Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 I've treated this often. Very low success rate, but the favourite herbs for me are Corydalis yanhusuo and Vib. prun internally. Creams, gels etc can help. I've even incorporated kava into creams. I must now apologise to Graham because below I have pasted a copy of one of the 'Vulval Pain Society' newsletters, and it is quite long. However, there is such a lot of info on it (orthodox and complimentary) and lots of contacts etc that I think it is worth presenting in its entirety. Hope this helps Stuart Fitz Vulval Pain Society Newletter In this issue 1 Who is the Vulval Pain Society? 3 Support group drive 5 Members¹ survey 13Over to youŠ. 17 Contacts WELCOME! Enclosed in this issue (finally) is the members¹ survey. A total of 238 members took time to fill in the detailed questionnaire regarding symptoms, treatments and experiences. Many thanks to you all and we hope the information enclosed is of value to you. Many questionnaires showed similar experiences and frustrations. As you will see from the survey the treatments greatly varied. The VPS evaluation was very useful to us as it highlighted several deficiencies in our service, which need to address. In general the newsletters were well presented, but more members experiences and research updates were suggested. The library service was poorly evaluated partly because so many of you have been waiting for books to be dispatched! This has been a problem because books have not been returned despite our efforts to remind people. So sorry! Other suggestions for the future would be the establishment of more support groups and local contact (see later) and a telephone help line. The work reported in this survey will hopefully be presented at meetings for health professionals later this year. , Diane, Marina, Gail JUST WHO IS THE VULVAL PAIN SOCIETY? The team responsible for developing and running the VPS on a day-to-day basis include Nunns Marina Folch Diane Hamdy Gail Garner In addition there are many who provide vital support to women with vulval symptoms through their input into support groups around the country. t Chapman, Fabia Brackenbury and Emma Byron have all dedicated so much of their time and effort into their groups. The website has been very popular. Our thanks go out to Lizzie who has been so helpful with setting up the site and promoting vulval pain as an important health issue. She was in ŒRed¹ magazine this month. Nunns I currently work as a doctor in the speciality of gynaecology in Leicester in the UK. My involvement with women with vulval pain began in 1995 when I worked in a vulval clinic in Bolton. To my surprise many of the women attending that clinic did not complain of a variety of text-book vulval conditions, but over one half of the clinic attendees had vulval pain syndromes. Time and time again, myself and Diane, the clinic sister, would see women with a long history of vulval pain who had not been diagnosed properly and who had tried endless useless treatments. There was invariably a sense of anger and frustration with each new consultation. Forming the society in 1996 enabled us to spread basic information to women around the country. When I was in Bolton I completed nearly 2 years researching vulval vestibulitis and completed a thesis on the clinical features and possible causes of vulval vestibulitis. Much of the research I produced from the thesis has been covered in these newsletters. Although it has not been essential that a health professional should start a group such as the VPS, I believe my medical training has helped as so many enquiries have been medically orientated and this has also helped to try and produced accurate factsheets on all issues relating to vulval symptoms. Many other vulval conditions causes symptoms like vulvodynia and many women need specific direction when they write to us with other conditions Marina Folch I also work as a doctor in the field of obstetrics and gynaecology. I first became involved with the group when working with in 1996 in Leicester. My involvement is with the day-to-day running of the group. Working as a gynaecologist I see vulval pain in my clinics and realize that it a neglected aspect of womens¹ health. Diane Hamdy Hello, just to give you a bit of background, I am a Registered general nurse and Registered midwife, although I haven¹t practiced as a midwife for many