Tuesday, October 24, 2006

Where Does Pain Come From?

Stoic or just lucky? Gene affects pain: study

http://news.yahoo.com/s/nm/20061023/sc_nm/science_pain_dc



Great story on Yahoo! I urge everyone to read this, print it out and take it to their doctor and get tested for this gene. You will probably have to push to get this done and maybe even get just about every excuse in the book as to why they cannot do it for you. HOGWASH! ASK PUSH AND FIGHT for your pain-free days! Until we learn what is the commonality between all of us that have been diagnosed with Vulvodynia and Vestibulities most of us are not going to find pain-free days that last. Pushing to be tested for these genes and contacting the researchers - asking to be included in their trials and studies is the first big step each of us must take.



Here is Dr. Whoolf's contact information: http://www.massgeneral.org/ncs/neuro_faculty_Whoolf.htm

Clifford Woolf, MD Neuroscience Center at Massachusetts General Hospital Massachusetts General Hospital – East Building 149 13th Street Charlestown, MA 02129

Telephone: 617-724-6754Email: cwoolf@partners.org



Remember when writing to be clear and concise, citing the recent Yahoo article and study. Put a few key facts about Vulvodynia and one or two short but personal pieces of content in your letter. Make sure you include a way for him or his staff to contact you regarding possible future research that you could participate in.



Please carbon copy me on all emails to Dr. Woolf, lauren@vulvodyniasupport.com

Your subject line should include "BH4 gene affects pain: study"



If he responds to your letter with any specific information that he needs in order to start working with our community please email me with that information as well. lauren@vulvodyniasupport.com





In case they delete the story from their site at a later date here is the copy of the content:



WASHINGTON (Reuters) - People who say they are less sensitive to pain than others could be right. Researchers said on Monday they had found a gene that appears to affect how people feel discomfort.





Tests in rats showed that blocking increased activity of the gene after nerve injury or inflammation could prevent the development of chronic pain, a finding that points to possible ways to develop new pain drugs.



And studies in volunteers showed that about a quarter of them had the genetic variant that protects them from pain somewhat, and 3 percent carried two mutated copies that make them exceptionally insensitive to pain, the researchers reported in the journal Nature Medicine.



"This is a completely new pathway that contributes to the development of pain," said Dr. Clifford Woolf of Massachusetts General Hospital and Harvard Medical School in Boston, who led the research.

"The study shows that we inherit the extent to which we feel pain, both under normal conditions and after damage to the nervous system."



An estimated 40 million people in the United States alone, or nearly 1 in 5 adults, suffer from chronic pain.

The affected gene is called GCH1, which codes for an enzyme called GTP cyclohydrolase. This enzyme in turn is needed to produce a chemical called tetrahydrobiopterin or BH4.



"Our results tell us that BH4 is a key pain-producing molecule -- when it goes up, patients experience pain, and if it is not elevated, they will have less pain," Woolf said in a statement.



"The data also suggest that individuals who say they feel less pain are not just stoics but genuinely have inherited a molecular machinery that reduces their perception of pain. This difference results not from personality or culture, but real differences in the biology of the sensory nervous system."

Woolf and researchers in Germany and at the U.S. National Institutes of Health said that rats with pain caused by nerve damage had higher levels of GCH1 gene activity and of BH4.



When they injected a drug that interferes with GTP cyclohydrolase, the enzyme controlled by the gene, the rats seemed less sensitive to the pain. Injecting BH4 greatly increased pain sensitivity, they found.

The researchers tested 400 healthy people and found that volunteers with two copies of the protective gene variant were less sensitive to pain in tests.



People with two copies of the protective version of "GCH1" had the lowest risk of developing chronic pain, while those with just one copy had an intermediate risk and those with no copies of the variant had the highest risk.

The drug used in the study, DAHP, is not very strong and is unlikely to be useful as a human medication, said Woolf, who owns stock in a company called Solace Pharmaceuticals, which has licensed the findings for potential drug development.

South of the Equator

By Christiane D.



*If you would like to join a support group in Brazil, please contact Christiane via email.



In Brazil, I´d say that all gynaecologists who are professors in medical universities know and treat Vulvodynia, as well as most neurologists (due to the neuropathic factor of this condition).



In my case, it took me some months (not years) to find these doctors... the ones I consulted in the beginning unfortunately were not able to recognize it immediately... but from what I´ve read that happens everywhere.



As to treatment, I´d say this is the hardest part to deal with it, no matter where you´re from, due to the complexity of this condition, sometimes it takes along time to find a treatment that works... and what works for some women might not work for others. Unfortunately there´s not a "recipe" when it comes to Vulvodynia.



The doctors initially started me out by taking antidepressants. I found that I don´t tolerate the adverse effects of the antidepressants. The ones I tried made me sleepy all day long (besides other negative effects) and I can´t stand being that way. I want my mind to be active and alert, and not absent as I feel when under these medications.



