Vulvodynia: The Silent Pain Syndrome

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I want to talk about a pain syndrome that most women have probably never heard of, but affects nearly 14 million women worldwide. It affects all races and ethnicities with Hispanic women suffering 80% more than other groups. It is a pain syndrome that those affected are reluctant to share with their partners, closest friends, or their doctors. This is because their pain revolves around and within the vaginal area, an area that we women often do not feel comfortable talking about in any company. Making this the “silent pain syndrome” and leaving women everywhere feeling alone and damaged.

This pain syndrome is known by a few names such as Vulvodynia, Vestibulitis, Dysaesthetic vulvar, vestibular adentis and vestibulodynia. It was given several names back in the 1980’s to help doctors refine and come up with treatment plans based on where the pain was located, the condition of the tissues in the vagina, or surrounding areas, as well as what provoked the pain. However, since the 80’s more and more studies have been done on the condition showing that most women who suffer with it have overlapping symptoms from one form to another. This has lead the medical community to start moving away from trying to categorize or compartmentalize it into one of these diagnoses. For the most part nowadays, it is just called vulvodynia.

Vulvodynia was recognized as far back as the 1800’s, when it was treated by surgically removing the vulvar area. Unfortunately, many of these women only got temporary relief. It unfortunately,  was left out of the medical books until the 1980’s when Dr. Edward Friedrich began reporting on it. Since then 80 studies have been done on the condition. It is not clear whether the increase in research is due increased awareness or an increase in the condition itself. The National Vulvodynia Foundation says that the average women suffering with this condition can see upwards of 15 doctors and it can take as long as 12 years to receive a correct diagnosis. This is because so many doctors are still ill informed and poorly educated on vulvodynia. The medical community is lagging in research when it comes to women’s health conditions, especially those that cause chronic pain in our genital areas.

Sadly, most doctors will push their patient’s pain syndrome off as a psychological problem, PMS, stress, lack of love for her partner or even sex in general. Many of these women find no help from the medical community and go on to suffer in pain silently, leading to other co-morbidities such as depression, anxiety, suicidal ideation, irritable bowel syndrome, interstitial cystitis and fibromyalgia. For many women who have been abandoned by the medical community, they will go on to question their own mental and emotional stability. They will often blame themselves for their condition, thinking they have somehow damaged their body physically through picking up an unknown STD or have psychologically thought themselves into this pain syndrome as many of their doctors have suggested. These women often are unable to continue having sexual intimacy, some get so bad that they reach a point of not being able to wear clothes, sit, walk or even tolerate a gynecological exam. Urinating or defecating can bring on horrific stinging pain that leaves many to cry out with the simple act of going to the bathroom, which in turn leaves them drinking less and eating less and holding their urine  or bowels for as long as they can so as to not experience that feeling. Unfortunately, doing some of these things can further the progression and pain from this syndrome as well as to create other dysfunctional conditions. For those women whose conditions continue to progress, they can be left  extremely disabled, unable to work or care for their families, which in turn leads to high divorce rates and financial losses. Couple all of that with a condition that a woman feels she has no one to share it with and it is no wonder that they often go on to suffer with depression, anxiety and suicidal ideation.

What is Vulvodynia?

Vulvodynia is known as a neuropathic or inflammatory pain condition to the genital area in women. As of yet it is caused by an unknown etiology. It is thought to be from the same family and act much like “phantom limb syndrome”. Vulvodynia causes a myriad of symptoms such as inflammation, redness around the vestibule (opening to the vagina), the vulva itself (outside vaginal lips also known as the labia major) and to the inner or small lips (also known as labia minor), as well as the vagina itself (the inside tissues). It can effect specific spots in or around the vagina, like the perineum, rectum, thighs, pubic bone or pubic hair, clitoris and the urethra. For some women it can affect all of these areas making their situation life  altering, disabling and agonizing. Women who have this condition experience stinging, burning, itching and razor cutting like sensations with the slightest of touch, making intercourse, tampon insertion, wiping or washing the area and the wearing of clothes painful to impossible.

Some women also complain of feeling as if they are dried up down there, while others feel as if their insides are falling out of them. Often when the clitoris is involved, it can cause agonizing pain that shoots up into the abdomen. In many of these cases, the women’s abdomen can become inflamed and reddened as well, leading to irritable bowel syndrome symptoms. For many the pain is so agonizing that they are left unable to wear clothes, walk or even sit. For some the pain can extend into the urethra or even the bladder setting off another pain syndrome known as interstitial cystitis. This condition can leave them in severe burning pain during and after urination.

