Thursday, April 10, 2014

Official genitofemoral block

Yesterday I had another appointment with Dr. Westesson at Strong Memorial in Rochester, NY.  He went back to the spot he tried in February along the genitofemoral nerve, along the panty line, as he thought that was the nerve block that helped in February.  The anesthetic took away a lot of the pain in the same way it did in February, though not to the same degree.  I peed, though, and felt no pain in my urethra even though my urethra wasn't numb.  If my pain were to improve only that far, only to the point of taking away my urethral pain, my quality of life would improve drastically.

Dr. Westesson said if I see improvement from these nerve blocks -- because he used a steroid as well, which is what would provide long-term improvement -- though that improvement will begin to show around two weeks from now -- I can go back to see him and we'll do a series of blocks.  If I don't see improvement, he suggested I find someone at the Cleveland Clinic who specializes in peripheral neurology.

His theory is that I might have overactive nerves all throughout my abdomen and no specific nerve entrapment.  That makes sense to me.  I wish it were true that a simple nerve block could treat my pain, but I don't recall an injury to my abdomen that would've caused, for example, a build-up of scar tissue that would've put pressure on a nerve.  I do have specific hip pain on the right side on the panty line, and the doc said that could be related.  The genitofemoral nerve runs right along there.  He described how the pain can kind of slide back and forth along a nerve...

But I had years of severe IBS leading up to the start of my vulvodynia... and though the IBS actually let up a few years before my vulvodynia started, I continue to have a sensitive stomach, and the best I ever, ever, ever did in ameliorating my pain was eating simply.  Bananas, potatoes, eggs, fish, rice, green vegetables...  I've always had this feeling that if I could sustain that diet for a long time, like a year or more, my pain would go away.  But dear lord, you have to BELIEVE that to be able to stick to a diet like that.  While I believed it, I did it.  When I stopped believing, I couldn't do it anymore.

Well, I'm going to do it again either way...  One thing that helped was that at that time, I was reading a ton about self-discipline and personal development.  And I was in grad school, so my schedule was more open for me to cook and focus on my health.  I feel like a lifestyle change might be in order to provide a framework for me to focus on recovery...  I work in an office, which feels physically unhealthy -- stationary all day -- and I stare at a computer all day, so all my energy and enthusiasm are gone by the time I get home.

I think today I am really angry.  I'm angry at all the doctors who sent me away without trying to help me.  I'm angry at the people who dismissed my condition as... whatever.  I'm angry that this has fucked up my life so hard.  I'm angry that I have had no romantic life to speak of for the majority of this time, that sex was excruciating no matter how I tried while I was in a relationship, that I may not ever be a mother, that I may not ever be a mother because I can't risk a pregnancy with this pain.  I'm angry that I've switched jobs a million times trying to figure out a good place to be.  I'm angry that I left my favorite job because of a bully and a couple of gossips.  I'm angry at them, I'm angry at myself, and I'm angry at my former bosses for letting it go on.  All I want to do is run away, but there is nowhere to go.  I have no money.  If I did have money, I would drive around the country and camp and visit people.  I would put all the drama in my life outside of me.  I would put big things in front of me, single things, one at a time, and task myself with conquering them.  Because I am stuck, and the best I can think to do is to face down the abominable snowmen of the world in order to distract myself from what's going on inside.

Friday, March 14, 2014

Self-portrait with paper lantern, not balloon

I had to stay over in Rochester Wednesday night because of the blizzard.  On the way back I stopped to take a self-portrait

and I drove along Lake Ontario for a while to find a good spot that wasn't a farm, and it was very cold but I was a child in the moment, knees in the snow, face in the snow to check the camera angle, "and go!" running up a hill and having no idea how the shot would turn out, and wouldn't you know it, the paper lantern I bought at Target kind of worked as a kite but not a perfect one, dipping and twisting---

I didn't intend this metaphor.  All I did was go to Target for balloons and buy a paper lantern instead.  But the mind knows more than the person does.  Life is like running with a paper lantern.  You can run as fast as your legs can go, but the lantern does whatever it wants.  Its movement depends on so much more than your speed.

Still, while I was taking the photos, I thought if I could figure out how to run perfectly, I'd have the perfect photo.  But the lantern went all over the place, and I couldn't figure out how to take multiple shots at once on my camera because I haven't used it in so long so I only got one shot per run, and I did multiple runs trying to get this thing to fly, and I made changes to the way I carried my arms and the path I took and which side I held the lantern on.

