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.


  1. Wait. You were at his office today? As in, the 25th? I read your blog post and then went back and looked at the date you gave me on Skype of your appointment and I was at his office on Wednesday too! What are the chances of that?! Weird. Were you the woman who I briefly swept past in the lobby vestibule and we both smiled a bit at each other? Around 3:45-4 ish? Weird bc I felt for a moment that I knew this person from somewhere.

    This is weird. Anyway, we can catch up later.
    Interesting updates on your condition and journey. He's such a competent doctor that I hope you at least feel confident in his assessments.


    1. The 25th! But I wasn't that woman. My appointment was at 1:30 and I was out of there by 2:30. I hope your appointment went well. Yes, I feel pretty comfortable with what Dr. Howard told me. It seems accurate. It's the best picture I've had of my pain. I appreciate that he looks at things comprehensively. He's the first doc who considered nerve problems in the first place...unbelievable that no other docs did! Thanks again for the referral. We'll talk soon.

  2. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

  3. I've read a couple of your posts and I want you to know that I have nothing but respect for you for being able to navigate through the sheer hell you have been through these past several years.

    The most miserable thing about this class of disease is that one is reduced to desperately fumbling around the internet (and everywhere else) for the answers (and possible cures) that the numbskulls with M.D.'s (and huge paychecks) one has consulted should have had available in the first place.

    From the looks of the weblink bar to the right, I know that you already know you are not alone. I just want you to know that you are really, really not alone:

    The world of genitourinary medicine still has a long way to go, and both sexes, we are all on this goddamn roller coaster together. I thank you for your efforts to bring awareness to your illness, and I wish you nothing but luck and good health on this.

    Stand tall and keep fighting.

  4. Hi Esther, my name is Sara and I have spent the last two days just reading all your blog in one big go (of course that required pretending I was working while actually getting all emotional about your story reading in the office...). So now I feel as if I kind of know you and I have laughed when you were seeing life through its comic lens, I have nodded sympathetically at the screen all the times new doubts and theories and sacrosanct questions were rising out of some new acquired awareness.
    But you do not know anything about me yet, which feels as if were writing to some very famous President (or some world-wide known writer, which probably suits you best as a comparison! ;).
    Well, I am 29 years old, I am Italian but I live in London, UK, and I have had "vulvodynia"/"pudendal neuralgia" for the last 2 years and 4 months. There are a few particular reasons why I felt like writing you instead of just anonymously leaving your page and going back to my life as I always do when reading forums & alike: I think I have a couple of observations that could maybe be useful to you.
    As you can imagine, reading basically all of your posts in one go gave me a good overview from the outside; being a sufferer myself, I know much, way too much, the topics you have addressed. I also know in my case, when the amount of information available to me becomes too much and going through my pain history and the number of experiments tried and the results which never really grow any stronger than just "hypothesis", I end up overwhelmed and unable to see things clearly.
    Maybe you understand what I mean, and can imagine why looking at somebody else's story with all the details but no emotional involvement can provide you with some insight. Insight which I will now give to you to do anything you want, maybe just printing it out and using it as toilet paper in times when you really cannot be bothered to go out and buy some! Here we go with my pearls:
    1 - It is absolutely obvious to me as a reader that your pain has some link with cystitis. No, you do not fit the bill for IC. But neither do I: no frequency, no urgency, only PAIN (when peeing). Regretfully for me, I have to admit it is very unlikely I have IC, because - hear this - I have never had cystitis is my life, so far. My pain started with all the symptoms of a cystitis, or at least so I thought from listening to my mum and my flatmates, but even back at the time my urine tests always came back negative, as they have done throughout all this time. Never had cystitis. Therefore, no chance I have IC. I would really like my pain to be just SOMEHOW related to cystitis, because the treatment would be way easier. I would just take D-Mannose for - like - a year, avoid some foods, and the root cause (or at least, one of the roots causes) would be treated. But you DID have episodes of cystitis: your body knows this problem, and it seems quite obvious something got wrong in the recovery from cystitis (your latest diagnosis of Skenitis seems great, but in the end you have to ask yourself "what caused such an inflammation of the glands?"). As for having "all the symptoms" of IC, I will tell you what my mother told the one time I bothered to filosophize about this with her: "The way I respond to cystitis is not the way your grandma does. We are all different, our bodies are all slightly different and the medical guidelines have been drawn based on the average symptoms. Therefore do not bother about ticking all the boxes". It is the one piece of advice she game me that does not seem medieval. On top of this, you may not have IC, but just knowing that your pain started from a bacterial problem with the bladder/urethra will give you GOOD options for changing your path and maybe preventing the problem from recurring.

