Friday, February 22, 2013


My appointment with Dr. Howard went well.  Almost exactly as I expected, actually.

I don't have much to say yet from an internal perspective.  So here is a quick rundown of the salient points:

- As I was shown to the exam room, my phone told me twice that I have an appointment today with Dr. Howard.  Then it emailed me to tell me I have an appointment today with Dr. Howard.

- Dr. Howard is nice.

- He had me stand on either leg, bend forward, bend backward, asked me if I had any pain with each position (only lower back when bending back). He also touched possible sensitive points around my hips and asked me if I felt pain there (a little).

- He did a Q-tip test, and it felt like he was jabbing my vulva with a razor.  No surprise there.

- He ran the wooden end of the Q-tip down my abdomen and also along the panty line of each leg.  Lightly.  When it went over my bladder, my clit hurt.  It surprised me that the nerve link between my lower abdomen and my clit is so sensitive, but I've always known there is a link.  (In my mind it's the "Do not step there, cat" link.)


- He did an internal pelvic exam, asking where it hurt.  My inner right side is super-sensitive, which I already knew.  My bladder is also sensitive from the inside.

- He told me he thinks I have pudendal neuralgia.  Even though I feel pain on both sides of my vulva, he thinks the nerve entrapment is on the right side.

- He lectured (well, two sentences) me about not taking Neurontin at night.  (I've been fatalistic about it.)  He told me to take 600mg at night and that it can still help even if I don't take it during the day.

- He says my abdomen pain (from the Q-tip test) could be due to entrapment of the genitofemoral nerve.  I hadn't heard of that one before.

- He thinks my hip pain is related to the nerve pain, maybe as a muscle reaction to long-term pain.

- He says my pelvic-floor muscles are out of whack and that it's a chicken-and-egg thing with pudendal neuralgia.  The muscles can cause entrapment  Personally, I think they've become a ball of awful trying to hold my crotch in place so it doesn't hurt.

- He says the urethral and bladder pain are more often related to interstitial cystitis.  This surprised me.  I had two urologists tell me I don't have interstitial cystitis.  But he says IC can look like pudendal neuralgia and vice versa, or they can occur side by side, so it's hard to tell.

- He told me I have to push to pee because of my tough pelvic-floor muscles.

- When I left, it was snow-pelleting like a giant bean-bag chair had just exploded, or something more eloquent.

I'm going back for two guided (with a CT scan) nerve blocks in the Alcock's canal and some other place I can't remember right now and I don't see it in the brochure, both for pudendal neuralgia.  If those don't work, we'll try the genitofemoral nerve.  I am also to Take My Neurontin Every Night.  In eight weeks we'll see how I'm doing.

I'm also going to revisit the pelvic-floor exercises I learned when I did PT a long time ago because it would be nice to pee more freely.  Sometimes it happens by itself.  I feel like it's in part related to what I eat.  Eating better would be good too.  Yeah, it would.

Thank you for your support.  I can't respond individually right now because I'm wanting to put it in the back of my brain and let it do its own thinking.  But it means so much to me that people care!  It seems so obvious that I should've come here to see Dr. Howard long, long ago.  I am angry about it.  But I guess it could never have seemed as obvious as it seems now, after finally meeting with someone who is the right doctor to treat me.

Now I'm in my hotel.  It is a treat-myself hotel in downtown Rochester.


There are two conventions here this weekend.  Special Olympics and Narcotics Anonymous.  It's a bunch of world happening around me.  It's noisy and busy and distracting and perfect.



  1. I'm glad you went -- hang in there! Come back to the blogosphere when you're ready. It isn't going anywhere. :-)

  2. I'm glad you have some answers now. Hopefully this is the beginning of a new journey towards feeling better.

    1. I hope so too. It's not going to be magic but it'll at least be a targeted process to help my pain, which is more than I've had before. Thank you!

  3. Esther, with all due respect to Dr Howard, in my case, when my pudendal neuralgia flairs, I experience severe bladder and clitoral pain. I too, was told it might be IC - until I discovered a PT who could relieve the pain almost completely by resolving trigger points on a tendon that connects the bladder with the pubic bone.

    I wish you all the best. I truly hope you find some relief in the course of treatment Dr Howard recommends.

    1. Dr. Howard did talk about physical therapy. It is on the list after the nerve blocks (both rear and genitofemoral). I'm sure I could do PT simultaneously, but I guess it's worth it to figure out if the nerve treatment alone helps. Thank you for your insight!

  4. Thank you for sharing your story - it helps more than you know. I've struggled with these challenges and it truly helps to know I am not alone. You are an incredibly strong woman. Hang in there, and I hope you've been able to enjoy some "me time" in Rochester.

    1. You're welcome! It helps me to know I'm not alone too. If I hadn't started blogging, I don't know that I would've found the communities I have (other bloggers, Facebook, and even Dr. Howard). I am so glad I can pass along that kind of support to you. Thanks for posting.

  5. I am glad that your appointment went well. Fingers and toes crossed that the treatment will help! Thank you for your candor in sharing your story. It makes me feel less alone.

    1. Thank you Gabriella! You're is a huge help to me too to know that there are other women out there going through the same thing :)

  6. I just stumbled upon your blog. I had a hysterectomy in January. I have had hip and leg pain for years. I have a history of endometriosis. My surgery was done by Di Vinci robot and my organs were stuck together with the endo. Since my surgery I'm having nerve type pain in my vaginal area. I'm quite certain that the pain involves the pudendal nerves, but I know i have to jump through the Drs hoops to get to a diagnosis. The only testing I've has so far is an MRI, in which I have no results yet. My heart goes out to you. It sounds like you've been suffering for some time. I wish you well.

    1. Wow, that is quite a story! I'm sorry that you're having pain now after your surgery -- which was probably intended to correct previous pain? I hope that you can find the right doctor to help you with the nerve pain. I hope there aren't too many hoops to get there, too -- that can be so tiring. Best wishes to you in finding the right treatment.