years. I have a long history of working in sexual and reproductive health since qualifying in 1980. I developed my interest in vulval pain whilst working with in Bolton in 1996, hence the beginning of the Vulval Pain Society. Since starting the Vulval Pain Society with , I¹ve had a couple of job changes and a geographical change to the South of England I now live and work in Berkshire. Since 1998 I have been working in Dermatology, as a Dermatology Specialist nurse, but still participate in the monthly Vulval clinic run in my area by the Consultant Dermatologist. Since starting this new job, and being fortunate enough to have Gail as secretary my role with the VPS has decreased, (I am now able to have a social life). However, I still maintain a keen interest in the VPS and promoting the cause of women with vulval pain. Gail Garner I am a medical secretary working in Derby and am Œemployed¹ by the VPS to help run the group, open mail and send out responses. I work closely with with the overall running of the group. LOCAL SUPPORT NETWORKS NEEDED Many of you who completed the survey requested that there should be more local support and wanted more support groups to be formed. Membership is currently around 500 and as you can see from the questionnaire there is great potential to start some regional groups. Enclosed with this newsletter is a form inviting you to go on a Œlocal list¹ of contacts in your area. Either you yourself can be contacted and have your details published in the newsletter (or just on our database), or you can just simply request a list Distribution of members of the VPS England Bedfordshire 6 Berkshire 11 Bristol 7 Buckinghamshire 9 Cambridgeshire 3 Cheshire 9 Cornwall 4 Cumbria 5 Derbyshire 5 Devon 12 Dorset 6 Durham 2 East Riding of Yorkshire 5 East Sussex 7 Essex 12 Gloucestershire 9 Greater London 44 Greater Manchester 9 Hampshire 19 Herefordshire 2 Herefordshire 15 Kent 15 Lancashire 7 Leicestershire 8 Lincolnshire 6 Merseyside 6 Norfolk 4 North Yorkshire 3 Northamptonshire 5 Northumberland 1 Nottinghamshire 10 Oxfordshire 10 Shropshire 1 Somerset 6 South Yorkshire 14 Staffordshire 5 Suffolk 12 Surrey 14 Tyne and Wear 1 Warwickshire 7 West Midlands 12 West Sussex 9 West Yorkshire 8 Wiltshire 4 Worcestershire 5 Wales Blaenau Gwent 2 Caephilly 1 Cardiff 1 Carmarthenshire 3 Ceredigion 1 Gwynedd 1 Pembrokeshire 1 Powys 1 Swansea 2 Scotland Aberdeen City 1 Borders 1 Edinburgh 2 Glasgow 2 Clackmannanshire 1 East Ayrshire 1 Falkirk 1 Highland 3 Renfrewshire 1 South Ayrshire 1 Channel Islands Guernsey 1 Isle of Man 1 Northern Ireland 5 Southern Ireland 4 USA 2 Germany 2 Australia 2 Netherlands 1 France 1 Canada 1 Turkey 1 of women in your area so you can make your own contact. This will hopefully give you support other than the newsletters. If you do manage to meet up let us know and we can out details into the newsletter. VULVAL PAIN SOCIETY MEMBERS SURVEY Last year we sent out a questionnaire with newsletter 14 to gather information on all members that had joined. The group had been going for around 3 years at this stage and we felt it was important to gather information on members¹ experiences and publish this in a future newsletter. We also needed to evaluate the group so to improve our service. The questionnaire was loosely based on a questionnaire developed for patients in 1991 by the International Society for the Study of Vulval Diseases. A total of 228 women replied which was a response rate of 45.6% of women with vulval pain. 8 members who replied were health professionals and therefore did not complete the questionnaire. YOUR BACKGROUND The average age of the group was 49 years with the youngest and oldest member being 20 and 91 years respectively. 26% of women were less than 35 years and 20% were older than 65 years. 62% were married, 23% single, 11% divorced and 4% widowed. 54% of women had children. Of these 121 women, 13 had had caesarean sections and the rest had had vaginal deliveries. A total of 14 women noticed their symptoms developing after delivery; 11 were following normal vaginal deliveries and 3 were after caesarean sections. 