Vulvodynia is unique to each woman with some having it constantly while others have it intermittently. Some will only suffer from specific areas of pain while others have it everywhere. Some will only have pain with intercourse while others have it with anything entering or touching  the vagina. Some will suffer with only hypersensation while others will suffer with all of them. For some the pain will be manageable while others it will be life altering. Each women’s pain level and frequency is different making this illness hard to understand and even harder to treat.

What Causes Vulvodynia?

Well that is a good question, and unfortunately, no one in the medical community has yet been able to answer. However, there are several theories about what increases the risk for developing vulvodynia.

Compressed Pudendal Nerve

We know that some women have a damaged, compressed or pinched off pudendal nerve. The pudendal nerve is a nerve that comes off the spine and innervates the pelvic floor region. It is what allows you to control urine flow or bowel movements. It is also, what activates your glands when aroused to produce the moisture in the vagina and allows you to have an orgasm. It has many important and enjoyable functions, but if it becomes damaged it can also create a lot of pain, dysfunction, and grief. Damage to this nerve can happen by a fall to the back or butt. It can be injured during labor. It can become inflamed or compressed by an arthritic condition or by a cyst or tumor. Some of these conditions can be fixed with surgery or nerve blocks, which in some instances may relieve the vulvodynia. Unfortunately, compressed nerve affects only a small number of vulvodynia sufferers.

Infections

It has also been shown in studies that 54% of all women with vulvodynia also test positive for HPV, however scientists has not been able to say with certainty that this specific viral infection is the cause for these women. Instead of it being the cause, it may just be the women’s own immune response to the infection. Researchers have also studied other viral infections that are known to cause neuralgic pain syndromes like this, such as cytomeglavirus and the herpes viral family, but have not found any evidence of these infections.

Researchers have looked at candidiasis infections as well; this is because so many women with vulvodynia have a long history with chronic fungal infections with many using repeated “azole” therapy to treat it. Yet again, they have not been able to find a link or correlation with any species of fungi. Although there is a question as to whether the use of any of the “azole” drugs could have possibly caused this condition or whether it is just associated with it because so many patients with vulvodynia are misdiagnosed with yeast infections. Due to this, the medical community warns women to be careful when using the OTC “azole” drugs and to follow the manufacturer’s recommendations. Additionally, if the yeast infection is not cleared with the usual course of treatment or a second infection develops, you should not use the cream again without first seeing your doctor.

Studies have also looked at bacterial infections as the cause, here they found that 17% of sufferers had an infection with what is known as ureaplasma, which is often seen infecting the Bartholin glands. For these women treating the infection often times cleared the vulvodyina. They also found a small number of women with the Streptococcus B infection and again in many of these cases, treating the infection cleared the vulvodynia. None of these studies have been able to state with certainty that any particular infection is the cause, but they do show that if you suffer with a long standing, chronic or hard to treat infection of any kind (viral, fungal or bacterial) you could be at a higher risk of developing vulvodynia.

Childbirth and Episiotomy

For other women there was no clear accounting of an infection but they could relate the start of it back to the birth of a child or the episiotomy. Here again we are looking at damage to the nerve or the soft tissues.

Hormonal Birth Control, Cancer Medications and Other Steroids

Other studies have implicated oral contraceptives and early childhood intercourse as a cause, both of these may be linked to hormonal imbalances. Some drugs have been implicated as the cause of it too, such as cancer drugs and both oral and topical steroids. Even though the topical steroids are used to help with the inflammation and itching in this condition, they are known to cause thinning of the tissues and sloughing. They tend to lower the immune system allowing for other infections to pop up making the situation worse.

Comorbid Fibromyalgia and Chronic Pain

Fibromyalgia has also been implicated in vulvodynia, mainly because so many women who suffer with fibromyalgia also suffer with vulvodynia. However, it is believed that fibromyalgia is due to an unknown muscular etiology and as if often seen alongside chronic fatigue. Both of which are thought to be caused by an abnormally high level of a neurotransmitter involved in pain sensation, so having this pain syndrome alongside of these would stand to make sense and put you at a higher risk for vulvodynia.

Oxalates

Older studies have suggested high oxalates in urine may be responsible for the pain. Oxalates are like little sharp slivers of glass made up of calcium that are excreted through our urine, but as of recently this theory is no longer being considered. This is because so many women have not tested positive for excessive oxalate output. Those who have gone on low oxalate diets have had some to no response, leading the scientific community to suggest that the oxalates themselves are not the problem but instead the fragile irritated tissues that the oxalates cross are more the issue. Now even though this may not be the cause, going on a low oxalate diet may be worth a try to lessen the pain. Another study suggests pH imbalances may be involved, but again cannot be confirmed as of yet and does not hold true for every women.

