offer the treatments and every test and treatment, making services you require. it more convenient. You may also want to choose a Eligibility for treatment clinic which has opening times that are most convenient for you – for Some clinics have age and example, a clinic which offer.s early body mass index (BMI) criteria morning appointments. for treatments. Others only treat private patients. Contact your shortlist of possible clinics to Waiting times find out if you are eligible for treatment there. How long is the waiting time for treatment? Contact the clinic to Eligibility and funding information find out. is also included on each clinic’s page on Choose a Fertility Clinic. If you are using donor sperm, eggs or embryos in your treatment, check the clinic’s page on Choose a Cost Fertility Clinic to see how long you’ll need to wait for donor treatment. If you are paying for treatment, you will want to find out how much your treatment will cost. Read more about this on p76. 26 Getting started: your guide to fertility treatment

having a multiple birth (twins, First appearances triplets or more), the single biggest When you contact or visit the risk of fertility treatment (more on clinic, think about how you feel p78), so you may want to consider there and about the way staff treat the following: you. Ask lots of questions so you • What is the rate of multiple feel fully informed about the births for the clinic? treatment they are recommending. If possible, talk to other patients to • How do you feel about this hear their personal experiences of and the risks associated with the clinic. multiple births? • How does the clinic minimise Cycles of treatment the risk of multiple births? attempted You can find out more about multiple birth rates at clinics using Find out how many cycles (rounds our online Choose a Fertility Clinic of treatment) are attempted before search function. For each clinic we trying another approach or show firstly whether treatment stopping treatment altogether. resulted in a live birth and secondly whether a single baby or multiple policy birth occurred.

Clinics may replace up to two Your clinic should recommend embryos in women under 40 and a single embryo transfer (SET) if maximum of three in women aged you are at a high risk of having 40 or over. Transferring more than a multiple pregnancy (see p77). one embryo increases the risks of Further information is available at www.hfea.gov.uk/about-us/our- campaign-to-reduce-multiple- births Getting started: your guide to fertility treatment 27

Support groups What does our and counselling inspection report say about this clinic? Having emotional support is very important when going through Our inspection reports are fertility treatment. A clinic available online as part of our licensed by us must offer you an Choose a Fertility Clinic search opportunity to talk to a counsellor function. They can be useful in about the implications of your helping you find out more about suggested treatment before you how a clinic operates. consent to it. Some clinics offer this service Birth rates free while others charge for it. When researching clinics, you It’s only natural for you to want may want to ask about this and to know your chances of success. whether they have any support Choose a Fertility Clinic provides groups you can join. data for every clinic we license, showing the number of treatments carried out in a particular year and Faith and the number of pregnancies and language issues births that resulted. Does the clinic provide services These birth rates should be used in a way which fits in with your only as a general guide. religious or cultural beliefs? If You should not use them as a needed, you may also want to find personal prediction of your own out if the clinic offers interpreters chance of success. and/or translation services. 28 Getting started: your guide to fertility treatment

We show a clinic’s birth rates in two different ways: Patient ratings • whether the success rate is A great clinic isn’t just one that can above, below or consistent give you effective treatment, it’s with the national average also about being cared for by compassionate staff, feeling part of • the number of treatment cycles the decision making process about a clinic carried out and how your treatment, and receiving many resulted in a birth exceptional emotional support. The success of an IVF treatment Select a clinic from the search bar can be measured by looking at to see how patients currently how likely it is that a birth will receiving, or who have recently had result from a treatment cycle or treatment, rated their experience. from each embryo transferred. We show both in our data. Inspection rating It’s understandable that you may This shows how clinics meet our feel you want to focus on success standards. Our inspectors visit the rates, but the reality is that most clinic and look at the laboratory clinics are broadly all as good as and equipment, the clinic’s consent each other – small differences in and other procedures and the rates are usually down to the patient information. All clinics must different types of patients treated. have a licence to operate and the To help you make the best choice inspector’s assessment decides for you, our Choose a Fertility how long the licence should be. Clinic service also shows how We have produced a video other patients and our inspectors animation for our website that rate the clinic. further explains the factors you may wish to consider when choosing a clinic. Find this at www.hfea.gov.uk/choose-a-clinic Getting started: your guide to fertility treatment 29

How can I see birth The expert says... rates relevant to me? “The most important thing you Our Choose a Fertility Clinic can do when making decisions service shows the type of patients about fertility treatment is to each clinic treats, including their ensure you are well informed. age. This may help you identify Read all you can, don’t be clinics that treat patients with afraid to ask questions, talk similar needs to you and also to other people, including puts the success rates for that considering joining a patient- clinic in context. led support group. When you’re choosing a clinic, success rates Birth rates are broken down are important but they aren’t by treatment. With IVF and ICSI, the only thing that matters – we also show separate outcomes location, cost, funding, what for fresh or frozen embryos. treatments are offered and If you are using donated eggs, the even the atmosphere can all birth rate is not broken down by make a difference.” age. This is because donated eggs Kate Brian, come from women aged 35 or Fertility Network UK younger. The age of the egg donor, rather than your age as the recipient, determines the success of the treatment. 30 Getting started: your guide to fertility treatment

Clinical pregnancy rates Why do birth rates Where an ultrasound scan has differ between clinics? shown at least one heartbeat, this is a clinical pregnancy. Birth rates can be affected by: Clinical pregnancy rates can • the type of patients a give you more recent data. This clinic treats information is also available on the • the type of treatment a clinic clinic’s page on Choose a Fertility carries out Clinic under ‘Detailed statistics’. However, as not all clinical • a clinic’s treatment practices. pregnancies will develop into A clinic that treats proportionately births, these rates do not offer more patients with complicated a complete picture. diagnoses may have a lower average birth rate than a clinic that treats more patients with common fertility issues. Clinics may have higher birth rates for treatment if they treat women who have no male partner and are using donated sperm in their treatment. This is because the women are likely to be fertile and the donated sperm will be thoroughly screened and of a high quality. 31

What to expect at a clinic

Whichever clinic you choose, it is important that you feel comfortable, that you don’t feel rushed into any decisions, and that you have access to all the information you need. This section helps you prepare for visiting your clinic. 32 Getting started: your guide to fertility treatment

Tests Forms

The tests you have will depend on Welfare of the child your individual situation and what assessment type of treatment you are having. See the relevant sections of this You will be asked to complete a guide for more information. welfare of the child assessment before starting any treatment. If your own sperm, eggs or This is to enable the clinic to embryos are being used in your assess the impact of a potential treatment, you (and if applicable birth on both the baby and on your partner) will be screened for any other children you may have. HIV and hepatitis B and C. Testing For more information, see for human T cell lymphotropic virus www.hfea.gov.uk/code-of- (HTLV) I and II and other conditions practice/8 may also be performed if your medical and/or recent travel history If you do not have a partner, clinic indicates you may be at risk. staff are likely to ask about your Patients who donate their eggs, plans for caring for the child on sperm or embryos must also be your own. screened and this may include Consent forms more extensive tests. Before treatment can take place, you’re legally required to complete several consent forms. Which forms you’ll need to complete depends on your individual situation – find out more in the ‘What to think about before starting treatment’ section on p75. Getting started: your guide to fertility treatment 33

If you have any relevant You can find a list of questions information, such as the results you might like to ask on p34-35. of past tests or treatments, it is Your treatment options will be always helpful to bring those discussed with you. You can with you to your appointments. read more about the different You and, if applicable your partner, treatments in this guide and will be asked questions about your important information about what medical history and further to think about before starting investigations may be required. treatment is included on p75. You can make the most of your Once you and your clinician consultations by: have made a decision on how to proceed, your treatment plan will • preparing questions in advance be discussed with you in detail. • taking time to think things It’s important to remember that through – there can be a lot counselling is always available of difficult issues to consider (see p27). • remembering that the clinic staff are there to help you make the right choice. 34 Getting started: your guide to fertility treatment

• What are the benefits of the Questions treatment you’ve recommended and why do you think it’s the to ask at best option for me? Is it accepted by professional the clinic bodies? • How many patients at your clinic have had this treatment Your consultations with a doctor in the last two years and how or clinic can sometimes be many of them have become confusing. Remember that the pregnant/had a baby? staff are there to help you and will be happy to discuss your • Are there alternative questions and concerns. It’s treatments? If so, what do they vital that you feel fully informed involve and why do you think they are less suitable for me? and comfortable with the recommended treatment. • What other options are We’ve listed some questions available if this treatment that you may want to ask your doesn’t work? clinic so you can make the • How does my age affect the most of your consultations. choice of fertility treatment? • What drugs will I have to take and what side effects may they cause? • How will I take the drugs? Getting started: your guide to fertility treatment 35

