They say no news is good news and I had been living under that blissful ignorance for a few months before some news crept in and crushed me. I used to say I felt like I was in the gutter, aiming for an accessible curb cut, but the past few weeks I’ve felt buried under an avalanche while knowing there won’t be a rescue team. Best I can hope for is to drool on myself so I can figure out which way is up, then start clawing my way out. And sometimes, there’s just no way out.

Surprising to no one who has a rare disease and has recently tried to seek treatment from a pain management program, I came about drooling on myself as a response to my beginning treatment at the Johns Hopkins’ Blaustein Pain Treatment Clinic (or Program, depending on the literature).

I have had pudendal neuralgia, a very rare, very painful nerve condition, since 2002. This past October (2017), the condition grew worse after I moved into my new apartment. Packing, unpacking, shoving things around, maybe the combination of all of those things, made the pudendal neuralgia much, much worse. My physical therapist put me on”bedrest” (lying on my stomach) with an ice sheet on my ass. It’s two months later and it hasn’t improved, so I’m still stuck laying around, freezing my ass off.

That’s where the Johns Hopkins pain clinic came in — pudendal neuralgia is difficult to treat and the providers who do treat it are few and far between. So, my providers (physical therapist, orthopedic surgeon, regular pain management) sent me off to Hopkins. It took some time to get an appointment, which I finally had on December 22. It’s taken me two and a half weeks to feel comfortable talking about how that visit went.

Essentially, the doctor told me that I have the following treatment options:

  1. Physical therapy.
  2. Pudendal peripheral nerve block.
  3. Pudendal nerve decompression surgery.
  4. Sacral or pudendal nerve stimulation (neuro modulation).
  5. Intrathecal pain pump.
  6. The Johns Hopkins Pain Treatment Program.

And here are the problems with those treatment options:

  1. Physical therapy (pelvic floor and otherwise) makes it worse, not better.
  2. The nerve blocks rarely work, but I’m trying them anyway. I have my first one on January 18th.
  3. None of the doctors in my region who perform the surgery will accept my insurance (Medicaid).
  4. I can’t get this, as it’s an electrical device; I have a magnetic implant and the implant will not be removed.
  5. I can’t get this, as it’s an electrical device; I have a magnetic implant and the implant will not be removed.
  6. OMG so many problems, which I don’t want to get into now, but my insurance won’t cover it, anyway.

There are other out of state practices/doctors that provide other treatment options, but my insurance (Medicaid) won’t cover any of them.

And that, as they say, is that.

I’ve tried chiropractic care, acupuncture, acupressure, reiki, all manner of herbs and supplements, all manner of nerve pain medications, and none of that has helped. So, I’m currently at a dead end. Or at the bottom of an avalanche.

EDITED TO ADD: P.S. I somehow forgot to mention that I’m having a hysterectomy in February. Oops.