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.