So I researched on the Internet and found many listings for many alternative treatments. I took what I found to a neurologist to discuss non-antidepressant options.These include: biotine in high dosis, capsaicin creams, glucosamine + chondroitin (which has been studied by the Vulvar Pain Foundation for the treatment of Vulvodynia), hypericum perboratum etc.



I´m about to start acupunture and soon will be back to my doctor´s office. He is going to consult with his peers about these alternative treatments and get back to me on his opinion.



I also went through gynaecological physiotherapy -biofeedback, massage in the trigger points of my pelvic floor muscles (which were contractured) and I tried electric stimulation for relaxation purposes. I´d say that my muscles got 80% better with these techniques.



In addition physiotherapists with a speciality in gynaecology taught me some relaxation exercises I can do to relax these muscles when I feel they are too tense.



I remember in the beginning I was very depressed. I notice now that my mood is much better.

Treat Me?The crucial health stat you've never heard of.

By Darshak Sanghavi

http://www.slate.com/id/2150354/?GT1=8592



This excellent article is about the following:

"Sifting through the underlying science reveals that the way in which scientists and drug companies describe the benefits of many medications—by framing the question in terms of "relative risks"—systematically inflates their value. The result is that patients frequently buy and consume medicines that do very little good."



A must read before you make your next decision about a possible drug or medication you wish to try. I am posting the link to this article in the hopes that learning about how scientists and drug companies market their supposed success rates will help reduce the goose chase many of us in the community have unfortunately lived while trying to find relief from the pain.



While I, Kathleen, and Candace have done remarkably well and healed, many still have not. Simply put, what works for me may not work for you, but only you can be your best ally. Knowing the right questions to ask to determine if a drug will work for you or won't is one of the biggest keys to healing.



Wishing you pain-free days.

Nurse and VV Patient Shares Her Sucess Story

By Kathleen Y.



I was one of the lucky ones that got diagnosed early with Vulvar Vestibulitis. Lucky in that I was diagnosed early, not in that I was diagnosed! I spent years searching for answers, and got addicted to watching the Vulvodynia support website. The first time I found it, I burst into tears reading the stories of others that were struggling as much as I was. Just knowing I was not alone was so helpful.



I found a wonderful man who loved me despite my condition, even though I can't say he was happy about it. We are now married with a beautiful little girl. I have been pain free for 2 years. Here is my story:



As a nurse, I know enough medical stuff to weed through a lot of the junk out there. I spent several appointments with my wonderful GYN who knew enough about the disorder, and had been to many conferences on the condition. I would go in with a list of ideas and medications I found doing searches on the Web, and we'd discuss what to try and what not to try. For the most part, I got by using topical Lidocaine and ice packs when the pain was too much. Antidepressants and counseling kept me optimistic about it all. I took a job as a travel nurse, traveling across the country to different jobs. I took positions in San Antonio, Philadelphia, and Southern California. I saw specialists in Texas, Washington DC (just say no to surgery - I did!!), and Los Angeles. I wanted to find a solution!



My lowest point was seeing a doctor in CA. I wanted to try interferon injections at the time, and was looking for a doctor that did it. I found one that said she did not carry the injections, but if I ordered them she would administer them. Well...my first clue should have been that she had a wide-open schedule. When I went the following day, there were no patients in her waiting room, and only one employee. During our talk, she stated that she did not do the injections and blamed it on the poor English of her receptionist (yeah, right) – I think she had just said yes on the phone to get me into her struggling practice! She then proceeded to tell me that the surgery I had to get rid of my cervical carcinoma in situ was wrong and I was too young to be mutilated that way (what did she want, for me to get cancer??). She also pulled the horrendous line that my vulvar pain was psychological and I needed to get counseling on my views of sex (which have always been healthy, thank you very much!). I walked out of her office, fuming. But I didn't stop looking.



My husband got a job in a rural community in order to pay off his student loans. I saw a family practice doctor there for my annual checkups. During my first appointment, he had a suggestion for me to try. I just laughed - I had seen the top doctors in the country and here this "podunk" family practice doc had a solution? But he was a great doctor, spending 45 minutes just talking with me each appointment, asking how my emotions were, how my sex life was with my husband, etc. I truly appreciated him, and miss him dearly (we no longer live there) - he ended up giving me an answer to my pain. In addition to the Vulvar Vestibulitis, I had frequently recurring yeast infections. They came often enough that I stopped feeling the symptoms; that’s how inflamed I was. At every doctor's appointment, they would be surprised how severe it had gotten before I felt anything. I always suspected the infections caused the inflammation that gave me the Vestibulitis, but at the time there was no conclusive evidence linking the two. In any case, I took Diflucan quite often, and was considering taking a daily low-dose, but didn’t like the idea of doing that. This "podunk" doctor suggested something else - AminoCerv. It is a cream for those recovering from cervical surgery, to get the vulva back to its normal state. The main ingredients are amino acids and urea - it is not necessarily a "medication" in the traditional sense of the word. It helps reset the pH of the vagina, so in theory it helps prevent yeast infections by maintaining a proper pH, although there is no literature on this at this time. After two weeks of application, I saw changes. I could now detect when I was getting a yeast infection. After six months of using the cream off and on when I felt irritation, I saw tremendous changes. Although my psyche was still scared of sex, my body was healing. It took me a full year before I could relax and enjoy myself again. Now, I’m the proud momma of a brand new baby girl, and my husband is one happy man.



