A recap and synopsis of past events, meetings and workshops held by the Vulval Pain Society.
Report from the Norwich 2012 VPS workshop
The VPS Norwich Workshop took place on Saturday 9 June 2012 at Norfolk and Norwich University Hospital.
Report from the Vulval Pain Society Super Workshop held at The Royal College of Obstetricians and Gynaecologists, London, 4 December 2010
This conference report summarises the day we had in London at our annual Super Workshop. The day was for disseminating information to patients and a little different from the workshops that we have had in the past. The workshop was packed with key health professionals working within the field of vulval health and where better to have the conference than in the Royal College of Obstetricians and Gynaecologists – a medical college dedicated to the health of women! 105 women and partners came, of whom around 20% were health professionals. This was a great turn out in view of the snow which had prevented many from attending.
Dr Karen Gibbon, a Consultant Dermatologist working at Whipps Cross Hospital, gave an overview of vulval problems, commenting on the normal vulva including different anatomical appearances. She commented on the confusion between the vagina and the vulva and how so often especially in the press the two are mixed up. The vagina is a hollow muscular tube and the vulva is the outer genital skin where problems can arise such as skin disease and vulval pain. Dr Gibbon gave us a graphic presentation of the variety of different vulval problems that she sees in her vulval clinic, commenting that the vulva is another area of skin, and skin disease on other sites of the body can also affect the vulva, e.g. psoriasis and eczema. There were many clinical slides to see but the general feeling from delegates was that this was important to give a realistic picture of vulval disease rather than the non-realistic picture given by the internet.
Dr Gibbon’s self-help tips included:
• Avoid soap/fragranced products directly on the vulva
• Use an emollient to wash with and reapply regularly
• Ask for vaginal and vulval swabs (+/- MSU) if antifungals are not helping
• Throw away your thongs
• Get a mirror and take a good look
Dr Gibbon spoke passionately about the experiences of patients with vulval problems. She had two asks of the audience. First of all, Channel 4 is planning to film another episode of ‘Embarrassing Bodies’ and she is looking for a willing volunteer to come forward to go on the show to be filmed. This would involve a vulval examination. This has been carried out before by Fabia Brackenbury of the Vulval Health Awareness Campaign. Secondly, Dr Gibbon would appreciate feedback on the form that they are currently using in clinic: she’d like to improve it so that it is even more beneficial. You can download the form from the VPS website and then email us at firstname.lastname@example.org or post it to our PO Box.
Dr Andrew Baranowski is a Consultant in Pain Management at the University College of London. He focused on the mechanism of pain those women with vulvodynia experience. The origins of pain in vulvodynia remain unknown but perhaps physical, psychological, sexual, stress and even genetic factors could play a role. He touched on the negative effects that pain has on the individual which include 1) thinking about the pain (cognition), 2) unhelpful behaviour related to pain (e.g. less physical activity) and 3) sexual and emotional consequences. There were two key words from his talk on pain: MEMORY of pain and AMPLIFICATION of pain. The mind can store memories of painful events and this can in turn lead to certain activities, events and actions triggering a flareup of the pain by activating the pain detecting nerve endings in the skin (called nociceptors). A chemical reaction in the skin causes this. In addition, the perception of pain can be amplified in certain situations so the pain experience is increased. This might happen in a number of situations such as stress, focusing on the pain and the absence of distraction. The medical term allodynia can be applied to vulval pain: this is when you feel sensations as pain that you should not normally be able to feel as such.
Helen Forth is a Women’s Health Physiotherapist working at the Royal Free Hospital. She outlined the problems of the pelvic floor muscles that are seen in women with vulvodynia. In her work she finds the pelvic floor muscles (levator ani) are not only tightly contracted (hypertonic) but also weak. She discussed a number of specific and also holistic strategies to overcome this, including pelvic floor muscle rehabilitation, such as pelvic floor exercises to reduce muscle tension and trigger point therapy for tight muscles which involves a vaginal examination to relieve knots in the muscle. Biofeedback was also discussed. This is a technique that trains people to change a bodily function by controlling certain bodily processes that normally happen involuntarily, such as heart rate, muscle tension, and skin temperature. In vulvodynia a vaginal probe measures muscle activity and displays it on a monitor. This feedback to the patient can be used to control the problem which in vulvodynia can be vaginal muscle spasm.
