Monday, November 12, 2012

Mid-experiment update #2: Practically painless pee!

I have one more day left in my "lie down constantly" experiment.  I am tired of lying down.

However!  When I pee, it hardly hurts!  And this is amazing.  It hurts to start, and then the pee flows without any pained sensation.

When I was sick in 2009 and spent 10 days in bed (half of them because my voice hadn't come back), I had to stick to what was in my fridge, which happened to be mostly gluten-free bread.  I had looottss of toast for several days, and I think that contributed to my lessening pain.

This time, I've tried to eat pretty much like I would every day, in order to keep that variable constant, and as usual, I've seen some up & down that seems to be dependent on what I eat.

For example, I had some cereal yesterday (Honey Chex), and shortly after, my pain went through it's little leveling thing until I had burning where the burning had disappeared.  Screw you, sugar!

I think I'll leave this experience with more motivation to eat well, but we'll see if that actually happens.  I just hate choosing food.  If someone puts something in front of me, I'll eat it.  But choosing food means choosing whether to avoid things that I know might cause me pain and how to avoid them and what to eat to fill in the gaps, and that takes a LOT of willpower, and when you expend willpower, you want to eat SUGAR.

I more look forward to continuing my quest to find the right doctor and the right treatment.  My current thoughts:

Cleveland Clinic
I live in northeast Ohio, and the Cleveland Clinic surely has a fine neurology department.  But as we know, even in the right department, you might not find a doctor specialized enough to treat a relatively unknown condition like vulvodynia.

Cle Clinic has a pelvic-pain department, and as I've written, that guy told me my options were tricyclic antidepressants, lidocaine, botox, and surgery.  These are all viable suggestions to treat the pain, but they were his ONLY suggestions.  I was frustrated that there was no inquiry into what the root cause might be.  But my biggest objection was that he suggested a vestibulectomy even though my pain is not localized to the vestibule.  I wanted to kick him for that.

The Clinic has disappointed me overall.  I've visited practically every relevant department except neurology and there has been no coordination between departments, no formal diagnostic process, nothing.  Vulvodynia is a fall-through-the-cracks condition.

The Clinic makes the most sense since it's right here, so I will take a look at the neurology department.  However, I'm not going to do another uphill battle with them. If there's no sign that I'll get specialized treatment, I'll go elsewhere.

Summa Health in Akron
Dr. Lara Burrows, who studied under Dr. Andrew Goldstein, the godfather of vulvodynia, works out of Summa Health Systems in Akron, which is right next door to Cleveland.  Her specialties list vulvodynia.  Her papers deal with pelvic pain, but they don't directly study my version.  She has, however, studied belly-button pain as it relates to vulvodynia!!!!!!  Which I observed too, in a one-person study.

So she's on my list.  If I decide I want to see her, I'll ask about specifics first.  I get excited that she is so close, and then I freak out because of all of the stupid experiences I've had over the past six years.  I don't want to hear, again, that it's a mysterious condition and I have lame options.  I read a lot of blogs and there are plenty of treatments I've never been offered.  There are others I've asked for that have been pooh-poohed.  I think that's why I'm leaning towards seeing a neurologist.  Go in with a mystery condition, get a mystery treatment?  No thanks.

There are probably other options in the area, but I haven't looked into it in a while.  That's on the list.

Pudendal Neuralgia Specialist
Honestly, this is my dream.  And because I'm putting so much on it, it'll let me down.  Right?!

I don't know if I have pudendal neuralgia, but I have most of the symptoms.  In fact, it's the most accurate description of my pain that I've read.  For example, it includes pain during urination, which vulvodynia and pelvic-pain descriptions don't usually include.  Pain with urination is usually described as urine running over the vulva, not to urethral pain itself (pain from urine running over the vulva -- I am with you there too, ladies!  Insanity!).

Ooh, every time I read the symptoms of pudendal neuralgia I get excited!  So really, my instincts tell me to find a specialist who assesses and treats pudendal neuralgia.

Last I looked (which was a couple years ago), the specialists are scattered around the country, and there aren't any in the state of Ohio.  One of the closest ones is in Rochester, NY.  So, please let me know if you've worked with a specialist who has helped you, especially if it's someone who specializes in pudendal neuralgia or other forms of lady-bits neurology.  Even if they are prohibitively far from NE Ohio.  If I get a bunch of names between you guys and my own research, I'll put them in a blog post.

So that's my news today...tomorrow is my last lying-down day, and I don't know how much lying down I'll actually do.  My bed is not that comfortable, and my back is not too happy.  I also read really slowly.  It might be faster for me to listen to a book! LOL.


  1. You asked about pudendal neuralgia doctors -- I've seen three, two of which I'd recommend. Dr. Richard Marvel in Baltimore is an excellent gynecologist who specializes in treating patients with chronic vulvar pain and those with chronic vulvar/vaginal infections. The other, the one who did my pudendal decompression surgery, is Dr. Michael Hibner in Phoenix. He's also a gynecologist and a very good surgeon - I'd recommend him highly. The last one is Dr. Antalok in Minneapolis who I would def not recommend.

    One of the very first things to do is get a 3T MRI of (1) your bilateral pudendal nerve read by Dr. Hollis Potter at the Hospital for Special Surgery in NYC AND (2) both hips (checking for labral tears, FAI, hip dysplasia). I've tried every conservative treatment and had pudendal surgery and still have pain; I just found out I have chronic labral tears, FAI and mild dysplasia in both hips. I don't think I've heard of/meet one woman who had a diagnosis of pudendal neuralgia/vulvodynia and then went to get her hips checked out, that wasn't then found to also have labral tears/impingement, etc.

  2. My post was so long that I just ended up sending you an email about Dr. Fred Howard.

    And I'll say it: the man is a saint!

    My PN is infinitely better having been under his care for two years.

    Let me know if you didn't get the email. Hopefully I had the right address.