Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

That Time of the Month March 23, 2009

Filed under: Life,sexual health,Women,womens health — Katie E @ 3:37 am

You’re bloated and crampy and feeling a little off. It must be that time of the month!

So I get on the scale and I look down and – OMG I JUST GAINED FIVE POUNDS!?!?! What did I eat, where did I go wrong? Did I not exercise enough?

You’ve very likely experienced this scenario before. And although you shouldn’t be paying attention to the scale anyway (we’ll leave that for another discussion) you probably are. It’s become very second nature to really hone in on that magic number the scale gives you. And for the purposes of your monthly cycle, the scale is wrong. Well . . . not wrong, but it doesn’t tell the whole truth.

Rochelle and I have been trying this ourselves for the past 6 months or so, and you can play at home. About three days before your period starts your body is in full baby-making gear, so it’s storing fat every which way. Hence, the gaining of the +/-5 pounds. And then two or three days into your cycle, once it is clear that there will be no babies, your body magically lets it all go and you return to normal. This may vary from woman to woman. You may find you have a huge jump or none at all. But if you are paying attention to the magic number, it’s good to look at why it might be doing what it’s doing. Also, It’s important to remember this for one big reason. PMS. You are already emotional to some degree, so it does not help to see that scale jump when you’ve been working really hard.

You may or may not notice differences in your vaginal pain during your cycle. I’d be interested to hear if anyone has every noticed a difference.

But now you can just breath, relax, and be happy in the knowledge that it’s just your body doing it’s job!

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Thunder Thighs March 15, 2009

Filed under: Body Image,Life,Women — Katie E @ 7:10 am

I have
THUNDER THIGHS
and that’s a compliment
because they are strong
and toned
and muscular
and though the are unwelcome
in the petite section
they are cheered on in marathons.
Fifty years from now
I’ll bounce a grandchild on my thunder thighs
and then I’ll go out for a run.

(the second of the two Nike ads I saved from a while ago)

 

Rain March 2, 2009

Filed under: depression,Diet/Nutrition,health,Life,Support Group,womens health — Katie E @ 5:10 am

We had a great meeting today at Pied Cow. But it’s been rainy and unpleasant, and everyone’s getting anxious for spring. I thought this advice from my friend might be good timing. Especially if you’re not feeling happy about your vagina.

From my friend Rochelle ~

Looking out my window and seeing the grey ceiling is discouraging.  Being a California girl I miss the blue skies of winter and the high clouds on a cloudy day.  The Pacific NorthWest offers a perma-ceiling, with very little cloud break, which could lead to feelings of hopelessness, lethargy, lack of motivation, or just feelings of being sad.

We have the power to combat these feelings, and we must for our winters are long in the Portland area.  The first is to set goals surrounding your activity.  Don’t just work out to be thin, there must be a specific reason, a tangible, achievable goal.  I like to set mini-goals because the feeling of success never is tiring.

Second, find some down time, a prayer and meditation room, a coffee ritual, a time to sit and read or stare out at the perma-ceiling and count all of the things you are thankful for because it does rain so much here.

Third, women need to spend time with friends talking and sharing.  We are wired to have deep sensitive conversations, and not deep funny conversations.  Call up a friend, suggest putting on layers of clothing and go for a refreshing hike, or walk in the rain or snow, or the blistering East wind.

Aside from these  fun ideas it is important to take some natural remedies to combat depression, striking it down before it strikes you down.
1)    no refined food products
2)    limit alcohol intake
3)    take cold showers (or finish your shower with a cold rinse)
4)    take vitamin D3 supplements
5)    take emergen-C (low sugar version)
6)    get enough omegas (fish oil)

As the long winter stretches on there will be more writings on depression.

 

Ode to My Butt February 17, 2009

Filed under: Body Image,health,Life,Women — Katie E @ 6:34 pm

I found this magazine ad by Nike years ago and saved it. I’m still kind of astonished that Nike did it in the first place. I ran across it the other day and wanted to share it with everyone, because it’s great!

My butt is big
and round like the letter C
and ten thousand lunges
have made it rounder
but not smaller
and that’s just fine
it’s a space heater
for my side of the bed
it’s my ambassador
to those who walk behind me
it’s a border collie
that herds skinny women
away from the best deals
at the clothing sales.
My butt is big
and that’s just fine
and those who might scorn it
are invited to kiss it.

Send us your odes to your butts or any other body part! I’d love to collect a whole bunch of odes to lots of different body parts. Ode to my Thunder Thighs by Nike is coming soon, but I want odes by women about their parts! Send them in!

