Friday, February 14, 2014

Actual tangible real-live progress

I told you that my blog would be my first stop if I made any progress with my pain, but I lied! My first stop was Facebook! I sat in the parking garage ticking off all the people I wanted to hide the post from, my fingers freezing... I posted something non-grammatical that people actually managed to read. I wanted to shout it to everyone I could all at once. If you and I are Facebook friends and you didn't see the post, it's probably because Facebook makes it awfully hard to pare down a post's audience...

So here's the full update: I saw Dr. Westesson on Wednesday. He's the doc who does nerve blocks at Strong Memorial Hospital in Rochester.  My new doctor at U of Rochester, Dr Benjamin-Pratt, sent me back to Dr. Westesson for a genitofemoral block after she and I discussed how the seat of my pain seems to be up front, under my bladder. Dr. Westesson and I talked over my case and said he would inject anesthetic only at the genitofemoral site -- along the panty line -- to see if numbing that nerve would take away my pain. It relaxed my muscles but didn't seem to work completely, so Dr. Westesson injected anesthetic to numb the ilioinguinal nerve -- more or less directly up from the genitofemoral site, a couple inches lower than the belly button. Kinda no man's land on the belly. That didn't seem to numb the pain completely either, though it numbed my leg enough to make walking a questionable venture. Dr. Westesson said there's a third possible nerve that he didn't want to try Wednesday but will try at another appointment. So I walked carefully back out into the hospital.

The third nerve I hadn't read about ahead of time, so I'm not sure what he said. Lots of etymology in there. I think it's the superior hypogastric nerve. I haven't looked into it much, but Dr. Westesson said it serves things in the lower abdomen -- uterus, bladder, etc., but not the skin itself. Okay, pause here: he is SUCH a good doctor. He's the first doctor who has listened to my saying, "It feels like the pain is somewhere right below my bladder." He didn't focus on the vestibulitis, the pain in the vestibule. I feel like vestibulitis is a trendy thing right now. It's interesting that if you poke someone's vestibule with a Q-Tip, it can feel like a knife. It's observable. But that doesn't mean it's the root of our pain. I think it's probably a symptom for a lot of us, not root. For me, I think the muscle tension I developed trying to keep my original pain in check caused my vestibulitis. It's something I grew into -- it wasn't there at the onset.

So I was walking slowly back toward the hospital's main lobby, stopping here and there to sit. I passed the bathroom I had used on my way in and went in. I peed, and I had no pain from beginning to end. That hasn't happened since all this started. I could feel that I was peeing, but there was no pain.

I had some pain left floating right below my bladder. At the front of the pubic bone. At the "top" of my vulva. This little spot of pain floating there. So I kept walking back toward the main lobby and decided I would wait and pee again. In the meantime, I coughed and pushed my belly in, surreptitiously poked at my bladder, did things that usually cause a pain spike for me. Nothing. Or hardly anything. There was residual muscle tension, like a framework for the pain, but the center of it wasn't there.

I would have to pee again! Time was of the essence! I paced around looking for another bathroom. I don't even remember where I found one. I hardly remember what it felt like, but I remember this: standing in front of the mirror pointing at the stall looking like I had just conquered Mount Everest. I couldn't even wash my hands. I just stood there pointing.

Then someone came in and I washed my hands.

The window that I was pain-free down there was short. But that night, peeing -- if you haven't gathered so from my blog, peeing is excruciating for me -- my pain was still contained to this little spot floating right at the front of my vulva. Very similar to how it had been when this all started right as September became October in 2006.

I'll go back for a steroid shot. I trust that Dr. Westesson will have insight into all of this -- whether it's one of the nerves he's already tested or it's the third nerve that he hasn't tested yet. Whatever the case,

1) I think we found it.
2) I feel like a frickin' rock star with how persistent I've been at figuring this thing out. I feel like a rock star for asking for the genitofemoral block. For trusting my gut. For ignoring the naysayers and the doubters, doctors and laymen alike, and not letting this thing rest as minor, psychosomatic, overblown, unknown, TMI, inconquerable, or fate. It's entirely possible that steroid shots will not help the nerve recover. But now I have evidence for something I've known to be real all along. I have a doctor's corroboration -- an awesome doctor. And I have ideas. Maybe this is why diet influences my pain so much. If steroid shots don't help, I know diet changes will. I know squat about the nervous system, but I imagine an upset belly would upset the nerves within it.

Okay, that's all for now. I'm hoping they schedule me with Dr. Westesson in the next couple weeks... I'll let you know how it goes. In the meantime, it's time to get back on The Good Diet train... eeek.


  1. I'm really happy for you, and I know exactly how you feel. It's taken me 6 months of amitriptyline to get my pain under control and boy am I HAPPY !

    Your doctor is a GENIUS!

  2. I l-o-v-e Dr. W. Isn't he the best? And he takes all the time in the world with you and never seems rushed. I'm so happy to read that you're making even a little bit of progress. I'm set to see Dr. B-P next month. I was encouraged that you got on well with her and I hope that I will too. I'm considering the lowest dose possible for another injection, but I'm not quite sure yet given my reaction to steroids. Works for the nerve, not so much for the body. I'm also going to look into endometriosis, as I'm more than sure that I have it and it's causing a load of pelvic pain (different from PN pain) and I can literally feel the tugging of my organs. It's so gross. I've read that she specializes in endo, so I'm hoping she can be of some assistance.

    Hang in there,

  3. Esther, you are a frickin' rock star! I'm so happy for you. You have been fighting so hard and making the road a little bit easier for everyone coming behind you. I'm grateful for all the insights you have shared.

    About the nervous system, there is an absolutely excellent book, written for doctors and pain sufferers alike. It's called Explain Pain by David Butler, published by the Neuro Orthopaedic institute. Reading this book (I've read it three times so far and each time I gain something new and encouraging from it) has greatly reduced my experience of pain. One of the most important things I've come to understand is that there do not need to be any damaged tissues in your body for you to feel pain. This has been a revelation because in the past, when I've been in pain, I've thought that something inside me was broken. This caused me to worry, which gave me more pain, which made me more worried, and so on. Now I believe, in my case at least, that when I feel pain it is because my brain is trying to protect me from something that it perceives to be a threat to my body tissues. The central nervous system is like an alarm system. It goes off when your brain thinks you are in danger. Another important thing I've learned is that the changes that have occurred in my brain and body to make my central nervous system more sensitized are all reversible. This gives me great hope that one day my body will return to a normal level of sensitivity. The book explains it much better than I can. Try to get your hands on a copy.

    Finally, I just want to say that even if you experience some more setbacks in the future, for example if the steroid shots don't work as you'd hoped, please don't let that discourage you. You've made some real and important gains working with Dr Westesson and you will continue to do so even if there are some bumps in the road.

    Keep doing what you're doing, I'm rooting for you.

  4. I'm so glad to hear (to read) you've have a moment of relief. I'm from Spain, and still figuring out what's wrong with me, my diagnosis is Trigonitis, but that doesn't mean anything, well, yes that the bladder trigone area is inflamed. My symptoms are more like yours, maybe milder, but a pain in the ass (near..) anyway. Let us know about your progress, I love your writing.

  5. Jesus I am happy for you!
    Life is a wheel - things turn. To better.

    ; )