I am considering buying hormones from the internet while I wait for NHS assessment – is this a good idea?
We are sympathetic to the distress that untreated gender dysphoria can cause. However, taking hormones bought from the internet or any unregulated sources can be very dangerous. There are significant risks to your health, especially if you do not have regular blood tests to monitor your physical health. We strongly advise against taking hormones bought from the internet as there is no guarantee that products obtained are the medication stated or the dose is accurate, as they are not from regulated pharmaceutical suppliers. There are health consequences and risks associated with these products, about which you may not be aware. Your care in the service will not be adversely affected if you decide to take hormones sourced from elsewhere. However, if you wish to commence prescribed treatment you will be expected to stop taking any such products before we recommend NHS prescribed hormones.
I have been referred to NRGDS. How long do I have to wait to be seen?
As of June 2021 the person at the top of the waiting list for their initial assessment appointment has waited 41 months to be seen.
As of June 2021 the person at the top of the waiting list for their second assessment with our Medical team (for diagnosis and to agree treatment plans) has waited 27 months to be seen (and a total of 52 months from their referral).
It is not known at this time whether these waiting times will increase or decrease in the future but we will update them every four months to keep you informed. We apologise for these lengthy waiting times and for any distress it may cause you.
We cannot predict waiting times because it is dependent on many factors such as:
- How many people are referred
- What staff resources we have available
- What needs people have once in the service (we have infrequent contact with some people, others need more input)
- The rate that people pass through the service (people need to go at a pace that is right for them)
- How long people have to wait for surgeries
Due to Covid-19 the waiting times have increased due to a reduction in the amount of appointments taking place and also because of delays in people accessing surgery.
If you are on treatment and are transferring your care from another adult NHS gender identity clinic, then the current wait time is about four months.
We ask that you please do not contact the service asking for details of waiting times as this takes up valuable administration time that could be better used in trying to reduce waiting times.
Did Not Attend (DNAs)
From November 2020 to April 2021 a total of 1312 new and follow up appointments were booked. Of this number, 145 appointments were not attended.
Due to high demand for our service we are unable to continue to offer appointments to patients who are unable to engage with us. For this reason, patients who Do Not Attend for three consecutive appointments will be discharged. It is important to point out that failure to attend and subsequent discharge may affect your treatment pathway including any surgery we have referred you for.
If you are unable to attend an appointment with our service, please let us know 24 hours prior to your appointment times so we can offer this to someone else.
Total number of booked appointments from November 2020-April 2021 – 1312
Number of DNAs – 145
% DNAs – 11.1%
I am taking oestrogen and I feel that it is not working quickly enough. Should I take supplementary hormones?
Hormones work by changing the way certain parts of the body grow and function. This process takes time. The dose of hormone alone does not determine how fast these changes occur. It is more important to have the right amount of hormone at the right time.
If you feel that your hormone regime is not working well for you it is important that you discuss this with your doctor in the team before making any changes to how you take it. Taking more hormones can damage your physical development in the longer term. For example, taking large amounts of oestrogen at the beginning of medical transition can cause poor breast development in the longer term. It may be more effective to add an anti-testosterone medication to your treatment, to help increase feminising effects by reducing testosterone. You should discuss this with your doctor in the service.
Why do you tell me that I shouldn’t take progesterone as well as oestrogen to get more feminising effects?
It doesn’t help to increase breast size: Some people believe that taking progesterone will increase their breast size. This is because people who have a cycle of hormones that includes progesterone get larger breasts during phases in their hormonal cycle when there is more progesterone. In reality the increase in breast size comes from water stored in the breast tissue (not an increase in the fat that makes up most of breast tissue) and is only a short-lived, temporary increase in size, lasting a few days.
There has been some limited research evidence in the past that progesterone increases breast size. In fact it just increases the size of the milk ducts very slightly and this is of no benefit in increasing the size of the breast overall.
Almost all breast growth in birth assigned females happens before they start to produce progesterone so it plays almost no part in breast development.
It interferes with oestrogen: Progesterone can interfere with the work of oestrogen in the body. It can make your liver more effective at breaking down oestrogen so that it can’t be used by your body.
Progesterone can also stop your breasts developing oestrogen receptors, so that however much oestrogen you take afterwards, your breast tissue can’t take it up and use it to increase the size of your breasts.
Progesterone is a hormone that your body can use to make its own testosterone. This means that taking progesterone can cause unwanted side effects such as loss of head hair, increase in body hair growth, acne and weight gain.
