Thursday, May 1, 2014

No, it didn't work. Next!

The genitofemoral nerve block didn't work.  So I'm headed to a neurologist next.  And what do you know, they have a cancellation and I can see him tomorrow morning!

When I called to schedule my appointment and said "pelvic pain," the scheduler put me on hold for a while and came back and asked, "Were you calling neurology or urology?"  I have no idea why, in all these medical professionals' heads, pelvic pain is inextricably linked to the functions of the genitals.  That's like sending a back-pain patient to get his intestines checked.

Then she told me -- literally -- that "pelvic pain" doesn't exist in the neurology department's database, so she couldn't schedule me for a pelvic-pain assessment and would instead give me a general appointment, at which the doctor might be able to redefine my diagnosis so I could fit into one of their categories.

[pause.  mind temporarily erased.]

I'm preparing tonight by writing out a script, printing out the reports Dr. Westesson (the nerve-block doctor at Rochester) posted on MyChart, and stacking them together with Dr. Westesson's business card.  Basically, I'm gathering evidence so the man doesn't toss me back over to gynecology.

Tomorrow, I will be as succinct as possible.  I tend to dither when I talk to doctors, throwing out thoughts at random, whatever feels salient in the moment, and in the process -- I'm guessing -- vomiting up a school of red herrings.  No more.  Here is what I'll say:

"I've had pelvic pain since October 2006.  I've seen gynecologists, urologists, gastroenterologists, dermatologists, internists.  For the past year, I've been working with a pelvic-pain clinic in Rochester, New York.  Last year, I had nerve blocks along the pudendal nerve at the Alcock's canal and the ischial spine.  Those were not successful.  This year, the doctor tried diagnostic blocks along the genitofemoral nerve bilaterally and the ilioinguinal nerve on the right side.  The diagnostic blocks provided a degree of temporary pain relief.  The doctor ultimately tried a bilateral nerve block along the genitofemoral nerve, which provided no long-term relief.  He suspects that my pain is not coming from entrapment but instead from some other peripheral nerve pain issue."

This is what Dr. Westesson wrote on my last MyChart report:

"At this time [my thinking is] that she has pain/neuralgia [that] is not coming from a pinched nerve there.  I think she has another neurologic condition of her peripheral nerve which I cannot define."


"It seems her peripheral nerves in the pelvis area on the right...are hyper reactive and are sensitive to touch similar to what we can see in trigeminal neuralgia of the face."

I have a feeling that someday, pelvic pain will be widely understood to have a neurological basis in a good percentage of cases.  I've been searching the web for whatever terms come to mind and I've stumbled across a number of studies that suggest or identify this or that neurological basis for female pelvic pain.  Old studies.  New studies.  But apparently they are very quiet studies.  Shy studies.  Wallflower studies.  No one is asking them to dance.

My goal tomorrow, above all, is to be as sassy and persistent as possible, hatching my thoughts as they occur instead of incubating them for three days and kicking myself when I finally realize what I should've said.  Tomorrow I will access my inner... thought-farter.