Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 I have been on Neurontin for over two years, and personally I don’t think it helps me at all, but my doctor wants me to stay on it. I have been getting trigger point injections in the vaginal area and they have helped a lot. There are other medications you can try too – the secret is don’t give up, because what doesn’t work for one – does work for another. Neurontin takes at least a month or longer to work, and you need to keep increasing the dosage amount - I take 3600mg a day. Just in case you didn’t see the article I posted awhile ago, I reposted it below so at least you can get some more information on Vulvodynia. nne Vulvodynia: Diagnosis and Treatment by Tori Hudson, ND Vulvodynia or vulvar pain syndrome is a multifactoral clinical syndrome of vulvar pain, sexual dysfunction, and psychological distress. Recognizing the four specific subtypes of vulvodynia is important in the management approach. The most common four subtypes are • vulvar vestibulitis syndrome, • cyclic vulvovaginitis, • dysesthetic vulvodynia, and • vulvar dermatoses. Simple clinical guidelines can be developed to improve the evaluation and treatment of these often long-suffering patients. Vulvodynia is different from itching or vulvar pruritus. Vulvodynia actually precludes itching because the burning and pain cause an intolerance to scratching. Over the years, the terminology used to describe vulvodynia has varied. The term vulvodynia has now been recommended by the International Society for the Study of Vulvar Disease (ISSVD) to describe any vulvar pain, regardless of etiology. Vulvar pain usually has an acute onset. The onset can be associated with vaginitis (yeast, bacterial), changes in sexual activity (new sexual partner), or medical procedures on the vulva (cryotherapy, laser). In most cases, the vulvar pain then becomes a chronic problem varying in length from months to years. The intensity of the pain can vary from mild to disabling. It can be burning, stinging, irritating or raw. Most women with vulvodynia have been to many physicians either with inaccurate diagnoses or unsatisfactory treatment. Many women have been left feeling especially frustrated and at times mistreated because they have been told that their problem is purely psychological and there is nothing physically wrong with them. Because of the dramatic impact on their lives these women continue to seek help, and can become increasingly fearful and anxious about cancer or sexually transmitted diseases. The incidence of vulvodynia is not known but it is clearly more common than is generally thought. In a general gynecological practice the prevalence can be as high as 15% when actively looked for.1 Characteristics of the patients with vulvodynia are nonspecific. The age distribution ranges from mid-20s to late 60s. Their Ob/Gyn history is unremarkable. They generally do not have other chronic health problems, and rarely have a history of sexually transmitted diseases. Sexual promiscuity is generally not a factor in these cases. Often, women with vulvodynia do report depression, but it is just as easily a result of the condition as it is a cause. The pain reported can be in the general vulvar area, but is typically located in the vulvar vestibulum. The vestibule comprises the area between the labia minora and the hymenal ring, anteriorly from the frenulum of the clitoris, and posteriorly from the fourchette to the vaginal introitus. The urethra, Skenes glands, Bartholins glands and the minor vestibular glands are all located in the vulvar vestibule. Only minimal findings are detected on the physical examination and most of the time there are not physical findings at all. The cotton tip applicator is used to determine the location of the pain. Touching the vestibulum lightly with a moist cotton-tipped swab reveals a sharp pain most often in the posterior vestibule, anterior vestibule or both. Occasionally red spots of inflammation can be detected at 5 oclock and 7 oclock or in a U-shaped area at the posterior fourchette. Classifications of Vulvodynia Vulvar Dermatoses Vulvar dermatoses can often cause both itching or pain and can be acute or chronic. Dermatoses are also dissimilar to other causes of vulvodynia because there can be physical signs of erythema, erosion or blisters. A partial list of vulvar dermatoses includes; psoriasis, seborrheic dermatitis, tinea cruris, contact dermatitis, lichen simplex chronicus, lichen planus, lichen sclerosus, pemphigus, and erythema multiforme. Many dermatoses can be difficult to diagnose and may require a biopsy for