I haven't posted because I have not been able to frame what I have to say, tuck it up neat.
And I don't remember what my last update was about and don't want to review it.
Here is what I've done with Dr. Abdelmalak. This is all spaced out at intervals I also don't want to review.
- 2 left-side genitofemoral blocks. Result: no immediate relief from lidocaine, lasting pain reduction on left side.
- 2 right-side genitofemoral blocks. Result: immediate relief from lidocaine, no lasting pain reduction.
- 2 bilateral pudendal blocks. Result: no immediate relief from lidocaine, no lasting pain reduction except when he pushes directly on the pudendal nerves during an internal examination and they don't freak out like before. So, no subjective improvement.
- Two days ago, a right-side genitofemoral cryoablation.
#1: GET THE ANESTHESIA FOR CRYO! I have done all of these without anesthesia because they never offered me anesthesia at Rochester so I was used to dealing with the pain of the injection. But HOLY CRAP CRYOABLATION IS PAINFUL. It's the worst procedure I've had since my stupid lidocaine-only cystoscopy which later doctors have suggested was totally idiotic and absolutely not procedure and so I want to write a letter but I don't remember the guy's name and anyway I will just hurl stones at him psychically because I'm too depressed to look up the Urology Department's address.
They stick this giant needle in for cryo, and you can't see it because you're lying down but whatever he shows you the giant needle, it's like 10 times wider than a normal needle, and he gives you a little ice cube to make friends with, and you lie back, and they "bee stings" numb the site, and then they SHOVE SHOVE SHOVE the needle around until IT HURTS SO BAD YOU CRY and they hold it there for five minutes.
Funny part is, the pain didn't radiate to my vulva like it usually does when he pokes at my genfem nerves, so I'm not even convinced he found the right spot. But he said it wasn't supposed to radiate. But I'm still pretty sure it's not going to work. Because why should the right spot not radiate?
And yeah, next time, because there will be a next time, I will get the anesthesia. It doesn't put you under entirely, and you HAVE to feel the pain for this one because they can't find the right spot by looking for it with any device outside of your brain, but maybe with the anesthesia I won't cry and tell them how much I hate my life and they won't ask me if I still hate them when we're done.
#2: I am more depressed than I've been in a long time. I had a brilliant respite from depression and most of my anxiety for months, and it was beautiful, but sometime in early November -- actually, immediately after the time change -- I felt shitty, and the past two weeks I've missed 3.5 days of work due to depression's trying to drown me upon waking, and I have no words on this point beyond these because if I tell you more I will feel like sleeping and it's still lunchtime.
#3: I really thought the depression would lift after my appointment because my appointments seem always to cause my mood to ripple, but I feel like I'm still in a jacket of stones. So I guess I can't blame this one on procedure worries.
My doctor stressed to me that I am "normal," that I will be "fine," and I wanted to say, you know what, fuck you, you are not living this life of unknowns and constant pain and loneliness. And I like him a lot. And I think he was just trying to say that there is nothing "wrong" with me. Yes -- after the procedure, after the crying and frustration, he went so far as to say I am "perfect," and I almost cried again because that's what my grandma always tells me. If I could run away, maybe I would feel perfect. If I could remember what it is to be in this world, and all the color that is still available. But I am stuck under days of typing and waiting for skies to come and go, and there is no memory here.
Whatever your root cause, Vulvodynia, you will always be Vulvodynia to me. Happy Birthday! And Happy 6th to this blog! I have much to share but have been very busy. Gooood busy. I will blog about my progress soon. Yep, I said the P-word: Progress!
Here is a more comprehensive report of my first appointment with Dr. Abdelmalak in the Pain Management department at the Cleveland Clinic.
The most important thing I learned from Dr. Abdelmalak
I'm putting this first because it is the most important thing I learned from Dr. A., and I feel like everyone in the world should know this.
At the end of my appointment, I asked Dr. A. why food influences my pain. "Is it just inflammation?" I asked.
"No," he said. "And I'm glad you reminded me about that." He said that pain with urination and pelvic pain that changes depending on the food you eat are both symptoms that indicate you're at risk for developing interstitial cystitis. In other words, they are as metabolic syndrome is to diabetes: a state that, if it persists, is highly likely to develop into a full-blown disease.
