I called Dr. Howard's office to see if he would do a pap for me at my appointment on Wednesday. The woman who answered the phone told me that he probably wouldn't because he's retiring later this year and might not want to take on new OB/GYN patients, but I could always ask when I see him.
I laughed and said that I would ask as I don't want to get into the stirrups any more than I have to. Then I hung up and freaked out that Dr. Howard is retiring later this year.
Don't retire! Don't retire! I'm just establishing a relationship with you!!
I know he must have colleagues waiting in the wings to take over for him, and that they might bring different strengths to the table. It was just an emotional blow -- over and over, I have hit brick walls in trying to find a (real) diagnosis and a treatment for my vulvodynia.
The pudendal nerve blocks didn't work, or they don't seem to be working. I'm guessing Dr. Howard will perform another Q-tip test at my appointment on Wednesday and that I will pass, or fail, or whichever term you use when the touch of a Q-tip feels like a razor. I vote for "pass." Passing will mean that the nerve blocks haven't improved my pain.
We haven't tried the genitofemoral nerve block. If Dr. Howard thinks there's a Q-tip's chance in an earwax factory (?!?!?) that a genitofemoral nerve block will help, I will do it. Even though with all the steroids...
I am becoming Wolverine. There is hair growing in places where there was no hair before. Like my shoulders. And other places I don't want to admit to. It's peach fuzz, but it's constantly standing up straight like I'm in an episode of Scooby-Doo and the ghost has just revealed himself.
Dr. Westesson didn't seem sold on the genitofemoral block because, as he said, I wouldn't have pain with sitting if the nerve entrapment were up front. But dude. Today, I've been standing all day, and the pain is so bad I can hardly walk.
However, I've read that the genitofemoral nerve isn't involved with the parts of the vulva between the outer labia, so that's another strike against it. But I want to do the genitofemoral block just to rule it out. I would climb Mount Everest to rule it out if it were a potential cause of my vulvodynia.
I'm making a list for this visit to make sure I ask Dr. Howard all of my questions. So far, it's this:
- Genitofemoral block
- But c'mon, doc, what about all my weird hip problems!
- PAINKILLERS. REAL ONES. I know other women who have had painkillers prescribed to them despite doctors claiming that they "don't work" on this condition. You know what? Let me try. LET ME TRY. I'm suspicious that doctors don't want to prescribe them to me because they fear I'm an addiction risk because of my mental illness. But I've been on a number of addictive meds FOR mental illness and never had a problem. So let me try. Let me try. Because if they do help, they will make my life so much less sucky.
- Physical therapy
- Interstitial cystitis
- Which seems like a mismatch but both docs seem to think it's likely, so go ahead and refer me to an IC doc
- Valium suppositories
- Here's a study my psychiatrist printed out for me about them
- Botox
- What the hell do I do after you leave me
- Marijuana
- Interferon injections
- Amitriptyline/Nortriptyline (low-dose MAOIs)
- What about an fMRI? Would it maybe show nerve entrapment if it exists?
- Bed rest. Please put me on bed rest. I will be miserable but I will pee like a goddess.
If you have any additions, let me know. I am always terrified of being an annoying patient, but I'm going to have a list, and he's not leaving the room until I'm through with it.
Your condition definitely warrants narcotics and other pain medications. I feel ya because I've run up against trouble getting adequate pain medicine for my pudendal pain. Nerve meds don't particularly work well for me, but narcotics are great. I think you should look into your hip pain. Check out Hip Chicks at http://hipchicksunite.ning.com/. There's a group of us there with pelvic pain. Do you use a U-shaped or donut cushion when you sit?
ReplyDeleteThanks for the link! I went over there -- awesome community. If all the stuff Dr. Howard assigned me after this last visit doesn't help, I will ask him about how my hip might be involved. I think it is a result of muscle problems from the long-term pain, but my mom & grandma BOTH have hip problems in the same place... ha ha ha :)
DeleteI have a cushion, but it was a cat-hair magnet, so I stopped using it because it was unsightly. I got it from IC-Network.com. You'd think they'd have the ultimate cushion! Jenji (below) has recommended one on Amazon to me -- thanks for the reminder to get one.