a definitive diagnosis. Cyclic Vulvovaginitis Cyclic vulvovaginitis (CVV) is probably the most common cause of vulvodynia. The pain is typically cyclic and specifically worse during the luteal phase of the cycle. Symptoms are characteristically aggravated by vaginal sexual activity with the pain being usually worse the next day.2,3 CVV is thought to be caused by a hypersensitivity reaction to Candida antigen. If Candida cannot be detected during the symptomatic phase by culture, due to the bodys immune response, then culture specimens during an asymptomatic phase. Conventional treatments include antimycotics for temporary relief, but symptoms recur soon after the treatment. Boric acid suppositories twice daily for 4 weeks and then once per day for 5 days during the menses only, for 4 more months is generally more successful for chronic yeast vaginitis than conventional antifungal agents. Boric acid suppositories were effective in curing 98% of the patients who had previously failed to respond to the most commonly used antifungal agents.4 However, many women do not tolerate the boric acid that leaks out of the vagina and further irritates the tissue. Lanolin or vitamin E oil or petroleum jelly or some other ointment (calendula) can be used to coat the vulvar tissue at the posterior fourchette where the irritation would be greatest. Other alternative treatments include local treatments such as lactobacillus suppositories, tea tree suppositories, garlic suppositories, herbal combination suppositories or douches (berberis hydrastis, usnea); systemic immune support (A, C, E, Zn, Glycyrrhiza glabra, Allium sativum, Hydrastis canadensis). Swabbing the vagina with genitian violet has been a longstanding specific treatment for candida, as has iodine douching (one part iodine in 100 parts water, twice daily for 14 days). Reinoculation from the anus requires attention to hygiene and possibly an approach that also addresses the gastrointestinal tract. Dietary considerations include a diet low in simple carbohydrates and refined foods, low in alcohol, and low in fats. Vulvar Vestibulitis Syndrome Vulvar vestibulitis syndrome (VVS) is characterized by dyspareunia, severe point tenderness on touch (positive cotton swab test), and erythema. The etiology of VVS is unknown. Some cases are aggravated by yeast vaginitis. Other suspected causes include chemical sensitivities, other irritants, a history of laser or cryotherapy, and allergic drug reactions. Some studies have suggested that VVS may be associated with human papillomavirus (HPV).5,6 Treatment of VVS is difficult and can require great patience and persistence on the part of both patient and practitioner. Conventional treatment is often fraught with overtreatment using antimicrobials and destructive or ablative therapies for suspected HPV. Conventional treatment can escalate to include interferon injections and vestibulectomy for severe incapacitating cases. The most promising alternative treatment that I have experienced in my practice is the use of calcium citrate. In patients whose urine shows evidence of excess oxalate, epithelial reactions similar to those found in vulvodynia are observed. Women have periodic hyperoxaluria and pH elevations related to the symptoms of vulvar pain. 1000mg of calcium citrate daily, in divided doses, is given to modify the oxalate crystalluria. A low oxalate diet is an additional cornerstone to managing these cases.7 In addition, I can cite cases in my private practice where an eclectic treatment plan of a topical ointment (vitamin A, tincture of thuja and lomatium isolate), oral beta carotene (75,000IU to 150,000/day), eliminating food intolerances, and a constitutional homeopathic remedy, have yielded anywhere from 50% improvement to 100% improvement. Unfortunately, I can also cite cases where there was only minimal improvement. I have heard anecdotal reports using elaborate chemical desensitizing methods and dramatic improvements, but I have not personally investigated these cases. Psychological intervention must always be considered for assistance in dealing with the illness, and perhaps therapeutic intervention can then allow the immune system to adequately address the chronic syndrome. Dysesthetic Vulvodynia This subtype of vulvodynia is more common among older women who are either perimenopausal or postmenopausal. Patients have constant noncyclic vulvar or perineal discomfort. These women have less dyspareunia and less point tenderness than the women with VVS. No significant changes are observed on the physical examination except diffuse hyperaesthesia which occurs on a