Endo Problems

When there are no fewer than six pain relieving products or devices in the house — wait, TENS unit, make that seven — and none of them is the right one.

Inversions and Blood

I know lots of people with Opinions on yoga and menstruation. Some believe that a gentle, restorative practice — like this one, for example — is generally the way to go. There are folks who see no reason why periods should cause people to deviate from their normal practices. (There’s a substantial overlap here with those who say things like “just cramps” and “excuse,” which of course render me prone to fits of ragecaps.) Then again, others — including most of the real life menstruating yogis I know — are pretty solidly in the “it’s complicated” camp.

But even in that camp, opinions can shift again on the specific topic of inversions. Again, some think inversions should be entirely avoided while others differentiate: types of inversions, length held, overall effect of the menstrual cycle on the yogi. I’m probably giving myself away, but I’m definitely in the latter category.

When I can manage it, I like a fairly vigorous asana practice on my period, for a lot of reasons. Because that’s the kind of practice I prefer generally. Because there are days when I can’t manage it. Because there are certain quantities and qualities of work that are engaging enough that they help shift my focus away from certain quantities and qualities of pain. Because keeping some semblance of normal can be therapeutic.

Keeping with that, hellacious though my periods may be, I don’t view them as an inherent reason to keep my pelvis right side up. On the other hand, I don’t do a whole lot of inversions in my home practice generally. So “not avoiding” inversions on my period doesn’t automatically mean I am spending seven to fourteen days of my life constantly upside down. By and large, blood gushing and not, the inversions I encounter are the ones an instructor offers during a class.

And then? I judge on a case by case basis.

If my mat is not pooled in sweat and I am not in accidental kicking distance of my neighbor, I usually choose to take the inversion. The ones in my regular practice are not super strenuous for me, so if I’ve had enough energy to go through a physically active practice, I probably have enough energy to safely and appropriately take an inversion — with or without menstruation.

Headstand in particular is a pose for me that can be extremely therapeutic and focusing. It isn’t always, but when it’s right, it’s right — and I think I could do worse that to trust that intuition.

For people who are concerned about retrograde menstruation and pelvic congestion as it applies to me: I’ve had endometriosis pain and ridiculously heavy periods since menarche, five years before I started practicing yoga — and maybe about seven since I started going upside down. I’d estimate that I practice inversions during menstruation for approximately one to three minutes every two to three months. While it is possible that this is contributing to the endo, it’s also true that endo is a progressive disease in itself. Even if I allow for a causal relationship — which is an “if” — I am pretty darn skeptical about the magnitude of the effect.

Still, every once in a while, I get a glimpse as to the reason for the other perspective. Last MenstroMonster was more or less typical for me, except for one issue: The mere idea of going upside down seemed like the most evil, vile, disgusting thing one could ask of me. To the extent that when my instructor, in a small class, asked a general, “What do you want to do?” I spoke right up.

“Not inversions.”

She laughed. “Is it that time?”

[By Kennguru (Own work) [CC-BY-3.0 (http://creativecommons.org/licenses/by/3.0)%5D, via Wikimedia Commons]

Pelvic Floor PT: First Exam

Continued from here. I realize it’s been a while since the last installment of the series. Conveniently enough, I was sidetracked by endo, one of the main reasons for me going to pelvic floor PT in the first place.

Q: So you said that you saw the physical therapist in a private exam room. What happens in there?

It’s not exactly glamorous or exciting, but the first thing that happened was that the therapist asked me even more questions. Some questions tried to ascertain the specifics:

• How often do you experience menstrual pain?
• Pain with vaginal penetration? During sex, or also in other circumstances?
• Are you able to use tampons comfortably?
• Pain with urination? Defecation?
• What about incontinence? Even if you never actually wet yourself, are there times when you suddenly have to go right now?
• During those times, is the instigator something more physical (like a laugh or a sneeze) or something more psychological (remembering something, getting to a certain point in your routine, etc.)?
• Where do you experience pain: front of pelvis (uterine area), fronts of hips, vulvar area, along the insides of your thighs/groins, outsides of your hips, low back, tailbone?
• Which words would you use to describe the pain: sharp, dull, achey, throbbing, burning, pulling, tearing, constant, intermittent? I was asked to select adjectives for each area/event where/when I said I experienced pain, so this was kind of a drawn-out process.
• Does the pain change (intensity or quality) if you touch or put pressure on the part that hurts?
• Does the pain change with movement — standing up, sitting down, walking?
• What about tightness, stiffness, or range of motion issues? Ones that might be separate from “pain”?