50% of members had had previous health problems. The common illnesses are listed in table 1. Of the group, 126 took regular exercise at least twice a week. Table 1. Common medical problems Recurrent thrush 42 Irritable bowel syndrome 38 Previous hysterectomy 28 Recurrent cystitis 9 Endometriosis 8 Prolapse repair 6 Depression 5 PRESENT VULVAL COMPLAINTS The Vulval Pain Society has members with a variety of different diagnoses. Although the largest proportion were women with vulval pain syndromes (vulval vestibulitis and vulvodynia) there were many with other diagnoses e.g. lichen sclerosis, recurrent thrush and oestrogen deficiency (atrophic vaginitis). A large number of member, 23%, did not have a diagnosis despite being a member and having had seen a doctor (Table 2). Table 2. What diagnosis do you have for your vulval symptoms? None 23% Vulvodynia 27% Vulval vestibulitis 28% Lichen sclerosis 5% Others 17% Not unsurprisingly, pain was the main complaint amongst women, in particular burning and soreness (table 3). This fits in with the above diagnoses. Many had painful sex together with a background of pain and only 5 members (all with vulval vestibulitis) complained of painful sex only and were symptoms free otherwise. Members with itching only were in the minority and either had lichen sclerosis or recurrent thrush. Table 3. What are your vulval symptoms? Pain only 25% Painful sex only 2% Pain and painful sex 46% Itching only 3% Pain, itching & painful sex 24% 30% patients had continuous pain, whereas 70% patients described intermittent pain with both good and bad days. The consequences of pain on the members¹ day-to-day living was questioned; pain and inability to be sexually active were the main concerns about symptoms. Other concerns included relationship problems, a loss of confidence, clothing restriction, a loss of femininity and isolation. Table 4: What bothers you about your symptoms? The pain 42% Not able to be sexual 42% Taking control 11% Lifestyle changes 4% The average length of symptoms was 6 years for the group as a whole. One member had had symptoms for 2 months and the longest length of symptoms was 33 years. When asked on a score of 0 to 100 what would your average pain level be the average score was 37. The average score for the worst symptoms was 79. The average length of time of symptoms was 6 years The majority of the group used just plain water to clean the vulval area, however, many used aqueous cream, aloe Vera soap and normal soap. Table 5: Top 4 causes of symptoms* Recurrent thrush Stress Anti-thrush creams Previous sexual experiences *Only vulval vestibulitis and vulvodynia Table 6: Foods associated with vulval pain (descending order) Coffee Yeast containing products/wheat Alcohol Sugary foods Fruit juices Others, spicy foods, cheese, nuts, beetroot, lemons, strawberries Table 7: My discomfort usually causes NO interference with daily routine or planned activities 29% SOME interference with daily routine or planned activities 44% An interruption in daily routine or planned activities 15% Confinement to bed 2% The pursuit of immediate medical attention 2% Table 8: The statement which describes the discomfort which I most often have Slight, I notice only when I think about it 12% Slight, I can ignore it by not thinking about it 14% Moderate, I always know it¹s there but I can still perform most tasks 56% Severe, it allows me to perform only Tasks which require little concentration 12% Severe, makes it impossible for me to do anything but seek medical attention 6% We tried to assess the pattern of pain among women with vulval pain syndromes. 50% of members felt their symptoms were less intense than when they originally developed, but 23% felt symptoms were worse. Interestingly 67% had symptoms constant throughout the day, whilst 10% had pain worse in the morning, 14% in the evening and 9% at bedtime. The majority of women could not identify a specific cause for symptoms, however, many regarded thrush, thrush treatments and stress as possible factors. 30% members believed that certain foods aggravated symptoms, whilst 70% noticed that symptoms were unrelated to food. Of the 135 women who were pre-menopausal 62% noticed symptoms worse around the time of a period. 