Interstitial Cystitis Advice

The name sticks in your mouth like a bad taste; it is far from pretty or simple, nothing so quaint as being named after a person who endured it or a more general medical term. Perhaps this is because there is absolutely nothing pretty or simple about this complex medical condition. Like Interstitial Cystitis (IC), vulvodynia is a condition that often shows no root cause. It only affects woman (both men and women can get IC though) and a large majority physicians rarely take it seriously. Preferring to tell women that it is “all in there heads” or “just relax and it’ll go away”. But it doesn’t, not without proper treatment and help. Many women, some statistics say 25% of women with IC also have vulvodynia, why? This is just one of a plethora of questions which surrounds vulvodynia, yet so little is known about this condition that most women have never even heard about it before.

If you were unfamiliar with vulvodynia, you might make the rational assumption, based on the name that is was connected in some way to the vulva or the vagina, both would be right (guesses about Volvo cars would not, however, be correct). The name vulvodynia comes from two Greek words, “vulva” and “odynia” meaning pain. Okay, now the name makes more sense, but I will never like the sound of it. Essentially there are two main sub categories of vulvodynia:

Vulvar Vestibulitis (“VV”), referring to pain that is felt in the vestibule (the area surrounding the entrance of the vagina), particularly during sexual activity. It may cause small bumps or what feels like tiny pieces of sand underneath the skin of the vestibule region.

Generalized or Dysesthetic Vulvodynia or just Vulvodynia (“DV”), meaning a “general” feeling of pain (often described as stabbing, scratching, electric, sharp or heavy)/burning/itching/tenderness in and around the vulvar area, this might be only in certain spots or all over. As well the pain may extend beyond the genitals to the perineum (area between the vaginal opening and the anus) and the thighs.

Other similar conditions include Cyclic Vulvodynia, in which itching and burning are experienced in the vulva during certain points in the monthly menstrual cycle and Vulvar Dermatoses, a generalized term for many conditions which can affect the vulvar region and are of a demagogical origin (including contact dermatitis, lichen sclerosus, lichen simplex chronicus and lichen planu). They often produce itching and pain as well, and the treatments used to help these conditions may in fact further inflame tender vulvar skin.

A number of women, myself included have both Vulvar Vestibulitis and Generalized Vulvodynia. Common characteristics that both share include pain, tenderness, having difficult or impossible sexual relationships, increased pain upon touch (stimulation)-even very light touch such as that of a q-tip, and pain with certain activities such as horseback riding or cycling. As well things like medical examination of the area and using tampons and sex toys maybe highly painful, if not impossible.

But what is this thing called vulvodynia? Essentially it is a chronic condition of pain (tenderness) or discomfort of the female genital area. There are no signs of found infection (bacteria) or skin disease/condition or sexually transmitted disease (STD). The pain often appears rapidly and many women make the assumption that they have either a yeast infection or a bladder (urinary tract) infection. While it is possible to have either of these in conjunction with vulvodynia, that is not often the case.

Vulvodynia often causes chronic pain, and this inevitably has a profound impact on the woman’s life. Her ability to perform at a sexual level she would feel comfortable with may have disappeared, she is in constant or frequent pain and she may find it hard to do certain forms of exercise. As with so many chronic pain conditions, in some cases vulvodynia may lead to depression or a withdrawal from her “normal” life and a lack of self-esteem and confidence. All issues which must be addressed and dealt with!

An exact cause of vulvodynia is not yet known and many theories float around the medical community and the Internet as to just what might be behind this vicious and daunting condition. Speculation has been given to many ideas, among them:

-Infection, be it fungus, bacterial or viral (test of white blood cells counts may be helpful in determining if the patient has such as infection).

-An allergic response to something in the environment (if allergies are suspected it is best to be tested by medical professionals before automatically assuming you have an allergy or allergies).

-Chemical sensitivities, often from everyday products like soap, tampons, lubrication, make-up, and douches. Avoiding these products may help relieve many symptoms.

-Autoimmunity, a negative response to the body’s own normal means of functioning and existing in which certain parts of the body essentially attack themselves as they are no longer able to distinguish between normal tissue and the pathogens which it needs to naturally attack and ward off. Women with vulvodynia have been found to sometime share two well-known autoimmune disorders in particular. Sjogren’s Syndrome (a chronic drying of various mucous membranes in the body) and a debilitating condition called Lupus Erythematosis. Tests called Anti-Nuclear Antibody tests or ANAs can help to determine if you do in fact have an autoimmune disorder.

-Pelvic Floor Dysfunction (PFD), a condition in which the muscles that support and anchor the rectum, uterus and bladder become damaged and often weakened, this too may be due to uncertain factors or a known cause like injury, and is a condition commonly seen in patients with IC.

