RSD and Vulvodynia(Can RSD affect the genitals??)

The 1999-2000
L.A. Pain Clinic Guide:
VULVODYNIA
Arthritis
Back Pain
Cancer Pain
Carpal Tunnel Syndrome
Diabetes Pain
HIV/AIDS Pain
Interstitial Cystitis
Fibromyalgia Pain
Labor Pain
Menstrual Pain
Migraine Headache
Reflex Sympathetic Dystrophy
Sickle Cell Disease
Shingles/Post-herpetic Neuralgia
Tension Headache
Trigeminal Neuralgia
Vulvodynia



Vulvodynia is a medical term that means 'painful vulva'. It feels like a wicked yeast infection - only worse. Burning, itching and pain are experienced in the skin of the vaginal entryway and sometimes the labia or clitoris. The term can cover a wide variety of vulvar pain syndromes including various infections and skin disorders. Some cases of vulvodynia may be due to compression or disease of the pudendal nerve, one of the main nerves that relays sensation to and from the genitals. The term is also used to refer to vestibulitis or Vulvar Vestibulitis Syndrome (VVS), which is an inflammation of the vestibule, or opening into the vagina and the tissues immediately around the vaginal opening.

This condition is sometimes also called 'vestibular adenitis'. Symptoms of vulvodynia or vestibulitis can range in severity from mild to severe. In mild cases, a burning or stinging sensation is noted during intercourse or when tampons are inserted. Upon touching the area with a cotton swab, pain is felt when the hymen and inner vaginal lips are touched. There also may be redness and swelling. In severe cases, the pain can be agonizing and much of the vulvar can be reddened, swollen and very inflamed. Often the edges of the inner vaginal lips are very sensitive and the pain so severe that it makes walking difficult.

There may be a constant itching or stinging sensation in the grooves between the large and small vaginal lips. Wearing underwear may be very uncomfortable as the slightest touch to the area may result in excruciating pain. Other signs include pain or discomfort upon touching the pubic hair, over the vulvar skin or in certain spots. These sensations may extend to the rectal area or skin of the perineum. The clitoris can become involved, becoming painful or hypersensitive and there may be shooting pains from the clitoris up the abdomen. Sexual intercourse and urination may be very painful. Sometimes vestibulitis may be part of bladder and/or urethral inflammation as seen in the interstitial cystitis or urethral syndrome. The lining of both vagina and bladder arise from the same tissue during fetal development; thus when one becomes inflamed, the inflammation may spread to the adjoined areas. There may be an association between vestibulitis and chronic candida infection, human papiloma and herpes simplex virus infection. Overuse of topical corticosteroid creams to treat vulvar itching may cause thinning and sloughing of the top layers of skin. Vestibulitis may occur with the use of the acne drug Acutane or the anti-cancer drug fluorouracil. There may also be an association with high levels of urine oxalate and with the fibromyalgia syndrome, a muscle pain disorder.


Keep the vulvar clean and dry. Rinsing A special bidet that removes the need to wipe with toilet paper and which delivers both a rinse and an air dry, is available from Lubidet USA (800 582-4338 or 303 757-3031) with plain or distilled water several times a day may be helpful. Perfumed or even plain soaps may aggravate the irritation. Natural glycerin soap may be helpful as it has no residual drying effects. A hand held shower massager is preferable to an overhead nozzle as it makes it much easier to wash away any soap residue that remains after washing. Washing the vulvar area with distilled water instead of tap water may help avoid irritation from chlorine. After washing a hand held blow dryer (on cool) may be used to further dry the skin prior to applying corn starch. Carefully avoid all potential irritants in your underwear, such as laundry soaps and bleaches. You may use a mild non-perfumed soap such as Castile soap and run twice through the rinse cycle. Or you may do without underwear all together. If you must wear pantyhose or stockings for work, wear brands with a cotton crotch over the all-cotton underwear. Then slit the pantyhose crotch to relieve binding. or you may use old fashioned garter belts and stockings. A product called Scantihose (L & l Hosiery - 800 401-LACE) was designed to avoid bumps and ridges in clothing, and comes completely up the leg, unlike older stockings that can't be worn with shorter skirts. To relieve pressure on the vulvar area when sitting you may use a pressure relief cushion such as Isch-Dish (Embracing Concepts - 800 962-5542). If you have pain with urination, you may apply A & D Ointment, Desitin or Vaseline to soothe and protect the inflamed area. Another way to help painful urination is to pour a cup of water while urinating: this dilutes the urine and helps to wash away any irritating residue. You may also sit slightly forward when urinating as this directs the stream straight down and it does not touch the skin.