4 women noticed pain worse at mid-cycle. Tables 7-10 outline the influence of symptoms on lifestyle and sexual activity. If symptoms stopped sex from happening altogether, 42% members remained physically close but avoided sexual contact, 20% avoided sexual intimacy altogether, 22% concentrated on partners¹ satisfaction and 6% had relationships as normal. For those women with a partner the majority had a sympathetic partner, however, 8 members had not told their partners and 11 cases partners had become hostile towards them and sexual relationships had ended When asked about the future, 35% remained optimistic about the future and that the pain would go at some stage, 36% felt optimistic but that they would have to live with the pain and 29% were not optimistic. Table 9: My symptoms Do not affect sexual intercourse for me 5% Sometimes prevent me from sexual intercourse 33% Completely prevent me from sexual intercourse 36% Cause discomfort, but do not prevent sexual intercourse 10% Don¹t know, I am not sexually active 16% RELIEF FROM SYMPTOMS The average number of creams used which had been prescribed by a doctor was 6 with the most being 25 used by one member over a period of years. Table 5 illustrates the benefits of heat, cold, sex and underwear on vulval symptoms. Treatments that benefited women with a diagnosis of vulval pain syndromes varied greatly and are detailed on tables 12,13,14. Table 10: With regards to sexual activity in the past I used to enjoy sexual intercourse 61% Intercourse has always been somewhat uncomfortable 22% I have been forced to have sexual intercourse against my will 6% I had unpleasant sexual experiences in my childhood 3% I think my past experiences may have caused some of the problems I have now 6% I think that my past sexual activity would be considered pretty normal 46% Table 11 Relief No change Worsen Heat (hot bath) 32% 35% 33% Cold (like cool compress) 54% 31% 15% Sex 3% 17% 80% Underwear 5% 51% 44% YOUR CARE TO DATE The average number of doctors members had visited prior to an accurate diagnosis was 4. One member had been to 15 doctors over a period of years! The type of doctor varied from GPs to hospital specialists (Table 15) Table 12: Best treatments identified by member for vulval pain syndromes and vulvodynia (no order) Complimentary treatments aloe Vera calendula cream geranium and lavender oil sweet almond oil teabags (tannic acid) hypercal Dr Bach rescue cream evening primrose oil tea tree oil calamine lotion vit E oil Local anesthetics xylocaine gel lignocaine gel Perinal dibucaine anethaine cream Emla cream Oral antidepressants Amitryptyline desipramine Dothiepin Oral antidepressants imipramine Nortryptyline Steroid creams lotriderm Betnovate Triamcinolone Hydrocortisone Propaderm Elocon ointment Eumovate Anti-thrush treatments Nystaform Diflucan Nizoral tabs Canestan Anti-thrush treatments Gynodaktarin Nystatin Itraconazale Emollients Diprobase Aveeno baths soaks Aqueous cream emulisderm bath lotion Sudocream zinc and castor oil Others lubricating gel Replens 0estogen cream Senselle calcium citrate trimethoprim (an antibiotic) Vagisil pimozide Scheriproct ointment piriton ibuprofen sheep¹s yogurt physio flexible cold pads tegretol Prozac olive oil cream acigel Dalacin cream vaseline progesterone suppositories Balneum plus morphine sulphate tablets Astroglide sultrin cream 27% women were satisfied with the care that they had received, however 73% women were dissatisfied with their care mainly as they were not taken seriously or received little information. 24% of members were receiving care within specialized vulval clinics Table 13: Vulval vestibulitis - top 4 best treatments Aloe vera Steroid creams (hydrocortisone, Trimovate,) Amitryptyline Local anaesthetic jelly YOU AND THE VULVAL PAIN SOCIETY The vast majority of you highly regarded the group and most found the information within the newsletters adequate enough to help understand information. For many 70% this information helped cope with pain. 79% even felt that the Society gave e hope for the future. Table 14: Vulvodynia - top 4 best treatments Amitryptyline Aloe Vera Nortryptyline Local anaesthetic jelly Table 15: Type of doctor giving correct diagnosis Dermatologist 28% Gynaecologist 30% Genito-Urinary Physician 19% General Practitioner 17% Pain clinic 5% Psychologist 1% DISCUSSION The questionnaire has raised several interesting issues. It is important to remember that all members are different and it is wrong to consider everyone in the group as the same. This is particularly relevant with regards to treatment. The mixture in the group is reflected in the age range. On the whole younger women with vulval pain had vulval vestibulitis and painful sex whereas older women had more constant pain and Dysaesthetic vulvodynia. It is often believed that childbirth can be associated with