I’m not suggesting that what I did would work for everyone, but it definitely can be worth the try if you have similar issues with the infections. If anything, I want to get the word out not to give up trying, to keep searching for your answers. Keep looking for an understanding partner and get a good support system. Keep hoping for pain free days. And just take it one day at a time.

Sunday, July 16, 2006

Actinomycosis-anaerobic bacterium that is part of the normal flora of the oral cavity, gastrointestinal tract, and vagina

I recently met with a Canadian Vulvodynia patient who visited New York to see a specialist about a new diagnosis she received. On this visit I learned about Actinomycosis. Another one of those lovely diagnosis’s that make you say “HUH?”



Just what the heck is this Actinomycosis. I have been running VulvodyniaSupport.com for about 5 years and thought I heard it all but this one was new and made stop dead in my tracks. Learning that this condition existed reaffirmed what I already new in my heart; there is so much about women’s health that we are never taught, nor are many doctors.



When we are not feeling well and the MD’s can’t figure out a diagnosis they usually send us on our merry way telling us that there is nothing wrong and to get on with our lives. When the truth is that as women, right or wrong, we have to fight harder to get properly diagnosed and then properly treated for whatever it is that is ailing us and not take their ignorance as the final word and go on our merry way.



So just what is Actinomycosis? Medscape’s definition is “This disease is most commonly caused by Actinomycosis israelii, a Gram-positive anaerobic bacterium that is part of the normal flora of the oral cavity, gastrointestinal tract, and vagina. Current theories suggest that a breakdown in mucosal integrity allows for the transition from colonization to infection. In our patient, however, the site of the primary abscess was located far from any presumed disruption of the mucosal barrier, suggesting possible hematologic spread…. may be linked to the presence of intrauterine devices.”



Medscape goes on to say,” The classic symptoms of abdominal actinomycosis are diffuse abdominal pain, nausea, vomiting, and diarrhea. Weight loss and chronic low-grade fever are symptoms common to all of the different presentations of actinomycosis. This disease is thought to be underdiagnosed secondary to the nondescript nature of these complaints. Physical examinations may reveal a mass that can sometimes be palpated, with a purple or blue discoloration to the skin often noted.”





http://www.medscape.com/viewarticle/469581_print



Here is what I learned from speaking with Ms. Canadian:



Certain amounts of this bacteria are always present in the vagina. This is normal and ok.



It is a judgment call by the MD as to whether or not there is an overgrowth or if you have a normal flora in the genital tract.



You must have a cervical culture, immunal florescent staining of the culture, and a CT scan to see if there are masses to get a correct diagnosis.



Indicators to look for are a high SED rate or elevated E.S.R. Sometimes Anemia is also an indicator.



Currently the only treatment that MD’s provide for treatment of this bacteria are high doses of antibiotics.





This patient believes that this is her underlying cause of Vulvodynia and asked that I bring some attention to this bacteria so that other women are at the very least armed with the knowledge to ask to be tested. It took her about 10 years to find out about this condition but it need not take the rest of us as long as we are educated and fight for the proper care we all deserve.

Thursday, February 16, 2006

Road to Slainte: Trigger Trauma

A great article written by a Physical Therapist about a great NON SURGICAL treatment that can help heal your VV pain. Those of you who have written to me know that I have always believed that the causes of Vulvodynia and Vestibulites stem from another place outside of the vagina and that learning what YOUR root cause for your VV is the key to healing. In the following article Molly Miller explains in the clearest terms how each part of the body is connected, and therefore a whole and not a part and why and how the pain you feel in the vagina could very well be stemming from another place. For the full article click on the underlined link below.



Road to Slainte: Trigger Trauma by Molly Miller

"...There are many trigger points (tp's) that effect pelvic

pain syndromes. TP's in the muscles and skin of the abdomen, around the sacrum,

in the muscles of the buttock, inner thigh and low back can refer into the

pelvic region and pelvic floor. The muscles of the pelvic floor can contain tp's

that refer to the bladder, the bowel or the labia. TP's have some pretty

predictable referral patterns, but they are not obligated to conform to our

textbooks, they can literally refer to any area of the body. Remember, if you

have pain in an area caused from a tp, and you tighten the muscles to protect

it, you may cause trigger points that refer somewhere else