In a few people vulvodynia clears up on its own after 6-12 months. Vulvar pain that is due to infection e.g. ureaplasma, candida or strep will respond to the appropriate treatment. Topical estrogen creams e.g. Estrace (0.01% Estradiol) may provide relief. Estrace thickens or toughens the skin, and increases blood supply. It may help you even if you have not reached menopause or do not have estrogen deficiency. If you find vaginal creams painful (possibly from the additives such as alcohol or parabens), your physician may mix 5-10% solution in a petroleum gel base or mineral oil instead of using the standard solutions., Compresses made from prophyllin powder may provide soothing relief. Medications that are used in treating the pain include antidepressants like Elavil or Paxil, anticonvulsant medication e.g. Tegretol, Dilantin or Neurontin and strong pain relievers like codeine or Ultram. Injection of immune enhancing drugs (e.g. interferon alpha-2b) into the vulvar area that is infected with the human papilloma virus may provide relief of pain and other symptoms. In addition to medications, heat destruction (thermocoagulation), cold destruction (cryo-neurolysis) or nerve block of the pudendal nerve with local anesthetic, steroids or glycerol may provide good long-term relief. A side effect of these procedures may be prolonged numbness of the vulvar. Before any procedure your doctor should explain the risks and benefits to you. Biofeedback and pelvic muscle exercises involving relaxation and muscle strengthening may be helpful. Vulvar pain due to skin conditions such as dermatitis, lichen sclerosis may be relieved with topical corticosteroids. Reducing the amount of oxalate in your diet may be helpful. These include tea, spinach, beer, berry juices, baked beans in tomato sauce, peanuts, peanut butter creams, pecans, soybean curd, concord grapes e.t.c. In addition, do not take more than 250 mg of Vitamin C a day (because it is a chemical precursor of calcium oxalate). Only drink small amounts of milk or dairy products to reduce the amount of calcium oxalate in the body. our physician may prescribe calcium citrate to neutralize high blood or urine levels of oxalate. If intercourse is painful, you can apply xylocaine jelly to numb the sore areas. During your menstrual period, if you cannot tolerate a tampon string, you may curt off the string prior to insertion. If menstrual pads are too painful, you may use rolls of absorbent cotton. Soothing relief may be obtained by applying warm soaked tea bags to the area. This can be done by placing the tea bags on menstrual pads to hold them in place or you can take a sitz bath in which tea bags have been soaked. Surgical treatment may include removal of painful areas such as the vulvar (bartholin's) glands, excision of the pudendal nerve and/ or laser therapy to destroy underlying vulvar blood vessels. Psychological counseling by a therapist experienced in chronic illness can help in coping with this disorder.

Call your Doctor if your pain is severe or if you have a reaction to your medications.

National Organization: National Vulvodynia Association, P.O. Box 4491, Silver Spring, Maryland 20914-4491. Phone: 301 299-0775. The Vulvar Pain Foundation, Post Office Drawer 177, Graham, North Carolina 27253. Phone: 910 226-0704.

Note: All medications mentioned on this site--including, specialty compounded ointments such as Capsaicin, Gabapentin, Ketamine, Vitamin E--may be ordered directly from L.A. Pain Clinic.

Well that is all the information I could find and I hope it is helpful to some of us. If anyone would like to comment on this discussion just add your comments or experiences to this post. AS always I would love to hear your input.

Love,

Robyn

Reply
Recommend Delete Message 1 of 1 in Discussion

From: byrd45 (Original Message) Sent: 10/9/2006 6:08 PM
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 5/24/2006 10:35 AM
Hi Everyone,
This week I am hoping that our discussion won't offend anyone. I figure that we are all adults here and that it is too important not to post this. I researched this information after a member had asked me a personal question regarding whether I could find information on RSD and it spreading to the genitals. Just like any other part of the body it is possible and can happen. I want to get this information out there so if someone out there is dealing with this and is embarassed or scared they can have some information and hopefully a groundwork towards dealing with talking to their doctor if they haven't already. Really it isn't surprising to me that it can spread there after all our nerves send messages to each other so it stands to reason that just like an arm, hand, leg, or other body part being affected, the genitals can be, and even the anus can be affected as well. I am not saying it is everyone's experience with RSD, but it can happen. If you are having extreme burning and pain in the area, and can't explain why this could be happening I would definitely mention it to your doctor. Here is the information I found on the subject. They didn't have anything on spread of RSD into the genitals in men, but I wouldn't be surprised if it can happen in some cases there as well. My doctor who treats my RSD told me she has a patient who has anal RSD it is horribly painful, with burning just like we get in our other body parts, but inside the anus and it makes it very hard to walk or move around. It is seen rarely, but can happen in some cases. I can honestly say I was shocked when I found this out. I never knew that it could spread like that. Here is what I did find..........

Vulvodynia, also known as vulvar dysesthesia, literally means pain, or an unpleasant altered sensation, in the vulva. It is characterized by itching, burning, stinging or stabbing in the area around the opening of the vagina. Pain can be unprovoked, varying from constant to intermittent, or occur only on provocation such as attempted vaginal penetration with sexual intercourse, a condition also known as vestibulodynia, previously known as vulvar vestibulitis syndrome.