Here is why this is so important: interstitial cystitis is terribly debilitating. Pain is a uniting symptom, but almost all people who have interstitial cystitis also have urinary frequency and/or urgency. These symptoms can be extremely debilitating, limiting where the person can go and how long she can concentrate, sending the person to the bathroom fifty times a day, and sometimes forcing the person into disability.
There have been occasions when I have had symptoms of a urinary tract infection -- urinary urgency and even blood in my urine -- without having an actual infection, but thankfully, such episodes have been very rare. I want to make sure that those episodes don't start occurring more frequently, and according to Dr. A., the primary way to fight it is to change my diet.
When I look back over the years leading up to the onset of my chronic pelvic pain, I recall episodes when sugar, for example, would cause a tingling or pinching sensation in or around my urethra. At the time, I just thought, "You dummy, you're eating stupid things. Stop it." But now I realize that those episodes were precursors to the pain that is with me today.
A couple notes related to the bladder:
- I had my (horrifyingly painful) cystoscopy performed at the same hospital with lidocaine in the area, no anesthesia, which I've now learned -- from the doctors in pain management -- is not standard practice at the hospital. Maybe things have changed in the five or so years since I had my cystoscopy, but hydrodistention of the bladder is usually necessary to observe physical evidence of interstitial cystitis, and it can only be performed under anesthesia.
- The polyps in my urethra that the urologist said were normal are apparently not normal, or at least not according to Dr. Abdelmalak. Note: Dr. A. originally trained as a urologist, so he has footing to dispute other urologists' claims.
The pudendal nerve
But there is a wider diagnosis at hand, according to Dr. A. After giving me a verbal tour of the pelvis from the skin on inward, he described the nerves that innervate the pelvic area. There are the ilioinguinal nerve, the genitofemoral nerve, the superior hypogastric nerve. But he settled on the pudendal nerve -- familiar on this blog.
He held his arms and said they represent the pudendal nerve as it runs down through each butt cheek and up either side of the groin. He stretched out his index, middle, and ring fingers, tucking his pinkies and thumbs in. The ring finger, he said, represents the branch of the pudendal nerve that innervates the anus and perineum. The middle finger represents the branch that innervates the vestibule (outside of vagina) up to the anterior wall of the urethra (most forward part). The index finger represents the branch that innervates the clitoris. (These branches go to different places in men, obviously, but there are still three branches.)
"The pudendal nerve is the most important nerve in the body," Dr. A. said after describing it. If something goes awry with it, he said, it makes your life hell. All these basic body functions become painful or otherwise corrupted -- urinating, having a bowel movement, having sex. You can't sit, your movement is restricted, you can't talk about it with anyone because it's in a private area of the body. Dr. A. pointed to other areas on his body where if one nerve fails, another one compensates for it -- the face, the arm, the leg.
But I was skeptical. The most important nerve in the body? What about the sciatic nerve, which I think is the nerve that allows you to stand up? What about nerves that provide sensation in the face, or those that allow you to swallow? But while my mind was practicing devil's advocacy, I was simultaneously elated to hear a doctor take my pelvic pain so seriously. If he thinks it's the most important nerve in the body, he's the doctor I should be seeing.
The examination & confirmation of diagnosis
Up until this point, Dr. A. had not examined me physically. But now he had me sit up on the examination table, legs dangling, while he pressed different points on my body and asked if I felt pain. The head, neck, back, arms, legs. He tested the strength of my arms and legs, having me push his hands this way and that.
He had me lay on my back to examine my abdomen. He pushed several different points before starting in on my lower abdomen. He pressed left to right in the area below my belly button, hip to hip, asking if I felt pain. No pain.
Then he pressed low on my left pantie line, and I jerked up from the table. The pain radiated out to my bladder, clitoris, and urethra like a painful swelling, and I suddenly felt like I was going to pee all over the table.
"Okay, so pain there," Dr. A. said. "That's the genitofemoral nerve." He pressed the center of that area, the part that generally hides behind your underwear, the area that is right over your bladder. Pain there, but not as bad as the left side. He pressed the right genitofemoral nerve, and while I felt pain, it wasn't like the left side.