Mr Brent Osborn-Smith gave a clear overview of osteopathy and outlined the different types of osteopathy (classical, craniosacral osteopathy and visceral osteopathy). Treatment can be used for a wide variety of problems, including pain. Acupuncture was discussed and he covered the different types of acupuncture including classical Chinese acupuncture (often given with herbs), western medical acupuncture, trigger point acupuncture and electro acupuncture.
Dr Alexandra Mizara, a Clinical Psychologist working at the Royal Free Hospital, gave an excellent overview of cognitive behavioural strategies for vulval pain. Cognitive behavioural approaches aim to improve the way that an individual manages and copes with their pain, rather than finding a biological solution. The approach is very much related to problem solving and returning control to the sufferer. Many patients state that the pain rules their lives and cannot see how this can change without a medical cure. However, with appropriate instruction in a range of pacing techniques, cognitive therapy to help identify negative thinking patterns and the development of effective challenges, stretching and exercising to improve physical function, careful planning of tasks and daily activities, and the judicious use of relaxation training, many people find the treatment enables them to take back control of their lives, to do more and feel better. Dr Mizara discussed the importance of the balance of human needs: basic, spiritual, vocational, and social. She teaches acceptance of the pain to patients, i.e. trying to get patients to see things as they are at the moment.
Sally Turner from the London Vulval Pain Support Group spoke about her personal journey through and with vulval pain and how a caring sexual partnership was of benefit to her. She emphasised the positive aspects that can be gained even though she was living with pain and the importance of a good support network.
Finally, we were thrilled to have Professor Wendy Reid, who is the Vice President of the Royal College of Obstetricians and Gynaecologists talk on the training issues that medical doctors have in relation to vulval disease. Prof Reid also runs a vulval clinic in London at the Royal Free Hospital. There is a syllabus that doctors must follow with regard to vulval disease and they are tested on their knowledge. In her capacity as Vice President of Education for doctors, Prof Reid is very keen for vulval disease to remain a priority.
We hope to have another annual day in December 2011. Please keep an eye out on the website for more information on dates and venues.
Report from Aberdeen Vulval Pain Society Workshop held at Aberdeen Maternity Hospital, Aberdeen, 19 June 2010
Host: Dr Maggie Cruickshank, Consultant Gynaecologist, and Christine Godley, Nurse Specialist
A small workshop for women was held in Aberdeen at the request of the Aberdeen team. In total there were 15 women and the day involved discussion on vulvodynia diagnosis and management options. The informal question and answer session was well received and valued by the women, which is sometimes not possible in larger workshops. A group from Glasgow attended the day. There is a support group there that meets regularly.
Report from the Portsmouth Vulval Pain Society Workshop held at the Queen Alexandra Hospital, 10 April 2010
We held a great day in Portsmouth thanks to the hospitality of Mr Francis Gardner and Dr Bronwyn Hughes, both consultants at the Queen Alexander Hospitals. Around 35 women and 4 partners attended from the south of England. The focus of the day, as with all our events, was education, awareness and informal support. Both David Nunns and Kay Thomas spoke about getting an accurate diagnosis and discussed the treatment options for both vulvodynia and lichen sclerosus. David stressed the difference between the provoked and unprovoked subgroups of vulval pain and how treatments can differ. Kay discussed the importance of combining treatments, giving treatments a chance to work and discussed her own strategies of dealing with vulval pain. Fabia Brackenbury, founder of the Vulval Health Awareness Campaign gave an update on advocacy for women with vulval problems at a national level.
Other topics for discussion were the following.
Fragmented care – a common frustration among women. Just because a diagnosis of vulvodynia has been given this does not always equate to getting better as the treatment options are never explained or offered.
Partner frustration – sometimes helplessness when a partner was in pain. Partners’ feelings and concerns are not always aired and shared.
