The female fire

There's a reason I won't see male doctors anymore. They don't get it. Even those who are by nature quite sympathetic, will only grasp women's health issues in the abstract. There's the biology--that's pretty straightforward--but they have no real understanding of what it means to be unable to function as a woman because your body seems to physically block out sexual contact. How our pain affects us in our day-to-day life is not taken all that seriously by those of the opposite sex. For them, it's just another icky thing somehow connected to that monthly inconvenience women are always bitching about.

Not all women doctors get it, either, but at least they're able to conceptualize the problem on a personal level. I said not all, though. Sometime in the 1990s, my mother sent me a book. The author was making the rounds on public television where she was espousing Women's Bodies, Women's Wisdom: Creating physical and emotional health and healing by Christiane Northrup, MD.

My mother sent me the book and said it was just what I needed. Two other people had recommended it as insightful and empowering. On a Saturday night in the summer, I sat on my back porch and started to read. I read Northrup's case studies of women who suffered with undiagnosable abdominal ailments, periods out of control, and recurring infections. We have the power to make it stop was her message. Oh, really? Obviously, I had been trying, so what was Northrup going to tell me that was new? What, indeed.

In the case studies, Northrup pointed out again and again that we just had to want to get better. Our maladies were really just the result of our own out-of-balance lives, our deepest intuition we were choosing to ignore. Break up with the boyfriend who doesn't support you and the menstrual pain will stop; bring your life back down to size and abdominal pain will follow suit; address your inner demons/trauma/career choices and your body will stop expressing its distress through your reproductive system.

The message was clear. Despite my lifestyle change, avowed singlehood, ambition, and attempts to get answers, Northrup was telling me that my pain was my fault. It was the result of my subconscious attempts to sabotage myself. My pain was there because I wasn't trying hard enough to address my deepest emotional pain.

Fuck that. Anecdotal case studies without solid science just pissed me off. It seemed like Northrup had found people whose situations proved her point instead of finding people and then finding out what the point was. I closed the book and threw it in a box, where it still sits today, more than a decade later. It is not my fault. I've been known to achieve some formidable accomplishments, but not even I can spontaneously conjure up parasites in my vagina. I wouldn't even know where to start.

Here is the first paragraph from Amazon.com's summary: Quite possibly every female over the age of 12 will find this huge book enlightening, pain saving, and perhaps even lifesaving. Think of it as a much more empowering and holistic Our Bodies, Ourselves...In Women's Bodies, Women's Wisdom, she covers the treatment of many physical concerns--among them PMS, menstrual cramps, breast cancer, fibroids, endometriosis, infertility, depression, childbirth, abortion, cystitis, and menopause--explaining how many of these physical problems have roots in emotional upsets. For example, a woman who is unhappy with her marriage may be infertile because deep down, she knows that her husband is not the right man to have children with; a teenager who has cramps may be having problems accepting society's expectations of her as a woman.

A woman with chronic pelvic pain may actually be of sound mind and have a medical condition, Christiane.

I can only imagine what she'd have to say about bipolar disorder. Maybe she's a Christian Scientist. Maybe she's a Scientologist. I wonder if she knows Tom Cruise?

I digress. All these years have passed, and my pelvic pain has never gone away. I don't remember what intimacy is, because my husband and I gave up on it quite some time ago. If you were counting in days, it would be in the many thousands.

To my benefit, I have a good gynecologist. Actually, she's nurse midwife, and I chose her for just that reason. Nurse midwives are excellent listeners who have a certain appreciation for a woman's pain. They have a refreshing philosophy about women's health, and they do not believe that any degree of pain is normal or should go unacknowledged.

Jessie the nurse midwife has been trying to get me to go to a urologist for years. I never went because I felt that after so may times being told there was nothing wrong with me, it wasn't worth the embarrassment or the money to see a specialist--especially a specialist whose specialty I didn't really understand.

Jessie and I talked a long time about my pain. She asked about my bipolar and inquired as to why I had decided to pursue treatment. I told her that I wanted to stop the pain, the discomfort, the arduous climb each day had become. I also said I wanted to stop being a burden to those I loved and a nuisance to everyone else. After my last heart-to-heart with Jessie, I made the appointment with the urologist.