Taking it carries risks: In addition to interfering with feminising effects of oestrogen, taking progesterone can have its own potential risks, such as an increase in risk of cardio vascular problems (such as having a stroke, heart attack or blood clot in your heart or lungs) and a possible increased risk of developing breast cancer.
What are the guidelines for weight and surgery?
The surgical teams are focussed on offering their patients the best care that they can and minimising risks. Surgeons may recommend a safe body weight for surgery due to the effects of anaesthetic. Depending on the surgery, there may be an optimal body weight to achieve the best surgical results, or the risk of complications associated with a high or low BMI may mean that surgery cannot be performed. Some specific surgical techniques can only be offered to people who have the right amount of fat under the skin. It may also be important that body weight remains stable, before or after surgery. Each surgeon makes a decision based on the risk factors of their individual patient, however, as a guide, they usually prefer patients to have a BMI (body mass index) of between 18 and 30. That is not to say you cannot have surgery if your BMI is higher or lower. This will depend on the type of surgery, the surgeon carrying out the procedure and your own body’s characteristics. Find out how to calculate your BMI
How do I prepare myself to have surgery?
The best way to prepare for surgery is to ensure that your body and mind are fit and well. If you plan to have surgery we advise that you start to exercise if you do not already exercise. If this is the first time that you are thinking about exercise, or if you have a long term health condition you should consider contacting your GP first before undertaking any exercise. You can find more information about getting started with gentle exercise on this page.
You will need to give up smoking and any nicotine products before you can have surgery to give you a better chance of being healthy and healing well. Smoking and using nicotine products increase the risks of developing complications after surgery.
Before any surgery you will need to make sure that your home is a place that you can recover in successfully. In the days and weeks after surgery, you will need to be able to keep your body clean easily. You will not be able to cook or clean, do laundry or look after pets or children. You will not be able to carry bulky or moderately heavy items. There may be limitations on you reaching up to high shelves or cupboards. How long you will be advised to limit your physical activity will depend of the type of surgery you are having. Your surgeon will discuss this with you.
If you take oestrogen you will need to stop taking oestrogen for 6 weeks before surgery and this will not start again until you are up and about and moving regularly. Your doctor will organise this with you.
If you have people who can help you while you are recovering it will be useful to ask them to visit you, or to arrange to go and stay with them when you leave hospital. You may need to contact your GP and arrange to be visited by your district nurse if you need extra support after surgery.
How do I look after myself when I get home from surgery?
Everyone who has surgery can expect that they will feel physically and emotionally unwell afterwards. General anaesthetic can leave people feeling unwell for several days. In addition to this you will have had a significant change to your body, which will take time to heal and be painful.
This often has a huge emotional impact while a person is recovering. It is not unusual to feel sad, tearful and overwhelmed by the process that you have been through, even though the surgery is something you have wanted for a long time. Sometimes the prospect of the recovery period can be somewhat daunting. These are all normal feelings and not usually a cause for concern. Having these feelings does not mean that you have made a mistake by having the surgery or that your motives for having it were somehow mistaken.
It can be useful to tell people who support you that you might feel like this after surgery so that they are well placed to offer you emotional and physical support. Get a good balance of rest and activity in your day. Plan treats, distractions and things to fill your time while you recover.
For emotional support when it is not an emergency
You can contact LGBT switchboard, a helpline staffed by people who identify as LGBT+. It is open 10am to 10pm every day.
Telephone: 0300 330 0630
Also by email and instant message on their website
If you do feel that you need extra emotional support because you are not coping and feel that you are at risk of coming to harm or if there is a problem with your wound/physical health and you feel that you need urgent medical advice, you should
Call your GP during working hours,
Call 111 out of hours to speak to a healthcare professional
In an emergency dial 999 or go to your nearest accident and emergency department.
What could delay my surgery?
The things that delay surgery most often are:
Choosing a surgeon:
we advise that you take time to choose the right surgeon for you and that you take into account travel, waiting times, surgical outcomes and anything else that is of importance to you in having a good experience of surgery. It can take time to hear from other people about how they made their decision and some people find that this is helpful to them in making a decision about their own choice of surgical provider. If you have any questions about surgical waiting times and procedures you can contact the surgical team directly. Please be aware that waiting times can sometimes change quickly.