  5. 2 - Again on food intolerances or, better, triggers: my pain came mainly from the fracture of my coccyx (86%?) and only partially from the way my body reacted in the past to ridiculously simple cases of Candida. I feel a burning pain anytime I start to pee, my muscles will not cooperate, I have to "talk them" into getting off their strike and letting me pee. That said, I can eat as much sugar, sweets, pre-cooked food and generally shit, as I want, and this will not impact my pain. How did I find it out? Well, just by living my life and trying different things: if I had to find a correlation between my pain and food, I would have found it a long time ago. You, instead, have this correlation and this is plain enough even to someone who has just gotten through your blog! I tell you as a "pain sister", I swear - I just imagine to hold out my arm and say this to myself, with all the love and understanding I reserve to myself: if I were you, I'd goddam try to make something out of this obvious link food-pain. Yes, I know it is hard/impossible: I am a hard smoker and my willpower has been crushed by these 2 past years of pain.
    3 - The Nerve Blocks: I had two done in September, one on my left-hand cheek (my pain is only on the left-hand side) and the other on my coccyx area, and I am still waiting for the anti-inflammatory to start kicking in! In my opinion, nerve blocks do NOT work as a sort of even mild solution in soothing the pain. They are just a diagnostic tool and no hope has to be placed on them as a treatment. That said, blocking the nerve at a certain point along its path did make you dumb and made your pain disappear for a few hours: that, in all the docs I have read, proves that your pudendal nerve is entrapped or compressed (however you want to put it). I found the second nerve block, the one when you went numb but the pain did not disappear, much more useful than the others: it showed you that indeed the nerve is compressed, and at a very precise location. That said (how many times have I said "that said"??? I sound like an Architecture Professor...), having your PN compressed does not mean that surgery is the only treatment for you: it just gives you a clue about where focusing your efforts.
    4 - There is another peculiarity about your case: you say your pain gets a bit worse before your period (or was it during your period?). This is a clear indicator that your problems involve somehow cystitis (IC or just some post cystitis issue). Take me and a lot of other people who do not have IC: my pain becomes much better around my period and generally after ovulation. I have been in awe about this fact for a long time. Then I invested in a visit with a somehow good Gynae and she told me very simply that oestrogen, the hormone produced after ovulation, is a strong natural painkiller. As a result she gave me an Oestrogen gel to use throughout my whole cycle, especially after my period and before ovulation: Esther, this has been my life-saver. For the first time in 2 years and a half, I have been painfree for 2 weeks in a row. And I was one who could not tolerate pants for the pain. Anyway, enough with my story, this post is for and about you. So in the end, consider that this simple difference in pain during period makes you much more likely to have something cystitis-related.

  6. 5 - Physical Therapy: I was astonished that in your blog there is so little room for PT. Based on the blog, so far you have had very little physiotherapy. If what I read is accurate, it mainly consisted of you doing some muscle relaxation on your own. In my opinion, you need physio (or osteopathy, or chiropractic or acupuncture or a combination of them all) if you want to ever recover. Even addressing all the root of the pain, IC & pudendal nerve, I bet your pelvic floor is all wrapped up in fear and pain. Whatever the cause of the pain, your muscles must have gotten really scared by what was happening: muscles are silly creatures; very coward ones. They get "scared"? They contract. The contraction generates more pain, obviously. What do they do? They contract even more. Once fully contracted, your mind has little awareness that they are all screwd. You probably think: "Oh, but I think my muscles will go back to normal when the pain ceases", or "I do not think I have muscular tightness, I would notice it". Truth is, you won't really know how bad they are. I never did and would never have had, if it were not for PT. There is chance, I think, that your P Nerve is just compressed by muscles that contracted so much they are unable to let go and go back to the happy, relaxed snails they are supposed to be. And some little relaxation and stretching done by yourself will not be effective enough: I think you, as I, need a very strong form of Physical Therapy. Think "Olimpics 100 meters runners after a bad injury": the king of physio where you lie down, breathe your life out and let the therapist revolve your pelvic floor and gluteus muscles inside out...! And all this done at least one time a week for an hour or so, for about...two years. Yes I know, just the thought of it is completely depressing. But one thing I learnt about this pain is that it will not go away on its own. No quick fixes. A lot of endurance, a lot of willpower. Wisdom in choosing the right doctors/therapists.
    6 - Last but not least - the urethral pain: in line with what just said, here I go with my personal quick fix! You said you tried it in the past and it did not work, but MSM has been my personal miracle. I read about it in an IC forum, although I have no IC. People were saying it soothes your urethral pain. I am no supplement-holistic girl, meaning that I would love to holistic is the near future, but I have always relied on the medications & PT to sort me out. Turns out the MSM killed my urethral pain. I swear. I started with taking ridiculous amounts of it: 9,000 mg or so. In a few days I started to realize the 24/7 pain in my urethra was decreasing. In a week I was urethra painfree. Now, about 2 months after this, I only have a slight sting when I start peeing, and it does not even last until the end of it. I walk out of the toilet, the pain has disappeared. No more pain in the urethra. I can even touch in without jumping. No pain at all. Nothing. Now, if you ask me how, I do not know it: I read sulphur is a strong disinflammatory, but I do not even know what it might be disinflaming at the moment, maybe some glands. Now I am down to 1,000mg/day and no pain at all. When I tell the doctors they cannot believe it. My boyfriend, who has been with me since the beginning of this nightmare, cannot believe it. It is true, though, so maybe you want to try it again.

    OK, Esther, I wrote too much and without a great patience, so probably the letter is just annoying. But I wish you all the best and I will carry on reading your blog waiting, because I know it will have a happy ending: some things I just can tell!