Talking to your doctor about genital herpes

This information is not provided for the purpose of diagnosis or medical treatment and should not be considered a substitute for medical advice from a doctor.

Genital herpes is one of the most common sexually transmitted diseases (STDs) world-wide. It is not life-threatening but unlike most other STDs, it is a lifelong condition. You are the only person who can truly manage your herpes, but there is no doubt that a good relationship with your doctor or other healthcare provider is important. Your doctor can be a powerful ally. He/she can help you to choose the best treatment option for your particular circumstances and can ensure that you have access to information and support when you need it. This section of the website provides information about making the most of your relationship with your healthcare provider.

I think I might have herpes. Should I contact a doctor?

Genital herpes is a viral infection that is spread by close contact with somebody who has been infected with the herpes simplex virus (HSV). Anyone who is sexually active can become infected with genital herpes. You should make an appointment to see a doctor if you experience any of the following signs and symptoms and have not previously been diagnosed with genital herpes:

• Blisters or rashes in the genital or pelvic area, including the thighs or buttocks
  
• Burning or pain when urinating (passing water) or difficulty in urinating
  
• Unusual discharge from the genital area

If you notice any of the above symptoms, it is a good idea to make an appointment as soon as possible since it is easier to make an accurate diagnosis of genital herpes during an active episode, ie when symptoms are present.

You should also seek help if you suspect that you have been exposed to the herpes virus (for example if a sexual partner is diagnosed with the condition, even if they have no apparent symptoms). This is important even if you do not notice any of the symptoms outlined above. Many people who have been infected with HSV experience no symptoms at all, or they are so mild as to go unnoticed, and there is often no way of knowing that you have been infected. It is estimated that as many as 80% of people infected with HSV-2 (the virus most commonly associated with genital herpes) are unaware that they have the virus.(1) These people are, however, capable of transmitting the virus to others.

It is important to seek medical advice if you are pregnant, or are planning to get pregnant.

If you suspect that you may have genital herpes, you should avoid sexual activity until your condition has been diagnosed and you have been provided with information about ways of minimising the risk of transmitting the virus.

Where do I go for help?

There are a number of options open to you. Many people simply make an appointment to see their usual primary health care physician, although some people are reluctant to discuss sexual health with their family doctor, fearing they may be regarded differently or even judged in some way. There is no need to feel embarrassed - doctors are used to discussing sexual matters on a daily basis, but if you feel more comfortable or it is more convenient, make an appointment at a clinic specialising in sexually transmitted infections (STIs) / sexual health/genitourinary medicine. Your local telephone directory will provide details of the nearest clinic. In some countries, family planning clinics can also offer advice on STDs. For further information on sources of support and information, contact your local or national herpes support group

What will happen when I see the doctor?

First, your doctor will take a medical history, asking about your general health, any previous problems and current and previous symptoms (if any). This is likely to include a number of questions about your personal life, such as how recently you engaged in sexual activity, whether you used condoms, whether you have had a sexually transmitted infection before and whether you have any reason to suspect that you have been exposed to the herpes virus. It is important that you answer these questions as openly and honestly as possible, since they will help the doctor to assess the likelihood that you have been infected with the virus.

Some people find it difficult to talk about intimate topics such as their sexual activity with a stranger, but try not to feel embarrassed. Doctors are used to discussing such matters on a daily basis - it is part of their job. Their only concern is to obtain clear and reliable information to help in the diagnosis process.

Your doctor will also perform a physical examination to see whether any of the classic signs of HSV infection (such as blisters or lesions) can be detected.

In order to confirm a diagnosis of HSV infection, he/she may also recommend one or more tests (a swab test or a blood (serology) test) to determine whether you have HSV-1 or HSV-2. Type 1 is the virus more usually associated with facial herpes, while HSV-2 commonly causes genital herpes, although cross infection is possible. The section Diagnosis and Diagnostics provides further information about the different tests available and includes some useful points to discuss with your doctor when you are having a blood test.

Why do I need to know whether I have genital herpes?

If you have been tested for genital herpes, you will probably be offered a second appointment to discuss the test results. It is important to return for this appointment and to find out the results. If tests show that you have not been infected with the herpes virus, you may still have some other condition that needs to be treated. It may also be valuable to discuss the best ways of protecting yourself against the risk of infection in the future.

If you do have genital herpes, it is important to be aware of this fact so that you can decide on the best course of action. The impact of genital herpes varies from person to person. Some people experience mild symptoms and just a few recurrent outbreaks over their lifetime, while others may have 4-6 outbreaks a year, with severe and debilitating symptoms.