wider area compared to VVS. Sharp pain can also be elicited with light touch. The hyperaesthesia is thought to be a result of an altered sense of cutaneous perception. A neurological basis is probably the explanation for the nonspecific burning. The sensation mimics the neuralgia associated with herpes. Urethral or rectal discomfort is often associated with their vulvar pain. Conventional medicine often prescribes tricyclic antidepressants8 for dysesthetic vulvodynia. Side effects are a common problem with tricyclics, and occur in up to half of the patients. Theoretical nutritional and botanical alternatives for dysesthetic vulvodynia include Folic acid, B12, Piper methysticum (kava-kava), Ginkgo biloba, Hypericum perforatum (St. s Wort). Physical Therapy for Vulvar Pain The use of physical therapy to relieve vulvar pain should not be overlooked. Spasm of the inner thigh muscles or hip muscles can be a result of guarding against the pain of weight resting directly on vulvar skin while sitting. There are specific devices for removing pressure from the vulvar area when sitting. Manual therapy techniques can also be used to relieve pain by releasing severe muscle spasms. Trigger points in the pelvic floor muscles from fibromyalgia can refer pain to the vulvar skin and the vagina. Trigger point therapy and pelvic floor muscle strengthening and relaxation can also relieve pelvic floor muscle spasms. Vulvar pain syndromes provoke psychological as well as physical distress. Sexual relationships become seriously strained in women with vulvodynia. Women tend to feel defective, less womanly, less sexually attractive ashamed and embarrassed. Dealing with spouses and partners who are having difficulty coping is an additional stress. Anxiety and depression set in with unsatisfactory visits to their health care practitioners and unsatisfactory results. Hopelessness can become the greater illness but practitioners should be cautioned against being overly optimistic in encouraging them to try another promising treatment. If it fails, it further escalates the hopelessness. Knowledge of the specific subsets of vulvodynia is extremely important in improving the diagnosis and treatment of this complex multifactoral syndrome. Simple guidelines and recommendations augment the evaluation and management.9 References 1. Goetsch MF. Vulvar vestibulitis: Prevalence and historic features in a general gynecologic practice population. Am J Obstet Gynecol 1991; 164:1609-16. 2. McKay M. Vulvodynia: a multifactorial clinical problem. Arch Dermatol 1989; 125. 3. McKay M. Subsets of vulvodynia. J Reprod Med 1988; 33:695-8. 4. Jovanovic R, Congema E, Nguyen H. Antifungal Agents vs. Boric Acid for Treating Chronic Mycotic Vulvovaginitis J Reprod Med 199;36:593-597. 5. MLC, Marinoff SC. Association of human papillomavirus with vulvodynia and the vulvar vestibulitis syndrome. J Reprod Med 1988; 33:533-7. 6. Umpierre SA, Kaufman RH, Adam E, Woods KV, Adler-Storz K. Human papillomavirus DNA in tissue biopsy specimens of vulvar vestibulitis patients treated with interferon. Obstet Gynecol 1991; 78:693-5. 7. Sollomons C, Melmed M, Heitler S. Calcium Citrate for Vulvar Vestibulitis. J Reprod Med 1991; 36:879-882. 8. McKay M. Dysesthetic (essential) vulvodynia. Treatment with amitriptyline. J Reprod Med 1993; 38:9-13. 9. Paavonen J. Diagnosis and Treatment of Vulvodynia. Ann Med 27:175-181, 1995. Resources The Vulvar Pain Foundation, P.O. Drawer 177, Graham, North Carolina 27253; . From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of jen9952 Sent: Saturday, May 10, 2008 6:20 PM To: VulvarDisorders Subject: Vulvodynia Hi I am new to this site, I have been suffering with vulvodynia for over a year now, it gets so bad that I have to sit on ice and take some Darvocet, I just started taking Neurontin and I have not felt any difference yet can any one tell me if they had any luck with Neurontin and how long it takes to work, I am sooo depressed about this some days I just lay on the couch and cry....so please any advice would be greatly appreciated...thanks Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2008 Report Share Posted May 11, 2008 > > I have been on Neurontin for over two years, and personally I don't think it > helps me at all, but my doctor wants me to stay on it. I have been getting > trigger point injections in the vaginal area and they have helped a lot. > There are other medications you can try too - the secret is don't give up, > because what doesn't work for one - does work for another. Neurontin takes > at least a month or longer to work, and you need to keep increasing the > dosage amount - I take 3600mg a day. Just in case you didn't see the article > I posted awhile ago, I reposted it below so at least you can get some more > information on Vulvodynia. > > nne > > > > Vulvodynia: Diagnosis and Treatment > > by Tori Hudson, ND > > > > Vulvodynia or vulvar pain syndrome is a multifactoral clinical syndrome of > vulvar pain, sexual dysfunction, and psychological distress. Recognizing the > four specific subtypes of vulvodynia is important in the management > approach. > > > > The most common four subtypes are > > . vulvar vestibulitis syndrome, > > . cyclic vulvovaginitis, > > . dysesthetic vulvodynia, and > > . vulvar dermatoses. > > > > Simple clinical guidelines can be developed to improve the evaluation and > treatment of these often long-suffering patients. > > > > Vulvodynia is different from itching or vulvar pruritus. Vulvodynia actually > precludes itching because the burning and pain cause an intolerance to > scratching. > > > > Over the years, the terminology used to describe vulvodynia has varied. > > > > The term vulvodynia has now been recommended by the International Society > for the Study of Vulvar Disease (ISSVD) to describe any vulvar pain, > regardless of etiology. > > > > Vulvar pain usually has an acute onset. > > > > The onset can be associated with vaginitis (yeast, bacterial), changes in > sexual activity (new sexual partner), or medical procedures on the vulva > (cryotherapy, laser). In most cases, the vulvar pain then becomes a chronic > problem varying in length from months to years. The intensity of the pain > can vary from mild to disabling. > > > > It can be burning, stinging, irritating or raw. > > > > Most women with vulvodynia have been to many physicians either with > inaccurate diagnoses or unsatisfactory treatment. Many women have been left > feeling especially frustrated and at times mistreated because they have been > told that their problem is purely psychological and there is nothing > physically wrong with them. Because of the dramatic impact on their lives > these women continue to seek help, and can become increasingly fearful and > anxious about cancer or sexually transmitted diseases. > > > > The incidence of vulvodynia is not known but it is clearly more common than > is generally thought. In a general gynecological practice the prevalence can > be as high as 15% when actively looked for.1 Characteristics of the patients > with vulvodynia are nonspecific. The age distribution ranges from mid-20s to > late 60s. Their Ob/Gyn history is unremarkable. They generally do not have > other chronic health problems, and rarely have a history of sexually > transmitted diseases. Sexual promiscuity is generally not a factor in these > cases. Often, women with vulvodynia do report depression, but it is just as > easily a result of the condition as it is a cause. > > > > The pain reported can be in the general vulvar area, but is typically > located in the vulvar vestibulum. > > > > The vestibule comprises the area between the labia minora and the hymenal > ring, anteriorly from the frenulum of the clitoris, and posteriorly from the > fourchette to the vaginal introitus. The urethra, Skenes glands, Bartholins > glands and the minor vestibular glands are all located in the vulvar > vestibule. > > > > Only minimal findings are detected on the physical examination and most of > the time there are not physical findings at all. The cotton tip applicator > is used to determine the location of the pain. Touching the vestibulum > lightly with a moist cotton-tipped swab reveals a sharp pain most often in > the posterior vestibule, anterior vestibule or both. Occasionally red spots > of inflammation can be detected at 5 oclock and 7 oclock or in a U- shaped > area at the posterior fourchette. > > > > Classifications of Vulvodynia > > > > Vulvar Dermatoses > > > > Vulvar dermatoses can often cause both itching or pain and can be acute or > chronic. Dermatoses are also dissimilar to other causes of vulvodynia > because there can be physical signs of erythema, erosion or blisters. > > > > A partial list of vulvar dermatoses includes; psoriasis, seborrheic > dermatitis, tinea cruris, contact dermatitis, lichen simplex chronicus, > lichen planus, lichen sclerosus, pemphigus, and erythema multiforme. > > > > Many dermatoses can be difficult to diagnose and may require a biopsy for a > definitive diagnosis. > > > > Cyclic Vulvovaginitis > > > > Cyclic vulvovaginitis (CVV) is probably the most common cause of vulvodynia. > The pain is typically cyclic and specifically worse during the luteal phase > of the