Re: Vulvodynia - Major Media Victory ! - also update from

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I thought this was interesting....

I really do think there are many parasites, worms, bacteria, protozoa, viruses, that are at least partially responsible for these illnesses but are yet to be discovered. Time will tell, I guess.

But me... I'm still being treated for worms and 4 weeks later and having just finished the second round of Vermox tablets am still passing MANY worms and eggs in my stools. So, the parasites are very real to me. I have pinworms for sure but there are definitely other worms too... longer (3-4 inches) and very thin and threadlike.... I took the stool test by the hospital lab Mon (was diagnosed initially with pinworms without the stool test being done) and will find out in the next few days exactly which parasites I have. But, I think doctors underestimate how many people in this country have been exposed to these things.

This is good press though in regards to vulvodynia. My new family physician (I switched to a doc within walking distance of my house) has only been out of med school for a few years and seems to be very knowledgeable and open-minded. He suggested my lichen sclerosis could very well have been caused by pinworm infection as the pinworms can cause koebnerization of the skin. I had read this but it made me feel better to hear him suggest it too. I told him I thought I might have had these pinworms for a couple of years at least because I had the itchiness for that long... I just thought it was an allergy at first to detergent or shampoo or something. And I always said mine seemed to bother my anal/perianal area much, much more than the vulvar area. The itching started there. So, I'm very hopeful that after I get rid of all of these worms (you can't imagine how many worms I've seen in the last few weeks... I can't believe they were all living inside of me) the lichen sclerosis might improve a whole bunch. The itching has mostly stopped now. I've noticed that since ridding myself of lots of these worms, my bladder symptoms (interstitial cystitis) and my vulvar burning have also greatly subsided. : - ) Yay! I've been eating lots of the things my urologist had told me were bad for IC patients (lots of lemonade, apple cider, citrus, etc) and these things don't seem to be aggravating my bladder in the least.... that's unusual. And I'm no longer taking the desipramine/elavil so they can't be masking the pain.

Also, he knew of Dr my vulvar specialist/dermatologist in Charlotte and he knew of her good reputation and said that he had other patients who had gone to her. He actually knew something about vulvodynia. Yay! So, maybe the tides are turning and the newer, younger docs are being educated about all of this stuff. That's good news.

Re: Vulvodynia - Major Media Victory ! Read Article in Canadian Newspaper - via NVA