There is no cure for genital herpes but knowledge about the best ways of managing the condition is improving all the time. Effective treatments are now available that can not only relieve symptoms but also reduce the frequency of episodes of genital herpes. It is also important to find out about how you can reduce the risk of transmitting the virus to sexual partners.

What questions should I ask my doctor?

When you are first diagnosed, you may feel concerned, shocked or even frightened. These feelings are entirely natural. You will almost certainly want to ask your physician a number of different questions and you may find it difficult to absorb all the information at the time of diagnosis. If so, ask if you can return for a further appointment to continue the discussion. This will allow you to find out more about genital herpes and to keep a note of any questions you may have.

The IHA has produced a checklist of questions to ask your doctor following a diagnosis of genital herpes:

• How did I get the infection?
  
• Am I likely to have recurring symptoms? If so, how frequently?
  
• How do I recognise a genital herpes episode?
  
• Is there any way of preventing further episodes?
  
• What are the treatment options available?
  
• How can I reduce the risk of passing it on to my partner?
  
• Will I be able to have sex without infecting my partner?
  
• How common is genital herpes?
  
• How is genital herpes different from cold sores?
  
• Can I still get pregnant?
  
• Where can I find further information about herpes?
  
• Are there any support groups or resources that you can recommend?

You can find information on all these aspects of genital herpes on the IHA website. The section Genital Herpes: the facts is an excellent starting point.

Once I have been diagnosed, how often do I need to see my doctor?

This will vary according to a number of factors. As stated, you may prefer to return for a further appointment shortly after your diagnosis has been confirmed to clear up any queries that you may have.

Your doctor may suggest that you return after a specific period but in most cases, it is sensible to make an appointment approximately six months after your diagnosis, or sooner if you experience any complications or are finding it difficult to cope, either physically or emotionally. Thereafter, appointments at 6-monthly or yearly intervals will provide an opportunity to assess how you are managing your condition and whether your treatment should be reviewed.

Longer term, are there any other situations which should prompt me to see my doctor?

Make an appointment at any time if you are finding it difficult to cope with your genital herpes or if there is a change in your health that may impact on the management of your herpes, particularly if you become pregnant or wish to become pregnant.

If you have been prescribed episodic viral therapy (treatment that is started at the first sign of an outbreak and taken for a few days only to speed up the healing time), but are finding it difficult to cope with the frequency or severity of episodes, you may wish to talk to your doctor about the possibility of trying suppressive therapy (preventive treatment that is taken on a daily basis to reduce the number of outbreaks). The section Treatment Options for Genital Herpes on this website provides further details about episodic and suppressive therapy.

If you start a new relationship with somebody who does not have genital herpes, talk to your doctor about ways of reducing transmission of the herpes virus. These include avoiding sexual intercourse during an active episode of herpes and using latex condoms. One of the most exciting recent advances is the discovery that suppressive antiviral therapy can substantially reduce the risk of passing genital herpes on to a partner. A major trial of valaciclovir, one of the commonly prescribed antivirals, shows that when it is prescribed as a once-daily suppressive therapy, it can reduce the risk of transmission of symptomatic genital herpes (signs and symptoms of infection) by 75%.(2)

What should I do if I am unhappy with the support I am getting from my doctor?

Many doctors are an excellent source of information and support for people diagnosed with genital herpes and play a key role in helping their patients to manage the condition successfully. However, a recent international survey, called INSIGHTS, revealed that some patients do not receive the support and care they need. 51% of patients said they were dissatisfied with the answers and attention received from their physicians regarding physical aspects of genital herpes, such as symptoms and pain management. Almost two thirds (63%) were unhappy with the information and support provided regarding social and emotional issues and more than a third (36%) felt their doctor was unsympathetic.

If you are unhappy with the care you are receiving, it may be helpful to provide your doctor with some information on the best ways of managing genital herpes. The International Herpes Management Forum (IHMF) has produced a set of management guidelines entitled Pathways of Care for Managing Genital Herpes, which can be downloaded from this website (see section Primary Care Guidelines).

If you feel that your doctor is not providing the support you need, ask to be referred to another doctor or to a physician who specialises in the management of STDs such as genital herpes. Also, remember that a number of patient support groups, including the IHA, provide a wealth of information on the best ways of managing genital herpes. The Internet Links section on this website provides details of a variety of helpful organisations throughout the world.

References
1. Corey L. The Current Trent in Genital Herpes. Progress in Prevention. Sex Transmitted Diseases 1994;21 (Suppl 2) : pS38-S44
2. Corey LC, Wald A, Patel R et al. Once-daily valacyclovir to reduce the risk of transmission of genital herpes. N Engl J Med 2004;350:11-20.