cycle. Symptoms are characteristically aggravated by vaginal sexual > activity with the pain being usually worse the next day.2,3 CVV is thought > to be caused by a hypersensitivity reaction to Candida antigen. > > If Candida cannot be detected during the symptomatic phase by culture, due > to the bodys immune response, then culture specimens during an asymptomatic > phase. > > > > Conventional treatments include antimycotics for temporary relief, but > symptoms recur soon after the treatment. Boric acid suppositories twice > daily for 4 weeks and then once per day for 5 days during the menses only, > for 4 more months is generally more successful for chronic yeast vaginitis > than conventional antifungal agents. Boric acid suppositories were effective > in curing 98% of the patients who had previously failed to respond to the > most commonly used antifungal agents.4 However, many women do not tolerate > the boric acid that leaks out of the vagina and further irritates the > tissue. > > > > Lanolin or vitamin E oil or petroleum jelly or some other ointment > (calendula) can be used to coat the vulvar tissue at the posterior > fourchette where the irritation would be greatest. Other alternative > treatments include local treatments such as lactobacillus suppositories, tea > tree suppositories, garlic suppositories, herbal combination suppositories > or douches (berberis hydrastis, usnea); systemic immune support (A, C, E, > Zn, Glycyrrhiza glabra, Allium sativum, Hydrastis canadensis). > > > > Swabbing the vagina with genitian violet has been a longstanding specific > treatment for candida, as has iodine douching (one part iodine in 100 parts > water, twice daily for 14 days). > > > > Reinoculation from the anus requires attention to hygiene and possibly an > approach that also addresses the gastrointestinal tract. Dietary > considerations include a diet low in simple carbohydrates and refined foods, > low in alcohol, and low in fats. > > > > Vulvar Vestibulitis Syndrome > > > > Vulvar vestibulitis syndrome (VVS) is characterized by dyspareunia, severe > point tenderness on touch (positive cotton swab test), and erythema. The > etiology of VVS is unknown. Some cases are aggravated by yeast vaginitis. > Other suspected causes include chemical sensitivities, other irritants, a > history of laser or cryotherapy, and allergic drug reactions. Some studies > have suggested that VVS may be associated with human papillomavirus > (HPV).5,6 > > > > Treatment of VVS is difficult and can require great patience and persistence > on the part of both patient and practitioner. Conventional treatment is > often fraught with overtreatment using antimicrobials and destructive or > ablative therapies for suspected HPV. Conventional treatment can escalate to > include interferon injections and vestibulectomy for severe incapacitating > cases. The most promising alternative treatment that I have experienced in > my practice is the use of calcium citrate. > > > > In patients whose urine shows evidence of excess oxalate, epithelial > reactions similar to those found in vulvodynia are observed. Women have > periodic hyperoxaluria and pH elevations related to the symptoms of vulvar > pain. 1000mg of calcium citrate daily, in divided doses, is given to modify > the oxalate crystalluria. A low oxalate diet is an additional cornerstone to > managing these cases.7 > > > > In addition, I can cite cases in my private practice where an eclectic > treatment plan of a topical ointment (vitamin A, tincture of thuja and > lomatium isolate), oral beta carotene (75,000IU to 150,000/day), eliminating > food intolerances, and a constitutional homeopathic remedy, have yielded > anywhere from 50% improvement to 100% improvement. Unfortunately, I can also > cite cases where there was only minimal improvement. > > > > I have heard anecdotal reports using elaborate chemical desensitizing > methods and dramatic improvements, but I have not personally investigated > these cases. Psychological intervention must always be considered for > assistance in dealing with the illness, and perhaps therapeutic intervention > can then allow the immune system to adequately address the chronic syndrome. > > > > > Dysesthetic Vulvodynia > > > > This subtype of vulvodynia is more common among older women who are either > perimenopausal or postmenopausal. Patients have constant noncyclic vulvar or > perineal discomfort. These women have less dyspareunia and less point > tenderness than the women with VVS. No significant changes are observed on > the physical examination except diffuse hyperaesthesia which occurs on