-Irritation of the nerves leading to the vulva and or vagina. This may be especially true for women who feel sharp, shooting pain from the vulva to the legs, feet and/or buttock (bum). Treatment of such problems often includes the use of painkillers and antidepressants, as a last resort nerves can be removed but this leads to a permanent loss of sensation in that area.

-A form of Candida (the factor which causes yeast infections also known scientifically as Candida Albicans).

-B-Strep (like strep throat), which can even strike the vagina.

-Some form of STD (there is no evidence to back this claim, even if vulvodynia is seen in some patients with HPV (genital warts).

-A genetic predisposition to vulvodynia.

-Oxalate sensitivity, this theory put forth largely by Clive Solomns states that some women with vulvodynia have a sensitivity to certain plant oxalates which in turn cause “crystals” (tiny shards or flecks or material) in the vulvar tissue. Some vulvodynia patients do test positive for increased numbers of oxalates in their urine but not enough research has been carried out to tell if this would also be found among other non-vulvodynia women. Following the belief that oxalates promote vulvodynia a diet has been developed which eliminates most if not all foods with high oxalate levels, especially certain fruits and vegetables. Though many women try this diet, only some seem to have any marked improvements (pain reduction). This diet also urges patients to take calcium citrate to combat the oxalates in your body.

-Manifestation of other related conditions such as Fibromyalgia, IC or Candida. Some women with vulvodynia report urinary symptoms similar to IC or a UTI, yet testing does not find either of these conditions and may turn up nothing abnormal at all.
-The result of previous damage to the vulvar/vaginal area such as childbirth, injury or surgery.

-Erythema Nodusum (“EN”), a condition in which painful (often large) bumps (or “nodules”) that may resemble bug bites or odd bruises, appear on the legs and other areas of the body. This condition is believed to be related to an abnormal immune system, as inflammation occurs in the deep, fat layers of the skin. Some factors that put people at risk of developing EN are IBS, estrogen treatment, eating foods with dyes and preservatives, antibiotics, strep throat, fungal infection and use of the birth control pill.

-Hormone problems or disturbance such as Endometriosis, irregular periods, ovarian problems, Polycystic ovarian syndrome (some feel this name is misleading and should be re-termed as it relates to insulin resistance) and other hormonal imbalances. Potential credibility to this idea may come from the fact that some women report a decrees or disappearance of their symptoms during pregnancy. As well pain and symptoms may wax and wane depending on where they are in their menstrual cycle. Both and excess and lack of (lower than “normal”) levels of estrogen could both account for vulvar pain and problems. Blood test may be helpful in determining estrogen levels, but let your doctors know where you are in your cycle as this can impact the findings

-Sexual trauma or abuse, for a very long time the majority of physicians believed that sexual abuse, especially any sustained during childhood was the most likely cause of vulvodynia, which lead to vulvodynia being falsely, and routinely accused of being a psychological problem not a physical condition. Many women have suffered unjustly over the years because of this view and a fraction of practising doctors still adhere to it. However, there is not proof whatsoever that vulvodynia is more prevalent in women who have suffered sexual abuse.

There are a few other ideas as well, but these are some of the more predominate ones. Knowing this we can speculate that it may be in fact (as some feel IC may be) a combination of numerous combined factors which leads to a woman (or girl, vulvodynia has been seen in girls as young as preteen) to develop vulvodynia.

If you suspect you have one or more forms of vulvodynia, you must see a doctor, and keep seeing them until you find one that listens to you. Some doctors may suggest very invasive procedures like surgery as their first treatment option, in most cases it is best to try other methods of treatments before considering something as permanent and serious as surgery.

Vulvodynia does not seem to be largely affected by social situation or race, some numbers place white women as reporting more cases, while others say the numbers are equal. Vulvodynia can strike at virtually any age, but most patients are of childbearing age. In other words, me.

My introduction to Vulvodynia (both VV an DV) began, I believe (I say I believe because that was the first time I noticed any such symptoms) on the exact same day I first felt symptoms of IC, however at the time I was not aware that either of these conditions existed, I though I probably had a yeast infection or an UTI. Though the excoriating bladder pain and problems I literally woke up with took president I knew something was not right with my body.

