Vulvodynia Support

There is a new, patient controlled, support group for vulvodynia sufferers. They have good chat forum, links to various web-sites and news, and some pretty inspiring stories. Please check it out, and if it looks like a good fit for you, by all means join them and add your two cents. Many heads and many hearts can make a huge difference in the lives of women that are dealing with a very isolating condition. In case the title link doesn't work: Vulvodynia Support

V is for Victory!

Vulvodynia, Vulvar Vestibulitis, Vulvar Dysesthesia, Vaginitis, Vaginismus, Vestibulodynia. It reads like a list of alien invaders, and for women afflicted with these conditions, it feels like it. These are words that show up as a diagnosis or diagnostic criteria with nearly 15% of all gynecological visits in the US today. That’s a lot of women, and this number doesn’t reflect the number of women that are mis-diagnosed or undiagnosed.

Let’s break down the laborious terminology here.

· Vulva- (or vulvo-): is a root word that means “external female genitalia,” which includes the inner and outer labia (lips) the clitoris, vaginal and urethral opening, and that little fold of skin-like connective tissue around the opening (the vestibule).

· Vestibul- : see above

· -dynia: pain (vuvlodynia – pain in vulva; vestibulodynia – pain in vestibule)

· -itis; inflammation – typically characterized by: redness; pain (often burning); maybe swelling; and tenderness to touch

· -mus: tightness or spasm

· Dysesthesia – (dys- impaired function; -esthesia: sensation) in this context, the sensory input from the vaginal area to the brain does not match the stimulus. Typically in painful conditions it means the nerve endings are hypersensitive, light touch should not cause searing pain, but for those with dysesthesia, it does.

Basically what we have here is a collection of symptoms that often serve as a diagnosis when no one can figure out WHY the symptoms have appeared. There are a lot of theories as to why this happens to so many women (some studies show as many as 50% of women will have these symptoms in their life-time), and there is constantly new research getting us closer and closer to the cause.

Here are some of the things we know (or suspect) that may predispose a women to having these problems:

· Genetics – a grant has recently been awarded to allow researchers to explore a link with certain genes that may cause an increase in the proliferation of nerve cells and irritant cells in the vulvar area, and genes that effect protein synthesis in these areas.

· Mast cell proliferation – these are the irritant cells mentioned above. Everybody has them, they are largely responsible for that histamine response you get from allergies, but for some reason they seem to be overly abundant in certain areas in certain people. They have proven that there is a hyperactive mast cell response in the bladder lining of interstitial cystitis (IC) sufferers.

· Chronic yeast infections – the constant irritation can cause the nerves to become hyper-sensitive, causing pain and irritation, even after the yeast is long gone. And please remember that thong underwear can carry yeast and other bacteria from anus to vagina very easily.

· Lichen planus, HPV, various bacterial and viral conditions.

· Contact dermatitis – This happens when a product irritates the area, and the nerves remain sensitized even after the irritant is gone. Soaps, perfumes, toilet paper, dyes in clothing can all be irritating. Here’s the kicker: many of the products we use to relieve vaginal itching or burning are hugely implicated in contact dermatitis. Anti-yeast creams are the biggest culprits, and so are anti-itch creams. Even prescription ones are considered to be causative factors. The safest way to handle a yeast infection is to get it cultured before taking ANYTHING, use the most appropriate treatment as recommended – but only once! If you are very sure it is yeast, and you use an over the counter medication, if it doesn’t work be sure your doctor knows what you tried, and the experts recommend that you not use a prescription cream if the over the counter doesn’t work, you are better off to use an oral medication.

· Pelvic Floor Dysfunction – O.K.; if you read this blog even occasionally, you knew I was getting to this. Pressure on the nerves from tight muscles can irritate the already hypersensitive nerves. Trigger points within the muscles can set up pain patterns that mimic vulvodynia pain when the muscle is stretched or tightened. Guarding (tightening up the muscle in anticipation of pain) can lead to vaginismus.

So what do you do? FIRST – go to a doctor! The most important thing is to rule out conditions that can be treated medically. If all the cultures come back negative, it is time to start working on the symptoms.

As a physical therapist, I help you try to eliminate pain. We use biofeedback and visualization techniques to teach you to relax that pelvic floor, and take the pressure off the nerves. We work manually (internally and externally) to eliminate trigger points and to improve the muscular balance around the pelvis. We use electrical modalities including therapeutic ultrasound, and electrical stimulation to help relieve pain. We educate you about avoiding irritants (diet, chemical, mechanical). Once the pain level is controlled, we teach you how to stay pain free, or manage flares as they arise.

A side note on my own personal treatment philosophy: The most effective way to deal with pelvic floor muscle tightness is to work internally on trigger points and muscle spasms. Many of my vulvar pain patients cannot handle vaginal work, and are so uncomfortable with rectal palpation that the costs out-weigh the benefits. With these women, I use as many indirect techniques as possible until we have achieved a comfort level with internal work. With manual therapy, you may experience some extra soreness the next day – but several days (or even two) of agony is too much, and not (in my mind) effective. It is imperative that you talk with your physical therapist during your treatment, don’t undergo weeks of “torture” because you think it might help. If you don’t tell your PT how painful it is, she will assume everything is just dandy. Chances are if she is aware of the problems you are having, she will be able to modify the treatments.