Treatment options – David highlighted four areas for women to explore:
1) medical treatments e.g. drugs;
2) physical treatments e.g. pelvic floor physiotherapy;
3) sexual therapy: overcoming the problems of fear and phobia of penetration and
4) holistic care: general lifestyle habits e.g. taking exercise and relaxation.
Bladder issues were raised as a common problem especially burning, stinging and the feeling of incomplete urination. Women with vulvodynia frequently have bladder problems. This can be a coincidental problem to vulval pain, but some women with vulval problems get a flare up of their symptoms as the urine on the sore skin can irritate. Good emollients (e.g. Epaderm) and drinking plenty of water were suggested. The She-Wee was also mentioned to try keep urine off the skin! Some women have as much disability with their bladder pain as with their vulval pain, and there is an overlap between vulvodynia and overactive bladder syndrome/interstitial cystitis. (This is bladder pain and frequency of urine in the absence of infection. The cause is unknown.)
Discussion of a local support group was raised which would be beneficial for networking and support – watch this space!
Finally we were thrilled to have Diane Hamdy join up who was a founding member of this charity. Diane is currently a Specialist Nurse in Dermatology in Crawley.
Report from the Shrewsbury Vulval Pain Society Workshop held at the Royal Shrewsbury Hospital, 19 September 2009
The VPS were invited to Shrewsbury to organise a workshop at the request of the Welsh Marches Vulval Pain Support Group. Around 30 women and 5 partners attended. Whilst many were from the local area, several women had travelled from as far away as Cambridge and Weymouth. The morning focused on the clinical aspects of vulval problems, getting a diagnosis and treatments. In the afternoon Dr Daian Zou, a local acupuncturist, kindly gave her time to discuss what treatment entails for women with vulval pain. Acupuncture is suggested as a treatment for vulval pain as it is an effective treatment for chronic pain in general. The day was informal as usual with opportunities to ask questions and share experiences. Many questions revolved around getting referrals to the right health professionals – getting to see a specialist and the wider specialist team. The current system of managing chronic pain, which is a medical model, does not often help many patients, and a team-based approach using a physiotherapist, sex therapist and even a pain management team, i.e. a holistic approach, is probably the best way forward for most patients.
The need for hope was a main issue for many women. Many did see their own problem as hopeless and could see little light at the end of the tunnel. As a doctor, I do see people who manage to turn their pain around and get better. However, patients on the road to recovery will not usually come to workshops (which involves education and sharing a recent diagnosis with other women). Women with vulval pain can see a hopeless, confusing view of vulval pain when trawling the vast amount of information on the internet, and sometimes the negativity portrayed can influence healing, whilst staying positive remains an important part of getting better.
Further information about the Welsh Marches Vulval Pain Support Group who hosted the workshop
My name is Brenda and I run the Welsh Marches Vulval Pain Support Group which has about 22 Members to date. The group was founded in 2008 and covers Cheshire, Shropshire, East Wales and Herefordshire, but we also have quite a few Members from outside that area. We never turn anyone away and everyone is welcome to join. We meet approximately every two months at The Lord Moreton, which is on the A5 between Wrexham and Oswestry, or The Grapes, which is on the outskirts of Shrewsbury, close to the Oxon Park and Ride. We are open to suggestion should anyone request a different venue. We usually combine the Meeting with lunch, and always request a private table, away from the other diners. We usually meet on a Saturday or a weekday evening. Should we decide to invite a guest speaker, we would meet at the Hamar Centre or a similar suitable venue.
At our Meetings, Members have the opportunity to talk through their problems, if they wish to do so. Women with vulval pain tend to feel isolated. Friends, and sometimes family, are unaware of their condition. Sometimes Members feel as if a weight has been lifted from their shoulders, as I did, when they realise that there are other women out there experiencing similar, if not identical, problems to the ones that they are experiencing themselves. Women usually leave our Meetings feeling that life is not so bad after all, and eager to try out the advice suggested by other Members. By being part of a support group you get to hear all about the up and coming new treatments available for vulval pain.