Like most women I had never ventured to look at my “girl zone”, despite the fact that I have always maintained frank and open views about my own body and sexuality. So I got out the hand mirror and went investigating. I didn’t have to be a rocket scientist to see that something was definitely wrong down there in the female “nether region”. The skin was discoursed, more pinkish red than I thought normal, as well it seemed to be inflamed and swollen, the vaginal opening seemed closed off almost and any touch literally brought me to tears. But what was I to go on, a doctor who preformed a test for yeast infections saw me just days before and said nothing about the appearance (I stopped seeing that doctor shortly after this “exam”, when she became verbally abuse and insulting with no cause whatsoever). I spent an entire day off in agony in a Chapters bookstore in a major Canadian city, going through every single book about sex and anatomy. I needed to see other women’s vulvas and compare my own. I know this sounds raunchy but it was the most serious of medical research. I flipped through at least 40 books and though some offered crude drawings of the female anatomy or colour drawings, none were life like enough to even come close to a proper comparison. I found tons of real pictures of male private parts, yes scads of willies and wee-wees but no REAL pictures of vulvas or vaginas. I understand that this is often classified as pornographic material, but I think if they are going show a penis, for goodness sake show a “pussy”. So I did what any self-respecting woman would do in my situation, I went and bought "girly" magazines that featured women. Like a scientist staring at cells through a microscope I inspected the pages, and even though appearance of many of the women’s genitals were altered due to heightened sexual arousal, I could tell I wasn’t “right” down there.

It would take many more months of agony and suffering before I was finally diagnoses with VV and DV, in the mean time I had started wearing only cotton (white when possible) underwear, stopped using any soaps or chemicals near that area and eating a low oxalate diet. These “gyno” diagnoses came before I eventually got a proper diagnosis of IC, and I was fortunate to finally find a great gyno who listened to me and didn’t tell me “it was all in my head”. We tried a few medications and creams to no avail (including anti depressants), eventually he prescribed me Gabapentin (Neutron) which I still take to this day, I believe it offers help to many of my medical conditions, including VV and VD.

I do not know why I devolved Vulvodynia (or IC or any of the others), I don’t even have a sturdy theory, I just woke up with it and it has never entirely gone away. I went through long periods of sexual abstinence, the pain was simply unbearable, and any touch, even toilet paper or pads aggravated the vulvar areas.

I will never forget the time the “good” (or should I say great) gynaecologist examined me and he ever so gently touched the Bartholin glands at the base of the vaginal opening-my back literally arced off the examination table (think of the image of a scarred cat) and I bite my tongue to suppress the tears, he could hardly continue it hurt too much. I spent days and days “recovering” form such simple touch, almost unable to walk at all, ice continually on the area. Looking back, well lets just say it’s not something I would wish on my worst enemy. Yet thousands upon thousands, if not millions of women around the world experience some form of Vulvodynia at some point in their lives. Of these a percentage will find a treatment method that “cures” her, while others get only some degree of relief and for a few nothing seems to help.

The options available are not the widest assortment. Vulvodynia is not an overly researched condition, it was rarely mentioned in the annals of medical literature until the last couple of decades and the false belief that vulvodynia is a psychological problem (which I can assure you it is NOT) has kept it as hidden away from public view as very vulvas and vaginas it affects.

Diagnosing vulvodynia is often done by touch, a very sensitive vulvar/vaginal are may indicate that vulvodynia is present. In one test a simple cotton swab is rubbed over top of possible “trigger” areas (places which are thought to be sensitive) and the doctor judges the patients pain response to the stimuli. As well visual appearance may help determine vulvodynia, especially VV as some patients with VV have little, noticeable red spots (dots) on their problem areas (such as the vaginal opening). However it is possible to vulvodynia without any visible signs being present. The sensations a patient feels are often described as burning, itching and stabbing. Inflamed blood vessels may also been seen with the aid of a magnifying glass type instrument called a colposcope. The doctor will also want to rule out STDs, Candida, skin irritations and other medical conditions with the appropriate tests before determining that you do in fact have one or more forms of vulvodynia.

A name to your symptoms, a word for you pain. Though a diagnosis alone will not cure or treat you, it can begin the healing process. I first came across the word vulvodynia online (same with IC) and I fought damn hard to get the treatment I knew I needed. Do the same, you must be your own “best” advocate. Doctors may have more medical knowledge than you (note I said may), but you are the one with the symptoms, ultimately you are the one in a position of power, because only you know how to best describe how you feel, what you think and what you believe may be causing/helping/hurting/etc your body.

When treating vulvodynia one has to remember that vulvodynia can flare up just like (almost) any other chronic pain condition and may require more than one form of treatment to combat it’s effects. The following treatment options may give some relief (ranging from complete to minute).

-Tricyclic antidepressants like Elavil and Tofranil, which have long been used for another purpose other than to treat depression; pain relief. These medications alter the transmission of pain impulses by affecting the normal balance of your neurotransmitters. And for some people this means that their brains no longer get certain pain impulses, hence the vulva may stop hurting (as much). These same medications are often prescribed to IC patients for the same reason, and have achieved some degree of success in treating both conditions. Other forms of antidepressants such as selective serotonin reuptake inhibitors (SSRIs) like Zoloft and Paxil are also being tried.