the development of symptoms of vulvodynia. In our survey around 10% noticed symptoms worse postnatally. The reasons for this remain unclear, but may be related to tissue damage following delivery or inappropriate stitches. Vulval pain can develop even after a caesarean section. This can happen as the body¹s oestrogen levels rapidly fall after delivery and oestrogen deficiency postnatally can cause vaginal dryness and painful sex. Overall, members were very health conscious with over half taking regular exercise. Regular exercise is a vital part of managing pain and this is crucial to controlling pain and trying to get back to normal. Sione Watts produced a factsheet on pain management that members might find helpful available from the VPS. The previous illnesses listed in Table 1 did not reveal any particular Œcommon¹ illness in women with vulval pain. Hysterectomy, prolapse repair and irritable bowel syndrome occur in women without vulval pain and were commonly reported in the survey. Interestingly, only 5 women declared a history of depression. Whether depression caused the pain or whether depression was as a result of pain remains unknown. Many doctors believe women with vulval pain are depressed, (which is understandable for some women because pain is pain!) but this survey questions the often held belief among doctors that depression and vulval pain often occur together. It was disappointing that despite the information we provide, 23% of women still did not have a diagnosis for their symptoms. This is a concern as some of the women had not seen a doctor and were self-treating. Having an accurate diagnosis is essential! If your doctor is unsure then he/she should consider referring you onto a specialist. Some women had lichen sclerosis and Fabia at the National Lichen Sclerosis Support Group (see addresses) continues to provide information to these women. The bulk of the group had a diagnosis of vulval pain syndromes (vulval vestibulitis and dysaesthetic vulvodynia). The features of these conditions are available on factsheets from the VPS. The diagnoses often fitted the symptoms pain and painful sex were the main issues. Very few women had itching only without pain. All these had lichen sclerosis or had not seen a doctor. Table 4 shows the serious implications of symptoms on members¹ lifestyles. Although the average length for member was 6 years, there were many with symptoms less than this. It is important to remember that many women who do get better are unlikely to rejoin the group and not therefore going to be included in the survey. Don¹t lose hope! Most used clean water to clean the vulval area. This is important to help reduce contact sensitivity to the vulval skin, which can make matters worse. Soaps, bubble baths and antiseptics can all potentially damage thin vulval skin. Aqueous cream can be used as a soap substitute. Remember so-called Œlo w allergy¹ soaps and shampoos can still irritate. Even though they are perfume-free, they can still harm the vulval skin through the preservatives which they contain. We are still no nearer to finding the exact cause of vulval pain, but this survey has suggested a variety of different causes (Table 5). The oxalate theory has been covered in this newsletter several times in the past. We asked as a part of the survey about the role of foods as a cause of pain. Surprisingly 30% noted that certain foods listed in table 6 aggravated symptoms. These were not necessarily high oxalate foods, but yeast-containing foods were reported as the commonest food to make symptoms worse. This is of interest and worthy of further study. With regards to treatment, there were no clear benefits from heat or cold application to the vulval area, although over half the respondent had more relief from a cold application. Table 12 contains a long list of Œbest¹ treatment for vulval pain syndromes. It is quite a long list and the treatments vary considerably! Complimentary treatments were commonly used by members and were as highly rated as the prescription based treatments. There were many prescription-based treatments used. Tri-cyclic antidepressants were one of the most popular treatments for its benefits in controlling pain centrally. Amitryptyline was the most common drug used which is a surprise because many other new tri-cyclics can be used with as much benefit and fewer side-effects e.g. Nortryptyline. Anti-thrush