We are looking forward to David Nunns’s next visit which will be on a Wednesday, the evening 31 March 2010 at 7.00 pm at the Hamar Help and Support Centre. This will be a smaller event than the Workshop and we hope to have some medical people present.
Report from the Liverpool Vulval Pain Society workshop held at the Royal Liverpool Hospital, 16 May 2009
A VPS workshop was held in Liverpool on 16 May 2009 at the invitation of Dr John Kirwan. Dr Kirwan is a Consultant Gynaecological Oncologist working at the Royal Liverpool Hospital and runs the vulval clinic service there. There was a feeling amongst the clinicians there that a workshop would be of local benefit, hence the invitation. Around 25 women and several partners attended the day and there were talks on the diagnosis of vulval diseases, vulvodynia management and treatment. All this information is included in our website pages. The guest speaker was a local osteopath called Gersende Langlume and she focused on the osteopathic approach to treating vulval pain. Some women develop vulval pain because of referred pain from the lower part of the coccyx (tail bone of the spine). For some reason either injury or ‘wear and tear’, slight movement of the coccyx bone can produce referred pain to the vulva (or penis as men can develop the same problem). Treatment is therefore needed to correct the coccyx position and manipulate it to its original position! Gersende Langlume is one of a few osteopaths who carry out coccygeal manipulation for vulval pain. From our own research this article is an example of what the procedure might entail although in this reference they are using the technique for coccyx pain. Can this technique help? There is little research into this area, but anecdotally patients have improved with treatment. Finding a practitioner locally (osteopath or chiropractor) might be a good start, and then discussing with them the information given in www.coccyx.org. Many practitioners will not offer this type of treatment (in the same way that some doctors do not know about vulval pain), but some may. A good practitioner should be able to discuss with you whether this procedure is in their repertoire of treatment, and if not, whether they can suggest someone who can offer it?
If you would like to come to a workshop then please keep an eye on our Future events page. If you would like us to come to your area (we are not London based) then we will consider it! Up-to-date information is always requested at workshops so see the research pages on this site.
Report from the Newcastle Vulval Pain Society workshop held at the Royal Victoria Infirmary, 17 January 2009
The North East was our destination for the 17th VPS workshop. On a cold, frosty Friday Kay and I ventured up to Newcastle at the invitation of Drs Janet McLelland and Jane Hussey. Dr McLelland is a Consultant Dermatologist working at the Royal Victoria Infirmary and has had a long interest in vulval disease, especially vulval dermatology. She runs a twice-a-week genital skin clinic which includes many patients with vulval problems. This is one of many multidisciplinary clinics in the UK. She works with Dr Jane Hussey, a Consultant in Genitourinary Medicine at a GUM clinic in Northumberland so that both doctors can give different perspectives on complex vulval problems. They were kind enough to give us accommodation for the day (and also put us up for the night).
There were 18 women and partners who attended along with other local health professionals. We usually advertise the day via the internet, by letter from our database, by contacting local GUM clinics and through flyers in the hospital department. Some women attending were newly diagnosed with vulvodynia and some had had longstanding problems. I am always amazed by the power of the internet, as some women had come from Scotland, London and North Wales, to gain information and to explore their treatment options. I gave an informal talk on vulval anatomy and common conditions as well as a more in-depth talk on vulvodynia management and treatment options. Common themes come up at workshops: how to apply creams, how to take drugs for pain, managing side-effects.
There is a general feeling in the medical community that the way forward to getting effective care for vulvodynia is to have a team approach from different practitioners. There are many treatment options in vulval pain and most doctors work inside their own comfort zone. If a treatment is not within the remit of one health professional then he/she should refer on (e.g. a gynaecologist is unlikely to be able to give a course of psychosexual counselling and a psychosexual counsellor is unlikely to examine a patient).
The different practitioners that might be involved with pain management are:
1) Gynaecologist; GP; dermatologist; genitourinary medicine physician – to assess and diagnose vulval problems and prescribe treatment
2) Physiotherapist – for assessment of the pelvic floor muscles and desensitisation/massage of the area
3) Psychosexual counsellor – for structured sex therapy for patients and partners
4) Pain management team (anaesthetist, pain management nurses and sometimes an acupuncturist) – for the management of severe pain.