[photo by ckeester]
 

April Challenge! April 5, 2008

Filed under: Life — Katie E @ 5:19 am
Tags:

OUR APRIL CHALLENGE! Tell someone this month that you don’t know about VVS! The only way we can educate people is to talk about it. We’ll be at Clackamas Community College next week educating people, but everyone should be so lucky! If you want to get your feet wet start by telling someone you do know, but doesn’t know about your VVS. AND! Although guys need to know it, too, tell a woman. You may be surprised that they have had similar experiences or know someone who has. You could change someone’s life!

So let’s get out there and tell the world!

 

Your Partner, Your VVS, and You April 1, 2008

I feel like having a partner and vvs is walking an extremely high, terribly thin tightrope. On one hand you want to provide for your partner in your relationship, sexually, emotionally, everyday functioning. However you shouldn’t compromise yourself to do this. If you are feeling particularly down you shouldn’t feel like you “need” to put your own needs aside to please your partner. Like giving blowjobs bc sex isn’t totally possible at the moment. But you don’t want to shut down from your partner 100%.

Unfortunately, just like everything else with vvs, there is no right answer. Every couple will have different issues/complexes surrounding their situation. Talk with your partner, how you feel, tell them about shutting down emotionally during this time. How do they feel about it? Tell them what would make you feel better. Ask them what would make them feel better. Tell them how they could help. (Even in little ways, like doing something with the kids so you can take a hot bath, or taking out the trash – little things like that add up.) Start small, baby steps are the key to making a relationship work with vvs. What is one thing you can do this week that will make one aspect a little better? And then continue the conversation. Update with each other on how it’s going, is it helping? What else would help? And continue baby stepping along.

 

An Article: 14 Different Treatments for VVS November 27, 2007

This article is great! Just found it today.

I tell ya – where were these articles a couple of years ago?

Where were these studies and findings 5 years ago, even 15 years ago or longer?

It’s amazing to see how far we’ve come, but we have so very long yet to go.

Hopefully we will make a difference with NVVO and you ladies out there speaking out and spreading the word about better treatments, diagnoses, and research…and support among other women who are feeling alone and weird with this horrible crappy chronic condition known as Vulvar Vestibulitis – Vulvodynia – Vestibulodynia.

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14 Different Treatments for Vulvar Vestibulits Syndrome

http://www.ourgyn.com/content/index.php?option=com_content&task=view&id=18&Itemid=66

Written by Andrew Goldstein, MD   

Friday, 27 April 2007

As Awareness Grows, So does Diagnosis and Treatments:Vulvar vestibulitis syndrome (VVS) is a subset of vulvodynia that is characterized by severe pain during attempted vaginal penetration to pressure localized to the vulvar vestibule (see diagram), and redness(erythema) of the vulvar vestibule. A subset of vulvar vestibulitis is called vestibulodynia, which combines the three symptoms with constant pain at the vestibule. Increased awareness of VVS has led to exciting new research. This review will examine current concepts regarding the diagnosis, etiology, and treatment of VVS.

Until recently, neither the cause of VVS nor what causes the underlying pain was known. However, in the last few years, increased awareness of vulvar vestibulitis syndrome (VVS) has led to exciting new research. This research focuses on many different aspects of VVS including possible genetic, infectious or allergic causes, and on multiple treatment regimens. Even basic assumptions of early researchers have been questioned, leading to a greater understanding of VVS.

We now know that women with VVS feel pain at the vestibule because they have an increased number of nerve endings in the vestibule. A woman with VVS can have up 30 times the number of nerve endings (3000%) as compared to women who do not have sexual pain. The nerve endings are called nociceptors. Nociceptors are the nerve endings that are responsible for sensing pain and stretch.Image

So what caused this increase in the number of nerve endings?

Women with Primary VVS are women who have pain ever since their first attempt at intercourse.  In fact, most women with primary VVS have had pain when they first started to use tampons. Approximately 20-25% of women with VVS have primary VVS. Women with primary VVS almost never have had completely pain free intercourse. The current hypothesis is that the neuronal proliferation in primary VVS is a congenital problem (birth defect). Current evidence supporting this hypothesis is that the tissue of the vestibule is completely different tissue than the tissue of the vaginal above the hymen (embryologically, morphologically, and histologically). Therefore, it is plausible that a woman could have a congenital problem in the vestibule without having any problem in the vagina. This hypothesis is further supported by the fact that there is a very high concordance of women with VVS and interstitial cystitis (a similar pain syndrome of the bladder and urethra).  The bladder and urethra are derived from the same tissue as the vestibule.