treatments and steroid creams all fared well, although one would still be very cautious in using them without the input of a doctor. Remember any creams will give benefit because of its emollient effect. Interestingly, nobody had had success with biofeedback therapy which probably reflects its poor availability in this country. Many of you will want to try these treatments. Good luck. Certainly the complimentary treatments may be worthwhile looking at. Beware of any cream or application that irritates and maybe prescription based could be discussed with your doctor. OVER TO YOUŠŠŠ Dear VPS..... I thought other members might benefit from my experience at the dentist¹s surgery yesterday. He asked me if I¹m taking any medications and I felt, for my own safety, that I should tell him I take 25mg amitryptyline daily. Had I not seen an article about low doses of anti-depressants being used to treat chronic headaches I would have been floundered when he asked my why I¹m taking it! It¹s bad enough having DV and there is no need to broadcast I it, like me, you have a ready answer. Maybe I¹m wrong, but I didn¹t think it important he should know the real reason. I just hope that I didn¹t blush! Incidentally, although it¹s effect has been very slow (I¹ve been on it for 9 months now) this drug does seem to be helping me (if nothing else it ensures a good night¹s sleep I go out like a light!!). It is not a miracle cure, but it¹s worth persevering. It was 2 months before I noticed any difference at all, then things remained static for another six months before it improved a little more. Perhaps if I stay on amitryptyline long enough, the problem will eventually resolve, I hope. Mrs. Dunning, Yorkshire PS. I still get headaches! Dear VPSŠ Can you let members know that if they want to hire biofeedback machines, they can at £30/month? I also have a copy of the paper on what is required in terms of daily exercise from the National Vulvodynia Association. Further details tel 01942 238259 or fax 01942498491 Anne Day, Wigan DMI Medical Ltd Unit 1, Rosebridge Court Ince Wigan WN13DP Dear VPSŠŠ I have only been recently diagnosed with vulval vestibulitis. Two small things that have greatly helped me are soaking in a luke warm bath with 5 tablespoons of bicarbonate of soda added to the bath water. This helps with burning or itching of the vulva. If lubrication is required for sexual intercourse, the most natural thing is pure vegetable oil. This has made sex once more a pleasure. It can be used in conjunction with the condom Avanti. The only disadvantage being the price at £2 a condom. But no doubt this will decrease, as this is new product. I was given this advice from the genito-urinary medicine clinic. These procedures in addition to the normal guidelines for vulval skin care have greatly helped me. J , Glasgow LIBRARY SERVICE If you are interested in receiving any of the information below please send cheque made payable to the Vulval Pain Society and send it to us at our PO box. The price includes the cost of postage and packaging. Due to limitations of stocks it may be necessary that you will have to wait for your order. Sorry! We only have one or two of each copy. Painful sex £2 Goldsmith A book which inspired us at the VPS. Outlines most causes of painful sex with good articles on vulval vestibulitis. Cystitis: How to combat attacks and prevent recurrence £2 Dr Caroline Shreeve This book explains what cystitis is, what causes it, how to recognize it and who it affects and why. As well as explaining how orthodox medicine can help, Dr Shreeve sets out a comprehensive self-help program, including Œemergency¹ treatment for sudden cystitis attacks and a longer term programme for avoiding further bouts. Her approach takes into account various complementary therapies, such as homeopathy, herbalism and diet. Coping with thrush £2 Caroline Clayton This book describes thrush and explains treatment, home remedies and advises how to prevent further attacks. There are also chapters on diets, self-help remedies and sex. Coping success fully with pain £2 Neville Shone This book is directed to pain in general, but the book does apply to vulval pain. It provides a practical guide to taking charge of pain and to handling many situations you once dealt with automatically, but which now seen daunting. The Chronic Pain Workout Book £3 Ellen Mohr Catalano & Kimeron Hardin This