This page provides advice to anyone looking to start a new vulval pain support group. As the VPS is a British charity, the page is chiefly aimed at those living in the UK, but most of the advice given here will apply elsewhere as well.

Anyone searching for existing vulval pain support groups in the UK can find these at UK support groups. Those looking for support groups outside the UK, or groups which use languages other than English, will find details in International groups and organisations.

Why set up a group?

Support groups have long been established for many different types of concerns ranging from medical conditions to social and domestic problems. They are an excellent way of gathering people with a common problem and they offer to those attending them many kinds of benefits and help. These include:

Receiving and building up personal support

Vulval pain is an isolating condition and for many sufferers their only contact is with a doctor. The condition is difficult for many people to discuss with their family and friends. Meeting others who suffer from the condition can often help share experiences and feelings. Those that do attend support groups can gain considerable benefit and are often relieved to find that others share the same problem.

Gaining knowledge

Vulval pain is often misdiagnosed and mistreated, and it often fails to respond to treatment. For many sufferers the condition is surrounded by much mystery as to the cause and effective, appropriate treatments. The benefits of attending a support group would be the chance to discuss different treatments, possible causes of pain and ways of coping with pain.

Giving as well as receiving support

Attending a support group is a two-way process. Every person who attends can give some contribution to the group to the benefit of others, whether it be a personal experience or a new idea about treatment. Being a part of a group, whether active or not, is important.

Hope

Hope should always be present. Recovered members can provide inspiration to other members. Seeing someone who has faced the same problem and who has progressed is an invaluable gift of hope.

How do I start?

Contact the Vulval Pain Society and we will try and see if there is a support group in your area first of all. If there is then we will put you in contact with that group (there may be a need for more than one group in that area).

You do not have to have to have any special qualifications to set up a group although motivation and enthusiasm do help! Planning is essential for a successful start. Setting up the group may take some time, but once it is up and running you can delegate different tasks to other members of the group (e.g. locations of different meeting places).

Advertising the new group

Simple local advertising in your area, or online, will attract attention to your new group. The Vulval Pain Society can include details of your group on our website and social media channels, and for those in the UK, we can contact different outpatient clinics and hospital departments attended by people with vulval pain. Local newspapers and magazines are also a quick way of gathering interest. Doctors and other health professionals in your area may be willing to pass the news of your group on to their patients.

The first meeting

Where to hold it?

There is no rule as to where the meetings should be held. You may wish to invite people into your own home as some groups do; however, this may place undue pressure on you (families, phones etc.). Alternatively, you may want to use a room in a local community centre or town hall. There is often a room available in your local hospital or clinic if you have the support of your health professional; however, be aware that many people with vulval pain would prefer not to attend a location where they might feel uncomfortable.

The important thing is to pick a quiet, private location where those attending can feel comfortable and discuss sensitive issues. Also, remember that it is best to choose central locations, with parking and access to public transport.

What time?

Set a convenient time suitable for most people, usually in the evening.

Be prepared

Remember that the meeting is run by you for you and the other members. Make the evening informal and relaxed. Before the meeting starts make sure there are plenty of chairs and have some idea of a structure for the evening.

Welcome everybody

As people arrive, say hello to people arriving at the door and direct them to the seats. An informal coffee/tea may help break the ice and get people chatting.

Opening the meeting

  • Start on time.
  • Introduce yourself to the members.
  • Outline the aims of the group and the purposes of meeting.
  • Emphasise confidentiality.
  • This may be a time to discuss some aspect of vulval pain. Some examples may include different treatments, causes of vulval pain, homeopathy, individual experiences or coping at home with pain.
  • At this stage you could open up the discussion to members and give others an opportunity to talk.
  • A guest speaker such as a health professional (doctor, health advisor) may give some formal focus to the evening. The VPS may be able to arrange this.
  • Close the meeting on an upbeat note leaving members wanting to come back!
  • Informal time at the end of the meeting gives members a chance to get to know each other.

What about friends and relatives?

It is probably best that the initial meetings should be limited to people with vulval pain only. This avoids potentially embarrassing confrontation with partners of those attending. Although some of the American support groups do provide support for partners of people with vulval pain, it is probably not appropriate for partners to be present at a first meeting.

What size should the group be?

Research has shown that the best size for a support group is approximately 8 to 12 members. However, do not be disappointed if there are initially fewer attendees. Possibly they may all come next time?

How often should we meet?

It is up to you. You could discuss this with the other members in the group at the first meeting.

What if nobody turns up?

That doesn’t matter! Ups and downs in attendance are normal. If your group has a consistently poor attendance rate, then it may need further advertising, or a change in the format of the evening.

What can the VPS offer me?

  • We can help with the local advertising of the group, e.g. publicity on our website and social media channels, and printing of posters or letters
  • We can put you in contact with people who are in existing groups
  • We can give you up-to-date literature on vulval pain for members to read during your meeting
  • We can even attend your first meeting and talk on some aspect of vulval pain!