a > wider area compared to VVS. > > > > Sharp pain can also be elicited with light touch. The hyperaesthesia is > thought to be a result of an altered sense of cutaneous perception. A > neurological basis is probably the explanation for the nonspecific burning. > The sensation mimics the neuralgia associated with herpes. Urethral or > rectal discomfort is often associated with their vulvar pain. > > > > Conventional medicine often prescribes tricyclic antidepressants8 for > dysesthetic vulvodynia. Side effects are a common problem with tricyclics, > and occur in up to half of the patients. Theoretical nutritional and > botanical alternatives for dysesthetic vulvodynia include Folic acid, B12, > Piper methysticum (kava-kava), Ginkgo biloba, Hypericum perforatum (St. > s Wort). > > > > Physical Therapy for Vulvar Pain > > > > The use of physical therapy to relieve vulvar pain should not be overlooked. > Spasm of the inner thigh muscles or hip muscles can be a result of guarding > against the pain of weight resting directly on vulvar skin while sitting. > There are specific devices for removing pressure from the vulvar area when > sitting. Manual therapy techniques can also be used to relieve pain by > releasing severe muscle spasms. Trigger points in the pelvic floor muscles > from fibromyalgia can refer pain to the vulvar skin and the vagina. Trigger > point therapy and pelvic floor muscle strengthening and relaxation can also > relieve pelvic floor muscle spasms. > > > > Vulvar pain syndromes provoke psychological as well as physical distress. > Sexual relationships become seriously strained in women with vulvodynia. > Women tend to feel defective, less womanly, less sexually attractive ashamed > and embarrassed. Dealing with spouses and partners who are having difficulty > coping is an additional stress. Anxiety and depression set in with > unsatisfactory visits to their health care practitioners and unsatisfactory > results. Hopelessness can become the greater illness but practitioners > should be cautioned against being overly optimistic in encouraging them to > try another promising treatment. If it fails, it further escalates the > hopelessness. > > > > Knowledge of the specific subsets of vulvodynia is extremely important in > improving the diagnosis and treatment of this complex multifactoral > syndrome. Simple guidelines and recommendations augment the evaluation and > management.9 > > > > > > References > > > > 1. Goetsch MF. Vulvar vestibulitis: Prevalence and historic features in a > general gynecologic practice population. Am J Obstet Gynecol 1991; > 164:1609-16. > > > > 2. McKay M. Vulvodynia: a multifactorial clinical problem. Arch Dermatol > 1989; 125. > > > > 3. McKay M. Subsets of vulvodynia. J Reprod Med 1988; 33:695-8. > > > > 4. Jovanovic R, Congema E, Nguyen H. Antifungal Agents vs. Boric Acid for > Treating Chronic Mycotic Vulvovaginitis J Reprod Med 199;36:593- 597. > > > > 5. MLC, Marinoff SC. Association of human papillomavirus with > vulvodynia and the vulvar vestibulitis syndrome. J Reprod Med 1988; > 33:533-7. > > > > 6. Umpierre SA, Kaufman RH, Adam E, Woods KV, Adler-Storz K. Human > papillomavirus DNA in tissue biopsy specimens of vulvar vestibulitis > patients treated with interferon. Obstet Gynecol 1991; 78:693-5. > > > > 7. Sollomons C, Melmed M, Heitler S. Calcium Citrate for Vulvar > Vestibulitis. J Reprod Med 1991; 36:879-882. > > > > 8. McKay M. Dysesthetic (essential) vulvodynia. Treatment with > amitriptyline. J Reprod Med 1993; 38:9-13. > > > > 9. Paavonen J. Diagnosis and Treatment of Vulvodynia. Ann Med 27:175-181, > 1995. Resources The Vulvar Pain Foundation, P.O. Drawer 177, Graham, North > Carolina 27253; . > > > > > > > > > > > > From: VulvarDisorders > [mailto:VulvarDisorders ] On Behalf Of jen9952 > Sent: Saturday, May 10, 2008 6:20 PM > To: VulvarDisorders > Subject: Vulvodynia > > > > Hi I am new to this site, I have been suffering with vulvodynia for > over a year now, it gets so bad that I have to sit on ice and take some > Darvocet, I just started taking Neurontin and I have not felt any > difference yet can any one tell me if they had any luck with Neurontin > and how long it takes to work, I am sooo depressed about this some days > I just lay on the couch and cry....so please any advice would be > greatly appreciated...thanks Jen > nne, Thank you for the infornation??? what kind of injections are you recieving???? and what type of vulvodynia are you diagnosed with?? Thank you Jen Quote Link to comment Share on other sites More sharing options...
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