I used the first pic.  It was the most honest.  There was no advance study; I just ran.  It's not the world's most perfect photo, but it turns out to be the most appropriate.

Dr. Westesson said today that I should schedule an appointment with him for trying the February blocks a second time -- an appointment with two slots so he can try multiple locations.  I think this will mean trying the ilioinguinal block again at the original point, a no man's land southwest of the bellybutton.  I'm not sure whether he will try a symmetrical block this time, both sides.

I started reading up on ilioinguinal nerve entrapment and got really scared and sad.  There are implications for pregnancy, for example, that I won't type any further about right now.  And all the diagrams are of men, which is stupid.  But I want to learn more about it to see if there's any observed link to diet.  I still have this feeling that if I could eat very simply for a long time, a year, my pain would resolve.

I'm hoping the results I had in February are repeatable even if the nerve block doesn't work long term.  I hope I feel the same relief, however short.  Knowing where the pain is coming from would bring part of this to rest.

Wednesday, March 12, 2014

"No dice.  I'm sorry" to the things that came with me.

Shower on. Soaps go on different parts of me. I forget which go where.

"Just do it the same. Just do it the same. Why didn't you do it the same? To corroborate."

The needle pricks are three inches away from before. I won't call it a teardrop, the shape of what remains between my legs.

Now he will consult with the other doctor. And they will flunk me. I'm not repeatable. Last time was a product of hope.

"All the hopes I had before weren't specific enough?"

Where are they?

The tech stayed with me waiting for a cab for an hour. I panicked, and then I panicked that I was panicking. I was lightheaded or forsaken. Maybe he will put a good word in for me with the doctors, tell them they should still believe in me.

I thought my grandpa was an angel, prayed to him specifically. What, I have more to learn? Is that it?

This is my Paris, you know? This is my marriage. This is my adulthood. All my rites of passage for the past seven years have come from my pain, all of them dictated, chosen by a silly little nerve that refuses to be found. That the universe refuses to find.

The doctor said if we find the nerve and it's in my belly, we can snip it and stop it forever. My life is a game of millimeters. My life is a game of permission. Does chance take me in or does it refuse.

When I was 18, I mused about how contained we are, never able to be sunsets except as dancers. But pain colors the dance. How can you be a sunset when pain colors the dance.

It's very hard not to run away.

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.

Monday, January 20, 2014

Another appointment in Rochester

Just finished my appointment with Dr. Amy Benjamin at U of Rochester, in Rochester, NY, where it is has snowed more than the "less than one inch" the weather forecast predicted. I'm going to leave mid-afternoon and see if I can make it past Buffalo, then Erie, then on to Cleveland.

I didn't have to get in the stirrups today! Dr. Benjamin and I just talked about things. I'm going to go back on the vaginal Valium, increase the Lyrica, do physical therapy, and get a genitofemoral block.

Physical therapy: I've been remiss in not pursuing it now that I have insurance again. I'm sure my pain has a muscle component as I've been clenching my pelvic floor for a million years trying to keep the pain in check. I think most of the pain in my vestibule is muscular.

Genitofemoral block: this is something Dr. Howard recommended when I first saw him. When he dragged the wooden end of a Q-tip over my lower abdomen, I felt pain down below in the area where the pain started (a nebulous area under my bladder). I asked Dr. Benjamin about it today and we agreed that it's something to rule out. I don't actually think it will help, but I don't like having it hang out there.

Speaking of the bladder... the doc said we can try Elmiron, which is used for interstitial cystitis, if I don't see a benefit from the current med setup. She emphasized that the meds for IC and vulvodynia and pudendal neuralgia often cross over.

I'm on 75mg Lyrica twice a day now, and I'll titrate up as high as I can go up to 150mg twice a day. The doc thinks it's a good choice for me as high doses of Neurontin help, and Lyrica has lower side effects.

Okay, c'est tout. Time to face the snow.

Friday, January 10, 2014


When I don't post on my blog for a while, people sometimes ask me if I've gotten better. Believe me, if my pain ever gets better, my blog will be my first stop.

I have an appointment in a little over a week at Rochester with my new doctor, Dr. Amy Benjamin-Pratt. Dr. Howard retired last fall, but I think it'll be good to see someone new. I'm currently on Lyrica, 75mg twice a day, and haven't seen any improvement. Dr. Howard didn't suggest physical therapy, but I think it would probably help, so I'm going to see what the new doc thinks. Everything seems the same...