Women with secondary VVS have pain beginning after some period of pain free intercourse. Women with secondary VVS also have a proliferation of nerve endings, but unlike women with primary VVS, they are not born with it. Instead, women with secondary VVS have acquired these nerve endings. To explain this unfortunate acquisition is slightly more complicated than in primary VVS. Over the last 5 years scientist have been pasting together several different pieces of information to get a congruent explanation of secondary VVS. The pieces of information are as follows 1) women with VVS have much more sensitive skin throughout their whole body as compared to women without VVS. 2)

In addition to a proliferation of nerve endings in the vestibule, there is a proliferation of mast cells in the vestibule. Mast cells are the white blood cells that are responsible for allergic and inflammatory reactions. 3) Up to 50% of women with VVS have a defect in one of 2 genes (IL1-RA, IL-1 beta) that are responsible for limiting inflammatory conditions in the body. If we put these (and other) pieces of information together, a new hypothesis is emerging. (Actually, we must give credit to Dr. Stanley Marinoff who first published this hypothesis in 1986- long before there was data to support it.)

VVS may be initiated by an allergic reaction to a chemical irritant in the vulvar vestibule. This irritation – possibly to topical antifungals, other medications, or chemicals- causes mast cells to migrate to the vestibule. If the irritation persists, activation of mast cells leads to an uncontrolled proliferation of nociceptors in the mucosa.

This hypothesis explains why up to 80% of women with VVS complain of an acute onset of symptoms that includes burning and itching, which then progress to severe pain on touch. The pain on touch often then persists even after the initial symptoms of itching and burning disappear. Of course, further studies are ongoing to assess the validity of this hypothesis.

Treatments of VVS

Unfortunately, studies examining the possible treatments of VVS have not been as numerous as studies to identify the cause of this disease. The two most widely studied treatments for VVS are surgery (25 studies), interferon (6 studies) and biofeedback (3 studies). In addition, there are many other treatments that are being used without supporting medical literature. While this does not invalidate any of these treatments, patients and there practitioners are left with a “lets try it and see” approach that can be very frustrating (and potentially dangerous.)

1) Tricyclic antidepressants (amitriptyline, desipramine, nortriptyline).  There have been no published studies on TCA use in VVS. However is there is currently an ongoing NIH funded study examining desipramine (with and without lidocaine) for VVS. The current theory behind using TCAs for VVS is that they “numb nerves” and VVS is a disease of too many nerves. It is not known if treatment of VVS with TCA is curative or just palliative.

2) Lidocaine is a topical anesthetic. Traditionally, lidocaine has been prescribed to numb the vestibule enough to have intercourse. More recently, investigators have been examining the possibility that lidocaine- if applied for long periods of time may cause the nerves to regress or become permanently numb. A study published in July 2003 by Zolnoun and colleagues showed that long-term, nightly application of 5% lidocaine ointment significantly improved the ability to have intercourse. It is not known how long this effect will last after stopping the lidocaine.

3) Estrogen: While there have been a few reported cases that estrogen can be used to treat VVS, no studies have been published. It is possible that estrogen treats VVS by numbing nerves or by improving the health of the vestibular tissue. In addition, it is possible that a woman has been incorrectly diagnosed with VVS and has instead a condition called atrophic vaginitis that is caused by a lack of estrogen. Using topical estrogen will dramatically improve atrophic vaginitis.

4) Low oxalate diet: In 1992 an organization was founded called the Vulvar Pain Foundation (VPF) (vulvarpainfoundation.org) that was founded on the belief that the symptoms of VVS were caused by very minute crystal of oxalic acid in the urine. Oxalic acid is found in many foods, so they proposed “low oxalate diet” that limits foods that have high levels of oxalate (an organic acid). In addition to the low oxalate diet, they suggest adding calcium citrate supplements to help neutralize the acid. The VPF claims that many women have been helped with this treatment approach. Unfortunately, the only study examining this theory showed that women with VVS have the same amount of oxalate crystals in their urine as women without VVS.