Then he and the Fellow who was with him stepped out of the room so I could take off my underwear and get comfortable under a blanket for an internal examination. No stirrups, thank goodness. I just lay back on the table with my knees slightly bent.
The internal examination was of course awful, all of it. But it provided absolute confirmation that I have pudendal neuralgia.
The doctor first examined the outside of my pelvis. My butt cheeks bounced back, or something -- I really have no idea what happened here -- which he says means my muscles are good. He touched the surface of my vulva, and while I had pain in certain areas -- including the clitoris -- it wasn't even close to the pain that radiated from the genitofemoral nerve.
Then the internal exam. He pulled down at six o'clock on the vestibule. Ripping, tearing pain. He pushed on the anus. Some pain. He pushed on the bladder. Bad pain. Then he sought the pudendal nerves, first the right one. I tensed up. "Relax so I can reach it," he said. "Relax," the nurse said. I relaxed my butt, clenched my fists, and nearly screamed when he pushed on the pudendal nerve.
"Now the left side," Dr. A. said. He found the pudendal nerve on the left side and pushed. Again, searing pain. "Is it as bad as the right side?"
"I don't think so," I said.
He pushed the right nerve again.
"Yes, that one hurts more."
He removed his finger and said we were done, but by now all the colors of the pain were sliding over my vision and I was crying.
"Are you okay to concentrate? Do you need me to leave?"
"No, I'm fine," I said. The nurse rushed Kleenex to me. "The pain is just scary."
Where did it come from?
Dr. A. says I have pudendal neuralgia as well as genitofemoral neuralgia. He is betting the pudendal neuralgia is bilateral, but he thinks the genitofemoral neuralgia is on the left side only.
"Why do I have pain coming from two different nerves?" I asked him at the end of the appointment. "I thought neuralgia was usually due to injury to a single nerve."
"There are a number of possible causes," he said. He listed several, and I found I qualified for two -- sitting for long periods of time and having repeated urinary tract infections. Both were happening leading up to the sudden onset of my pain in the fall of 2006. At that point, I had been sitting at a desk job for three years -- which is certainly not a long time, but if a person is prone to such neuralgia, maybe it is -- and I had had two urinary tract infections in the previous six months, as well as a lifelong history of UTIs going all the way back to when I had just finished potty training.
Dr. A. prescribed a multifaceted treatment:
- Taking Gabapentin, working up to 300mg three times a day
- Taking Cymbalta, 30mg a day
- A bilateral pudendal nerve block performed with fluorscopy? which I had never heard of before
- A genitofemoral nerve block performed with ultrasound
And here is the BEST part, the part that sold me on Dr. A.'s sensitivity to pudendal neuralgia.
"Have you done physical therapy?" he asked me.
"Yes," I said. "But I only got one session in before my insurance expired." This was several years ago.
"What did you do?"
I showed him a few movements the physical therapist suggested.
"And did she work on the inside?"
"Yes," I said.
He used his thumb to massage my arm firmly. "Like this?"
"If you can't stand me poking your pudendal nerve for one second, how are you going to stand this kind of therapy?"
BAM -- the sky was clear. Internal physical therapy is a mainstay of pelvic pain therapy. Everywhere I turn, I read about someone doing pelvic-floor therapy. But here Dr. A. had hit the nail on the head, the reason why I have resisted the idea of such therapy from the get go.
[As a side note, I have done some muscle training on my own at home, lying on my back and resting my finger on my perineum (which doesn't hurt for me) so I can sense how tense my pelvic muscles are and remind them to relax. For me, this has been a great non-invasive way to understand the habits of my pelvic muscles.]
"Instead, for pelvic pain, I like to recommend aqua therapy," Dr. A. said. "That way you can get exercise and movement without putting stress on your body."
Woo-hoo! What a great idea. This guy is totally in touch. The whole appointment bowled me over.
"And if you're too afraid to be seen in a bathing suit and you don't want to tell me that now, just sit in a warm bath every day at home for fifteen minutes," he said.