• Are there any alternatives to the • Which tests will I need to have drugs you have mentioned? and how much will they cost? • Can you break down all the • What happens next? costs of this treatment? Might Do I (or my partner) need other costs arise? (Your clinic to do anything now? should give you a costed • What support is provided treatment plan). if treatment stops or fails? • How can these costs be reduced? If using donor sperm, • How can I change my lifestyle eggs or embryos: to boost my chance of success? How will this help? • Why has IVF been recommended and not IUI • What kind of counselling or (or vice versa)? advice service do you provide? Is there a charge for this, or • Will both my partner and how many free sessions can I be the legal parents of I have? the child? • Does this clinic have a patient • What information can I find support group I can join, or out about my donor? are there other groups you • What information can would recommend? my child find out about • Could you tell me more about the donor? how you will assess me before you give the go-ahead for treatment? 36 Getting started: your guide to fertility treatment

Treatment options

Your doctor or clinician will help you to decide on the best treatment for you according to your individual situation. This section gives you an overview of what each form of treatment involves. Getting started: your guide to fertility treatment 37

• gonadotrophins for certain rare Fertility drugs conditions in which no sperm Depending on your diagnosis, are produced, or your clinic may recommend • drugs that close the bladder using fertility drugs alone, or you neck if sperm are being may be offered them with other ejaculated into the bladder treatments such as intrauterine instead of the penis (retrograde insemination (IUI) or in vitro ejaculation). fertilisation (IVF). Commonly prescribed For women fertility drugs Your clinic may recommend using citrate (Clomid) fertility drugs as part of other Taken in pill form between days treatments (eg, IVF) and/or if: two and six of your cycle, Clomid • you have a very irregular cycle indirectly stimulates the ovaries and your is totally into producing eggs. It is used to unpredictable stimulate and/or regulate ovulation (for example, if you have polycystic • you are producing few eggs ovary syndrome (PCOS)). or none When taking this drug, you must • your infertility is caused by be monitored in a fertility clinic failure of the pituitary gland to check how many follicles (and (this controls your hormone hence eggs) develop. Because production). your ovaries are artificially For men stimulated to produce more eggs than would be released naturally, Drugs may be prescribed for men it increases your risk of having in certain situations. They include: twins. Read more about the risks • antibiotics to treat infection or of multiple births on p78. inflammation 38 Getting started: your guide to fertility treatment

Metformin Drugs to regulate your Taken in tablets two to three times treatment cycle a day, Metformin is used to treat During treatment, your doctor PCOS. It helps to stimulate will usually prescribe other drugs ovulation. for you to take at various times Gonadotrophins – hormones to give you more control over containing follicle-stimulating your treatment cycle. These may hormone (FSH), luteinizing include the following: hormone (LH) or a combination Nafarelin Buserelin and Used to stimulate the ovaries to goserelin (also known as produce eggs before cycles of IVF gonadotrophin-releasing treatment, or to treat PCOS when hormone (GnRH) analogues Clomid hasn’t worked, these or pituitary agonists) hormones are also used in cases Taken as a nasal spray several of infertility due to pituitary gland times daily, or by daily injection, failure and in some forms of male or injected monthly under the skin, infertility. They are delivered through this stops the natural menstrual daily injections and can be followed cycle by blocking the release of by an injection of human chorionic hormones that regulate it. This is gonadotrophin (hCG) to trigger the usually taken before and during final stage of egg maturation. your gonadotrophin injections. Getting started: your guide to fertility treatment 39

Cetrotide and Orgalutran – Bromocriptine and Cabergoline gonadotrophin-releasing Taken in tablet form to reduce high hormone antagonists levels of the hormone prolactin, These drugs are usually which can interfere with the started a few days after starting production of FSH, these can gonadotrophin injections and are help reduce the effects of ovarian delivered as daily under the skin hyper-stimulation syndrome (subcutaneous) injections. They (OHSS) if you are at risk. stop ovulation until the eggs are ready to be collected as part of Side effects the IVF cycle. You may experience side effects while taking fertility drugs, or you Progesterone (including may feel fine. Cyclogest, Gestone or Crinone) Make sure you let your clinic Taken to thicken the lining of the know if you have any unexpected womb, progesterone can help reactions. The following symptoms to maintain pregnancy after IVF have all been associated with their or IUI. It can be taken as a vaginal use: stomach pains, hot flushes, suppository, pill or gel, or by mood swings, heavy periods, injection into the buttock. It is breast tenderness, insomnia, delivered either on the day the increased urination, spots, embryos are returned to the headaches, weight gain, dizziness, womb, or after the injection of and vaginal dryness. Read more the pregnancy hormone hCG. about the risks of fertility treatment on p77. 40 Getting started: your guide to fertility treatment

• you are using your partner’s In vitro frozen sperm in your treatment fertilisation (IVF) and IUI is not suitable for you IVF treatment involves the • you are using donated eggs or fertilisation of an egg (or eggs) your own frozen eggs in your outside the body. The treatment treatment can be performed using your • you are using embryo testing own eggs and sperm, or to avoid passing on a genetic using either donated sperm or condition to a child (see p61). donated eggs, or both. How does IVF work? Is IVF for me? IVF techniques vary according to Your clinic may recommend IVF if: your individual circumstances and • you have been diagnosed with the approach of your clinic. Before unexplained infertility your treatment starts, you will need to complete various consent forms • your fallopian tubes are blocked (see p81). You and, if applicable, your partner may also need to have • other techniques such as blood tests to screen for HIV, fertility drugs or intrauterine hepatitis B, hepatitis C and human insemination (IUI) have not been T cell lymphotropic virus (HTLV) successful I and II. • there are problems with your sperm but not severe enough to require intra-cytoplasmic sperm injection (ICSI) Getting started: your guide to fertility treatment 41

Treatment then typically involves 3. Checking on progress the following stages: The clinic will monitor your progress throughout the drug treatment For women through vaginal ultrasound scans 1. Suppressing your natural and, possibly, blood tests. Between monthly hormone cycle 34 and 38 hours before your eggs As a first step you will be given a are due to be collected you will drug to suppress your natural cycle, be given a hormone injection to which you can administer yourself help your eggs mature. This is in the form of a daily injection or a likely to be human chorionic nasal spray. The drug treatment gonadotrophin (hCG). continues for about two weeks. 4. Collecting the eggs 2. Boosting the egg supply Your eggs will usually be collected After your natural cycle has been using ultrasound guidance while suppressed, you will be given a you are sedated. A hollow needle type of fertility hormone known is attached to the ultrasound probe as gonadotrophin (see p38). and is used to collect the eggs You will usually take this as a daily from the follicles on each ovary. injection for around 12 days. The You may experience some cramps, hormone will increase the number feel a little sore and bruised and/or of eggs you produce. experience a small amount of bleeding from the vagina. After your eggs have been collected, you will be given medication in the form of pessaries, injection or gel to help prepare the lining of your womb for embryo transfer. 42 Getting started: your guide to fertility treatment

5. Fertilising the eggs 6. Embryo transfer Your eggs will be mixed with your If you are under the age of 40, partner’s or the donor’s sperm and one or two embryos may be cultured in the laboratory for 16–20 transferred. If you are 40 or over, hours after which they are checked a maximum of three may be used. for signs of fertilisation. The number of embryos Those that have been fertilised transferred is restricted because (now called embryos) will be grown of the risks associated with multiple in the laboratory incubator. The births. Due to this, your clinic will embryologist will monitor their recommend single embryo transfer development and the best will then (SET) if they feel it is the best be chosen for transfer. option for you (see p78). Any remaining embryos of suitable The transfer may happen after two quality can be frozen for future use. to three days, when the embryo(s) Read more about embryo freezing has reached what is known as the on p67. ‘cleavage stage’, or up to six days later when it has reached the ‘blastocyst’ stage. Many clinics transfer embryos at the blastocyst stage to improve chances of pregnancy after SET. This is particularly useful if you are a younger woman with a good chance of achieving pregnancy from IVF. Getting started: your guide to fertility treatment 43