5,6,7) Biofeedback, Intra-vaginal physical therapy, BOTOX:  Some women with VVS -especially those with vestibulodynia and dysesthetic vulvodynia- have developed pelvic floor dysfunction (PFD). PFD is when the muscles of the pelvis become very tight and tender. This type of pain, called myelofascial pain, can be very severe. Biofeedback is a technique by which you use a probe in the vagina to learn to control and relax the muscle of the pelvic floor. Intravaginal physical therapy is akin to a massage of the pelvic floor muscles to slowly stretch and relax them. BOTOX is botulism toxin that has been approved by the FDA for the treatment of wrinkles. BOTOX works by temporarily paralyzing muscle in which it is injected. Ongoing research is examining if injections of BOTOX into the pelvic floor muscles can treat PFD and thereby help VVS. I suggest that you go to Dr. Howard Glazer’s website (www.vulvodynia.com) for a discussion about biofeedback and Talli Rosenbaum’s website (www.physioforwomen.com) for an in depth discussion of intravaginal physical therapy.

8. Steroids: A small study of 15 women in 2001 examined injections of steroids combined with lidocaine for VVS in which 32% were cured and 36% were significantly improved. No data exists to show if this was cure or just temporary palliation of the symptoms of VVS.  More recent evidence suggests that VVS is not caused by chronic inflammation and therefore steroids should not be the correct treatment. To date, no larger, or long term, studies have been done.   The paper did not distinguish between primary and secondary VVS.

9) Interferon: Interferon (INF) is a naturally occurring biological chemical that improves the immune system and decreases inflammation. INF was first proposed as a treatment for VVS in 1989. The rational for using INF was the hypothesis that the cause of VVS was human papillomavirus (HPV) infection. However, more recent studies have cast doubts on this hypothesis. Several studies, including a large study by this author of 214 patients treated with a series of 12 intra-vestibular injections of INF showed an overall 42% success rate. Patients were more likely to have success if they had secondary VVS for less than three years. Very few patients with primary VS were improved. As INF is a very potent mast cell inhibitor, it is possible that this is why INF may work for VVS.

10) Nitroglycerine: a small pilot study was published in 2002 that examined the affect of application of nitroglycerine cream for the treatment of vulvodynia.

No distinction was made between women with VVS and dysesthetic vulvodynia. While the majority of women had decreased pain during intercourse, most participants had headaches associated with the nitroglycerine. In addition, it is not know if this is a cure or temporary palliation of symptoms. Lastly, no distinction is made between primary and secondary VVS.

11) Antihistamines: There have not been any studies examining anti-histamines for the treatment of VVS. However some practitioners do use them as part of a treatment regimen. A similar medication, Cromolyn sodium that inhibits mast cells did not help women with VVS in a placebo-controlled trial.

12) Capsaicin:  Capsaicin is the purified extracted alkaloid from red chili peppers (capsicums). This is the substance that makes chili peppers hot. The purified form capsaicin has been found to relieve pain by reducing substance P, which is found at nerve endings and is involved in transmitting pain signals to the brain. There has been only one published study about using capsaicin for VVS, but it is also being used at several referral centers including the Mayo clinic. Anecdotally, this is a very painful treatment.

13) Atropine: Atropine is a medication that affects blood vessels and has a wide range of uses in anesthesia, ophthalmology, and is even used as a treatment for “nerve gas.” While there have not been any published studies using atropine for VVS, some practitioners prescribe a 2% atropine cream to be applied daily. Success rates are not known.

14) Surgery – Vulvar vestibulectomy with vaginal advancement. The theory behind surgery is that the underlying problem with VVS is that there are too many nerve endings in a very small area of tissue (about one square inch) and if the mucosa (skin) with these abnormal nerve endings is removed and replaced the healthy tissue, that this will solve the problem. There have been 25 published studies examining this procedure for VVS and 21 of the 25 have shown greater than an 80% success with the surgery. Unfortunately, surgery has gotten a bad reputation.

If surgery is not done by an expert (who has done many of these operations) there can be significant side effects including infections and scar tissue formation. In addition, if not enough tissue is removed, there can be areas that still hurt after surgery. In fact, initial success rates for this operation were only about 50-60%, but continued advance in surgical technique has pushed the success rate to almost 90%. In one study, more than 85% of women who had the surgery would recommend the surgery to another woman similarly affected.

Many authors suggest that surgery should only be used as a “last resort.” However, more recently, as the success rates are now so high, many experts in the field suggest surgery after failing 1-3 alternatives discussed above. Lastly, many experts also believe that because primary VVS is probably a congenital operation, surgery is the only treatment that will work for primary VVS.

02/2005 

Last Updated ( Wednesday, 05 September 2007 )

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