Reaching a healthy weight:
When people have a surgery there are risks associated with the procedure itself and with having a general anaesthetic. There are many factors which affect how safe it is to have a surgical procedure and an anaesthetic and weight is one of them. With this in mind each surgical team sets a weight range which they feel is safe for people to aim for to be eligible for surgery. This is often a body mass Index of 18-30. If you aim to have surgery it is useful to leave yourself plenty of time to reach this weight range. Find out how to calculate your BMI
Other preparations for surgery:
Some people’s physical characteristics and health mean additional preparation is required. For example, if you have a medical condition it might be important that this is well controlled before you can be referred for surgery. In addition, a small number of people need to prepare for surgery in other ways, particularly genital surgeries. During phalloplasty and vaginoplasty, skin that is usually on the outside the body is moved to a position inside the body. It is very important that these areas of skin are hair-free before surgery. Hair bearing skin inside the body could result in an unsatisfactory result. Whether or not you need to have hair removal treatment, will depend on your body’s characteristics: this will usually be determined by the surgeon assessing you for surgery. Thereafter, you will be offered laser and/or electrolysis to the area. This process takes at least several months and may lead to delay in you accessing surgery.
Achieving stable mental health:
Surgery has a big impact on any person’s mental health. The physical impact of having surgery and a general anaesthetic can lead to people experiencing periods of low mood and distress. Surgery can also cause people to feel vulnerable, lonely or frightened, even when other things in their life are going well.
Many people in the service will struggle with their mental health from time to time but for some people this is a more significant challenge. People who are already working hard to manage their mental health will be dealing with additional stresses in the post-operative period and this could lead to complications. For example, not feeling well enough to take good care of wounds could lead to infections, or feeling more low in mood than usual could result in severe distress and difficulties coping with day to day life.
For this reason we seek to support everyone who wishes to have surgery to be in the best mental health that they can before their surgery. Whilst we always endeavour to promote good mental health for our service users, we understand that for some people it will not be possible for them to be in perfect mental health before surgery. Instead, we seek to help them achieve the best mental health they can that is stable and does not change significantly from day to day. In this way they can have the surgery that they need and be capable of managing the difficult post-operative period successfully. Where appropriate, we will offer psychological therapy to people seeking surgery who need help to achieve and maintain stable mental health. For some people this might be more usefully provided by their local mental health services.
What will you ask me about at assessment?
The assessment process will cover lots of aspects of your life to date. We usually ask about:
- Your gender identity and how your awareness of it has developed over time.
- Your journey through life to get to this point and how you cope day to day at the moment.
- Gender dysphoria and whether and how you are affected by it.
- Your mental and physical health now and in the past
- Your relationships with important people in your life
Assessment may also cover other topics, depending on your life history.
Why do you ask about my sex life at the assessment?
The reason that we ask about people’s sexual practices and preferences at assessment is because people who seek to have a medical transition want to take medication and / or have surgery that is extremely likely to affect their sex drive, the ways that they might have sex and sexual sensation. It is important that each person has a clear idea of the potential risks and benefits of any treatment on their sex life as well as on their gender dysphoria.
We also ask about people’s sex life within assessment because it can be an area of life that people struggle with, especially if they are experiencing distress related to their physical body. Our assessments are trying to understand the full impact of gender dysphoria on your life.
If I tell you about self-harm, will you stop the treatments that I need?
We understand that people living with gender dysphoria, or with mental health problems, can sometimes feel so desperate or unhappy that harming themselves can feel like a solution to some of the feelings. We know that untreated gender dysphoria can increase the risks of poor mental health and that self-harm can sometimes be part of that. It is important for us to know about self-harm or thoughts of ending your life, so that we can offer you the support that you need, either in our clinic or in appropriate services in your area. We will always try to work with you to ensure that you can safely receive important treatments for gender dysphoria alongside any treatments that you need to manage self-harm or mental health problems.
Why do you ask about mental health and risk in appointments?
Many people will experience some form of mental ill health during their lifetime and periods of change can make this more likely. We understand that untreated gender dysphoria can be a significant cause of mental health problems, such as depression, anxiety and stress and that the people who use our service are often making changes in their life.
We ask about your mental health and any risks that you might pose to yourself or others to make sure that you have the support you need, not only from this service but also from other sources available in your area. We are not a mental health service and so if you tell us that you need extra support, or we have concerns that you are not supported well enough, we will ask your GP or local mental health services to support you in their usual way.
