IC Disease

The American Pain Foundation has named the National Vulvodynia Association as the Website of the Month in their December newsletter.  I think it is great that illnesses like Vulvodynia are starting to get more exposure.  Like IC Disease, Vulvodynia has been an under-funded, under-researched, and very misunderstood illness afflicting many, many women around the world.

The National Vulvodynia Association is an educational, nonprofit organization founded to improve the lives of individuals affected by vulvodynia, a spectrum of chronic vulvar pain disorders. Its website provides information for patients and professionals, healthcare provider referrals, support network and services, research information, publications and more. Its Research Fund was established to provide researchers with the opportunity to gather pilot data on vulvodynia in order to obtain larger-scale funding.

For more information on the great work the National Vulvodynia Association is doing, please click THIS LINK. 

Like Interstitial Cystitis, Vulvodynia is another illness that is often misdiagnosed and dismissed or ignored by physicians and society.  When I read an online news story about a woman suffering with Vulvodynia who was misdiagnosed as having other similar conditions, I could relate completely with her story.

The patient was treated for a urinary tract infection, then IC Disease, then seeked several alternative methods of treatment and saw a total of 8 physicians before she was finally diagnosed properly.  Like many of us, she was told by doctors that there was nothing wrong with her and was told she needed to seek psychiatric care. 

It wasn’t until 2006 that the American College of Obstetricians and Gynecologists and the American Academy of Family Physicians printed an educational piece on Vulvodynia in their monthly newsletter and sent it out to 150,000 physicians with information on how to diagnose and treat it.

“Vulvodynia, like many conditions, has historically suffered from a lack of understanding,” says Lori Heim, a director of the AAFP. “But it is real - it is not a psychological condition. And now more is known about it, its extent, and how to diagnose and treat it, so we decided to provide our members with education because the information has evolved.”

“One of the difficulties is that there is no test for vulvodynia,” says Marc Steben, a family physician and clinical researcher of vulvodynia in Montreal. “The diagnosis is one of exclusion.” In other words, when you can’t peg the problem as anything else - say, a yeast imbalance, a bladder infection or interstitial cystitis - then it could be vulvodynia.

If all the tests turn up negative, says Alan Gerulath, a gynecologist at St. Michael’s Hospital in Toronto, properly diagnosing vulvodynia is “based on symptoms, primarily burning - but not itching - discomfort.”

To read more of the news story, click HERE.

Topical gabapentin has been found to be a well tolerated, effective treatment for relieving the pain of localized and generalized vulvodynia, according to a report in the September issue of Obstetrics & Gynecology.  According to this video from Reuters Health, the results of this study come from the research of 19 women with generalized vulvodynia and 32 women with localized symptoms of vulvodynia.   The study used 2% - 6% gabopentin.  Treatment with gabopentin of 8 weeks on the test subjects found that the average pain score was reduced from 7.26 to 2.49.  Approximately 80% of the women achieved results that were 50% or greater.  You can watch the video and find out more information by clicking below…

Internet TV for Doctors

A family member of mine was diagnosed with IC Disease in 2000, which was three years before my IC diagnosis.  It is not a blood relative of mine, but she is a relative through marriage.  She has also had many back problems over the years and she has additional symptoms that are not usually found in IC patients but are similar to those of Vulvodynia, but much more severe.  Her chiropractor told her her vaginal pain symptoms are coming from back damage but she can’t find a doctor who will admit that this is the case.  My family member has thoroughly researched IC Disease and Vulvodynia but can’t seem to find where some of her symptoms match either illness.

She goes to the restroom every 10 - 15 minutes, but it is not burning pain or pressure as seen in IC patients that makes her have to go that often.  She gets intense, extreme pain that she said feels like a knife.  She can’t stand long enough to wash dishes because the pain gets so bad for her.  When she lies down on her side, the pain will get better.  With IC Disease, the pain doesn’t improve with lying down.  Any ideas what this could be and if it could be something in her back like she and her chiropractor believes?  Her chiropractor told her that it is the area in the lower spine between LR-L5 that would cause the vaginal pain.

