The Body Chronic: Alone No More: An Online Vulvodynia Support Group

Tuesday, July 1, 2008

Alone No More: An Online Vulvodynia Support Group

The lovely owner of Life with Vulvodynia has started an online support group for those of us with vulvodynia. The first "meeting" (chat room) is Thursday, July 17 at 8 p.m. EST. Check it out here.

Be there or be square.

1 comments:

Anonymous said...: I just want to be able to talk to someone who is going through the same thing I am. Vulvodynia is very painful and sometimes unbareable pain. I don't know what to do with this pain. I'm missing out on some activities. Heck even a trip to tje store is painful.; July 31, 2016 at 5:58 PM

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Chronic Glossary

Note: The information on this site is intended to create a support network amongst those living with chronic illness and/or pain and their loved ones and friends. It is not meant to be nor should it be used as an alternative to medical advice.

celiac disease--Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley.

chronic fatigue syndrome----CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.

chronic headaches/migraines--By definition, chronic daily headaches must occur at least 15 days a month, for more than three months. The signs and symptoms vary depending on the specific subtype: chronic migraines, chronic tension-type headache, new daily persistent headache and hemicrania continuua.

fibromialgia-- Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day. Common signs and symptoms include:widespread pain, fatigue and sleep disturbances, irritable bowel syndrome (IBS), headaches and facial pain, heightened sensitivity. It's common for people with fibromyalgia to report being sensitive to odors, noises, bright lights and touch.

insulin resistance--Insulin resistance and pre-diabetes usually have no symptoms. You may have one or both conditions for several years without noticing anything. If you have a severe form of insulin resistance, you may get dark patches of skin, usually on the back of your neck. Sometimes people get a dark ring around their neck. Other possible sites for these dark patches include elbows, knees, knuckles, and armpits. This condition is called acanthosis nigricans.

interstitial cystitis/painful bladder syndrome--Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse.

irritable bowel syndrome --Irritable bowel syndrome is a disorder characterized most commonly by cramping, abdominal pain, bloating, constipation, and diarrhea. IBS causes a great deal of discomfort and distress, but it does not permanently harm the intestines and does not lead to a serious disease, such as cancer. Most people can control their symptoms with diet, stress management, and prescribed medications. For some people, however, IBS can be disabling. They may be unable to work, attend social events, or even travel short distances.

pelvic floor dysfunction--Pelvic floor dysfunction, or obstructed defecation, results when the external anal sphincter and/or puborectalis muscles do not relax appropriately when defecation is initiated. People with pelvic floor dysfunction strain excessively in a feeble attempt to eliminate stool from the rectum.

polycystic ovarian syndrome-- If you have polycystic ovary disease, you are likely to have some of the following symptoms: Abnormal, irregular, or very light or infrequent menstrual periods; Absent periods, usually (but not always) after having one or more normal menstrual periods during puberty (secondary amenorrhea); Acne that gets worse; Decreased breast size; Development of male sex characteristics (virilization), such as increased body hair, facial hair, a deepening of the voice, male-pattern baldness, and enlargement of the clitorus. Diabete; Increased hair growth; body hair may be in a male pattern; Infertility; Poor response to the hormone, insulin (insulin resistance), leading to a build-up of insulin in the blood; Weight gain.

vulvodynia--The International Society for the Study of Vulvovaginal Disease (ISSVD) defines Vulvodynia as chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia in cases in which there is no infection or skin disease of the vulva or vagina causing these symptoms. Burning sensations are the most common, but the type and severity of symptoms are highly individualized. Pain may be constant or intermittent, localized or diffuse.

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Tuesday, July 1, 2008

Alone No More: An Online Vulvodynia Support Group

1 comments:

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