Your doctor may also suggest you try blastocyst transfer if you have Key facts produced good quality embryos in The latest figures show that a previous IVF cycle but they failed around a third of women under to implant in the womb. 35 have a baby after undergoing More information is available on IVF or ICSI treatment with their our website at www.hfea.gov.uk/ own fresh eggs (ie not eggs treatments/explore-all-treatments/ stored from a previous decisions-to-make-about-your- treatment cycle). embryos For the latest figures visit During the procedure, a doctor www.hfea.gov.uk or nurse will insert a speculum into your vagina. This is similar For men to having a cervical smear taken, Around the time your partner’s when a speculum is used to hold eggs are collected, you will be the vagina open so the asked to produce a sample is visible. of sperm. A fine tube (catheter) is then passed The sperm will be washed and through the cervix, normally using prepared so the active, normal ultrasound guidance. The embryos sperm are separated from the are passed down the tube into poorer-quality sperm. the womb. If you have stored sperm, it will This is normally a pain-free be removed from frozen storage, procedure and usually no sedation thawed and prepared in the is necessary, but you may same way. experience a little discomfort because you need a full bladder if ultrasound is used. 44 Getting started: your guide to fertility treatment

IVF treatment options Assisted hatching Natural cycle IVF Before an embryo can attach to the wall of the womb, it has to In natural cycle IVF, the one egg break out or ‘hatch’ from its outer you release during your normal layer, the zona pellucida. It has monthly cycle is collected and been suggested that making a hole fertilised. No fertility drugs are in, or thinning, this outer layer may used in this treatment. help embryos to hatch, which may Mild stimulation IVF increase the chances of pregnancy. With mild stimulation IVF, you Pre-implantation genetic receive a lower dose of fertility screening (PGS) drugs over a shorter period of PGS (also known as aneuploidy time than with conventional IVF. screening) involves checking (IVM) the chromosomes of embryos conceived by IVF or ICSI for In the IVM process, eggs are common abnormalities. removed from your ovaries when they are still immature. They are Chromosomal abnormalities then matured in the laboratory are a major cause of the failure before being fertilised. of embryos to implant, and of miscarriages. They can also cause conditions such as Down’s syndrome. Getting started: your guide to fertility treatment 45

Is PGS for me? 3. A trained embryologist removes one or two of the cells Your specialist may recommend (blastomeres) from the embryo. PGS if: 4. T he chromosomes are • you are over 35 and have a examined to see how many higher risk of having a baby there are and whether they with a chromosome problem are normal. (such as Down’s syndrome) 5. One, two or three of the • you have a history of recurrent embryos without abnormal miscarriages numbers of chromosomes • you have had several are transferred to the womb unsuccessful cycles of IVF so that they can develop. Any where embryos have been remaining unaffected embryos transferred, or can be frozen for later use (see p71). • your sperm are known to be at high risk of having chromosome 6. Those embryos that had problems. abnormal chromosomes are allowed to perish or may be How does PGS work? used for research (with your The procedure for PGS is usually consent) – see p84. as follows: There are possible variations 1. You undergo normal IVF or ICSI to this procedure and the treatment to collect and fertilise trophectoderm biopsy technique your eggs (see p40 and 46). described on p63 can be used in some cases. Find out more on 2. The embryo is grown in the our website at www.hfea.gov.uk/ laboratory for two to three days treatments/embryo-testing-and- until the cells have divided and treatments-for-disease/pre- the embryo consists of about implantation-genetic-screening-pgs eight cells. 46 Getting started: your guide to fertility treatment

Your clinic may recommend it if: Intra-cytoplasmic sperm injection (ICSI) • you have a very low sperm count • other problems with the sperm Intra-cytoplasmic sperm have been identified, such as injection (ICSI) differs from poor morphology (abnormal conventional in vitro fertilisation shape) or poor motility (not (IVF) in that the embryologist moving normally) selects a single sperm to be injected directly into an egg, • during previous attempts at IVF instead of fertilisation taking there was failure of fertilisation or an unexpectedly low place in a dish where many fertilisation rate sperm are placed near an egg. • you need sperm to be collected Is ICSI for me? surgically from the testicles or ICSI enables fertilisation to happen epididymis (a narrow tube inside when there are very few sperm the scrotum, where sperm are available. stored and matured); for example because you have had a vasectomy, you do not ejaculate sperm, or because you have extremely low sperm production • you are using frozen sperm in your treatment which is not of optimum quality • you are using embryo testing to avoid passing on a genetic condition to a child (see p61). Getting started: your guide to fertility treatment 47

How does ICSI work? Treatment then typically involves the following: Before your treatment starts you will need to complete various For women consent forms (see p81) and you, You take fertility drugs to stimulate and if applicable your partner, may your ovaries to produce more need to have blood tests to screen eggs, as for IVF, and your progress for HIV, hepatitis B and C and will be monitored through vaginal human T cell lymphotropic virus ultrasound scans and possibly (HTLV) I and II. blood tests (read more about this on p41). The eggs are then collected using the same procedure as IVF (see p41) and each egg is injected with a single sperm from your partner or donor. The rest of the process is also the same as IVF – see ‘fertilising the eggs’ and ‘embryo transfer’ on p42-43. You are more likely to become pregnant with twins or triplets if more than one embryo is transferred so your clinic will recommend single embryo transfer (SET) if they feel it is the best option for you. Read more about this and the risks of multiple births on p78. 48 Getting started: your guide to fertility treatment

Any suitable remaining embryos • Sperm can also be retrieved can be frozen for future use. More from the testicles, a process information on freezing embryos known as ‘testicular sperm is available on p67. aspiration’ or TESA. For men • It is also possible to remove tiny quantities of testicular An embryologist will examine tissue from which sperm can your sperm under a microscope be extracted. This procedure and decide whether ICSI could is called ‘testicular sperm increase your chances of fathering extraction’ or TESE. For more a baby. information about PESA, TESA The next step depends on whether and TESE, speak to your doctor. you are able to provide sperm Or: without a medical procedure: • If you have stored sperm, it • If you can, you produce a fresh will be removed from frozen sperm sample on the same day storage, thawed and prepared as your partner’s eggs are for treatment. collected. Or: • Sperm can be collected directly from the epididymis using a type of fine syringe. This is known as ‘percutaneous epididymal sperm aspiration’ or PESA. Getting started: your guide to fertility treatment 49

A single sperm is then injected into each egg. ICSI provides Key facts the opportunity for fertilisation • ICSI success rates are very to happen, but it is not guaranteed similar to IVF rates. to succeed. • A low sperm count caused Finally, if fertilisation does take by genetic problems could place, the embryos will be cultured be passed on to a male in the laboratory for up to six days child, so you may want and then between one and three to undergo genetic tests of the best-quality embryos will before going ahead with be transferred to the womb. ICSI. Infertile men with a low Zero sperm count sperm count or no sperm in their ejaculate may be If you have a zero sperm count tested for cystic fibrosis (other than caused by vasectomy), genes and for chromosome the chances of retrieving sperm abnormalities. You may surgically by PESA, TESA or TESE want to discuss the full may be very low. implications of taking these In this situation, you might tests with your clinician and consider having a surgical retrieval the clinic’s counsellor before as a ‘dummy run’ and storing any going ahead. sperm that are obtained. If no sperm are retrieved, you may want to consider donor insemination (DI) or IVF with donor sperm instead. 50 Getting started: your guide to fertility treatment

In the past IUI was offered if you Intrauterine had unexplained infertility, mild insemination (IUI) endometriosis or male fertility problems. However, the National IUI involves a laboratory Institute for Health and Clinical procedure to separate fast- Excellence (NICE) (an organisation moving sperm from more which provides national guidance sluggish or non-moving sperm. and advice to improve health and It can be performed with your social care) has advised that it partner’s sperm or donor sperm should now not routinely be offered (known as donor insemination). in these situations except for exceptional circumstances. Is IUI for me? Instead, if this applies to you, you You may be offered IUI if: are advised to try to conceive for • you are using donated sperm a total of two years before IVF will in your treatment (donor be considered (this can include insemination) up to one year before your fertility investigations). • you are unable (or would find it very difficult) to have vaginal IUI options intercourse, for example If your clinic has recommended IUI because of a physical disability treatment, you may want to have a or psychosexual problem discussion with your clinician about • you have a condition that the risks involved in using fertility means you need specific help drugs to boost egg production and to conceive (for example, if whether IUI without fertility drugs you’re a man who is HIV positive might be suitable for you. and you have undergone sperm washing to reduce the risk of passing on the disease to your partner and potential child). Getting started: your guide to fertility treatment 51