All of this is in cooperation with your medical team. There are medical interventions to help relax the muscles and control the nerve pain, and depending on the acuity of your condition, sometimes the medical interventions are what make it possible for me to do my job.

Mind Games

“It’s mind games, and he’s already starting too early.” –

Kurt Busch

Chronic pain is a difficult burden. The effect on the lives of patients, families and loved ones is profound. Suffering a debilitating condition, especially one that is poorly understood, with treatments options whose success rates are measured in “percent improvement” in an individual, rather than “percent of cures” in a population, can be very stressful. Emotional, physical, mental, and financial stress all play a large part in the lives of those that are touched by these conditions.

I often recommend some sort of psychological counseling to my patients. I do this because I know that our minds and our relationships are often not equipped to handle the stresses that come with living in chronic pain. A good therapist will help you cope with the pain; a family counselor can help you and family members understand the effects of the condition, and work as a team to live full lives; a certified sex therapist can help you and your partner have a satisfying, fulfilling sex-life, despite your physical limitations.

With all of that said – I’m going to get on my soap-box and do a little rant about chronic pain, especially chronic pelvic pain, and how it is often viewed in the medical community.

Until very recently Vulvodynia (pain in the external female genitalia) was listed as a psychosomatic disorder. Somatization disorder and somatoform disorder are two disorders characterized by pain without pathological cause, or pain that presents as more intense than physical findings warrant. Both of these conditions are a sub category of hysteria, a psychological condition. On a historical note, hysteria literally means “wandering uterus.” It was often diagnosed in the Victorian era as a condition in which the “humor” or essence of the uterus wandered around in a women’s body, eventually reaching her mind, forcing her to act in a bizarre and decidedly undignified manner. There was no similar pathology in men.

Diagnoses of somatoform disorders are rare, but it is often suspected by doctors, especially by doctors who are not psychiatrists. It is a product of medical education. We want to be able to fix people. We believe that our education has equipped us with the tools to do that. When a patient presents in ways that we cannot figure out, or does not responds to treatments that we KNOW should work, it is pretty easy to blame the patient. In her article: “Sex, Lies, and Stereotypes: Women and Interstitial Cystitis,” in the Journal of Sexual Health, Denise C. Webster of the University of Colorado does an excellent job of pointing out the cultural differences between the patients that describe their symptoms, and the physicians that interpret them.

Here are some of the reasons that it is difficult to get physicians to take the very real pain that you are feeling seriously. Somatization disorders are characterized by eleven symptoms. More than two of these (with absence of obvious pathology) will send a red flag in some physicians that there might be a mental component to the problem: nausea, vomiting, fainting, headache, forgetfulness, dysmenorrheal (painful periods); abdominal pain; diarrhea/constipation; dyspareunia (painful intercourse); loss of sexual desire; fatigue. This is a big list, but it is a seriously inter related list. If you have interstitial cystitis (IC), chances are you have or have had some sort of pelvic floor dysfunction as part of your symptoms. A high percentage of IC patients also have migraine headaches, irritable bowel syndrome, and/or vulvodynia. If you have one or more of these conditions, and you start to tell your doctor your symptoms (and remember, he asked!) by the time you are half way into your list, you have probably ticked off three or four or more of the “red-flags” of somatoform disorder, and he has already quit listening to your symptoms, and is trying to figure out your dosage of anti-depressant or anti-anxiety drugs.

The good news is that many doctors are becoming more educated about chronic pain, and about chronic pelvic pain. But what do you do when your doctor is not listening, and you feel like no one believes that your pain is real?

If you feel like your physician is, in general, a good doctor and someone you want on your team, try to educate her. Schedule a time to see her when things are least busy, let the office know that you want a conference or consult, not just an appointment. Come prepared, and try to move the conversation quickly, look at this as a problem solving or brainstorming session, not a chance to vent or criticize previous encounters. Let her know up front that you admire her as a doctor, and appreciate her help; but, be very firm that you feel that she has not done enough in trying to diagnose the cause, or find a treatment that will help. Ask her what your options are, and if she feels she has tried all options, ask for a referral to someone else. If you have done your research, and know of other options that you think may help, bring them up. Your doctor will either explain why she has not used that with you (be sure it is an explanation that you understand), or will admit lack of information, and agree to research it for you. If your doctor dismisses your ideas out of hand, without explanation, it may be time to doctor shop.

Be clear that you know your body. Your pain is real, but not insurmountable. You need a team that will help you live well, choose them carefully.

nICE & HOT

Heat or Ice?
It’s a question I get a lot, and the answer is always the same: “That depends.”

