One of the most distressing symptoms that women with POI encounter is the realisation of infertility. This is particularly difficult if you are young or childless when the diagnosis is made. However, if you are diagnosed very young as a teenager, fertility is not always an immediate concern and the impact comes later on in your life. Nevertheless the thought of infertility can be very hard to deal with.
At the moment, POI can’t be predicted, even if you have an affected family member, and therefore planning a family before the onset of symptoms can be very difficult. Most women do not have an affected sister, mother or aunt and therefore the diagnosis usually comes as a complete shock.
Ovaries have the dual role of reproduction and producing the female hormones. The vast majority of women with POI still have their ovaries but these ovaries are not able to function properly. Hormone replacement therapy treats the low level of hormones in women with POI and many HRT preparations and options are available (please click here to read about HRT). The ovaries are the organs where the female eggs are produced and stored. All women are born with a set number of eggs (between 1 to 2 million) and this number declines as a woman gets older. However, in the majority of women with POI, their eggs haven’t run out and often eggs are still present. In these women, sporadic periods may occur. Sadly, as of yet, there are no medical treatments available to harvest these eggs for fertility treatment. Stimulation of the ovaries in women with POI with tablets or injections has very poor success rates and therefore having a biological child can be difficult.
Understanding human reproduction can be complicated, even for specialists. The basic facts are outlined here and we hope this will help you get to grips with the treatment that a fertility specialist may/has offered you. Sperm are produced by men while eggs (also known as oocytes; you may see this word in literature or online) are produced by women. The sperm and egg need to meet either inside a woman’s body (natural conception) or inside a laboratory dish (in-vitro fertilization; IVF) to produce an embryo. This embryo then goes on to develop into a pregnancy producing both the baby and the placenta. Eggs are more sensitive and fragile than sperm; the process of fertility treatment through sperm donation can be as simple as placing sperm into a woman’s womb. Sperm are more robust and tolerate being frozen and are relatively easy to retrieve. On the other hand, obtaining eggs is both time-consuming, expensive and requires minor surgery for the woman. Furthermore, eggs cannot simply be placed into a woman. Eggs need to fertilized by sperm in a laboratory dish and then replaced into a woman’s womb as an embryo. Some UK clinics now offer the new technique of egg freezing, this process is still in its infancy stage. Therefore, pregnancy rates are generally higher when using fresh eggs.
Unlike the other symptoms of POI, the management of infertility is more challenging and in the current medical climate, achieving a pregnancy with an affected woman’s own eggs has limited success and currently there are no accepted guidelines on the best way to achieve this. However, several other fertility treatment options are available and these are detailed below. Furthermore, there are many national and international research groups working on innovative ways to solve infertility in women with POI; such as treatments to harvest eggs, methods to ‘kick-start’ the ovary or using stem cells to replace the eggs. We will keep you informed of new developments and these can be found here.
Egg donation is a form of fertility treatment; a fertile woman donates her eggs to a recipient who is unable to produce or use her own eggs. The donor can be a relative such as a sister, a friend or an anonymous donor. Some women who don’t have POI may also require egg donation to achieve a pregnancy, therefore egg donation is not exclusive to women with POI. The donated egg is then fertilized with the partner’s sperm in the laboratory, the resulting embryo is then replaced into the woman’s womb 2 -6 days later. This is therefore a type of IVF treatment.
The first reported case of a successful pregnancy through egg donation was in 1983. Since then, the numbers have gradually increased worldwide. Currently, in the UK, approximately 1300 women are treated with egg donation resulting in approximately 500 births a year. Egg donation is a time-consuming and invasive procedure that carries some risks and it relies on altruistic women. In view of this, in 2012, the Human Fertilization and Embryology Authority (HFEA) introduced a compensation fee of up to £750 for women who donate their eggs. This has had a knock-on effect of reducing the waiting time for a couple seeking donor eggs.
