Oh Thank God

WARNING: More details of my sex life. Relatives, you know the drill. Skip it.

Remember how things were going well, and then they tanked?

Thankfully things got better over the weekend. I did only one rep of my two PT exercises Thursday and Friday, and then modified to make them easier over the weekend, still keeping them at one rep.

Saturday during the day the vulvar pain subsided, down to a dull ache in the right side of my PFM. Persistent, noticeable, but doable. I even wore jeans that day (made possible because I recently lost a few pounds and they are pretty loose on me.) A victory, as the day before I had endured the humiliation of wearing fleece cozy pants to a meeting with someone I hadn't met before. I consoled myself by dressing nicely from the waist up and the ankles down, and reminding myself that at least said meeting was held at a table so my sloppy bottom half would not be too noticeable.

Saturday night was rough again - for some reason the muscle tension was gripping like crazy again despite my pelvic floor drops and deep breaths, so I spent much of the evening sitting on an ice pack.

Thankfully on Sunday I saw some marked improvement, and even had intercourse that afternoon. (Afternoon sex! My favorite!) It wasn't as long as I would have like, as the pain did start to creep back, but still - considering how shitty I had felt just the night before it was pretty awesome.

Even though I haven't started the new internal estrogen cream, my personally produced slippery stuff also began to reappear. Thank god. I'll still get the new prescription to have on hand, because if there is one thing I have learned over the past week and a half it is who knows what will happened next.

So, not out of the woods yet. But better. The changes over the past few weeks have definitely been the fastest and most dramatic I have ever had in the past ten years, whatever that means.

As Dinah Washington famously sang,

What a difference a day makes.

* * * 

Need to procrastinate? Bonus Funsies below!

Dinah Washington's "What A Difference a Day Makes" (the famous version)

I found this one from Sarah Vaughn just today. Totally different from Dinah's and super fun:

And let's not forget to celebrate the joys of afternoon sex: Sing it, Starland Vocal Band!

You've Got to Be Kidding Me

WARNING: This post contains intimate details of my sex life, so if you are one of those people who read this blog because you are related to me and are attempting to be supportive but don't actually have pelvic pain, skip this post. (Mom, that's you.)

Here's the summary: this week SUCKED. I've had unprovoked vulvar and PFM pain for the first time in a year and a half every fucking day. Bullshit.

* * *

So last week, I was all Yay! Stuff is going well! This was last week:

I started doing my PT exercises on Friday, only 5 reps of two exercises (out of four. Baby steps.) I was fine after, even though I could tell my pelvic floor was overactive during the exercises. Saturday...not so great. Sunday? I had the time to do all four exercises. Go me!

Holy mother of god, do I regret that. My right hip rotators and PFM (pelvic floor muscles) were jacked up all freakin' day, and it HURT in addition to being that super-annoying-irritable-muscle-tension-that-won't-let-go feeling. 

But wait, it's worse.

(Really Mom, stop reading.)

On Saturday night, my awesome estrogen cream stopped working. Even though I initiated sex and totally wanted it, and had been FINE the last time I had sex, my lady parts were dry as a bone. It wasn't until a few minutes AFTER my orgasm that they got on board and became the juicy happy organs they are supposed to be. (Yes, after my orgasm, but no, not after intercourse - no fuckin' way would I have penetrative sex with my intimate geography a desert, even with lube. My clitoris is there for a reason.)

Sunday night, same thing.

Monday, three reps. Still in pain. But after doing only one rep of each exercise on Tuesday, I felt a bit better that day. Phew.

So what did I do on Wednesday? Like an idiot, I went back up to three reps. Bad idea. It totally jacked me up...even after I went back to one rep the next day. I stupidly hit and went right over that precarious tipping point.

So I am keeping my PT exercises at one rep, until I am certain I am out of the woods. I am taking all my action step: I have an appointment next week with my PT. I had a lengthy phone call with my gynecologist during which we dissected the vulvovaginal events of my life over the past three months. She still could't tell what triggered the sudden ineffectiveness of the estrogen cream, but proposed that we try internal application of estrogen - most of our lubricating glands are inside the vagina, after all. So I have something new to try there.