Dr. Abdelmalak himself
Dr. Abdelmalak is an amazing doctor. Little things he said and did throughout the appointment made it so much better than any other appointment I've had about my pelvic pain. Here are a few, in case you're curious:
- He spent five minutes telling me how the appointment would go before he began
- He made sure I understood the underlying mechanics of the body
- He told me repeatedly that he is the GPS, but I know my body better than he does, so if I see a shortcut in my treatment, I should take it
- He also told me repeatedly that sometimes patients don't speak up at appointments, and he gave me alternatives in case I wasn't voicing a concern (such as the bathtub alternative above). No other doctor I've had has observed that patients sometimes don't speak up during appointments, while I've read report after report from patients about how they failed to speak up about a concern during a doctor's appointment
- The whole appointment lasted over an hour. I felt throughout it that I was important, that Dr. A. and the pain-management department took me seriously and cared about my well-being, that I was worth spending time on.
And at the end of the appointment, Dr. Abdelmalak told the Fellow, who was completely new to the department, "Now you know everything there is to know about pelvic pain. You should pay her!" It was funny, and I was happy to be a case study for the Fellow, but above everything, it validated that my diagnoses are on the spot. My pelvic pain is a quintessential case. I BELONG SOMEWHERE.
A final word
At the outset of the appointment, after I described my pain to Dr. A., he said to me, "People think of pelvic pain like they think of an injury. You get a shot, or you do something else, and you're cured. But it's not like that. Pelvic pain is a disease."
My skepticism kicked in immediately. My pelvic pain didn't originate from an infection, and it isn't like cancer or diabetes or any other condition that I have understood to be a disease. To me, it's always been idiopathic -- arising from unknown origin. It's been a collection of symptoms, not a physiological dysfunction of defined cause.
But Dr. A. showed me over the course of my appointment that he is extraordinarily knowledgeable about pelvic pain, and the other staff in the pain-management department praised him to me during my interactions with them. So while I don't understand his reasoning yet, I am taking his word for it. And I have come away with the understanding that pelvic pain will be a long-term if not permanent issue in my life.
My view of life shifted radically over the past few months, even prior to Dr. A.'s assertion that pelvic pain is a disease. But that, I guess, is for another post.
First, anxiety. My psychiatrist is really good at his job. Last week he started me on a new med that has taken my anxiety from persistent dissociation all the way down to occasional nervousness. He also yelled at me for not taking the Valium twice a day as prescribed. "Hey, you said 'as needed'!" "LOOK AT YOU." He leaned over his desk and pointed his fingers at me in the most passionate display I'd ever seen from him. "YOU NEED THEM." Okay, so I'm trying to remember to take the Valium twice a day. Still, I am HERE in the world again thanks to that other med. I wish I could explain what it's like not to be here. It's terrifying. It feels like some part of the universe violated the Prime Directive and gave me more info than I could take.
Every time I've stepped out of the house over the past few days, I've felt like a superhero. Again, that's not something I really have words for. But because of it, because it feels like my anxiety is holding steady at a low level, I decided that tomorrow, I will go back to the office. I have confidence that I can do it. It's time.
My lingering concern is that I will feel judgment from my coworkers. I already feel it. I know how they talk about other people, so I know how they talk about me. Here's the important part: you can tell someone in my position that other people's judgment doesn't matter, that it's their business and not mine, that I know the truth about me, that they might not even be judging me. All of that means nothing to me. I am so vulnerable with the stuff I've gone through that any amount of judgment -- even imaginary -- leveled my way makes me feel like shit. I've got so much weird stuff going on that I feel like the universe doesn't even want me. So I suggest never trying to tell someone who is afraid of others' judgment that they have no reason to be afraid, especially if you're not in their shoes.
But today at my doctor's appointment, this guy stuck his fingers here and there, tested my nerve sensitivity up and down my arms, my back, my abdomen. My left genitofemoral nerve -- radiated pressure-pain, made me feel like I was going to pee all over the table. My right genitofemoral nerve -- not as bad. Then inside. 6 o'clock on the vestibule/rectum. The bladder. The right pudendal nerve. The left pudendal nerve.
He poked each spot for one second, but by the end I was crying. Colors bled over my face. Again, words fail me. It's hard to write about even now because it was so scary. So I won't.