Depending on your own individual condition it may be necessary to involve these different practitioners. GUM clinics are open access and you don’t need a referral, plus you can be seen out of your area if you prefer.
Dr McLelland and Dr Hussey are keen to develop a team approach to vulvodynia management and are currently working with local physiotherapists and pain clinics to provide such a service. They are happy to take referrals from the area and if you have vulval pain and need to be seen you could ask your doctor for a referral to the service.
Report from Cambridge Vulval Pain Society Workshop held at Addenbrooke’s Hospital, 19 July 2008
A workshop was held at Addenbrooke’s Hospital, Cambridge at the invitation of Dr Jane Sterling, Consultant Dermatologist, where she has a vulval clinic practice there. Around 20 women from the area attended the workshop, which as with other workshops was an informal affair giving women and partners (two partners attended) the opportunity to learn more about vulval problems and share experiences, tips and the frustrations which the problem impacts on their lives. Dr Sterling gave an excellent lecture on vulvodynia from her perspective.
Table one (right) covers what we believe leads to the final problem of vulvodynia (unprovoked pain and sexual pain). There can be an initial trigger that happens to the vulva such as a bad attack of cystitis or thrush. This inflammatory condition soon settles leaving residual tenderness. There may be some individuals more genetically predisposed to these problems than others, but it is not clear why some women develop pain and others do not, as most attacks of thrush and cystitis do resolve without any residual pain. It is possible that in the vulval skin there is an increase in the number of nerve fibres and also increased nerve sensitivity leading to the problem of pain. This may lead to unprovoked or touch-sensitive pain which in turn can produce a problem of sexual pain on touch, and finally, a spasm within the pelvic floor muscles leading to a vaginismus response. Pain with sex can lead to avoidance. This will explain the different treatment options that we use for vulvodynia and how treatments should be combined. Drugs such as amitriptyline, nortriptyline and gabapentin can dull the nerve endings; psychosexual counselling can help with the emotional issues surrounding sex-related pain, such as avoidance of sex and the problems of vaginismus, which is an involuntary tightening of the muscles. Desensitising the pelvic floor using vaginal trainers, vibrators and massage of the pelvic floor can be very useful. For more details see the VPS Handbook.
We had a presentation from Judy Birch, who is the Chair of the Pelvic Pain Network, a network related to providing support and advocacy for people with pelvic pain. She gave an outline of her work which includes ensuring that patients are at the heart of any medical committee to help with writing guidelines and giving the layperson’s perspective when deciding on how to treat patients. She covered in quite close detail work that she had done to show the scale of the problem of pelvic pain, and in particular pudendal neuralgia, which has an overlap with vulvodynia.
In the afternoon the workshop was more informal. Some women had come long distances such as from Southern Ireland, where services are very scarce. Despite these times of so-called uniformity in the NHS we still have areas of the country where vulval care is poor. Pain management issues, sexual pain and treatment options were all discussed.
We are indebted to Dr Sterling for putting us up for the day. Please keep an eye on the website for further workshops – we may be coming to your area!
Report from Canterbury Vulval Pain Society Workshop at Kent and Canterbury Hospital, Saturday 12 April 2008
The Vulval Pain Society held a workshop for women and partners with vulval problems at the Kent and Canterbury Hospital on 12 April 2008. We were fortunate to be invited by Dr Claire Fuller, who is a Consultant Dermatologist in the Canterbury area. It was a great day with around 25 women and partners attending. Most of the women had vulvodynia and lichen sclerosus and we were able to share both information and patient experiences amongst the group.
David Nunns gave a general lecture on the management of vulvodynia, sex-related pain and lichen sclerosus and covered many aspects of treatment.
In the afternoon a lecture was given by Nathalie Bachet, a local acupuncturist, to talk generally about acupuncture in chronic pain management and as a treatment for general stress, anxiety and well-being, which are common problems in chronic conditions. Many of the women there had tried acupuncture with success, so the talk was of interest to the group.