This articles reminds me of a film "Safe" by Todd Haynes about a womanwho is diagnosed with multiple chemical sensitivities. I highlyrecommend it. The film is very good at portraying the complexity ofissues surrounding unexplained illness, and the ineptitude of doctors.--- snofyre00 <snofyre00> wrote:> Those of you who cope with vulvodynia and/or are members of the > National Vulvodynia Association of members of its support group on > yahoo: will be glad to hear this: We have scored recent Major Media> > Success! In CANADA> > The first one of two articles appears below.> > PLEASE SCROLL DOWN THROUGH THE WHOLE ARTICLE TO LOCATE the SECTIONS > ON VULVODYNIA > > THANK YOU NVA! from all of us! and CONGRATULATIONS!> Hugs.. Snofyre00> > ***************************************************> PATIENT DELUSION - OR MEDICAL CONFUSION?> ZOE CORMIER > > From Saturday's Globe and Mail> > When Anet Greenley got sick four years ago, what upset her the most > wasn't the continual nosebleeds, the numbness in her limbs, or even > the fact that her stool had turned green. What really bothered her > was the fact that nobody would take her seriously.> > "My doctors all told me I was stressed out, that it was all in my > head, that I was having panic attacks that upset my stomach," says > the 38-year-old Ottawa native. "Even some of my family told me it was> > in my head.'"> > But Ms. Greenley knew she was genuinely sick -- so sick that she had > to quit the University of London and fly home from England. And > several months later, after going from doctor to doctor, she finally > found out she was right: She has multiple chemical sensitivity (MCS),> > a condition that makes her extremely sensitive, you could say > allergic, to synthetic chemicals. > > These days, Ms. Greenley can control her symptoms, as long as she > avoids everything she reacts to: cologne, dryer sheets and car > exhaust are just three irritants on a very long list. Other than > that, though, there's nothing much she can do. The syndrome is so new> > that doctors still don't know what causes it -- or how to treat it.> > And Ms. Greenley is not alone. According to a Statistics Canada study> > released last week, more than one million Canadians are suffering > from illnesses that are stumping their doctors. > > The most commonly reported conditions are MCS, chronic fatigue > syndrome and fibromyalgia (all of which affect twice as many women as> > men). Reports of a host of other mysterious diseases -- such as > Morgellons and vulvodynia -- also seem to be increasing in both the > United States and Canada.> > What these disparate illnesses have in common is patients' struggle > not only to find a cure for baffling symptoms, but to establish > legitimacy for their complaints. The causes of these conditions > remain controversial -- and many doctors continue to label symptoms > as delusional.> > Some of the skepticism patients encounter is understandable -- > especially when they claim to have something as bizarre as Morgellons> > disease. People who suffer from this affliction say they are plagued > by constant itching, burning and crawling sensations, open sores that> > won't heal, and strange "fibres" (black, white, blue and red) > erupting from their skin. > > Although at least 4,000 people have now registered with the > Morgellons Research Foundation in the United States -- including > former Blue Jays pitcher Koch -- the vast majority of doctors > do not consider Morgellons disease to be anything more than a > textbook example of "delusions of parasitosis" or DOP, a psychiatric > condition. > > This is what Stan Skoumal's dermatologist clearly thought was his > problem. After waiting seven weeks for an appointment, the 54-year-> old from says his symptoms were simply dismissed. > > "The whole visit took 11 minutes, I received a seven-minute lecture > about the wonders of the mind, I was given a psychotropic medication,> > and then I was out of there," he says. "The man never came any closer> > to me than about 10 feet."> > Frustrated, Mr. Skoumal launched a lobby and support group called the> > Morgellons Society of Canada last fall. He avoids medical doctors and> > treats himself with baths, diets and exercise. And he combs blogs and> > chat rooms, where suffers have posted hundreds of amateur > microphotographs of their skin showing their "fibres" and the > parasites they believe have infected them.> > Still, some medical professionals believe that such attempts -- while> > addressing patients' helplessness and anger at the reaction of > conventional health practitioners -- may do more harm than good. > > "Interpreting things under microscopes are fraught with danger -- > you'll find what you're looking for," Dr. Jay Keystone says. "Lie on > your back and look at the clouds. It's a good analogy."> > Dr. Keystone, who practises with the tropical medicine unit at > Toronto General Hospital, has studied parasitic diseases for more > than 30 years and has treated many patients with DOP, and a small > number of whom claim to have Morgellons. "From time to time, I do see> > what they're looking at, I do see the occasional 'fibre,' " he says.> > He adds that, in response to stress, the nervous system releases > chemicals that can cause some strange symptoms. > > But he also says all the lab tests have shown absolutely no evidence > of parasites. He is certain that most patients have open sores > because they have itched and scratched themselves raw. > > Not all doctors agree. Dr. Vitaly Citovsky, a professor of > biochemistry and cell biology at the State University of New York, > says he found a gene from agrobacterium -- a germ that normally > infects plants -- in skin samples from two Morgellons patients. > > This is just an idea, though -- two samples do not constitute proof > that the condition is not psychosomatic. And it's a long way from an > idea to a treatment. All of which means patients may suffer for > years, even decades, waiting for answers.> > Even when a mysterious syndrome has been concretely established, the > stigma of earlier psychosomatic diagnoses can remain, affecting > patient care. > > For example, roughly 15 per cent of women experience vulvodynia -- > debilitating, sometimes crippling, genital pain caused by muscular > and nervous dysfunction. Mainstream medicine has recently recognized > vulvodynia as a real disease, but doctors continue to tell women that> > their condition is "all in their heads."> > "Doctors tend to go through their routines, and if their routines > don't give them an answer, then they say it's all in your head," says> > Dr. Kaye Kilburn, who studies MCS at the University of Southern > California. "It is shoddiness, and it is widespread. But it doesn't > mean the physicians who are in the minority aren't right."> > Laurie can attest to this. When the 53-year-old from Regina > starting having constant burning pain on her vulva, she was told that> > she had emotional problems. "So I went to a psychiatrist," she > says, "and even though I wasn't depressed at first, you start to > become depressed because you go from doctor to doctor and nobody can > tell you what's wrong."> > Living was luckier. When the 24-year-old's pain started two > years ago, just before she got married and moved to , she got> > a diagnosis fairly quickly -- in seven months. Unfortunately, her > dermatologist did not tell her about any treatments. > > On her own, Ms. Living discovered anesthetic creams and > chemical "nerve blocks" that could help her. Before then, she > says: "I was depressed, hopeless, I didn't think there was anything I> > could do."> > None of these treatments have universal success, however. And, > although vulvodynia affects six million women in the U.S., there have> > been only eight studies funded by the National Institutes of Health. > > Indeed, researchers who study unexplained syndromes all complain of > the same thing -- that there is simply not enough money for research.> > Funds tend to be earmarked for high-profile, fatal diseases such as > cancer and heart disease.> > As for the million-plus Canadians who suffer from MCS and chronic > fatigue -- conditions that have been dubbed "yuppie flu" and "20th > century syndrome"?> > Studies are emerging to explain the cellular and biochemical causes > of these strange disorders. For example, researchers affiliated with > the University of Toronto are looking into enzymes that they say are > slightly different in people with MCS, preventing them from > detoxifying foreign chemicals properly.> > But effective treatments are still a long way off. Ms. Greenley, for > one, doesn't think she will ever be cured -- so she and her husband > have installed charcoal filters on the air vents in their new house > and purchased a $4,000 hypoallergenic mattress.> > "When you have MCS, it is very easy for people to think you're a > paranoid person," she says. "I'm not. I'm just trying to protect > myself and make it so I can have a normal life."> === message truncated ===Mara Fortes (New York)011-52-55-55-54-22-95 (Mexico City)__________________________________________________________Need a quick answer? Get one in minutes from people who know.Ask your question on www.Answers.yahoo.com