A yoga student of mine reminded me of the good ol' yoni steam. Haven't done one of those in a while, but I see one in my future. On another hopeful note, I did feel better on Tuesday after the one rep. Evidence that yes, my body does remember how a healthy pelvic floor behaves and is able to attain that state. This will calm down. It may take icing and yoni steams and hip and pelvic opening yoga poses up the wazoo, but it will shake out. 

I am doing what I need to to get better, but I am still angry at the vicious little beastie who invented vulvodynia. 

In short, this week SUCKED. 

Great Post on “When Sex Hurts There is Hope"

Hey all,

I'm featuring a great, recent post from When Sex Hurts There is Hope. This blog started before mine, in April 2014, and it has grown so much since then: there are loads of great posts on a bunch of different topics.

I appreciate how Sarah recognizes that the effects of sexual pain are not only physical but also mental, emotional and spiritual, and therefore healing must address all four factors as well. She generously shares the lessons she has learned, validating the struggle while avoiding despair (which is probably why I am so happy with this site - that is exactly what I wish to provide to my readers as well.)

The site is well-named, hope abounds there.

The post is entitled "Being Comfortable with Your Doctor," and writes about the importance of the patient-doctor relationship when dealing with a sensitive health topic. It goes nicely with the previous two posts from this week, (Flare Update 2 and Flare Update 3,) in which I discuss my recent physical therapy and neurology appointments.  The success of those sessions, and indeed any and all of my doctor appointments, is a result of the quality of the relationships between me and my health care providers.

Bravo Sarah! 

p.s. scroll down for the complete text of ms dickinson's poem

* * *

“Hope” is the thing with feathers - (314)

BY EMILY DICKINSON

“Hope” is the thing with feathers - 

That perches in the soul - 

And sings the tune without the words - 

And never stops - at all - 

And sweetest - in the Gale - is heard - 

And sore must be the storm - 

That could abash the little Bird 

That kept so many warm - 

I’ve heard it in the chillest land - 

And on the strangest Sea - 

Yet - never - in Extremity, 

It asked a crumb - of me.

Flare Update, Part 3 of 3

For Part 1 of this mini-series go here, and you can find Part 2 here.

* * *

Last Thursday I had my neurology appointment, a follow-up as part of the latest flare. I didn't have much to report. As far as I could tell all of my significant improvement was due to the topical estradiol prescribed by my gynecologist, and while the neurologist's new pain meds weren't as effective as the last, I really appreciated that the new prescription didn't come with any side effects (for me, anyway.)

Even though I was mostly without vulvar pain, I could tell the new meds weren't as effective because some old symptoms - which I didn't realize were connected to my pelvic pain until the drugs I started taking got rid of them - came back. The big one was provoked temple pain. This generally didn't bother me until I put on my glasses, at which point the pain started, and if I kept the glasses on, would increase until it became a monstrous headache. 

Needless to say, this symptom of my central sensitization leads me to wearing my contacts more than is healthy. My eyeballs miss my glasses. Now that we are in an overcast Bay Area winter, I am handling it okay, but when the bright sunny days return my choice will be between getting tension headaches from squinting into the sun or temple headaches from wearing sunglasses. And those headaches are worse without the more effective drugs. Boo.

The good news is that should I decide to go back to the more effective meds, my doctor has a few ways of handling the most aggravating side effect, as many of his patients on that medication experience the same thing. He apologized for not suggesting it sooner, as he didn't realize how much it was bothering me. (Argh! Note to self, speak up!)

This particular doctor is friendly and quite chatty, so when I gave him my PT update he mentioned that he had a lot of patients come to him because their PT had failed. He of course didn't have any data on what percentage those failed cases made of the total, and freely admitted that muscular anatomy was not his forté, but repeatedly seeing these frustrated patients made him question PT's effectiveness.

I was happy to share with him my own experience: PT was an immense help on a number of levels, and completely worth my while, even if it didn't solve everything. He then asked me to get one of my PT's cards so he could refer patients to her.

This exchange was a reminder to me of life from the physician's eyes: they practice in their own office, and often when they are networking or out at conferences they are with other doctors in the same field. Jack of all trade, master of none: when you find the masters in Western medicine, which for better and for worse separates the body and thus disease into its parts, these masters often don't have a clue as to how other therapies work or why they would be effective.