How does IUI work? blood tests or urine tests to identify when you are about Patency health tests to ovulate. IUI can only begin once it has been Or: confirmed that your fallopian tubes are open and healthy. This will If you use fertility drugs to usually be checked through a tubal stimulate ovulation, vaginal patency test as part of your ultrasound scans will be used to assessment by the fertility clinic. track the development of your eggs. As soon as an egg is mature, This may involve a laparoscopy, an you will be given a hormone operation in which a dye is injected injection to stimulate its release. through your cervix as the pelvis is inspected for blockages with a The sperm will be inserted 36–40 telescope that has a tiny camera hours later. The doctor will first attached (a laparoscope). insert a speculum into your vagina, as in a smear test, to keep your Alternatively, you may undergo vaginal walls apart. A small a hysterosalpingo-contrast catheter (a soft, flexible tube) will sonography (HyCoSy) – which then be threaded into your womb involves using a vaginal ultrasound via your cervix. The best-quality probe to check the fallopian tubes sperm will be selected and for blockages – or a inserted through the catheter. hysterosalpingogram, an x-ray of your fallopian tubes. The whole process only takes a few minutes and is usually painless. The procedure Some women may experience For women a temporary, menstrual-like cramping. You may want to rest If you are not using fertility drugs, for a short time before going home. IUI will be performed between day 12 and 16 of your monthly cycle – with day one being the first day of your period. You will be given 52 Getting started: your guide to fertility treatment

For men Key facts You will be asked to produce a sperm sample on the day the • Latest figures (2014) show treatment takes place. that when not using fertility drugs, 10.8% of women The sperm will be washed to under 35 having IUI with remove the fluid surrounding them partner sperm get pregnant. and the rapidly moving sperm will When using fertility drugs, be separated out from the slower the percentage rises to sperm. 12.9%. For more figures, The rapidly moving sperm will be visit the Choose a Fertility placed in a small catheter to be Clinic section of our website inserted into the womb. www.hfea.gov.uk/choose-a- clinic/clinic-search If you are using donated or frozen sperm, it will be removed from • IUI itself is normally quite frozen storage, thawed and straightforward and prepared in the same way. painless. However, there are risks associated with the If IUI is unsuccessful fertility drugs that are often used with this treatment. It You may want to talk to your can also be time consuming clinician about other procedures, as it involves multiple trips such as IVF. to your clinic. • Your clinic should provide you with the contact details of a counsellor to support you through your treatment. Getting started: your guide to fertility treatment 53

A clinic is likely to recommend Using donated sperm, donor conception if: eggs or embryos in your treatment • you are not producing eggs or sperm of your own Around 1,750 babies are born • your own sperm or eggs are in the UK each year as the unlikely to result in conception result of treatment with donated sperm, eggs or embryos. The • you have a high risk of passing experience of people who have on an inherited disease had donor-conceived children • you are in a same sex shows this can be a very relationship, or positive way to create a family. • you are single. Is donor conception If you are considering using for me? donated sperm, eggs or embryos, Using donated sperm, eggs or you will need to think about some embryos is a major decision and complex issues before starting you should take your time to think treatment. For this reason, you will about whether it is right for you. be offered counselling; many You may want to discuss your clinics regard it as essential and feelings with friends, family or will not offer donor conception a professional counsellor before treatment without it. Try to also talk proceeding. to people who already have donor- conceived children. 54 Getting started: your guide to fertility treatment

You may want to contact the If you are looking for a sperm Donor Conception Network, a donor, some clinics may give you supportive network of families the option of using imported sperm with donor-conceived children: from overseas. You can find more www.dcnetwork.org information about this on our website: www.hfea.gov.uk/ Where do I start? treatments/explore-all-treatments/ Once you have decided, in using-donated-eggs-sperm-or- consultation with your clinician, embryos-in-treatment/ that using donated sperm, eggs Clinics may offer you eggs or or embryos in your treatment is sperm which have been donated suitable for your circumstances, as part of a ‘sharing’ arrangement. a donor who is acceptable to you This is where another man or must be found. woman who is undergoing fertility Some clinics recruit their own treatment donates some of their sperm and egg donors and have a eggs or sperm to you in return for range of suitable donors available. benefits from the clinic such as At other clinics you may be put on discounted treatment, reduced a waiting list – ask them about how storage costs or decreased long they would expect you to wait. waiting times. It is worth contacting a number Alternatively, you may wish to ask of clinics at the start to establish someone you know, such as a availability so you can choose a friend or suitable relative, to donate clinic which best meets your needs sperm or eggs at your clinic for use (see p24-30 for more information in your treatment. on how to choose a clinic). It is also possible to find a donor via an introduction website but be aware that these sites are not regulated by us and vary enormously in how they operate. Getting started: your guide to fertility treatment 55

If you use a website to find a • clinics ensure there are limits sperm donor, the safest route for on the number of families all those involved is for donation created by each donor. and treatment to take place at a • the donor will have no legal clinic licensed by us, rather than rights or responsibility for the undergoing a private arrangement child (see p60). (ie, where a man provides his sperm directly to the woman). • the donor-conceived child can The same applies if you are using find out identifiable information donor sperm from a friend or about the donor when they suitable relative. reach 18. We recommend that donation and Co-parenting treatment takes place at a clinic It may be possible to have licensed by us because: treatment with someone you know, • donors must answer a series but who you are not in a relationship of questions to ensure they are with, where you both wish to be the suitable. legal parents of the child. • licensed clinics check donors’ In these circumstances, the person personal and family medical you are having treatment with will histories for inherited diseases. not be registered as a donor but will be required to undergo • all donors go through stringent screening to reduce the risk of screening checks to ensure transmitting infections such as HIV. they are not carrying infections such as HIV, hepatitis B and C or cytomegalovirus (CMV). 56 Getting started: your guide to fertility treatment

What can I find out Your child will also be able about my donor? to apply to us for non-identifying information when they are 16. If you are using a donor you When they turn 18, they can obtain don’t know, you can find out non- identifying information including identifying information about them name, date of birth and last known from your clinic at the point of address (as long as the donor treatment or from us after your donated after 1 April 2005; before child is born. This information that donation was anonymous). can include: Donors are entitled to request • a physical description (height, information from us about the weight, eye and hair colour) number, sex and year of birth of • the year and country of birth any people born as a result of their donation. No other information can • their ethnicity be obtained so the onus is on a • whether they had any children donor-conceived child to get in at the time of donation, how touch with their donor should they many and their gender wish and not vice versa. • their marital status For more information, visit www.hfea.gov.uk/donation/donors/ • their medical history rules-around-releasing-donor- • a goodwill message they have information written to any potential children. Getting started: your guide to fertility treatment 57

Using donated eggs Key facts Donated eggs can be used in • Professional guidelines either in vitro fertilisation (IVF) or state that sperm from both intra-cytoplasmic sperm injection known and unknown donors (ICSI). Read more about these (or from a man you are not treatments in the previous sections. in an intimate physical How does using donated relationship with) should be eggs work? quarantined for six months before your treatment. This Before treatment takes place, is to allow time to detect you will need to complete various infections such as HIV consent forms (see p81). which are sometimes only The procedure for using donated evident after a period of eggs varies depending on your time. However, in some clinic and the fertility treatment you circumstances this may are undergoing. A typical procedure not be the case if your clinic may involve the following steps: checks the sperm using ‘serological and nucleic acid amplification testing’. • If you know your donor and you both want him to be involved in some way in your child’s life, you may want to consider a donor or co-parenting agreement. But these agreements are not legally binding and you should seek independent legal advice before drawing one up. 58 Getting started: your guide to fertility treatment

For women For men 1. You and your donor will be 1. Unless you are using donor given medication to sperm, before treatment takes synchronise your menstrual place you will give a sperm cycles. You will also be given sample to check that your medication to prepare the sperm are healthy and active. endometrium lining of your 2. On the day that the eggs are womb for embryo transfer. collected, you will give another 2. The donated eggs will be sperm sample. fertilised using IVF or ICSI. 3. In the laboratory, the sperm 3. When the embryos begin to sample is mixed with the develop, they will be transferred donor eggs to fertilise them, to your womb as in conventional or fertilised by ICSI and then IVF. As the eggs will be from transferred to the womb. donors aged 35 or younger, no more than two embryos will be transferred. Alternatively, the embryos may be frozen after they have been fertilised. This avoids the need to synchronise your with that of the donor and may reduce the stress of the treatment. Getting started: your guide to fertility treatment 59