American book bring together the expertise of an eight-person team of medical doctors, psychologists, educators and therapists-specialists in all area of chronic pain management The Pain Relief Handbook £2 Dr Wells and Graham Nown As recommended by the Pain Society, this book has been written to help those who suffer from all types of chronic pain. Drawn from the ground-breaking work of the Walton pain Management Centre, it is the 'ultimate guide to coming to terms with, coping with and overcoming pain.' The Stress and Relaxation Handbook: A practical guide to self-help techniques Jane Madders £2 This book teaches numerous relaxation techniques which can help to counteract stress. There are illustrated exercises that can manage different types of pain and tension. Beat Stress From Within £3 s This package includes cassettes and books which is principally directed at stress management. The program claims to reduce stress, protect against stress related illness, sleep better and feel less irritable, anxious and tense. The Which? Guide to Complementary Medicine £2 Barbara Rowlands This book examines a wide range of established therapies, from acupuncture to yoga, looking at the experiences of those who have received such treatment and, at the same time, taking into account the views of the medical profession. As well as addressing many common consumer concerns, the book explains what you can do if things go wrong, and provides a glossary, bibliography and list of useful addresses. Stress Relief for Women £1 Janet A short book outlining types of stress management including aromatherapy, flower remedies, self-hypnosis and many more. Candida: The Natural Way £1 Simon This compact guide explains the latest treatments - conventional, complementary and alternative used to keep candida in balance. Escape From Pain £2 Oliver Gillie This book, published by Self-Help direct aims to provide the reader with details on the treatment of chronic pain in general. Cystitis £1 Kilmartin This book, written by a former sufferer outline treatments and preventative measure of this common problem. Natural Pain Relief £2 Jan Sadler This book focuses on the growing interst into alternative and natural treatments. Written by a women with chronic backache it is divided into different self-contained units, each one devoted to a specific aspect of pain relief. Vulval Vestibulitis Syndrome SAE only Dr Marinoff and Dr Vulvodynia SAE only Dr McKay Factual review articles on vulval pain written by experts in the field FACTSHEETS We have complied a few factsheets taken from previous newsletters simply outlining different aspects of vulval pain. If you would like a copy, please send a SAE to us and we will gladly forward then onto you. Factsheet 1: What to do with vulval pain Factsheet 2: Vulval vestibulitis: A cause of painful sex Factsheet 3: Dysaesthetic vulvodynia Factsheet 4: Vulval pain and oxalates: The theory Factsheet 5: Low oxalate diet sheets Factsheet 6: Vulval pain and sexual dysfunction Factsheet 7: How to set-up support group Factsheet 8: Medical literature reference list Factsheet 9: Vulval hygiene sheet Factsheet 10: Treatment with amitryptyline Factsheet 11: Cyclical vulvitis Factsheet 12: Urethral syndrome Factsheet 13: Vulval Intraepithelial Neoplasia Factsheet 13: Thrush: A brief guide to diagnosis and management SUPPORT GROUPS AND CONTACTS There are a number of support groups for women around the country. Here are the phone numbers of volunteer members who can be contacted SUFFOLK AREA Helen Thorpe, a member, is keen to develop contacts in the Suffolk area. You can write to her Helen Thorpe, 6 Bridgewood Road, Woodbridge, Suffolk, IP12 4HA LEEDS - Emma 0 (Emma also co-ordinates a support group for women with vulval pain in the Leeds area) SOUTHAMPTON AREA Meg Hart, a member, is hoping to start a group up in the Hampshire area. She can be contacted by post Mrs MC Hart, 13 Elliot Rise, Hedge End, Southampton, SO30 2RU. NOTTINGHAM AREA Contacts needed. Write to White, 24 Camomile Gardens, Hyson Green, Nottingham, NG7 5GB BRIGHTON - Do you live in the Brighton area? One of our member is interested in setting up a group. Please write to Jay , Flat 3, 23 Brunswick Road, Hove, East Sussex, BN3ID6 or ring G.March on 01273 465683. LONDON VP SUPPORT GROUP The London VP Support group is run by t. The group meets once a month in the all female environment of The Wheels