We are bound by a duty of care to the people in our service and part of this is to communicate clearly with other healthcare professionals involved in looking after you. When we write to your GP or other people involved in your healthcare, we will usually write a short summary of your mental health alongside other relevant medical details. This may include comment on your presentation, because whether someone appears to be looking after themselves or not, can be an indicator of whether they are struggling with their mental health. Monitoring all aspects of your wellbeing also helps us to ensure the care and treatment we provide is beneficial.
Can I transfer my care to the Northern Region Gender Dysphoria Service from a different Gender Identity Clinic?
It is possible to be transferred to the NRGDS after you have been referred to another NHS gender identity clinic in England. There are lots of reasons why you might need or want to change the clinic that you attend but whatever the circumstances, it is best to seek a referral from your existing service, rather than your GP.
When we receive your referral, as a transfer of care from another service, we will consider a number of different things when making a decision about how to place your referral in our system.
We will consider whether or not you have already had a full assessment.
If you have not had a full assessment, we will take account the time you have already waited to be seen in the other service and you will be offered your first appointment with our team, as if you had spent that time waiting on our waiting list.
If you have had a full assessment, we will prioritise your referral and try to see you in a timeframe that means your care is not disrupted by the transfer.
Although they are different systems, we try to treat transfers from children’s services and adult services in the same way. We also try to follow these guidelines if you are transferring from Northern Ireland, Scotland and Wales. However, if you were discharged from services a long time ago, whether from our team or a clinic elsewhere in the country, we cannot transfer your care in this way.
I have already been assessed by a gender specialist in another service. Will this be taken into account?
We will always read information sent to us by referrers, including other gender specialists in the NHS or working privately. Some people will have been assessed some time ago and it will be important for us to review the assessment with them in order to hear the most up to date information about how they are.
Some assessments come to us missing important and necessary information or with information that is not of sufficient quality. In these circumstances we will need to undertake a longer assessment to make sure that we have all the information that we need to offer you the best healthcare.
People who have been assessed in the Gender Identity Development Service (or those who have received a diagnosis of gender dysphoria in the past) may need a longer assessment because we use different diagnostic criteria. We use the ICD 10 classification system, which includes transsexualism.
I have been referred to the Northern Region Gender Dysphoria Service and I’m on the waiting list. What should I do now?
Many people find that going to the GP and asking for a referral to the gender clinic is a huge milestone and that the wait to be seen for the assessment can be a bit of an anti-climax. Everyone is different and so are their circumstances but there is no need to wait until you have your assessment at the clinic before embarking on making changes in your life. The life changes that are often described as ‘social transition’ can happen at whatever time is best for you and for some people, this is something that they feel able to do before starting any medical treatment.
For some people, these changes can include:
- Choosing a name and pronouns that you would prefer to be called
- Changing your name officially with banks, passport office, DVLA, National Insurance etc.
- Telling family, friends or colleagues about your gender identity and how they should refer to you.
- Experimenting with your appearance and lifestyle so that they feel more congruent with your gender identity
- Getting fit and healthy, including giving up smoking and nicotine products
- Seeking support for mental or physical health problems
- Contacting local or national support groups and making connections with people who can support you and provide safe spaces for you to be yourself.
How do I change my name legally and on my medical records?
Details of how to change your name and documents.
How do you keep my records safe and confidential?
Details of our record keeping and confidentiality policy.
What happens if I can’t come to my appointment?
It is important that you let us know as soon as possible if you are unable to attend your appointment. This is so that we can offer the spare slot to someone else. Unused slots add to waiting time for other people wishing to use the service.
If you want to cancel an appointment for any reason please contact us.
If you are repeatedly unable to attend appointments and we do not hear from you in advance to cancel the appointment we will have to discharge you from our service. If you find that you are not able to attend on repeated occasions, even if you let us know in advance, we may contact you to talk about whether or not this is the right time for you to use the service.
Would staff from NRGDS come and talk to my organisation or group?
We are always happy to offer support and guidance to healthcare professionals seeking advice or guidance. We receive a large number of requests from different organisations and groups asking that we offer education or information about the work that we do.
We are passionate about education in our field but are unable to meet requests to speak to small numbers of people except if they are working directly with our clients in healthcare. There are many excellent organisations run by people with personal experience of gender diversity who are well placed to offer education and guidance and some of these are listed in our support leaflet.
If you work in healthcare or the allied fields and are interested in attending one of our training days, or having us speak to your group of healthcare professionals, you are welcome to contact us and we will endeavour to provide a training package. You can find out more details about what we offer on our Training and Education page.
We always try to attend Pride events when this is possible, and staff will often be willing to attend events outside of working hours, in their own time, to represent the service.