I was only able to find a few posts this week on IC Disease, Vulvodynia and related conditions on the web.  There needs to be more websites that talk about these chronic issues we deal with!  Below are the article names, excerpts and links to the articles. Enjoy reading!

Chronic Gynecological Conditions - No More Silence

The first Polish website about persistent vulvar pain – vulvodynia – opens to the public. The team of psychotherapists located in Warsaw end silence and openly write on the condition which is mostly unknown in Central Europe. The NIH funded studies conclude that vulvodynia affects one out of six woman and is commonly misdiagnosed as candida or infections.

PR-CANADA.net

Defining the Urologic Chronic Pelvic Pain Syndromes: A New Beginning

The follow-up workshop was held in Bethesda, MD on June 16th and 17th with guest participants from Europe, Asia, and North America and was open to the public and patient organizations. Its purpose was to assemble a group of international experts in urology, gastroenterology, internal medicine, rheumatology, epidemiology, behavioral science and other disciplines with a goal to re-characterize the two most common urologic chronic pelvic pain syndromes, interstitial cystitis (IC) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). The meeting was seen as a prelude to the “Multidisciplinary Approach to Pelvic Pain (MAPP) multicenter program, set to begin later this summer. Centers for the MAPP have not been officially announced.

Newswise Medical News

Pelvic Floor Study

A new study can help women find treatment for pelvic floor troubles. Currently about one in nine women undergo surgery to treat pelvic floor problems.

KIMT.com

Defining The Urologic Chronic Pelvic Pain Syndromes: A New Beginning - An International Symposium

While no conclusions were reached, several interesting papers led to wide ranging discussions on the following topics:

– Is the perception of chronic pelvic pain organ and gender specific?
– Would a questionnaire need to be gender specific?
– Are the current definitions too restrictive?
– What is the relationship between urologic pelvic pain syndromes and the other chronic pelvic pain syndromes?
– Is the relationship an epiphenomenon or do these relationships provide a clue to common pathophysiology?

Medical News Today

I really need to find out for sure whether or not I have Vulvodynia.  The more I read about the disorder, the more pelvic pain I have (different from that of my normal IC pelvic pain), I become more and more convinced I have it.  I was helping hubby mow the grass today.  This is the first time I have ridden the riding tractor since last summer.  I was having a lot of pelvic pain all evening and it continues today.  Our backyard is pretty bumpy and I always tend to run the mower a tad too fast.  Yes, I even have a lead foot with the riding tractor! 

I need to schedule my yearly gynecological exam so I am going to talk to the doctor about Vulvodynia when I go to see her. 

If anyone out there reading this has Vulvodynia, I would love to “talk” by email with you to learn more. Have a nice Sunday!

Make sure you read yesterday’s post before continuing with today’s post.

Not sure what to wear because the pain in your abdomen and vaginal area is severe whenever you dress? Here are some tips for clothes shopping and dressing that I have found to work.

Underwear

With IC Disease & Vulvodynia you will find that cotton may very well become your best friend. Buy underwear that sets low on your stomach and that doesn’t come up over your stomach. The tight elastic in underwear around the bladder area is just too much pressure. Thong underwear and bikini underwear are definitely out.

Pantyhose</strong.

Whenever I started having IC symptoms, I was never able to wear pantyhose again. To this day, even though my symptoms are mild, I still can’t wear pantyhose. I’m sure it is the same for Vulvodynia patients. An alternative to pantyhose is to either go without anything on your legs or wear knee highs or thigh highs depending on how long or short your skirt or dress is.

Dresses/Skirts

Choose dresses that are flowing and do not have an elastic waistband. For skirts, I have found that anything that is a silky-type material is pretty comfortable as long as the waistband isn’t a tight elastic. I also have found that choosing lightweight materials for dresses feels much better on my entire body.

Pants/Jeans

I used to love to wear jeans. Now a pair of jeans is my last choice when getting dressed in the morning. Even though my IC symptoms are mild most of the time I find that I still can’t wear jeans. I’m sure many Vulvodynia patients can relate to this one, too. I wear a lot of exercise-type pants and shorts all year round. In the summer I will wear lightweight materials in these same type of pants. Also choose pants that have a drawstring waistband instead of a tight elastic.

