With vulvodynia, treatment often has to be holistic and it is likely that you will have to use different strategies to get better. A medical doctor is important to get a diagnosis but may not always be best placed to offer you a treatment package as there are different issues that affect women with vulval pain. Remember the five areas:
- Using medical treatments the best you can, e.g. drugs such as nortriptyline and gabapentin, and anaesthetic gels.
- Physical therapy, e.g. pelvic floor muscle training and desensitisation.
- Sexual therapy, including psychosexual therapy, e.g. overcoming vaginismus (vaginal muscle tightening during penetration).
- Stress management and psychological therapies.
- Holistic treatments, e.g. acupuncture, exercise and diet.
Ask yourself – do I need to see a psychosexual therapist? Or perhaps an acupuncturist for chronic pain? For these types of practitioners the internet can be very helpful.
This section deals with how to practically access the treatments mentioned above, but does not go into detail about the treatments themselves. For more information about the various approaches on offer, please see our Treating vulval pain page, or follow the direct links above to the different treatments.
Women with vulval problems commonly see their GP at a first consultation. Some GPs will diagnose and manage vulval problems, but many might refer on to a variety of hospital specialists (gynaecology, dermatology or genitourinary medicine physicians).
GUM vulval clinics
You can self-refer to your local genitourinary medicine (GUM) clinic. GUM clinics have their own vulval clinics, and if you want to attend a GUM vulval clinic, you should inform the clinic that you have a vulval problem when you contact them to book an appointment. You will then be allotted to the specialist vulval clinic rather than the general GUM clinic, which deals with all kinds of genitourinary problems.
A vulval clinic is usually a hospital service offering care specifically for vulval problems and it can be run by a number of different speciality doctors. The British Society for the Study of Vulval Disease is an organisation of health professionals who have an interest in vulval disease. They hold a database of vulval clinics and services in the UK. The Clinics in the UK page of their website allows you to search for clinics and services near you using an interactive map, or alternatively you can download a list (PDF). As a patient you cannot self-refer to these clinics but you could discuss referral with your GP.
Some patients are also seen in pain clinics. The level and standard of clinical care is variable in different parts of the UK and it may be necessary for you to travel to see someone appropriate. Pain clinics are available in most hospitals and are usually teams of health professionals who deal with chronic pain (e.g. back pain and fibromyalgia). The lead of the clinic is usually an anaesthetist who has specialised in chronic pain management. Services can be very well developed with access to comprehensive medical management of pain and access to other health professionals, e.g. clinical psychology, acupuncture and even pain management courses. However, many clinics are not geared up to manage vulvodynia and there can be a gap in expertise of managing vulvodynia. Paying to see a consultant privately is an option and if you have a name of a consultant you wish to see the best way is to simply search for the consultant on the internet and ring his or her secretary for an appointment (you might need a GP’s letter for this).
A women’s health physiotherapist can be helpful for pelvic floor muscle rehabilitation (e.g. pelvic floor exercises or trigger point therapy). There is a professional group of physiotherapists interested in women’s health and vulval pain called Pelvic Obstetric and Gynaecological Physiotherapy (POGP); see their website to find a professional local to you.
This may be helpful for sexual pain and situations where the vulval pain has led to relationship and communications problems with a partner (see Podcast 3 – ‘Managing long term vulval pain: a partner’s perspective’). This service is very variable in the UK and also waiting times can be long. There are several professional organisations you can contact to find a therapist who may or may not be medically qualified. Names of trained, qualified psychosexual practitioners in your area are available from the Institute of Psychosexual Medicine (IPM). Relate might also be able to help as many of their counsellors are psychosexually trained.
Psychosexual and relationship therapist Clare Staunton has very kindly provided the following paragraphs on accessing psychosexual and couple therapy.
Accessing psychosexual and couple therapy
This is a niche form of talking therapy which can be found either on the NHS, through charitable free or low cost organisations, or privately. It can come under a number of names: psychosexual therapy, sex therapy, couple counselling, relationship counselling or marriage counselling, but the most important thing is to find out if the provider gives specialist counselling when it comes to sexual dysfunctions or sexual pain and how to work with that.
Therapies vary enormously and provision varies too regarding number of sessions allocated, how often these happen, room provision, whether you can be seen as a couple, type of method of counselling, hours available, waiting list and referral route.
Our suggestion is to get onto Google and start calling and asking the questions about provision above. Even if the person you are speaking to cannot help, they might have some advice on where to find provision, or on another local organisation or team to try.
- Vulval pain/gynae clinics
- GUM/Sexual health clinics – you do not have to have an STI to access these services. They are also anonymous.
- Niche services to which vulval pain may be linked. For example, if your pain is linked to recent cancer treatments, there may be psychosexual provision within that specialist unit.
With the threat of psychosexual talking therapy being reduced on the NHS it is worth looking further afield for provision. You could try some of the following organisations:
- Specific sex or sexuality-focused organisations such as the Terrence Higgins Trust
- Health-related organisations which may have a niche psychosexual provision. Think about local charities linked to diabetes, HIV, cancer, heart or national charities with local branches e.g. Macmillan or Mind
- Any niche charity offering generic counselling where you fit referral criteria may offer a psychosexual service. Do you fit into any criteria such as BME/Under 25/Over 50/Female/Single Parent/Bereaved?
There only needs to be one professional in the organisation to have had specific training and you could be in luck. The receptionist might not know – but there might be a wellbeing/counselling/patient representative team who might have a better knowledge of counsellors/services available. You never know; your phone call might form a prompt to offer this service in the future.
Costs, availability and location are much more flexible when you pay for therapy yourself, but this of course comes with a price tag. Rates per session can vary on experience of practitioner, venue and area of the country.
COSRT (College of Sexual and Relationship Therapists) has a search for practitioners local to you. You can have a look around websites or speak to a few people on the phone before you book a first appointment. As with any private therapy, the relationship with the counsellor is pretty important, so feel free to ask them questions about how they work and to air any concerns even in an initial assessment session.
There is evidence of benefit of the use of acupuncture for unprovoked pain. Acupuncture may be obtained either on the NHS via your GP, or privately. Your GP might provide acupuncture in the surgery, or he/she might be able to refer you directly using the NHS e-Referral Service. Acupuncture services are present in many NHS hospitals but usually within pain management clinics so make sure that you ask. Don’t forget to take a copy of the vulvodynia and acupuncture paper for the acupuncturists. It is likely that she will not know much about vulval pain but that should not be a problem as the needles (which do not go into the vulva!) are inserted into the parts of the body that cover the genital area, which includes the vulva.