Using your eggs in your Using donated sperm partner’s treatment Donated sperm can be used If you are in a same sex female in intrauterine insemination (IUI) couple and you want to use your (known as donor insemination) eggs and your partner carry the or IVF. The treatment you have baby, the process for collecting will depend on your individual your eggs will be as follows: circumstances. Read more about the process for each on p50-52 1. After being screened for and p40-45. sexually transmitted diseases and some genetic disorders, Using donated embryos you will be given a series of hormone injections to help Embryos can be donated by develop and mature the eggs people who have completed their within the ovaries. fertility treatment or by those who cannot use them in their own 2. Once the eggs are matured, treatment. they are collected while you are sedated by inserting a needle How does using donated into the ovaries through the embryos work? vagina. Before treatment takes place, The eggs will then be fertilised, you will need to complete various usually using IVF. consent forms (see p81). The donated embryos will have previously been frozen. You can read more about the procedure for using frozen embryos on p67. 60 Getting started: your guide to fertility treatment

Legal considerations Telling your child about their origins Legal parenthood If your child or children are If you undergo treatment at a UK conceived as a result of donation, clinic licensed by us, the donor has telling them about their origins can no legal rights or responsibility for be a sensitive issue. However, if the child. discussed honestly and at the right The woman giving birth to the child time, it doesn’t need to be difficult is always the legal mother when the to talk about. If you, as the parent, child is born. However, if you are are open about how your child was using donor sperm or embryos and conceived there is no reason they you or your partner are not married should feel any different from any or in a civil partnership, your other child. partner will only be the legal parent Read about the rights of donor- of the child if you both complete the conceived people and their relevant legal parenthood consent parents, as well as how to get the forms before treatment. Full details support you need, on our website of how the law affects you are at www.hfea.gov.uk/donation/ available at www.hfea.gov.uk/ donor-conceived-people-and- code-of-practice/6. More their-parents information on the consent forms you will need to complete is on p81. Withdrawing consent The sperm, egg or embryo donor can change their mind about their donation up to the point of embryo transfer or insemination. The donor can also withdraw their consent to the future use of their frozen sperm, eggs (even where embryos have been created) or embryos. Getting started: your guide to fertility treatment 61

There are only a small number of Genetic testing clinics in the UK that offer embryo Embryos created through in testing – you can find the one vitro fertilisation (IVF) or intra- nearest you using the Choose a Fertility Clinic search function on cytoplasmic sperm injection our website at www.hfea.gov.uk/ (ICSI) can be tested for choose-a-clinic/clinic-search and certain inherited conditions refining by embryo testing facilities. or abnormalities before they are transferred to the womb. Pre-implantation genetic This helps to ensure that only diagnosis (PGD) unaffected embryos are put Pre-implantation genetic diagnosis in the womb during treatment. (PGD) enables people with an Conventional pre-natal tests for inheritable condition in their family genetic diseases cannot be carried to avoid passing it on to their out until the 11th week of children. It involves checking the pregnancy. Testing embryos before genes and/or chromosomes of they are implanted can help avoid embryos created through IVF. miscarriage or having to make a Is PGD for me? difficult decision about whether to end an existing pregnancy. Your specialist may recommend PGD if: If you are considering genetic testing, you should talk to your GP • you have ended previous to go through the options available. pregnancies because of a Your GP will also refer you to see a serious genetic condition genetic specialist at your local • you already have a child with hospital or fertility clinic. a serious genetic condition • you have a family history of a serious genetic condition, or • you have a family history of chromosome problems. 62 Getting started: your guide to fertility treatment

Which genetic conditions can be How does PGD work? tested for during PGD? The procedure for PGD is usually PGD can be used to test for as follows: virtually any genetic condition 1. Y ou undergo normal IVF or ICSI where a specific gene is known to treatment to collect and fertilise cause that condition. It is currently your eggs (see p40 and 46). approved to screen for over 250 genetic conditions – the full list 2. The embryo is grown in the is available on our website at laboratory for two to three days www.hfea.gov.uk/pgd-conditions until the cells have divided and the embryo consists of around If you want to screen for a eight cells. condition which has not been approved, your clinic will need to 3. A trained embryologist removes make an application to us. For it one or two of the cells to be approved, we must, by law, (blastomeres) from the embryo. agree that the genetic condition 4. T he cells are tested to see if the meets certain criteria (including embryo from which they were that it is serious enough). Even if removed contains the gene that we have approved a condition for causes the genetic condition in testing, clinics must make their your family. own judgment about whether PGD is appropriate for you. 5. The embryo unaffected by the condition is transferred to the womb to allow it to develop. 6. Any suitable remaining unaffected embryos can be frozen for later use (see p67). Those embryos that are affected by the condition are allowed to perish or, with your consent, used for research (see p84). Getting started: your guide to fertility treatment 63

Trophectoderm biopsy Key facts It is possible that, instead of removing and testing one or two • Genetic testing can also cells from a two to three-day-old reveal other information embryo, some clinics may allow about you. Have a full the embryo to develop to five to six discussion with your days, when there are 100-150 cells. genetic counsellor about what information you could At this stage, cells within an find out and the implications embryo have separated into two of this. types: cells which will form the fetus (inner cell mass) and cells which will form the placenta (trophectoderm). More cells can be removed at this stage (from the trophectoderm) without compromising the viability of the embryo, possibly leading to a more accurate test. Sex selection In the UK, it is illegal to use embryo testing for social sex selection. You can use sex selection only to avoid having a child with a serious medical condition, not for non- medical reasons. • Find out more about PGD on our website: www.hfea.gov.uk/ treatments/embryo-testing- and-treatments-for-disease/ pre-implantation-genetic- diagnosis-pgd 64 Getting started: your guide to fertility treatment

Pre-implantation Is PTT for me? tissue typing (‘saviour You should talk to the clinician who siblings’) is treating your child about whether For children with life-limiting PTT is an appropriate option for blood disorders such as beta you. It may be suggested as an thalassaemia, Fanconi’s anaemia option if: and Diamond Blackfan anaemia, • your child has a life-limiting one of the best available blood disorder that can only be treatments is a transfusion of stem treated through a donation from cells from cord blood provided by a compatible donor a tissue-matched donor. • there are no closely-related Preimplantation tissue typing compatible donors available in (PTT) offers parents the chance of your family and your clinician conceiving a child who is a tissue has established that an match with their older sibling. unrelated donation from a tissue Using a tissue-matched donor who bank would not be suitable is a close relative of the recipient often means that treatment is more • the condition your child suffers likely to be successful than using a from has an established genetic tissue-matched unrelated donor. basis and you also want to ensure that any future children In the media, those born following you have do not inherit the this procedure have sometimes condition. been referred to as ‘saviour siblings’. How does PTT work? PTT uses the same technique as PGD but involves testing the tissue type of the embryo. Read more about PTT on our website at www.hfea.gov.uk/treatments/ embryo-testing-and-treatments- for-disease/pre-implantation- tissue-typing-ptt Getting started: your guide to fertility treatment 65

We would recommend that you Treatment add ons have a full discussion with a During fertility treatment, your specialist at your clinic about the clinic may offer you ‘extras’ on top evidence for these treatments and of IVF or ICSI, such as reproductive why a certain one might be immunology, time-lapse imaging particularly recommended for you. and pre-implantation genetic You may also want to carry out screening (PGS). These add ons your own further research before could be at an additional cost, or choosing whether to proceed. To some clinics might include them make it easier to identify which add with their treatment packages. ons have good evidence Some add ons are also offered on supporting their effectiveness and the NHS. safety we have created a rating system on our website, giving the Treatment add ons are typically treatments either a green, yellow or emerging techniques that could red symbol based on these criteria. have shown some promising results in initial studies but haven’t Find out more about what add on necessarily been proven to be treatments involve and what effective and some may actually evidence there is for them so you cause you harm. can make an informed decision at www.hfea.gov.uk/treatments/ explore-all-treatments/treatment- add-ons 66 Getting started: your guide to fertility treatment

Storing eggs, sperm and embryos

You may consider storage if you want to preserve your fertility, or if you have surplus embryos or sperm after IVF or ICSI treatment which you want to use in future treatment. This section gives you an overview of what’s involved in the freezing process. Getting started: your guide to fertility treatment 67