This story also illustrates how patients can act as messengers between the specialists: by speaking up and letting our doctors know what else is and is not working for us, we can help them serve all of their patients better.

* * *

So that's the news from flare-up land. I'll keep up with the estradiol and PT exercises and see what happens...

Flare Update, Part 2 of 3

For Part 1 of this mini-series, go here.

* * *

I had a follow-up appointment with my PT last Thursday, which seemed kind of pointless. I was feeling much better, presumably from the estradiol cream, since amidst the holiday busy-ness I hadn't gotten around to doing the PT exercises she had suggested more than, oh, twice.

After my intake and update she asked (as she always does, because she's freakin' amazing) "How would you like to spend our session today?" A thought occurred to me. It seemed like a long shot, but lately I have been having knee pain that is aggravated, if not caused, by my chronically tight hip rotators.* I mentioned it to her - even though my pelvic floor looks good, any chance tight hip rotators could be causing distress?

As it turns out, yes they can. Our gluteus maximus and medius, and our tensor fascia latae, are supposed to do the heavy lifting when it comes to hip stabilization. If they're not doing their part, the deeper hip rotators may take on the job.

After her assessment, in which she confirmed her theory, she gave me four home exercises to do. The goal is to first train my brain to use my gluteus medius and maximus instead of my hip rotators to stabilize my hips, and then to build up strength. Once they are nice and strong, my hip rotators should chill out a bit.

Doing the exercises yesterday in the office and again this morning, I was struck by how challenging they are, even though I was making small movements. As soon as I engaged my glutes, my pelvic floor muscles tensed, which is exactly what we don't want them doing. It takes a lot of concentration to move them independently of each other. 

Hopefully doing these exercises (yes, I will actually do them this time) will retrain my brain to use my glutes without straining my pelvic floor muscles. And maybe I'll kill three birds with one stone - decrease the annoying hip rotator tension, reduce my chance of recurring pelvic floor pain, and get rid of my knee pain.

It would be pretty amazing to achieve those three goals.

The chronic hip tension has been with me my whole adolescent and adult life, and I notice it throughout the day and every morning in my yoga practice. It has that nasty aura of permanence.

It would also be a major victory to get rid of this new knee pain - which came on suddenly and without obvious provocation - without having to start the rigamarole of bouncing from doctor to doctor looking for an answer. These exercises may not be the only piece of the puzzle, but they are worth a try.

The Take-Away, Part One: Don't skip appointments with your health care practitioners even if they seem unnecessary!

The Take-Away, Part Two: Knowing your anatomy is a huge help. Understanding the pelvic structure** increases the level on which you can communicate and collaborate with your health care providers. 

Applied anatomical knowledge - that is, the anatomical knowledge that will help you in your role as a patient - has two parts. First there is the book learning: knowing the names and locations of various muscles and bones and what they do. Second is the personal awareness. Book learning becomes powerful when you are able to locate anatomical structures in your own body, know how they feel, and understand how everything affects each other - in your body, not theoretically.

For the book learning I don't actually recommend books per se. While they are necessary, it's difficult to learn anatomy from a 2-D source so I recommend taking a class. That said, the best books I know for applied knowledge are The Anatomy Coloring Book (which is exactly that) and Trail Guide to the Body, which gives you directions on how to find particular muscles and bones in your own body.

There are also some great tablet apps out there that give the added benefit of seeing a muscle in motion or rotating it's image, but I haven't tried them.

FYI I learned the bulk of my anatomy through massage and yoga trainings, but there are plenty of other ways, like through community colleges or extension schools.

* For the anatomy nerds in the audience: the "deep six" are piriformis, gemellus superior, gemellus inferior, obturator internus, obturator externus, and quadratus femoris. Although all six are in the pelvic neighborhood, obturator internus attaches on the internal side of the pubis, making it the closest neighbor of the pelvic floor muscles. 

** Okay, not just the pelvic structure. As a centrally sensitized person I also had a lot to learn about how the central nervous system works and the biology of pain, but muscles and bones are a great place to start!

* * *

Part 3 of the series, about last week's neurology appointment, is coming out on Wednesday. Cheerio!