Many themes recur in workshops and this really relates to access to good medical care and the current problems of fragmentation of care between different specialists, e.g. physiotherapists, sex therapists and doctors. Another recurring theme was the lack of time patients get with doctors and also how often there can be perceived to be a lack of a management plan and cohesive treatment. Things are better, however, than they have been in the past with more focus on diagnosis and the realisation that teamwork is probably the likely way forward for many women with vulval pain.
The information days are a good resource day to get contacts of health professionals and tips on treatment that are not necessarily medically prescribed. The day was very informal – as most workshops are – and was focused on women and their partners.
Our thanks go to Claire Fuller for being our host.
Report from Belfast Vulval Pain Society Workshop held at Belfast City Hospital, 1 September 2007
The Vulval Pain Society held a workshop at the invitation of Sonia Hutchinson, a dermatologist from Belfast. Seventeen women attended on the day and these were patients from Sonia’s practice, plus women in the area whom we had approached through our database and women reading about the day on the internet. I gave a standard lecture on managing vulval problems and getting a diagnosis, and discussed vulvodynia and lichen sclerosus. Although the two conditions are very different there is a considerable overlap as concerns the impact on the individual. There was generally a lively discussion about different treatments. In the afternoon we had a very informal session where people could ask questions.
For me the highlight of the day was the interaction between the health professionals who had attended (doctors and nurses) and patients themselves; there were clear failings in communication issues between us as the health professionals and patients in terms of reassurance about treatments and instructing patients how to treat themselves. For example, there were still concerns about the use of steroid ointments on the vulva as in lichen sclerosus and about the side-effects of taking tablets such as amitriptyline and gabapentin, which are usually prescribed for vulvodynia.
There is still a huge amount of work to be done in terms of awareness, not only in the hospital setting, but amongst general practitioners and nurses. I have personally learnt that as a doctor I need to really stress the importance of telling patients how to take their treatment because if patients are unsure they generally stop the treatment. I feel that sometimes patients do not give the treatment the opportunity to work.
Many issues were discussed and many women shared their concerns of isolation and frustration particularly prior to a diagnosis. Sexual issues and difficulties were mentioned, in particular, tightening of the lower vaginal muscles, which can lead to painful sex; this was the case for both lichen sclerosus and vulvodynia. Many of the women with lichen sclerosus were clearly worried about the risks of cancer in the vulval skin; this risk, we believe, is very low, certainly lower than 5%. Self-examination was stressed as being extremely important.
I thought that the day was very enjoyable and informal and would encourage any woman reading this who wants more information to come along on one of these days, as the day is predominantly for women rather than for the health professionals.
Keep an eye on the website for future dates.
BSSVD Cardiff 2006 – VPS represented at National Medical Conference
We were thrilled to be invited to the Biennial Scientific Meeting of the British Society of the Study of Vulval Diseases (BSSVD) held in Cardiff in April 2006.
This Society has been established for many years and is composed of doctors and other health professionals with an interest in vulval disease. The group consists mainly of dermatologists, genitourinary medicine physicians and gynaecologists. The aims of the group are to promote the understanding and research and treatment of vulval conditions. They are an influential group involved with producing guidelines on the management of vulval problems and also advising other medical institutions on the management of vulval conditions.
There was a heavy emphasis at this conference on the patient’s perspective of vulval diseases; not just vulval pain but all vulval conditions including lichen sclerosus, lichen planus and vulval intraepithelial neoplasia (a premalignant condition of the vulva).
It was great to hear such an emphasis placed at the conference on the impact of the condition on the individual woman. The Vulval Pain Society was invited by the Chair of the conference, Professor Alison Fiander, to present an update on our work so far and Kay Thomas gave an update to this Society. It was very encouraging for us to hear so much emphasis on the patient experience and the future aims of the Society, chaired by its current President, Professor Wojnarowska, will include the experience of the patient at almost every level from writing guidelines to research and conference material. The shift is changing from a medically-based, doctor-led management of patients with vulval problems to a more patient-centred package of care involving different professionals with different skills. It is encouraging for the future!