Symptoms may be highly localized at certain points or may be quite diffuse and may range from mildly irritating to completely disabling. While a distinct sore, or area of redness may be visible, often the vulva and the vagina show no abnormalities or infections on gynecological and/or dermatological evaluation. Unfortunately, many doctors are unaware that these conditions even exist, and may mistakenly suggest to patients that this is a psychological condition. It is common for women with vulvodynia to suffer for many years and see many doctors before being correctly diagnosed.

This is what Dr. Hooshmand has to say about RSD and Vulvodynia..........

RSD PUZZLE #127
CRPS and Vulvodynia



Many thanks for your letter and questions regarding CRPS and Vulvodynia.

Vulvodynia is the most intractable and most severe pain in medicine. In this condition the sympathetic system is the sole driving mode of the severe intractable pain. Because of the involvement of the genital organ, the disease involves the entire region. This is the reason for the new terminology calling RSD "complex regional pain syndrome-CRPS."

The involvement of the pelvic area with the sympathetic dysfunction is manifested by the following features.

Spread of pain to the abdominal region, lumbar spine, and lower extremities as well as spread of the pain upward through the chain of sympathetic ganglia to the cervical spine regions causing severe headache, neck pain, dizziness, blurring of vision, insomnia, and depression.

Your sister’s condition has become much worse because of the biopsy performance. It should never be repeated. Her condition was severe enough and the trauma of a biopsy aggravated it further. Please make sure that in the future they will not perform any kind of surgical procedure on her. Otherwise, her immune system will further fall apart and she will have a much shorter life expectancy. As you are well aware, the sympathetic system has three main functions, i.e., control of temperature, control of vital signs, and modulation of the immune system. In vulvodynia, the immune system becomes rapidly dysfunctional.

One of the reasons for the immune system becoming rapidly dysfunctional is the fact that the spread of the pain, inflammation, and poor circulation to the pelvic abdominal regions causes neuroinflammation of the ovaries, disruption of the Estrogen secretion, and causes interstitial cystitis in the form of frequency and urgency of urination and even incontinence of urine.

Obviously, they have worked the patient up for other kinds of immune system dysfunction's and they have found none. So, it becomes obvious that the only reason for her immune system disturbance is the CRPS-vulvodynia.

You have mentioned that there is "no documentation of RSD in the GU/GI systems." There is plenty of evidence in this regard. As a matter of fact, the International Association for the Study of Pain calls interstitial cystitis as a form of RSD.

The treatment should consist of epsom salt baths which are very effective, but the amount of epsom salt added to the bath should be started as a small amount and gradually increased. Any treatment should not aggravate the pain, so every form of treatment should take into consideration the severe hypersensitivity, hyperpathia, and allodynia that such poor patients have.

In addition, there are specific types of nerve blocks that can be given that calm down the neuroinflammation of vulvodynia-CRPS. These consist of caudal nerve blocks, for the sensory nerves, as well as nerve blocks for the sensory nerves of the genitalia. Obviously, the needle should not be stuck in the vaginal region, but it should be applied proximally.

The patient also needs to have IV Immunoglobulin treatment to prevent further deterioration of the immune system.

Most important, is that the patient needs to have proper pain relief. This is achieved by opioid antagonists such as Buprenex, Nubain, or Butorphanol. The use of opioid agonists should not be used because of the fact that they cause a problem with rebound (withdrawal) phenomenon, and the strong opioid agonists such as Fentanyl or Methadone or Morphine do not reduce the pain any more than from 10 down to 7-8 which is not much of a relief. In addition, the use of opioid agonists causes a withdrawal pain which keeps the patient awake all night.

The patient needs to be treated with antidepressants and anticonvulsants, but not with Elavil (Amitriptyline) which causes systemic side effects and makes the patient gain 7-16 pounds of weight a year. The anticonvulsants should not be limited to Neurontin which is only good for burning pain, but other types that are more effective should be used.

Obviously, the patient does not need any sympathetic ganglion nerve blocks. The fact that she has erythematous (reddish discoloration and heat emission) areas over the vulvar region, points to sympathetic dysfunction and sympathetically independent pain (SIP), so any sympathetic ganglion block is too late to do any good for the patient and will be more destructive than good.

Other blocks such as lumbar epidural blocks and caudal blocks are far more effective, and specifically they are different from the lumbar ganglion blocks or pelvic ganglion blocks because they contain Depo Medrol as an anti-inflammatory medication that provides pain relief for 2½-3 months rather than the sympathetic ganglion blocks providing pain relief for a few hours or a day, if that.



H. Hooshmand, M.D.


I also found this information on a different site.................