People who do not suffer from diseases like IC Disease or Vulvodynia, or who have chronic pelvic pain, take it for granted everyday when getting dressed, not realizing how easy that task is for them. The fashion industry unfortunately does not cater to people with illnesses that cause severe pain in the vaginal area or lower abdomen so it can get frustrating for IC & vulvodynia patients to dress.

I found that once I had IC Disease, I had to stop wearing a lot of things that I liked or needed to wear.  Pantyhose was the first item I had to take off of my wearing list.  I was high up in a direct sales company at the time that required me to wear pantyhose.  I was in so much pain, however, when I would put on a pair I simply could not wear them. 

Jeans were another clothing item I had to give up wearing.  Even now that my IC symptoms are manageable, I still have trouble wearing jeans a lot of the time. 

For the longest time I even had to stop wearing underwear (except for that time of the month) because the elastic band around my waist caused too much pressure on my abdomen.  I still find that I can’t wear most types of underwear.  I have to buy the underwear that is lower and falls beneath the bladder area in order to have some comfort.

Tomorrow I will go over what type of clothing is best to buy and wear for IC patients and Vulvodynia patients.

Approximately one out of seven women are affected by chronic pelvic pain which is difficult to treat.  Not only is chronic pelvic pain painful, it can also take a huge emotional toll on the sufferer because even after countless trips to a doctor and therapist, they still often don’t have a solution to the cause or for their pain.

C. Paul Perry, MD, chairman of the International Pelvic Pain Society and an assistant clinical professor of obstetrics and gynecology at the University of Alabama at Birmingham says times are changing:

“Women no longer have to settle for being debilitated. We’ve made a lot of progress in the past decade in educating physicians about chronic pain.”

But what most doctors have learned by now about chronic pelvic pain is that there is typically more than one cause. Most women have at least three conditions that causes their pain. All the causes have to be treated in order for the patient to get better - not just one cause.

An article I recently read from Prevention recommends that women with chronic pelvic pain see a pelvic pain specialist.  Only a pelvic pain specialist possesses the broad knowledge and experience required to provide you with an accurate diagnosis and appropriate treatment for the five most common causes of pelvic pain:

• Endometriosis
• Interstitial Cystitis
• Pelvic Floor Tension Myalgia
• Pelvic Congestion Syndrome
• Vulvodynia

Source

We have all heard the saying that there is no such thing as bad sex, there is just some sex that is better than others. But for women with Vulvodynia, the pain that accompanies sexual intercourse can make what is normally a pleasurable act miserable and bad for them.  A 2003 research study done by Harvard University found that approximately one in six women experience chronic vulvar pain at some time in their life.

What women have is more than a “depressed vagina”, as it was referred to in Sex & the City by Charlotte. There are many women out there suffering from Vulvodynia and chronic vulvar pain and pelvic pain. Vulvodynia is more well known now though because women do not feel that talking about this issue is as taboo as it was once considered.

Vivian W. Pinn, MD, director of the Office of Research on Women’s Health said:

“I like to think to that the women’s health movement has made women more comfortable talking about parts of their body than they were years ago. But still, many are a little uncomfortable talking about the vaginal area. They might not even know the term vulva, and may often refer to it as the ‘pain down there.’”

A Vulvodynia awareness campaign was launched last year by Dr. Pinn to help educate healthcare providers and all women about the condition.  Here are some tips that Dr. Pinn and the Office of Research on Women’s Health recommends for women who think they may have Vulvodynia: 

• Honesty is the best policy.  Be honest with your partner about your condition.  Don’t feel obligated to have intercourse if you know you are going to suffer the consequences later.
• Change brand of toilet tissue.  Vulvodynia patients should only use white, unbleached toilet tissue.
• Purchase and use only cotton feminine products.  Buy 100 percent cotton sanitary products.
• Cotton all the way!  Purchase and wear only cotton underwear.
• No hose.  Avoid pantyhose and tight clothes. 
• Plenty of water.  Wash the affected and vaginal area frequently with plenty of water.
• Don’t overwash.  Avoid using creams, soaps, douches and deodorants in the area.