Inflammatory and Allergic Reactions

Recent studies have shown a correlation with inflammatory allergic reactions, like those seen in people with mast cell reactions. This is also seen and been implicated in interstitial cystitis too. However, we are still in the beginning phases of understanding not only this correlation but also Mast Cell Disease. If you suffer from this, you may be at a higher risk of developing vulvodynia as well.

Researchers at John Hopkins in Baltimore looked for two cytokines (immune stimulating cells) associated with inflammation. They found significantly higher levels of interleukin 1 beta and alpha necrosis tumor factors in test subjects. This would suggest that there is an inflammatory process going on, possibly due to an autoimmune problem. Then pathologists out of Rotterdam in the Netherlands found through biopsies chronic inflammatory infiltrates in all the patients and none in the control group. The infiltrate was composed of T-Lymphocytes as well as a small number of B cells, plasma cells, mast cells and monocytes. An immunoglobulin important in antibody reactions, IgG was found in plasma cells of 75% of the patients. This again suggests that there is an inflammatory process caused by an autoimmune reaction going on, however, they are not ready to confirm or deny this yet.

Finally, the University of Iowa has found impaired natural killer lymphocyte activity in the women effected as compared to a control group. Natural killer cells are needed to defend the body against certain cancers, so this finding may explain why some women with vulvodynia also suffer with dysplasia, despite having not contracted the aggressive cancer producing HPV strains. This finding may bring us back to implicating the HPV virus. However, this is all new information and nothing has been confirmed yet.

Diagnosing Vulvodynia

There is no specific test for this condition. It is diagnosed by ruling out other conditions and diseases. Physicians may want to test and treat for any infections first and see if that relieves the pain. If not, then it may be vulvodynia. Vulvodynia is frequently misdiagnosed as a chronic vaginal infection from fungi or bacteria. However, if your cultures are negative for an infection you may want to consider vulvodynia.

Treating Vulvodynia

This is the million-dollar question that both women and vulvar pain specialists are asking. Unfortunately, we really do not know what causes it. This means that without an identifiable factor, we are guessing at how to treat it. We also know that every woman experiences vulvodynia differently, making a “one size pill” that treats everyone impossible. Each woman will go through a trial and error with treatment modalities. This can often make the journey long and tedious, as well as, quite discouraging and even painful, especially when something heightens the pain instead of lowering it. This is why it is very important to get involved with a vulvar pain specialist, not just a pain clinic or pain doctor, but one that has been truly trained in treating this condition. Here are some of the many modalities in the arsenal to treat vulvodynia.

  1. Trigger point injections. This will numb the area for a few hours to days, giving some relief with the hopes that they will be able to shut off the nerve or reprogram it. Lidocaine is usually used for this. However, this procedure can be quite painful and risks damaging the nerves and tissues further, so for many women this is not an option. Now some doctors will also prescribe lidocaine jelly or even xylocaine jelly to be smeared on the painful areas. These can topically numb the tissues and nerves, giving some minor relief for a few hours. Although once again, for some women just putting this gel on can be too painful and does not last long enough to make it worth it.
  2. Topical steroids. These are often prescribed to help with the itching and inflammation, even though research has repeatedly shown them to be ineffective.
  3. Baking soda douches. If the vagina is too acidic, some doctors will recommend baking soda douches, which is non-toxic and in a few cases, it can help.
  4. Interferon. Several studies have tried treating women with interferon. This has shown some success, but the relapse rate is very high and one study showed that using interferon on women who do NOT have HPV actually worked better.
  5. Topical estrogen creams, progesterone and/or testosterone. Early research was promising. However, it may be painful for those women who cannot tolerate any kind of a cream placed around or in the vagina. It is important to note that estrogen cream can activate Mast Cell Syndrome.
  6. Prophyllin compresses. Some women find compresses made of prophyllin ( a prescription powder) to be soothing to the area.
  7. Low oxalate diet. Oxalates are in nearly everything we eat, but you can avoid the high oxilate foods. Doctors who prescribe this diet often times prescribe calcium citrate to go along with it. The calcium citrate helps to neutralize the oxalates in the urine. The Vulvar Pain Foundation reports the two most consistently helpful regimes for their members are the estrogen creams and low oxalate diet with calcium citrate. Another thing that sufferers report helping them is, drinking lots of water. Water dilutes the oxalates in the urine which decreases irritation.
  8. Anti-depressants and anti-convulsants. Fibromyalgia researchers have suggested that certain anti-depressant drugs may be useful in women also suffering with FMS.  Vulvar pain researchers have not done studies, however, clinical experience; they suggest that the SSRI’s are not effective in treating this condition. There is no research on the anticonvulsants.
  9. Capsaicin (an extract of the red pepper). Capsaicin has been used successfully in other neuralgic pain conditions like, diabetes, HIV, herpes infection and even in interstitial cystitis. An ongoing study of topical application suggests it may relieve pain, however, because Capsaicin produces significant burning when applied it may not be appropriate for those suffering with vulvodynia due to inflammation. It may not even be appropriate for those women with skin break down or seriously sensitized tissues.
  10. Opiates and other pain relievers. These may be effective in the short term, but long term they are problematic.
  11. Physical therapy. Specialized pelvic floor therapy has helped some women suffering with vulvodynia, especially those who also have FMS. Dr. Glazier, a psychologist from New York, states that biofeedback along with physical therapy to the pelvic floor can help to strengthen and relax the muscles in women with vulvodynia. This therapy is often also used in people with interstitial cystitis and irritable bowel syndrome too.
  12. Surgery. There are multiple surgical options but none appear to reduce the pain and many increase it.
  13. Cannabis oil. Cannabis oil applied topically has become all the rage, but as of yet, there are no studies to evaluate its effectiveness. Vulvodynia sufferers, however, report significant relief .