I forgot to ask for pain meds... oops... but the topical & suppository stuff Dr. Howard gave me is intended to diminish pain, on top of the gabapentin. I think if I do feel I need additional pain meds, I will visit a pain-management clinic.
I hope you are doing well! I'm sorry to hear about your pudendal pain but I'm glad narcotics are effective for you.
Ugh.
ReplyDeleteI just found out last week that he's retiring. It was a kick to my gut.
I shouldn't think he'd have any issues writing you a script for painkillers.
Just ask him. He understands the kind of pain we have to deal with.
For the record, if I stand too long my pudendal can get really angry. Not always, but sometimes. It gets real angry when I sit, urgently flared when I'm flat on my back (as I was today for a glorious 15 minute transvaginal ultrasound. good times. tech didn't even know what a pudendal nerve was) and if I stand for too long my pain will sometimes kick in all of a sudden.
Amitriptyline has given me a bit more relief than I had ever expected it to. If I forget to take it one night I feel it the next day, so I'm sure to take it.
He wrote me a script for PT, but I haven't taken advantage of it, as it's internal PT and I'm not all that jazzed about flaring my condition at the moment, even if it will relax the pelvic floor. My pain pre-Howard was a 10 every waking moment of the day and after having had injections and implementing avoidance behaviors (using my cushion. every. single. time. i. sit.) my pain level is usually an annoyance (4-5) with occasional 9-10 flares, which usually happen after I didn't use my cushion or my insides came out sideways that day. Toilet talk. No good.
If you don't have a cushion for your car, for your work and for when you go out to restaurants/theater etc you're really doing your condition a grave disservice. I cannot tell you how much my cushions have helped me avoid flares. Particularly the one for my car.
Anyways, I wish you luck. He said there were two docs who were qualified to treat this issue in his office. I asked which one was better and he said they're both very good. So, come 2014 after he's gone, I'll give one of them a go.
best,
jenji
I know, right? But the fellow who was with him when I visited him (Dr. Paula Boyle) seemed to be learning a lot. So I'm sure he's training plenty of people... he just seems SO knowledgeable, and he has so many more years of experience than anyone he might train. He's seen EVERYTHING. I'm nervous, but we'll see what happens.
DeleteI forgot to ask about painkillers. OOOPS. But the stuff he gave me (lidocaine, valium to insert into vagina) are specifically to treat the pain. We'll see if they work.
Lying on my side is the worst for me for some reason. I'm a side sleeper too, which makes it tricky when I'm in a flare. I think I've trained myself to sleep on my back. Walking can be a bastard too when I'm flaring... any kind of pressure or movement in the area.
I hope the ultrasound turns out okay.
I'm glad the Ami is helping! I'm kind of surprised he didn't suggest it to me, but as the gabapentin does okay, maybe he wants to stick with it.
I'm terrified of PT. I went once and it was not horrifying, and the woman was very nice, but I don't want to make myself flare either.
Toilet experiences... yes. Regular visits are a big help.
I don't have a cushion, and I'm bad because you recommended one on Amazon that was cheap and looked effective AND I DIDN'T BUY IT. I had one from IC-Network.com that was okay but cat hair stuck to it and it became too ugly to use. Bad design. I will stop making excuses about the cushion and buy a new one. Sitting in the car is usually ok for me. I think those seats are just designed to be cushier and usually don't make my pain much worse. But hard chairs? In restaurants? I feel like I'm under attack. I sit on my foot!
Thank you! I always appreciate your emails & comments. My next appointment is in September, at which point I'm sure we'll be talking about who's next on the list of docs to see. Oh well. At least he has been there so far. I really feel lucky to have visited him -- he is by far the best V-doc I've seen and helped me more than any others, in any discipline, whom I've visited for this condition.