-Antihistamines like Hydroxyzine (Atarax and Vistaril), which are used to help combat overly high numbers of mast cells (cells which when aggravated can cause painful, unnecessary inflammation of any region in the body by giving off chemical substance which irritate mucous membranes). Many patients with IC are found to have higher than normal levels of mast cells in their bladders as well, and are also treated with antihistamines:

-Pelvic floor therapy (PFT), this treatment may be used in conjunction with oral or topical medications or on its own. The goal with such therapy is to help return the pelvic floor muscles to a more normal or natural (“healthy”) state of being. Someone who is trained in pelvic floor therapy should only administer this sort of treatment. Some IC patients also experience difficulties with their pelvic floor muscles and turn to PFT for relief.

-Anticonvulsant drugs such as Neurontin (Gabapentin), medications which act by helping nerves to become more resistant to pain stimulation and in turn sending off less pain signals to the pain. Dosages range from 800-4,000 milligrams a day and my take several weeks to see any results. However they do have a decent track record when it comes to blocking pain reception and many ICers also try Neurontin.

-Anti-inflammatory drugs to block and treat the vulvar inflammation such as Celebrex. Also used by some IC patients to help heal inflammation of the bladder lining.

-Various topical creams and salves such as estrogen cream to add moisture to the vaginal skin (prescribed under a doctors supervision due to the nature of this treatment). As well non-steroidal zinc lotion, A&D diaper rash ointment, Aveeno, calendula lotion, comfrey ointment, St. John’s wart lotion, and vitamin E oil are all products that have been experimented with to help ease vulvodynia symptoms. All of these products are available over the counter (often at vitamin and health food shops).

-Antibiotics, this is a controversial subject of sorts as many feel that thought antibiotics may offer initial aid in treating vulvodynia they may lead to a reoccurrence which is even more violent (hash) than the onset symptoms were. As well, as no bacterial cause has been found to be responsible for vulvodynia, it’s difficult to speculate why these drugs would have any positive effect on a vulvodynia patient, unless they also had an infection of some sort on top of their vulvodynia.

-A low oxalate diet.

-Topical, locale anaesthetics such as those containing lidocain to block pain on the skin level of the vulva/vagina. Some patients find this helpful when attempting to make love to their partner.

-Though rarely used in vulvodynia treatment (despite the fact they may be needed by many patients who will never receive them), strong (often opioid) pain medications may be used, in supervised, necessary dosages to help control severe pain. Examples include Methadone, Morphine, Vicodin , Percoset, Ultram and OxyContin. Likewise IC patients who are able to find a doctor who agrees that their situation warrants such strong drugs will often be prescribed the same medications.

Other medications have been tried on a limited basis, as well some patients are treated with Interferon injections and in severe cases certain types of surgery on the vulva and vestibulars. Less common treatment ides range from acupuncture to TENS therapy to natural yeast killers.

Though I know that it is easier said then done, try to be patient once you have found a good doctor, who is trying to help you and work with you. Few treatments for anything serious work instantly, it may take days weeks or even months to determine if one treatment is working or not for you. Though I have no hard facts to back this up, I seem to think that vulvodynia is often more treatable than IC. Yet so often the two overlap.

I have talked to so many ICers with vulvar conditions that after a while one begins to think that perhaps vulvodynia is like IC, only on the outside of the body not inside the bladder. Many make changes in their life to help keep their vulvodynia at bay, including wearing only cotton underwear (or non at all when possible, say at night in bed), not wearing tight fitting clothes such as certain jeans or nylons (linen is your friend), adapting the low oxalate diet and trying alternative ideas.

Of course one of the largest areas of your life that both IC and vulvodynia affect is your ability to have comfortable (pain free) sex. For some this is impossible, for others it is a rare occurrence. With both conditions it is important that your partner be supportive and understanding and that you do not set unrealistic goals for yourself. Intimacy can be achieved in many other ways and sex need not focus primarily on the act of penetration.

I have encountered so many ICers with vulvodynia that I began to think of them as a duo, while certainly not all women with one develop the other, it is quite common and as more medical knowledge is discovered about both I feel that doctors and researchers may realize that the source (root) causes of both IC and vulvodynia are remarkably similar.

You might not leap tall building or dash into a payphone to change, but you are a “super” woman, whether you realize it or not. Living with chronic pain and/or chronic (in terms of duration) illness is a remarkably challenging thing to do. The greatest powers you will ever have are your mind, and your perseverance. You are stronger than you may realize, you have the ability to get the answers and diagnosis, treatment and care that you need, but always remember that you are not waging this “intergalactic” battle alone!