The doctor is a woman and she is consistently voted by her peers as an outstanding practitioner--top three in the city--year after year. She is in her 50s, crisp, business-like, and full of information. She is a teacher and it shows. As she performed the most vigorous pelvic exam of my entire life, she talked nonstop about what she was poking around for. At one point, I cried out and said, "You know, that's gonna hurt for days." She told me that wasn't normal, but she knew why and what we were going to do about it.

"May, you have three things going on, and any one would have had most people in here a long time ago. You're right that when this started, docs didn't know what it was, and even if they did, there was no treatment. Most of what I know about this I've learned in the last 12 years."

"First, you have Interstitial Cystitis, what we now call Painful Bladder Syndrome. You very likely have a lot of scarring in your bladder wall, which causes pain and stops the wall from expanding properly. This is triggering another condition called Pelvic Muscle Floor Spasm. This condition is not widely understood, but we know it's painful and once it's been activated, it becomes easier and easier to trigger. Now, the third condition is actually quite rare, but you've done an excellent job of documenting your symptoms and the course of your disease. This is something that usually comes about as the result of a difficult childbirth, or injury to the lower back, pelvis, hips, or legs. I know you said you've never had an injury like that, but this condition is also seen in people who are or were high mileage cyclists. We do know for sure that you have to have a genetic predisposition for it. Do you have Irritable Bowel Syndrome?"
"Yes."
"Do you get migraines?"
"Yes."
"Hmmm. We know there is a connection. People with your condition almost always have migraines and IBS, but we don't know why. Nobody has figured out the link, only that there is one. It's all part of a big mystery wrapped up in the central nervous system. Even your shingles outbreak came from your central nervous system."

I was trying to follow along despite the now flaming pain in my female area. Damn that central nervous system. "Does my condition have a name?" I asked. "Yes. It's called pudendal neuralgia. It's going to take a while, but it can be treated." (Note: My brother also has this condition. He's a cyclist.)

So, here I am with three diagnoses and three more prescriptions to my name. First, Lyrica, an anticonvulsant used for neuralgia. It is advertised as a treatment for fibromyalgia, but it was actually developed to treat diabetic neuralgia and....tad dum! Shingles pain! I have nothing to lose by taking this one.

The second medication is called Elmiron, and its sole purpose is to recondition the bladder wall in patients who suffer from Interstitial Cystitis.

The third medication is hydroxyzine, an antihistamine that calms the bladder's reaction to irritation. Perhaps it will address my springtime allergies, too.

I also need to undergo physical therapy. This will be a type of trigger point therapy performed by a specialist. I looked it up and this therapy is...internal. For a moment, I envisioned a scene from the movie, The Road to Wellville, wherein women shed their malaise after "internal manipulation" at the hands (literally) of Dr. Spitzvogel. I can't explain more; you'd just have to see it.

The last thing I mentioned to the doctor was that I was going home to sit on an icepack. She handed me some photocopies and said, "There's a better way. Read this and take care of yourself."

One of the handouts included instructions for dealing with post-exam pain. Advil...blah, blah, blah...no caffeine...blah, blah, blah...condom, KY, freezer...What??? I went over that part again: Fill a condom with KY jelly, tie it off and freeze it. Insert the frozen condom into the vagina to ice and soothe the sore area. Oh. Oh.

Oh, it was brilliant. Of course. It would be much more effective to use this item than an external ice pack. But what was it called? Jelly ice? Cool condom? Crotch-cicle? Twatcicle? Somebody needs to perfect this and patent it. I wish I had thought of it--or at least heard of it much sooner.
This latest bout of health news has me dragging. More drugs. Therapy. More doctor appointments. No real immediate relief. Continued chronic pain. Drowsiness from medication side-effects. Enough already.

I have enough health messes going on iin my one body for an entire village to bear. I have far more illness and health-related quirks than one person should ever have to handle. There definitely needs to be a new policy, and I vote for a one-person-one-illness world. That seems fair to me.

Excuse me now while I fetch my very special frozen treat.