They are both simple thermal modalities that have surprisingly profound effects on your body’s tissue. Both will (sometimes) reduce spasm. Both will (sometimes) quiet hyperactive nerves. Both will (sometimes) relieve pain. Heat may make an inflammatory response worse. Ice will not. Heat will never give you frostbite. Therapeutically applied ice won’t, either; but I’m trying to be fair.

Heat increases blood flow to the area. This opens the capillaries (the smallest part of your blood vessels, where oxygen is actually delivered to the cell). This increased blood flow and opening of the capillaries is what gives your skin that pinkish color under the heat pack. As the tissue warms up, you start to sweat, so your skin is doing its job of keeping you cool. There is a reflex message to the underlying tissues to relax, and let go. Sometimes your body is not happy about the surge of blood flow, and you get a rebound of increased inflammation and pain after the soothing effects wear off. If you are one of those people that says: “heat feels good, but about an hour later, I am in worse pain,” then heat may not be your best option.

Ice increases blood flow, also; but not right away. First the capillaries contract (get smaller) and restrict the blood flow to the tissue. As your tissue become accustomed to the cold, the vessels slowly expand, allowing more blood into the area, trying to warm things back up. This is why if you take the ice pack off in the first few minutes, the skin is white (constricting), and if you wait ten minutes or so, the skin is red (expanding). In the meantime, the reflexes are telling the nerves to calm down, and the muscles are not getting all of that aggravating input from the hyperactive nerves, so they are starting to loosen up. The bad news is that some people are very sensitive to ice. If you are someone that has a really strong, painful reaction to ice; try heat.

Ice is not so bad, in fact I always tell my patients to try it, and it may become your new best friend. (I’m not supposed to have favorites, but I love Ice). It’s a tricky friend, and there are some things to be aware of:
The sensations from ice application come in stages, and if you are aware of them, it won’t be so scary:

1. Cold – duh! It’s an ice pack


2. Burning – some people miss this stage, but for others it can literally feel like you lit a fire under the pack


3. Achy – really achy. There are lucky people that miss this stage. I always feel like I have a giant toothache wherever the ice is. Having someone around to listen to you whine during this phase is always helpful.


4. Numb – Yay! Success! This is the point right?

Now – the whole process should take about 10-15 minutes. If after 20 minutes you have worsening burning or aching – give it up, it might not be the best thing for you.

If the tissues are really constricted, and the object is to increase blood flow, I like to use contrasting heat/cold. Heat for 3-5 minutes. Ice for 3-5 minutes. Repeat for 3-5 cycles. End with ice, to avoid increasing inflammation.

Safety considerations for heat and ice:

• Never fall asleep on a heat pack. I have seen some nasty burns.


• Moist heat is more effective than dry, but can feel comfortable even when it is too hot. If it is AT ALL uncomfortable, get extra padding, or turn it down if you are using an electric pack. (same with dry heat)


• Ice packs are not designed to be constant wear. Take it off after 20 minutes. Put it on every hour if you feel like it, but give your tissue a break in between.


• When heating things in a microwave – remember they are still cooking when you take them out. Test the heat with the back of your hand before applying the pack, and remember that “a little too hot” is still too hot.

What to do with all of this information?
Experiment.

Muscle spasms and cramping tend to respond really well to heat, but I have a lot of patients that prefer ice. Inflammation (swelling, redness, painful to touch) tends to respond well to cold. If you can’t tolerate cold, try cool – it is not quite as effective, but you won’t go through the burning, achy, painful thing either.

There is a wide variety of shapes and sizes of heat and cold packs out there. Shop and compare prices, you can search the internet, or check out your local medical supply or pharmacy. I always go to IC Relief, just because I know the owner, and she is really knowledgeable about Interstitial Cystitis, Pelvic Floor Dysfunction, and Vulvodynia. I especially like the contour style pack (also called “cervical pack” on some sites) because you can use it bikini style across the lower abdomen and bladder, or lay it long ways from the sacrum to the pubic bone, cooling (or heating) the external genitals. For many of my patients, I will put them on a large pack on the low back, a contour over the bladder, and another one between the legs against the pelvic floor.

Internal heat and cold:
This is important for pelvic floor patients. Many of my patients have a much more successful session if they are able to use some sort of internal cooling device after a session. Again – I love the EZ-Fit from the IC Relief people. Read the safety considerations carefully, with this or any product you use internally. Remember that the rectum and vagina are lined with mucous membranes; there are more blood vessels, and less protection than in other areas of the body. Use cool and warm, rather than hot or cold. Moderately warm to your hand will be too hot internally. If you use ice internally, it needs to be something small enough that it melts or warms up fairly quickly (5 minutes of cold, up to 10 minutes of cool). Contrast hot/cold is great for the pelvic floor.

I have patients that use a frozen tampon – be careful if you are sensitive to bleach or the chemicals sometimes used in them.
I tried the frozen condom – too cold, too hard, too big.
The finger of a rubber glove (kitchen variety) filled with water and frozen may work.
Please let me know if you have other ideas, and post them as comments. I know everyone would like to read your ideas!