I think it will take another post for me to go into all the details of the visit. I learned a lot of stuff, and I have good info to share with you. The doctor defined causes for my pain, and I have a treatment plan that is comprehensive.
But right now, I will just stick with the subject of vulnerability, self-doubt, self-esteem. I've noticed here and there how my self-esteem has plummeted over the course of my vulvodynia. Tiny little things that I wouldn't even expect. But today, I noticed a huge gain. When I have someone like Dr. Abdelmalak standing in front of me telling me that my pain is real, is severe, that the pudendal nerve is "the most important nerve in the body" because of how awful it can make your life when it malfunctions, that it sucks that I can't tell anyone about my pain because of where it's located, that it sucks because it's so hard to treat, when all this stuff is coming out of his mouth unprompted because he knows pelvic pain so well that he could probably write this blog and hit my perspective dead-on --------- when THAT happens, I feel legitimate. And that's what I have to hold onto when I go back into the office to face my coworkers after working from home for several weeks. No matter what they say about me, how they judge me, no matter what I fear might be wrong with me, that I am a slacker, that I am a pretender, that I am not strong enough --- none of those things is true. This is real, and frankly, given the pain I felt today during my examination, I think I am doing fabulously. It is a miracle that I am still able to work -- and a double miracle when I pair the pain with the anxiety. I feel fortunate and strong.
I came home today intending to finish up the work I missed doing because of my long appointment, but I couldn't concentrate. I showered to get all the lovely KY jelly out of my cooch. I ate a bunch. I browsed social media while I ate. I logged on to work, but my brain kept timing out. So I feel like a failure. I feel like I failed my coworkers. But I will pick up in the morning and get it all done just like I do every time. And if I fear judgment, I will remember the pain I felt during my examination today, and I will respect it.
So here's what happened. I took the week of June 2 off. I worked two half-days from home the week of June 9. I worked half-days from home all last week, and this week I'm back to working full-time, though I'm still at home.
And I am overjoyed to be back at work.
After my first week off, I wanted to go back to work if only for mental hygiene -- it felt like staying out of work any longer would only create inertia. So I drove to work that Monday, but I had to go back home immediately. Driving there, I felt like nowhere was safe, like I was a neurotic cat who had been kicked out of the house and was now in desperate need of a shadow to hide in. As I left, I panicked thinking of how far away my house was and how there was no "safe" way to go -- no continuous shadow to be in until I got there.
So I worked from home that day and the next, and I totally crapped out on work at the end of my half-day Tuesday. I was in extreme-anxiety mode. The rest of that week is a blur. I was just trying to hold the lid down on my brain.
But spending those days just trying to hold steady paid off. I had fallen off the Lyrica wagon, so I started taking 75mg at night as it boosts my mood. I made sure to take a Valium each day whether I thought I needed it or not. Sometime that weekend I found my way to my parents' house despite the cat-with-no-shadow-to-be-in feeling. And by Monday I wanted to try working again.
I am still not awesome at leaving the house. I get stuck just inside the doorway. If I'm going by foot, I feel okay; if I have to drive somewhere, I get panicky. Big-box stores are wobbly parallel universes, but I was in Target long enough last week to get my prescriptions and buy some food. Sunday I went to the beach, and I remembered that it is impossible to be anywhere else -- even inside your own anxiety -- when you're at the beach.
All of this anxiety has been going on for a long time, but it reached critical mass and kaboomed in May when the pain just wouldn't give up. And that's why yesterday, when I started working my first full-time day, I was so excited to be working again. I had thought maybe I was done. I had thought my mind had broken. But maybe not! And I woke up today with the same feeling of excitement.
Excitement and pride. I am so proud of myself. It's like conquering a boss in a video game. I beat that m.f. down. But only I know the shape of my monster -- or, rather, its shape doesn't come with words. I can't describe what I conquered, so the pride is strangely private. But no less glorious.
My pain spikes have backed off over the past few weeks, probably as a result of recovering from the genitofemoral nerve blocks I had in April. I had an ilioinguinal nerve block last week with my new doctor -- we'll see if it kicks off a bad round of pain. I'm hoping that it was the site of the nerve block that was the problem before and not the steroid itself.