To be stored, eggs, sperm and you can find your nearest clinic embryos are frozen by cooling them using the advanced search on our slowly or by using a process called Choose a Fertility Clinic search vitrification (fast freezing and then function: www.hfea.gov.uk/choose- storing in tanks of liquid nitrogen). a-clinic/clinic-search Your clinic will ask you to fill out If you have an infectious disease, a consent form specifying how such as HIV, you will need to find a long you want to store for (more clinic which has dedicated storage on p81). – The standard storage facilities to keep eggs, sperm or period is 10 years and this can embryos. You can filter for this be exceeded only in certain using the advanced search option. circumstances. Your clinician will be able to explain whether Freezing and storing you can do this and for how long you may be able to store for. embryos You must let the clinic know if Often with IVF or ICSI, people you change address. This is so have a number of unused embryos that they can contact you when after their first cycle. Some people the storage period is coming to choose to freeze them for use in an end. If they cannot contact later treatment cycles or to donate you when the storage period ends, for use in others’ treatment, they may take your eggs, sperm research purposes or training. or embryos out of storage and Your chances of becoming allow them to perish. pregnant with a thawed frozen Where do I start? embryo are not affected by the length of time the embryo has If you haven’t had fertility treatment been stored. But not all embryos before and want to store your will survive freezing and eventual eggs, sperm or embryos, for thawing when they come to be example to preserve your fertility, used. Very occasionally no embryos will survive. 68 Getting started: your guide to fertility treatment

Is embryo freezing and storage What happens when embryos for me? are frozen and stored? You may consider freezing your You and, if applicable, your partner embryos for the following reasons: will need to give written consent for your embryos to be stored • It gives you the option of using (see p82). the embryos in future IVF or ICSI cycles. Embryos will be created through IVF or ICSI and those of suitable • If your treatment needs to be quality will be frozen. See p40 cancelled after egg collection and 46 for more information on (for example, if you have a bad IVF and ICSI. reaction to fertility drugs), you may still be able to store your What happens when I want to embryos for future use. use the frozen embryos? • If you have a condition, or are The exact procedure for using your facing medical treatment for frozen embryos varies, depending a condition, that might affect on your personal circumstances your fertility (embryo freezing and the type of treatment your is currently the most effective clinic offers. way for women to preserve The initial steps depend on their fertility). whether you are ovulating regularly. • You are at risk of injury or death (eg, you’re a member of the Armed Forces who is being deployed to a war zone). • You are due to undergo a sex change operation. Getting started: your guide to fertility treatment 69

If your periods are regular and your clinic offers treatment every day, Key facts your doctor may suggest using • You may also decide to a natural cycle. In this case, freeze your unused embryos ultrasound scans may be used to for research or training check your developing eggs and purposes, or for use in the thickness of the endometrium others’ treatment. lining of your uterus. Urine or blood tests may be used to check when • Find out more about you are ovulating (releasing an egg). donating your frozen embryos on our website at If your periods aren’t regular, or www.hfea.gov.uk/donation/ you don’t have them at all, your donors/donating-your- doctor may suggest you use drugs embryos You can learn to suppress your natural cycle and more about the human trigger a ‘false’ period. You are embryo research we license then given medication to help at www.hfea.gov.uk/ prepare the endometrium lining donation/donors/donating- for an embryo. to-research When the endometrium is at its most receptive, the clinic’s embryologist thaws the embryos. Up to two or three embryos may be transferred using the embryo transfer procedure described on p42. Your clinic will recommend single embryo transfer (SET) if they feel it is the best option for you due to the risks associated with multiple births (see p78). 70 Getting started: your guide to fertility treatment

• you’re at risk of injury or death Freezing and storing (eg, you’re a member of the sperm Armed Forces who is being deployed to a war zone) Sperm cells have been frozen, thawed and successfully used in • you’re about to undergo a sex treatment for more than 40 years, change operation. although not all sperm survive the freezing process. What happens when sperm are frozen and stored? Is sperm freezing and storage for me? 1. Before you agree to the freezing and storage of your sperm, You may want to consider it if: your clinician will explain the process involved. • you have a condition, or are facing medical treatment for 2. You will be screened for a condition, that may affect infectious diseases, including your fertility HIV and hepatitis B and C. • you’re about to have a 3. You will need to give written vasectomy consent for your sperm to be stored (see p81). • you have a low sperm count or the quality of your sperm 4. A t the clinic, you produce is deteriorating a fresh sample of sperm. • you have difficulty producing 5. The sperm are frozen and a sample on the day of fertility then stored in a storage tank treatment containing liquid nitrogen. • you had a medical procedure to collect sperm for ICSI treatment and there are surplus sperm which you’d like to store for use in future treatment Getting started: your guide to fertility treatment 71

What happens when I want • you have a condition, or are to use my sperm? facing medical treatment for a condition, that may affect Your treatment options may your fertility include IUI, IVF or, if your sperm are not of optimum quality, ICSI. • you are concerned about your You can read more about these fertility declining as you get treatments in this guide. older and are not currently in a position to have a child Freezing and storing • you are at risk of injury or death eggs (eg, you’re a member of the Armed Forces who is being The use of frozen eggs in treatment deployed to a war zone) is a relatively new development. Very few babies have been born • you are about to undergo a sex in the UK after treatment using change operation. patients’ own frozen eggs What happens when eggs are (although more have been frozen? born from donor eggs). The procedure for freezing and However, vitrification has recently storing eggs is as follows: been shown to improve the chance of eggs surviving the freeze-thaw 1. Before you agree to the freezing process and therefore increase the and storage of your eggs, your success rate. clinician will explain the process involved, including the risks. Is egg freezing and storage Your clinic should also offer you for me? the opportunity to discuss your Storing your eggs may enable you feelings and any concerns with to use them for treatment in the a specialist counsellor. future. You may want to discuss 2. You will be screened for storing your eggs with your clinic if: infectious diseases, including HIV and hepatitis B and C. 72 Getting started: your guide to fertility treatment

3. You will need to give written consent for your eggs to be Ovarian tissue freezing stored (see p82). If you are about to have treatment 4. E ggs are collected using the for cancer which may affect your same procedure as for future fertility and you are not able conventional IVF (see p40). to freeze your eggs or embryos, ovarian tissue freezing may be 5. Cryoprotectant (freezing an option. solution) is added to protect the eggs when they are frozen. Is ovarian tissue freezing for me? 6. The eggs are frozen either by cooling them slowly or by Ovarian tissue freezing is in the vitrification. very early stages of use but it may be a suitable option for: What happens when I want to use my eggs? • girls or some women wishing to preserve their fertility before Your treatment options may undergoing cancer treatment include in vitro maturation (IVM), (eg, if there is not enough time IVF or, if the sperm you are using to undergo an egg collection is not of optimum quality, ICSI. You before treatment starts) can read more about IVF and ICSI in this guide and information about • girls who are undergoing IVM is available on our website at medical treatment which may www.hfea.gov.uk/treatments/ affect their future fertility but explore-all-treatments/ivf-options who have not reached puberty yet and do not therefore have any mature eggs to collect from their ovaries for egg freezing. Getting started: your guide to fertility treatment 73

For advice on ovarian tissue freezing, please speak to your Testicular tissue relevant medical professional, freezing such as oncology and/or fertility Researchers are also currently specialists. exploring testicular tissue freezing What does ovarian tissue as a fertility preservation option freezing involve? for men and boys undergoing cancer treatment. Ovarian tissue freezing involves either taking a whole ovary or small Is testicular tissue freezing pieces of tissue from an ovary, for me? containing eggs, which is then Storing sperm is the only frozen and stored. established way to preserve male The ovary or tissue could later be fertility. Studies have shown that transplanted back to potentially sperm can be retrieved and stored restore natural fertility. However, from patients as young as 13 years ovarian tissue is fragile under some old and storing sperm for a long freezing conditions and putting it time should not alter their ability to back into the body carries the risk fertilise an egg. of re-introducing cancerous cells. Testicular tissue freezing is still Currently only a few centres in the highly experimental but may be UK offer the service of storing an option for: ovarian tissue. • younger boys wishing to preserve their fertility before undergoing cancer treatment • men who are unable to produce sperm. 74 Getting started: your guide to fertility treatment

What does testicular tissue freezing involve? Key facts Currently only a few centres in the • Your chemotherapy UK offer testicular tissue freezing. treatment can in some cases be affected when you The technique involves taking a delay cancer treatment in small piece of tissue from a order to freeze your sperm, which is then frozen and stored eggs, embryos or tissue. (either as individual cells or as a piece of tissue). • Only a small number of babies have been born The cells or tissue could later be worldwide following injected or transplanted back to transplantation of frozen- potentially restore natural fertility. thawed ovarian tissue. Alternatively, in the future, • The chance of successfully researchers may be able to conceiving following ovarian produce sperm from these cells tissue freezing is low and in a laboratory. This sperm could we do not yet know whether then fertilise an egg in a laboratory ovarian tissue from pre- and be used in fertility treatment. pubertal girls can result in a successful pregnancy when transplanted back after puberty. • There have been no births reported following testicular tissue freezing. Getting started: your guide to fertility treatment 75