I came across a discussion on Facebook about how a couple women had cryoablation done at University Hospitals here in Cleveland and both saw significant improvement from it. Basically the guy freezes the nerve through the vaginal wall. So I'll ask the new doc about that one too.

I'm feeling a little shitty about having medical problems whose validity people doubt because the problems are invisible. I know I've covered this one plenty plenty plenty on this blog. I don't have anything new to say about it. I'm just tired of feeling like a faker. Am I? Sometimes I start to think I am.

I've actually been feeling really good otherwise. I'm on a great med combo for my (fake?) mental issues. I feel more stable than I have since I was 14. It's awesome. The most striking thing is that I can see now that the thoughts I have when I'm not feeling well aren't real. The fears, the ideas, the self-perception. And actually, I understand now why people doubt the validity of mental illness. When you feel good, it's hard to conceptualize those bad thoughts -- even for me, someone who has had a lifetime of them.

I rode in an elevator! Two elevators! Multiple times!

But the best thing about this new stability is that now I'm thinking, "Okay, I'm here. What should I do with my life?" I've tried lots of stuff over the years, but everything I tried -- jobs, school, volunteering, avocations -- was layered over with the battle for my mental health. Now there's no battle. I have normal ups and downs -- and I remind myself frequently that they are normal; I've gotten used to attributing mood swings to mental issues -- and I have some anxiety, which might actually be my baseline. Those are so small by comparison. It's like the landscape is clear of the struggle, open for adventure in any direction.

My friend asked me what I'm going to do now.

Me: Right now I'm just thankful.
Him: That's a good place to start.

I'll come back here to post after my appointment. I'm not expecting any revelations... I guess I'm feeling resigned to this pain right now. But at least I'm in a better mental space to deal with it.

Wednesday, September 25, 2013

Post-doctor, skenitis #5

Just got done with my appointment with Dr. Howard, the follow-up to his diagnosing me with skenitis and putting me on a trial course of antibiotics for three months.

The Q-tip test showed that while I still have pain in the Skene's glands, the worst of my pain is now (or was today) in the vestibule. Dr. Howard pointed out (to me in the mirror) that I have slight tears at the 6 o'clock point in the vestibule. The worst of my pain is at a higher point on either side, however. He was encouraged that the pain in my Skene's glands is lower. I, of course, am wondering if the pain is just walking around!

I told him that I also have clitoral pain, which he said is almost always a separate problem from vestibulodynia. I said that my gut says that the vestibulodynia is due to muscle issues while the clitorodynia is due to something else, and he said, "I'll be frank with you -- that's usually the case."  He told me that clitorodynia is usually due to entrapment or impingement of the clitoral branch of the pudendal nerve.

Neurontin makes me sleepy at the doses I need to take it for pain relief, so the doc decided to put me on a tricyclic antidepressant -- Norpramin (desipramine). Tricyclics are commonly used for pain relief. There are two others if this one doesn't help or if the side effects are too bad. I'm starting at 10mg and will titrate up to 50mg or as far as I can go.

The doc told me he has a colleague in Phoenix (this guy) who does surgical release of the clitoral branch of the pudendal nerve. He said it's 30-65% successful (he always has these specific numbers) at resolving clitoral pain, and it's an option of I don't see improvement with meds and want a more definitive resolution to the problem. He said I'm not a candidate for the pudendal surgery they do at Rochester, but his colleagues at U of R have done hundreds (gahhhh) of vestibulectomies if I want to treat the vestibule pain by literally cutting it out of me.

An hour later and I get to drive another four hours back home.

I feel like today I've learned that my pain is not simple. I feel like I can step into some new territory where I have to deal in nuances in order to make progress instead of hoping for wham-bam answers.

I asked the doc if neuropathy ever resolves itself. He said that he's seen it when the pain is due to scar tissue and the like, but entrapped nerves stay trapped. So there is some hope that this pain will resolve if we get it low enough with the tricyclic (or with Neurontin), which I'll keep in the back of my mind but not rest on.

I think I will work on my muscles so I have a shot at getting the vestibulodynia to a lower level. That has receded when I've eaten well and when I've spent lots of time lying down, so I know it's possible. I guess that means I should work on my diet too. Oh dear! I want donuts!

I don't know if I have the energy to do all of this. When I was in grad school, I kept a spreadsheet of my pain and what I ate every day and made some real gains. I don't know why I have less energy now. I guess my life is kind if gray, and it wasn't then. 

So there's the next puzzle. How to get my energy back. My joie de vivre.