And as you can tell from that paragraph, I have no hope for pain relief from this ilioinguinal block. Haha! It wasn't at the site where I had the nerve block in February that relieved my pain... these doctors seem to be stabbing my stomach randomly as no two blocks are the same. The block I had in February numbed my leg, which hasn't happened with any blocks since. Maybe that is the key.
My new doctor wants me to see another doctor... the pelvic-pain specialist in the pain management department at Cleveland Clinic. Dr. Joseph Abdelmalak. I have an appointment with him on July 8.
Pursuing treatment for my pain is stressful, which drives my anxiety, and I'm ready to take a break from seeing doctors just so I can regain some composure. Yes, pain is bad, but if you're not mentally stable, you can't do anything. I don't want to lose my job, and I don't want to be stuck in the house. I don't want to be stuck watching reruns of reruns all day on my iPad because doing anything else is overwhelming. So if I have to take a break from seeing doctors to regain my footing, so be it.
Cleveland Clinic neurology doesn't know what to do with a pelvic pain case, so I made an appointment with pain management. Ohhhh I'm so glad I called them. My appointment was today, and they were so compassionate. And they don't care what the cause of my pain is. I didn't think I'd like that -- I thought all along I needed an explanation, and all the doctors I saw before were either giving me hypotheses or giving me explanations why my pain was something they didn't treat. But these guys don't give a crap what's causing my pain. They only care about making it better. They'll try something and if it doesn't work they'll try something else. Totally empirical.
So they agreed today to try an ilioinguinal block on the right side, the one Dr. Westesson didn't repeat after my February appointment in Rochester. They'll do it by ultrasound. Dr. Westesson did it by CT scan. They say they can see the tissue, etc., with ultrasound, which CT scan doesn't include. (I think CT scan is just a nerded-out, super-spinny X-ray, but maybe I'm wrong.)
I really appreciate that they thought it made sense to start with the block that I thought helped in February. For whatever reason, my instinct tells me it was the ilioinguinal block that provided so much relief. This block will be anesthetic only (I think I am getting this right), which -- if it's at a good site -- might provide prolonged relief, but if not, they can burn the nerve to shut it up for a longer period of time. And if the ilioinguinal site doesn't work at all, they can move on to other treatments.
There is a doc who works in pain management who is the Center of all Pelvic Pain Treatment at the Cleveland Clinic. This is a vortex that did not exist when I was moving thru the Clinic several years ago looking for the right doctor. The doc I saw today said I can move on to see the Vortex for another opinion before doing the block. I decided to just do the block now with the present doctor and move on to see the other doc if the block doesn't work. But now that I'm calling him The Vortex I feel the need to schedule an appointment with him.
And to make this blog post even longer, I will report that on Monday I started a leave from work. I am very low on vacation days due to my visits to Rochester, so as of today I'm on FMLA. (I think. I can't count.) My pain has been so nasty recently that I kept having to work from home or come home midday -- even with the standing desk -- and I kept having to work past the workday to finish up because I couldn't concentrate, and I was sleeping all my spare hours away and not eating, and last Friday I woke up and it was all clear. I said, No, no-no, this is not happening anymore. On top of all that, my panic/anxiety/agoraphobia has been monstrous lately, which is half the pie that is the whole take-a-break picture. I am back to taking valium 1x a day, and life is just soooooooooooooooooooooo much easier when I take it. I am not in space, I actually exist, it is not strange that planets are round, there is not blackness inside everything I see, I do not freak out when the sun goes to the other side of the Earth and I have to wait for it to come back, I am not concerned that atoms have a shelf life, and now that I type this all out, WHY IN THE WORLD DID I MAJOR IN PHYSICS IN COLLEGE?
I don't think I'll be on leave for long. I'm going to challenge my anxiety over the next few days, going INSIDE buildings!!! and things of that sort. The pain is more of an unknown. I think April's steroid injections set it off. They are messing with my period, so maybe it's tied to that. One day it is workable, the next day it is stupid. I've mostly been lying down the past few days, so I'll start challenging the pain too to see where it stands. Worst case, if the pain is still nasty, I'll ask for flexibility to work from home at least part of the time, to make it an official thing, and see if that flies.
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.
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.
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.
"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.
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.
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.
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.