Women¹s' Centre where they rent a room and chat about the latest issues relating to vulval pain. The immediate aim of the group is to provide a setting in which it is possible to talk about living with vulval pain on a confidential basis with fellow sufferers. The long-term aim is to take positive action towards raising awareness of this condition and eventually finding a cure. The group invites all women with this condition to join them and welcomes any new ideas. There is no need to make contact beforehand. Please simply turn up at The Wheel on the last Saturday of every month between 1 and 3 pm. The address is The Wheel, Wild Court, Off Kingsway, London WC2B 4AU. Tel: 0 Nearest tube : Holborn USEFUL ADDRESSES National Lichen Sclerosus Support Group, 2 Ivy House,Wantage Road, Great Shefford, Berkshire RG17 7DA Vulval Pain Foundation Post Office Draw 177 Graham, North Carolina 27253 Pain Concern UK PO Box 318 Canterbury Kent CT2 OGD National Vulvodynia Association PO Box 4491 Silver Spring land 20914-4491 USA Interstitial Cystitis Society CVS, 13 Hazelwood Road, Northampton. Websites www.vulvodynia.com www.VPS/vpsintro.htm The Vulval Pain Society aims to provide information and support to women with vulvodynia. Vulvodynia is defined as long-standing vulvar discomfort or pain, particularly that characterised by burning, stinging, irritation or rawness of the vulval area. It is diagnosed by a doctor when other causes of vulval pain such as active infection and skin diseases have been ruled out. Women who have vulval vestibulitis form a subgroup of vulvodynia and the society aims to support these women as well. We do not encourage you to self-diagnose your symptoms and would encourage you to work with your doctor (GP or specialist) to find the best treatment for you. Before you take advice from the VPS it is best that vulvodynia and vulval vestibulitis is diagnosed by a doctor familiar with the condition. The Vulval Pain Society can only give general advice to women. In all cases the Vulval Pain Society recommends that you consult a doctor regarding any course of treatment or medication. Any products mentioned in the Newsletter are not endorsed or recommended by the Vulval Pain Society. LOCAL SUPPORT LISTING Please fill in and return to the VPS if you wish to have contact with other women near you. Tick the box which applies to you. ú Please place my details on the county database so that my details below can be passed onto other women ú I have no objections for my name and address being published in the next newsletter ú I do not wish to have my details on the database, but would like to receive details of other women in my area. Name:_________________________ Address:____________________________________________________________________ __________________ County:________________________ Telno(optional)________________________________________________ Please return to VPS, POBox 514, Slough, Berkshire > > Reply-To: ukherbal-list > Date: Thu, 5 Jul 2001 17:03:43 +0100 > To: <ukherbal-list > > Subject: Fw: vulvodynia > > > vulvodynia > > > Dear all, > I have a 67 yr old lady patient with vulvodynia caused by antifungal treatment > resulting nerve damage 3yrs ago[GPs diagnosis.] being treated with > neurontin[Gabapentin] 400mg TID and co-proxamol .She also has mild Parkinsons > being treated with Sinemet, a dopamine precusor/dopa decarboxlase > inhibitor.The neurontin is not working and she is very tired and constipated > as a result of it.Her GP is willing to support her in seeking my help and will > assist in monitoring any drug herb interactions as he says other than giving > her spinal injections he canot help her. She has had acupunture.Emotional > upset makes it worse, home life stressful, exercise and enjoying herself with > her keep fit classes makes it beter,she says her husband is difficult to live > with but she does not appear depressed just fed up with the pain which is > burning and persitant making it difficult for her to sit down for more than a > few minutes.She is desperate can anyone help? > Has anyone tried using alpha lipoic acid for the pain of nerve damage? > Would a topical approach be the most successful and safe due to the danger of > interactions ?.She may be coming off the neurontin soon. > > Thanks > watson > > > Quote Link to comment Share on other sites More sharing options...
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