What is the Prognosis with Vuvlodynia?

I wish I had better news to report here and maybe one day I will have it, but for now this is not known as a curable condition. Do not be discouraged. We have many diseases that we are not able to cure but have the ability to effectively control. The first step is getting properly diagnosed and ruling out any other conditions or infections. The second step is finding a vulvar pain specialist or a vuvlar pain clinic to start the treatment process. Both of which can be found through your doctor or through the National Vulvar Pain Foundation. Once you reach this point, your journey to getting better will begin.

Please know that it may take quite a while to reach a point of lessened or no pain. It may also take several attempts at different or mixed modalities including medications, creams, diet, physical therapy and trigger point injections to find what works best for your condition. If you are also suffering with depression, anxiety or suicidal thoughts then you also need to find a psychologist to help you work through all of this as well. Please know that these mental and emotional conditions are very common in women with vulvodynia. This is due to many factors such as constant pain, loss of intimacy and all that goes along in a relationship because of it, including, a loss of self-sexual beauty and feeling damaged. Suffering in silence also causes distress. So, please if you take nothing else away from this article, just know you are NOT ALONE!

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10 Comments

  1. has any research been done on a link between the Gardasil HPV vaccine and Vulvodynia? i regret having my daughter get that vaccine as it was totally unnecessary and after the first injection i had read some information about it that really concerned me (of course all the info sent home by public health, which was provided by the drug company, gave glowing reviews and made it sound life or death if they didn’t get the vaccine…..the drug company getting public health and all the schools on board made them millions) and decided we shouldn’t continue with the vaccine so i told her to tell the public health nurse that she wasn’t to get the next injection and i even gave her a note but the nurse told her she “had to get it” since she had the first dose and forced her to take it. i probably should have sued them. you mention there is a link between testing positive for HPV and vulvodynia but i just wonder if there could be a link between the vaccine as well. i know the drug company would try to suppress this link, if discovered, but please pass this on to any researchers to look into. i am interested to hear what others think about this. thank you

    1. Hi Concerned Mother, I never came across any studies or research papers on a link between the Gardisil vaccine and vulvodynia. However, last night after reading your post I decided to go up and look to see if there was any, but could not find any linking the two together. So, I decided to look at the vaccine itself to find out if it was a live vaccine or not. I did find that the vaccine was NOT a live one, meaning the main part of the vaccine which is used to prevent the HPV virus is a synthetic mimic of the actual virus, so this means it is NOT an injection with a small amount of the live HPV virus. Then I went and looked at the physician’s information on all the possible side effects that have been seen and reported with this vaccine and again found no evidence or mention of vulvodynia and that even included the after market reporting. The only thing I did find was that there have been reports of Pelvic Inflammatory disease reported with this vaccine (besides all the other very serious systemic side effects). Now Pelvic Inflammatory Disease (PID) is completely different than Vuvlodynia, however if a person suffered the side effect of PID , they would be put at a much higher risk of developing Vulvodynia.