What to think about before starting treatment

It’s vital that you feel fully informed and are comfortable with the recommended treatment. This section goes through the various things you’ll need to consider before starting treatment. 76 Getting started: your guide to fertility treatment

Your clinic should give you regular Cost cost updates as your treatment If you are paying for fertility progresses or changes. If you treatment, your clinic should don’t understand what a particular give you a costed treatment plan charge is for, or how it is calculated, detailing the specific procedures ask your clinic to explain. you need. This can help you Some clinics offer IVF cycles at a understand how these costs reduced cost if you donate some are calculated. of your eggs for others to use (egg Some clinics may offer you sharing) or for research. extra services, such as new Some clinics also offer IVF cycles technologies, which will carry an at a reduced cost if a man donates additional cost. We recommend his sperm for others to use (sperm that you conduct thorough sharing) or for research. research into any of these treatments to ensure you are fully informed about whether you Key facts require these optional services If you are thinking about (see p65 for further details). donating your eggs, sperm or embryos there are various things to consider. For more information, visit www.hfea.gov. uk/donation/donors Getting started: your guide to fertility treatment 77

HFEA fees Risks We do not charge individual patients for fertility treatment. Like all medical procedures, fertility Clinics, both NHS and private, treatment carries risks. Your clinic pay us a fee towards the costs should discuss them with you of being regulated and inspected. before you go ahead. The fee is based on the number Risks can include reactions of treatments clinics carry out. to fertility drugs that may be prescribed, as well as the risks Some private clinics pass on this associated with any pregnancy. fee to their patients. Others cover Keep in touch with your clinic the cost in their overall treatment throughout your treatment so that fees. If you are paying for any problems can be dealt with treatment, ask your clinic about promptly. their practice. It’s also important to know that Our fee enables us to make sure one of the biggest risks of fertility your clinic is complying with the treatment is that it might not be law and is providing safe and successful. appropriate treatment. Latest figures show that around a third of women under 35 get pregnant after having IVF or ICSI using fresh embryos created with their own fresh eggs. This national average success rate declines as a woman gets older. Other treatments such as IUI have even lower success rates. For more information on success rates, see p27. 78 Getting started: your guide to fertility treatment

Multiple births You are more likely to become pregnant with twins or triplets A multiple birth (twins, triplets or if more than one embryo is more) is the single greatest health transferred. To reduce this risk, risk of fertility treatment as it your clinic will recommend carries risks to the health of the transferring one embryo (single mother and the unborn children. embryo transfer (SET)) if they For example: feel it is the best option for you. • at least half of twins are born This will depend on factors such before 37 weeks and with low as your age and the number and birth weights, making them quality of embryos you have at high risk of serious health available for transfer. problems If you are a suitable patient, you • over 90% of triplets are born can largely remove the risk of a before 37 weeks and many are multiple birth, while maintaining born so early that they have a your overall chance of having greater risk of long-lasting, a baby, by having SET. Any serious health problems or remaining embryos with a good may die soon after birth chance of implantation can be • a small percentage of twins frozen and stored. If you do not have severe health problems become pregnant, the frozen that will affect their entire embryos can be thawed and lives (for example cerebral transferred one at a time until palsy, which affects between you become pregnant or all the four and six times as many embryos have been used (read twins compared with more about freezing and storing singleton babies). on p66). For more information on SET and the risks of multiple births, see the one at a time website: www.hfea.gov.uk/about-us/our- campaign-to-reduce-multiple-births Getting started: your guide to fertility treatment 79

Ovarian hyper-stimulation The expert says... syndrome (OHSS) “Women are designed to OHSS is a potentially dangerous have one baby at a time, as a over-reaction to the fertility drugs singleton pregnancy provides used to stimulate egg production. the safest outcome for both This complication is unlikely to mother and baby. Historically develop if you are using mild IVF and ICSI have relied on fertility drugs such as clomifene. replacing multiple embryos to However, with IVF and ICSI, where bolster pregnancy rates, but a larger cluster of eggs is being unfortunately this has led to a stimulated to grow, one in 20 huge increase in the number of patients develop some symptoms. multiple pregnancies. Now, as IVF techniques have advanced, Your ovaries will be regularly particularly our ability to select scanned during treatment, so the the best embryos for transfer clinic staff will be aware if you may and successfully freeze surplus be at risk of OHSS. embryos, doctors have become The symptoms include a swollen more confident in replacing a stomach and stomach pains. In a single embryo and maintaining more severe case, you may excellent live birth rates.” experience nausea and vomiting, Professor Adam Balen, severe stomach pains and swelling, British Fertility Society shortness of breath, faintness and produce less urine. 80 Getting started: your guide to fertility treatment

OHSS can result in a hospital vaginal bleeding or dark brown admission and can very or red vaginal discharge. As the occasionally be life-threatening. pregnancy continues, the pain If you start to experience any of increases. Speak to your doctor the above symptoms, you must straight away if you have any contact your clinic immediately. stomach pain or vaginal bleeding Never feel you are wasting the in early pregnancy. clinic’s time. Drug reaction Ectopic pregnancy Some people experience a mild An ectopic pregnancy is when reaction to fertility drugs, including an embryo implants outside the symptoms such as hot flushes, womb. It most commonly occurs headaches, restlessness, or feeling in the fallopian tube, although down and irritable. occasionally an ectopic pregnancy There are different types of fertility can develop in the ovary. The drugs and different ways to use major risk is that the pregnancy them. You should ask your clinic will rupture through the tube and what they use and what side cause internal bleeding. effects are likely. The chances of an ectopic If you have any unexpected pregnancy seem to be higher in reaction to treatment, you should women receiving IVF, especially always contact your clinic. if they already have problems with their fallopian tubes. The first symptom is usually a one-sided low abdominal pain, followed by Getting started: your guide to fertility treatment 81

Before filling in these forms, your Consent to treatment clinic needs to make sure you are When you are going through given all the relevant information treatment there are lots of things you need to make fully informed to think about and paperwork is decisions. This includes probably the last thing on your information about: mind. However, by law, sperm, • the different options set out eggs and embryos can only be in the forms used or stored if you (and, if applicable, your partner) provide • the implications of giving your your written consent. There are consent also other important decisions to • the consequences of be made, such as what you would withdrawing your consent like to happen to your unused sperm, eggs or embryos (see • how to make changes to, ‘Donation’ on p84 and ‘Storing or withdraw your consent, and embryos’ on p67). • an opportunity to have The purpose of all these forms counselling. is to ensure that your sperm, eggs, If you’re unsure, or think that you embryos and information are only have not been given all of this used in the way that you want them information, speak to your clinic. to be and, where applicable, you Without it, your consent may (and where relevant, your partner) be invalid. are legally recognised as your child’s parent(s). As outlined previously on p32, the specific consent forms that you will need to complete will depend on your individual circumstances. However, they fall into five broad themes: 82 Getting started: your guide to fertility treatment

Consent to fertility treatment Some of these forms also ask you and/or storage (freezing) what you would like to happen to your sperm, eggs or embryos if These forms ask you whether you you were to die or become unable consent to your treatment and/or to make decisions for yourself. for your sperm, eggs or embryos to Take your time to complete these be stored (and if so, how long for). forms and don’t hesitate to ask They also ask questions about your clinic if you have any whether you are happy for your questions. eggs, sperm or embryos to be Disclosure of information used for training purposes (to allow healthcare professionals to learn Your clinic holds identifying about, and practice, the techniques information about you such as your involved in fertility treatment). This name, address and date of birth option is most often considered as well as information about your when there are surplus sperm, treatment or care. eggs or embryos to your treatment, By law, your clinic must submit although sperm can be collected some of this information to us solely for training purposes. Ask to be stored on a secure fertility your clinic about what training treatment database called purposes your eggs, sperm or the Register. embryos to be used for as this can vary from clinic to clinic. Getting started: your guide to fertility treatment 83

