Not too long ago, I finished an almost hour long conversation with Linda, the nurse at Dr. Jerome M Weiss’s office in San Francisco. I had e-mailed Dr. Weiss this morning and he got back to me within a few hours, suggesting that I call Linda. She was knowledgeable, patient, and really personable. I sought out Weiss after realizing that, since corruption has its dirty hands in the healthcare system where I live—like it does with everything else down here—then I’d be better off looking out of state. I’m only on my parents’ insurance for a few more months and I also have insurance through school. This luxury is only going to exist for me for a limited time, so I’d better find legitimate help now.
Apparently, he takes a holistic approach to treating pudendal neuralgia and related conditions with conservative treatments and lengthy evaluations. Plus, he’s been practicing medicine since 1967, is experienced as they come, and is extremely empathetic. So I’ve heard. He’s a fossil with feelings. The combination of Linda’s confidence and Weiss’s impeccable online reviews makes me feel hopeful for the first time in ages. And talking about impeccable reviews makes me feel like I’m shopping for the best TV on the market. But that’s what our healthcare system is like. Many doctors don’t know how to treat pudendal issues and a lot of them like to pose. I asked Linda why she thought specialists were so far and between, and she responded with, “These younger doctors…there’s not enough bells and whistles in it for them.” I interpreted that to mean that it’s not an exciting enough profession. How can it not be though? It’s such a mysterious illness in the way that there aren’t definite reasons why it occurs. There’s so much research left to do.
And then I thought to myself, I can’t be the only one feeling so emotionally and physically isolated as a result of there not being enough practitioners who understand this disease. If there are others out there, I’d like them to tell their stories. On camera. I don’t think it’s enough to just read about the experience. You have to see a person’s day to day life. MTV did it with their “True Life: I Can’t Have Sex.” Although I usually think that the channel produces such drivel, I appreciated that episode’s ability to capture a realistic experience of what it’s like to have chronic pelvic pain. If there are others out there, I’d like them to tell their stories. Not since the airing of the series finale of Daria back in 2002 have I been so inspired by MTV.
Here’s the episode. Watch. In the meantime, I’m going to see if I can find people willing to share their experiences.
After about a month of physical therapy, I feel worse than before. It hurts to sit down. And the burning. The burning. These things didn’t show up until after therapy. Apparently, there’s a type of physical therapy strictly for pudendal neuropathy. The therapy I’ve been doing for the last month is for the lower back, but it focuses on core strength. These exercises put pressure on my pelvis, which puts tension on my pudendal nerve. It hurts. It didn’t hurt before. I’m switching to physical therapy specifically geared to relieving pelvic tension. I’m shopping around. It’s scary because I live in a place that isn’t really the best when it comes to healthcare or most other social services. I’m worried that I’ll eventually end up having to travel after spending a ton of money hopping from therapist to therapist in my area. If you have pudendal neuropathy, neuralgia, or entrapment, make sure your physical therapist is trained in pelvic issues. Make sure they understand your condition. Make sure they don’t do things that will make your pelvis tighter. NO KEGELS. They’re for tightening your pelvic floor. My therapist told me to do them. Terrible. A lot of people out there truly don’t understand this condition.
When I was 12, I got so sick that I shit myself. The same thing happened today. Except this time, I’m 25 and not sick with a terrible case of the flu. I have pudendal neuropathy. It’s such a rare thing that tumblr keeps trying to auto-correct the word “pudendal,” as if it’s a word I made up. It’s so rare, that most people have no idea what it is.
Everyone has a pudendal nerve. It’s a nerve that stems from the base of the spine and goes through the pelvis, innervating the penis in men and the vagina and clitoris in women. It also innervates the rectum, hence me shitting on myself. I just couldn’t feel it. I can’t feel much of anything. Not even my boyfriend’s penis. I can’t feel sex. It’s awful. All I can really feel is numbness and slight pain. Pudendal neuralgia means that my pudendal nerve is swollen, affecting its capacity for innervation.
I got into a car accident when I was 19, but my symptoms didn’t start until I was 21. They started off slowly at first, and I was able to hold off bad symptoms with physical therapy. I got into another car accident this past December. Not only were my symptoms exacerbated, but a recent bike ride has left me almost completely numb for the past month. Aleve used to help me, allowing me to have sex with my boyfriend maybe once a week and letting me forget from time to time that I can’t feel myself pee or the sensation of my underwear against me.
Since that epic odessy of a bike ride, my symptoms have only been held off for a week by steroidal anti-inflammatories prescribed to me by a doctor. He also prescribed four weeks of physical therapy. I’m going on my third week. If I don’t get better by week four, I’m getting an MRI done of my pelvic region. “And then we’ll go from there.” I’ve had three MRI’s, a slew of tests, and two doctors telling me that I need to see a psychiatrist.
It’s infuriating how men are seen as steady and legitimate while women are seen as naturally hysterical or emotional. I believe that exists in health care as well. Because a couple of doctors couldn’t figure out what was wrong, they put the problem on me and referred me to psychiatrists. It was humiliating to be made to feel like a hypochondriac just because these doctors were too arrogant to admit that they had no idea what was wrong and too limited in their anatomical knowledge to refer me to someone who would know.Three weeks ago, when I finally got a diagnosis, it was the first time I felt truly recognized as making a legitimate claim. But this physical therapy isn’t working, and I’m scared of what’s to come. I guess that’s why I wanted to start this blog. To finally talk about everything I’ve been internalizing.
And maybe there are others out there.