A woman can donate her eggs if she is less than 36 years old, although this does not need to be adhered to if there are exceptional circumstances and she will be registered as a donor with the HFEA. A donor is either known to the recipient or can approach a clinic or agency independently. Alternatively, if a woman is going through in-vitro fertilization (IVF) treatment herself, she can donate some of her eggs at the same time through a scheme called egg sharing. However, egg sharing is not offered at all clinics in the UK and a couple seeking egg sharing will need to discuss it with their individual clinic. The usual practice in egg sharing is to half the eggs between the donor and a recipient at the time of egg collection. This donor is compensated in kind for sharing her eggs: usually taking the form of a financial discount in the treatment fees. The donor couple and recipient couples will have separate agreement with their clinic. The overall benefit of egg sharing is to reduce the waiting time for recipient couples. If you are visiting our website and are considering to become an egg donor to help women with POI then please visit this site http://www.hfea.gov.uk/egg-and-sperm-donors.html.
If a couple receive egg donation treatment in the UK, they are the legal and social parents of the child. In 2005, all children born through egg donation have the right to find out the donor’s identity when they reach 18 years of age. However, the child does not have social, moral, legal or financial rights over the donor. In addition, since 2009, donors (including egg sharing donors) also have the right to learn of certain aspects of the eggs they donated. This includes if the donation resulted in a successful pregnancy, and if so, information on the number of children, the sex of the children and the year they were born can be obtained. Information surrounding legal and social issues can be found at http://www.hfea.gov.uk/23.html.
For a couple who require an egg donor, potentially the quickest option is a known donor, such as a relative or a good friend. However, most couples are not lucky enough and will need to wait for an anonymous donor. This waiting time varies between clinics and it is worthwhile contacting several clinics for this information. Although this waiting time has fallen recently, many UK couples do travel abroad to seek egg donation treatment as this can prove to be a faster option and possibly cheaper. However, if a couple are planning to travel abroad, then it is important to do plenty of research into the safety, standards and success rates of the clinic they intend to travel to. Specifically with regard to egg donation, there may be different legal responsibilities of donors and recipients and issues around anonymity. Please refer to http://www.hfea.gov.uk/fertility-clinics-treatment-abroad.html for more details.
POI caused by cancer treatment
This is about the only cause of POI which can be predicted and is therefore an exception. Cancer treatment may involve chemotherapy (drugs) or radiotherapy (radiation treatment). These forms of treatments can damage the ovary and render a woman infertile and more information can be found on the macmillan website and at the cancer research website.
In some carefully selected women, an injection can be given during cancer treatment to try to preserve the function of the ovaries. As treatment of cancer is planned and predictable, there may be a possibility to harvest your own eggs while you are fertile before you undergo cancer treatment. These eggs can either be frozen (if you do not have a partner) or fertilised with your partner’s sperm and then frozen as embryos. Once the cancer treatment is over, these frozen eggs or embryos can then be used to achieve a pregnancy. However, it is important to discuss these options with your cancer doctor before proceeding to this type of fertility treatment because it is important that your cancer treatment is not compromised in any way.
POI caused by genetic abnormalities
The human body is made up of billions of individual cells. Most of these cells contain 23 pairs of chromosomes. The chromosomes contain the 21,000 genes, which instruct the body how to develop and work properly. These genes are passed down in families and this is what happens when people talk about qualities (such as eye colour) or diseases that ‘run in the family’.
Genetic conditions can occur either because of a problem with the chromosomes such as Turner’s syndrome, or with the individual genes for example, FMR1 (Fragile X mental retardation 1) premutation. At the moment these are the only 2 well-characterized genetic conditions which doctors can test for but together they only account for about 2-5% of POI cases. Further information on Turner’s syndrome can be found at the support group (http://tss.org.uk) or on the NHS website (http://www.nhs.uk/Conditions/turners-syndrome/Pages/introduction.aspx). If you are affected by the FMR1 premutation, there is also a patient support group (http://www.fragilex.org.uk/#!fxpoi/c1iv3) .It has been estimated that the majority of POI cases where a cause has not been found is related to a genetic cause.
If you are visiting our website because you have female members of your family with POI (sister or relatives from your mother’s or father’s side) and you want to plan your own family, then it would be important discussing this with your GP. It is also worthwhile to discuss it with your family member to find out the cause of her POI, although this may need to be done sensitively. On the other hand, you may be a patient with POI yourself and want to help and guide your female relatives.