      So, let me explain the HPV connection with vulvodynia and then I can explain why someone would probably not develop vulvodynia from this vaccine. You see, the virus itself (when you contract the actual HPV virus) does not ever leave the body, it goes into hybernation, much like many other viruses (herpes, EBV, CMV, ect..) These viruses hybernate in the persons tissues just waiting for the immune system to break down and allow it to come back out. Now with the HPV virus because it effects the tissues of the vagina and surrounding areas, it often sits deep within these tissues and around the delicate nerves that innervate these tissues. Each HPV virus cell contains a certain protein that sits on top of them. It is this protein that has been shown in studies to attach itself to the nerve endings within and around the vagina. This protein then basically irritates the nerve endings, therefore causing the vaginal pain known as vulvodynia.

      Now, the HPV vaccine is a “dead” vaccine, meaning it is NOT Live, so it is not using the actual virus to stimulate the immune system into building a defense against the virus. This also means that the synthetic mimic of the HPV virus does NOT contain the actual DNA or protein that sits on the actual HPV cell, so it is not going to sit within the tissues, thereby attaching and negatively effecting the nerves that innervate the tissues. This means it does not have the ability to act on the body like the actual virus, therefore not setting off vulvodynia. So, this is probably why there are no known cases of this vaccine causing vulvodynia and probably why there are no studies speaking of it or on it.

      Now, I know this vaccine has a history of damaging large populations of young girls and women who have gotten it, my daughter included, but vulvodynia is not one of the symptoms associated with it. However, I will tell you that when I looked up the actual ingredients of the vaccine, there is no wonder why so many are having problems with it. Besides the fact that you are being injected with a synthetic mimicked version of the virus, which is a foreign entity to the body and that alone can stimulate the immune system into attacking it and the body itself, but also many of the other ingredients are quite toxic and were never meant to be put into the human body. So, many of the other ingredients can also create a negative immune response and one that does not shut off, leaving the person to suffer with all kinds of autoimmune problems. Some of the other ingredients are also ones that if gotten into the muscular skeletal system could potentially set off muscular pain or illnesses like Fibromyalgia. So, there are a lot of reasons for your daughters response to this vaccine and I am sorry that she is also suffering with these problems, but vulvodynia did not come directly from the vaccine. Now let me just say that vulvodynia can often be set off by other immune illnesses within the body. Illnesses like Fibromyalgia as well as many of the autoimmune diseases, like RA or Lupus, ect… So, if your daughter is also suffering with vulvodynia now, even though it was not directly caused by the vaccine it could have been indirectly caused by the other systemic bodily illnesses that were caused by the vaccine. However, the way side effects are reported on drugs, it can only be listed or studied if it was a direct cause of something taken or used, but it cannot be listed, studied or connected as a side effect if it was indirectly caused by whatever was taken or used, such as the vaccine in this case.

      Well, I hope this answers your questions and I hope that your daughter finds some kind of relief for her all of her problems now. Even though she may not have gotten vulvodynia from the vaccine, the treatments listed in this article as well as all the information should hopefully help you to help her find some kind of treatment at least for the vulvodynia. I wish you both the best

  2. I have suffered with Vulvodynia for 20 years. Luckily my ob/gyn had read an article about it and got me to the only specialist in Boston. That being said I have done everything, everything medication , injections, pt, exercises, creams. marijuana etc. I just finished radiation for uterine cancer and my pain has exploded. My life doesn’t exist without this constant pain. You cannot overstate the mental battles involved. Constantly looking for answers is mentally and psychologically exhausting. Please keep up your work and making all the information available. I pray for answers and relief in my lifetime. Thank you!

    1. I am so sorry to hear about your aweful battle with this horrible illness. I know you said you have done injections but i wonder if you have tried botox injections which are used in the most extreme protracted cases. Botox injections have a high success rate in cases like yours, if you have not tried this i would suggest bringing this up with your doctors. There are not a lot of places that do it, but usually university vulvar pain clinics are experienced in it, so you may have to travel but it may very well be worth your trip and time. I hope you find some relief.

      1. Thank you for the Botox suggestion. I’ve had trigger point injections coupled with pt but never Botox. I will look into it. I’ve also not heard of magnetic dilators. They gave me 2 dilatory when I completed radiation but using them makes the pain worse. Do you think using magnetic ones would be any different?

      1. Kathy, I do not know specific doctors in each state that treat this condition, however, you can always talk to your Gyne, because they usually know of the nearest vulvar pain clinic and or vulvodynia specialists. If they are unable to help you find one you can go to the National vulvodynia Pain website where they also have lists of clinics and doctors in each state that treat this condition. I hope this helps you

  3. Thank you for this amazing article. Vuva Magnetic Dilators are incorporated into Pelvic Floor Pt for Vulvodynia and work well.

    1. Tara, thank you for the kind words and your added input. I hope this article and women like you give some hope and maybe some alternative therapies to other women out there suffering. Thank you

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