Sometimes your clinic may want Sometimes your clinic or the HFEA to share some of this identifying may also want to share some information with other parties. of this identifying information for For example: medical research investigating, for example, how fertility treatment can • to discuss your medical history be made safer or more effective. with your GP to plan the most appropriate treatment For more information on disclosing identifying information for research • to discuss your treatment with purposes, visit www.hfea.gov.uk/ another healthcare professional code-of-practice/5 outside your clinic (eg, gynaecologists or oncologists Your clinic and the HFEA are at another hospital) in order not allowed to share identifying to give you the best possible information with these parties medical care unless you provide your written consent for this (apart from in a • to share information for clerical medical emergency). These forms or financial reasons (eg, with allow you to provide your consent administrative staff or auditors to sharing your information for reviewing your clinic’s finances). these reasons. 84 Getting started: your guide to fertility treatment

Donation Sperm, eggs and embryos can also be donated for research Some people decide to donate purposes, helping to increase sperm, eggs or embryos for use knowledge about diseases and in others’ treatment (for example, serious illnesses and potentially as part of an egg or sperm sharing develop new treatments, methods agreement – see p84). and techniques. If you’re interested In this case, you will need to in this option, ask your clinic for complete a form outlining how you more information and for the want your sperm, eggs or embryos relevant consent form(s). to be used and stored. For more information about Donating for use in others’ the research we license, visit treatment can give some people www.hfea.gov.uk/donation/donors/ their only chance of having a baby. donating-to-research If you are considering this, there are lots of things to think about.

For more information, see www.hfea.gov.uk/donation/donors Getting started: your guide to fertility treatment 85

Parenthood Besides making sure that you sign the right consent forms, your clinic If: should also: • your partner is having fertility • offer counselling about the treatment using donor sperm, implications of receiving embryos created using donor treatment following consent sperm or donor embryos, and to parenthood before treatment • you are not married or in a is provided civil partnership with them, the • provide appropriate information law requires you to give your to you and your partner about written consent if you want to the implications of consent be the legal parent of any child to parenthood born from their treatment. Your partner must also give their • notify you or your partner consent to you being the legal if consent to parenthood parent. You must both provide is withdrawn or changed. this consent before egg, sperm or embryo transfer. For more information, please see www.hfea.gov.uk/code-of- practice/6 86 Getting started: your guide to fertility treatment

Surrogacy What’s it really like? If you are entering into a surrogacy arrangement, there are specific “It’s just a long waiting game. forms you will need to complete You always seem to be waiting: to consent to the use and storage waiting for appointments, of sperm, eggs or embryos. waiting for results, waiting to hear what you can do next. These ask similar questions to the other consent to treatment and “I get very frustrated when storage forms described earlier. nothing is happening and I’m There is also a separate consent not taking any drugs or trying to legal parenthood form which to help things along. The you will need to complete if you emotions are such a wish to be the second legal parent rollercoaster – one minute low, of the child when born (and if the next as high as a kite and certain conditions are met). then we’d hit rock bottom.” Michelle and David had various Withdrawing or changing fertility treatments and sadly your consent still do not have a positive You can change or withdraw your outcome. consent by contacting the clinic where your sperm, eggs, or embryos are being stored, as long as they have not already been used in treatment, research or training. To view all of the consent forms visit www.hfea.gov.uk/about-us/ how-we-regulate/consent-forms Getting started: your guide to fertility treatment 87

Get support and advice

Whichever stage you’ve reached in treatment, it can help to talk things through. This section gives you information about support groups, websites and professional counsellors that can help you through your journey. 88 Getting started: your guide to fertility treatment

As outlined in the ‘Get started’ Take a break section of this guide, it’s important Many experts recommend that you that you seek emotional support wait for a couple of months after when going through fertility treatment before trying again. This treatment. Talking to a counsellor gives you a break from the stress before, during and after treatment of treatment and a chance for your can help you through your journey, body to recover. which many people describe as an emotional rollercoaster. You may It can also be an important time also want to consider joining a to think about your options and support group. Read more about decide whether to continue counselling and support groups treatment. Recognising that fertility on p23. treatment may not work for you can be a long and emotionally A list of useful contacts can be draining process. found at the end of this chapter on p90-92. Points to think about If fertility treatment fails, what next? You may want to talk to your clinician about whether to try again Treatment doesn’t always work – using the same or a different and you may need time to recover method – and whether you can physically and emotionally before do anything to boost your chances trying again, or you may decide of conception next time. not to pursue further treatment. If appropriate in your particular This can be a difficult and painful circumstances, you may want to decision, and it can take a long talk to your clinician about using time to accept its implications. a donor or a surrogate. Don’t ask too much of yourself, A counsellor may be able to help and remember there are always you talk through your feelings. people you can talk to who have been through similar experiences. Getting started: your guide to fertility treatment 89

Understand why your Looking at the alternatives treatment didn’t work to treatment Talking to your clinician about why Stopping treatment can lead your treatment hasn’t succeeded to further choices. can help you decide what to do • It may help to talk to a next. There are many reasons counsellor, or to others who why things can go wrong. have been in a similar situation, Choosing to stop treatment as you decide how you can best move on. A time may come when you will have to decide whether to stop • You may wish to explore the treatment. possibility of other options for having children, such as It is important that you feel you are adopting and fostering. making a choice to stop treatment, and that it is not a sign that you • You may want to explore what have failed, or not done enough. life without children has to offer. You may want to consider More to Life aims to offer counselling. support for those in this situation (see p91). You may find it helpful to get in touch with More to Life, an online community of people who are childless by circumstance and not by choice: fertilitynetworkuk.org/for-those- facing-the-challenges-of- childlessness 90 Getting started: your guide to fertility treatment

Contacts

British Fertility Society The Daisy Network A national organisation A registered charity for women representing professionals in the who have experienced a premature field of reproductive medicine. menopause. www.britishfertilitysociety.org.uk www.daisynetwork.org.uk British Infertility Counselling Donor Conception Network Association A network of parents with children A professional association conceived using donated sperm, for infertility counsellors eggs or embryos; their adult and counselling in the UK. offspring; and those contemplating or undergoing treatment. www.bica.net www.dcnetwork.org Chana Supports couples in the Jewish Endometriosis UK community experiencing infertility. A charity dedicated to providing information and support to those www.chana.org.uk with endometriosis. COTS – Childlessness Overcome www.endometriosis-uk.org Through Surrogacy Providing advice, help and support to surrogates and would-be parents. www.surrogacy.org.uk Getting started: your guide to fertility treatment 91

Genetic Alliance UK The Miscarriage Association A national alliance of organisations Provides support and information with a membership of over 130 for those suffering the effects of charities which support children, pregnancy loss. families and individuals affected www.miscarriageassociation.org.uk by genetic disorders. The Multiple Births Foundation www.geneticalliance.org.uk A vital resource to professionals Fertility Network UK and families alike, it aims to Offers information and support improve the care and support to anyone affected by fertility of multiple birth families through problems. Also has a regularly the education of all relevant updated list of support groups professionals. on its website. www.multiplebirths.org.uk www.fertilitynetworkuk.org Macmillan Cancer Support Provides quality-assured, up-to- date cancer information, written by specialists for patients, relatives and carers. www.macmillan.org.uk 92 Getting started: your guide to fertility treatment

National Gamete Donation Trust Surrogacy UK A charity that aims to raise Provides information and support awareness, and alleviate the for anyone interested in surrogacy. shortage, of sperm, egg and www.surrogacyuk.org embryo donors. Twins and Multiple Births www.ngdt.co.uk Association Stillbirth and Neonatal Provides support for families Death Charity with twins, triplets and other Supports anyone affected by multiple births. the death of a baby and promotes www.tamba.org.uk research to reduce the loss of babies’ lives. Verity Provides support for women living www.uk-sands.org with polycystic ovary syndrome. www.verity-pcos.org.uk 100% of the inks used are vegetable-oil based, 95% of the press-chemicals are recycled for further use and on average The HFEA does not guarantee the 99% of any waste associated with this accuracy of information or advice production will be recycled. provided by other organisations mentioned in this guide and inclusion This document is printed on Cocoon of their details does not imply any Silk, a paper containing 50% de-inked endorsement of them. post-consumer waste, thus supporting responsible use of forest resources. We’re keen to hear your feedback The pulp is bleached using a totally on this guide. Please send any chlorine free (TFC) process. comments and suggestions to [email protected] Revised and reprinted September 2017. 1 0 Spring Gardens London SW1A 2BU T 020 7291 8200 E [email protected] @hfea @HFEAofficial www.hfea.gov.uk