Turner’s syndrome is not an inherited condition (ie: does not run in families) and therefore if you have a relative with this syndrome it is very unlikely that you will develop POI caused by Turner’s syndrome. However, if your relative has the FMR1 premutation, you may want to discuss this with your doctor as this condition does run in families. You may need a blood test to check your own genes and this needs to be done in a specialist genetic clinic. If you are found to have the FMR1 premutation then you have an estimated 20% chance of developing POI. In this situation, it may be sensible to plan your pregnancies earlier to ensure that you have children before the possibility of POI develops. However, this requires careful discussion and counselling with the doctors in the genetic clinic or reproductive medicine clinic as there is a very small chance of having a child with the mental retardation.
For the majority of women who have family members with POI, a genetic cause is likely even though the actual abnormality remains unknown. In this situation, you should discuss this with your doctor or a specialist fertility doctor as you may have a chance of developing POI. Planning your family earlier may be wise, although it is also important to take into account that POI may not develop in yourself.
Surrogacy is when a woman carries a child for an intended couple who want to have a child. This can be either full surrogacy (where the intended couple are the biological parents and therefore a fertilized embryo is replaced into the surrogate’s womb) or a partial surrogacy where the man’s sperm is usually placed into the surrogate’s womb where it fertilises the surrogate’s egg.
As mentioned already, a woman’s own eggs can’t be harvested if she suffers from POI. Surrogacy is rarely a treatment option for women with POI but there are a few specific cases where this can be done, Firstly, a woman with POI who has failed multiple attempts at donor egg IVF may want to consider surrogacy. Secondly, some women have had their womb and ovaries removed usually for cancer treatment. These women may have had eggs or embryos frozen already and will require a surrogate to carry their pregnancy for them. However there are multiple emotional, social and legal issues surrounding and it is worthwhile looking at these pages http://www.hfea.gov.uk/1424.html. You can also visit Surrogacy UK (http://www.surrogacyuk.org) which is a non-profit organization.
Historically, adoption was the only option available for couples unable to conceive and it is only with the reproductive technological advances in the last four decades that infertility can be treated medically. Adoption can be a rewarding way to achieve parenthood for childless couples. It can be an excellent means to improve your quality of life and should be considered for women with POI. Several studies have indicated that simply having children can improve a couple’s quality of life irrespective of the biological nature of the children. Furthermore, couples who adopt after failing IVF treatment seem to be more fulfilled than those who have children naturally or indeed other adoptive parents.
The decision not to try fertility treatment or to stop fertility treatment altogether and to consider adopting can be a difficult one and depends very much on the individual couple. There are many questions that need answering including are you ready to raise a child that is not biologically related to you, have you completed your fertility treatment, to adopt nationally or from abroad and when to tell the child about the adoption. It may be positive to view the adoption process as part of your journey to fulfilment and happiness. Adopting a child also helps a child find a loving home. Please see the government’s webpage on adoption (https://www.gov.uk/child-adoption/overview). Furthermore, there are a number of charities which can provide helpful advice including Barnado’s (http://www.barnardos.org.uk/fosteringandadoption/adoption.htm) and Adoption UK (http://www.adoptionuk.org).
Up to 5 to 10%, of women with POI fall pregnant spontaneously. Unfortunately, there are currently no tests that can predict who this will happen to and when it will happen in a particular individual. This is obviously frustrating and certainly the small chance of a spontaneous pregnancy can not be relied upon if you are trying to get pregnant. Currently, there are no guidelines on the best method to achieve a biological pregnancy however, there is some very limited data to suggest that lowering your hormone levels of FSH and LH with medications such as the contraceptive pill may improve your chances of conceiving naturally. Alternatively, a few pregnancies have been achieved through close monitoring of the ovaries for the sporadic development of eggs. These however remain controversial and it is important that you speak to your fertility specialist about this.
Conversely, it is important to consider contraception if you do not want to get pregnant, especially if you are having irregular periods.