There were also questions about PIV sex when it’s painful — what positions we’re in, whether foreplay happens first, types and quantities of lubes used, whether pain happens on initial penetration or afterward. I was a little embarrassed to be answering in such detail, but not because of anything unprofessional in the therapist’s manner as she asked or responded.

That’s great and all, but did you ever do anything besides answer questions? Isn’t it called physical therapy for a reason?

Well, yeah, there’s that.

After I returned from the land of one thousand questions, my PT put me through somewhat less than one thousand common movements. We left the exam room to go to a larger communal room. In it were several pieces of furniture and furniture-like structures.

She watched me sit down in a desk chair and stand up from a desk chair. I sat down on a sofa and stood up from a sofa. I sat down in a car seat — a fake car seat set up with steering wheel, not a child safety seat for a car — and stood up from the car seat. I walked on a flat surface; I walked on a ramp; I walked up and down a short flight of stairs. I lay down in a “bed” — really an exam table — to demonstrate how I usually sleep at night. I rolled off the exam table the way I typically roll out of bed in the mornings. Because she knew that yoga was a regular thing for me, she also watched me through a few sun salutes.

“I wouldn’t be surprised if you had some psoas tightness,” she said as we walked back to the exam room. “A lot of people do.”

“You could tell that from watching me walk?”

“I can make a good guess,” she replied. “But that doesn’t tell me everything I need to know.”

Awareness Isn’t Enough

As much as I love Endometriosis Awareness Month — because for such a common condition, it is too little known and too greatly misunderstood — I kind of hate it as well. Yes, I get that it’s a first step, but really?

I’ve lived more than half my life now with endometriosis symptoms — and I expect they will continue for decades to come. Awareness isn’t enough for me anymore.

I want shorter diagnostic delays. Right now, it sits between 7 and 12 years depending at age at symptom onset and the types of symptoms presenting. Certainly, some of that has to do with the reality that laparoscopy is a rather expensive and invasive diagnostic tool. However, as the same linked source mentions, “Diagnostic laparoscopy is not required before treatment in all patients presenting with pelvic pain.” In other words — and this should be common sense — it is possible to treat a person’s pain without cutting them open.

I want health care providers to make recommendations based on the sum of current medical evidence. I don’t want them to limit their evidence to what published studies were available in 1990 or 2000. I mean, I got rid of all my New Kids on the Block tapes, and I’m no longer worried about Y2K. I have moved on, grown older and wiser — and I expect no less from my medical providers.

I want more health care providers to use patient-centered, multi-faceted management strategies. The main reason I prefer my general practitioner to a specialist is that all the local specialists I’ve seen have been single-mindedly enthusiastic (okay, so we call that “pushy,” right?) about their pet treatment options regardless of my concerns and priorities. Even if it is the next new thing, it may come with risks — and “no long term data” can count as a risk — that make it unworkable for some patients.

I want society to treat pain as a legitimate health issue. Not just when it’s the result of a physical injury, not just when it’s impairing mobility, not just when it correlates with infertility. Significant, persistent pain is a big deal because it is significant, because it is persistent, and because it is pain.

I want family, friends, partners, coworkers, and employers to appreciate the frequency, duration, and severity of endo symptoms. Specifically, that these symptoms often extend past the days of one’s menstrual period, that some people experience symptoms daily, and that living with chronic pain can be debilitating. I want to avoid being trapped into unreasonable expectations of what I “should” be able to do.

And yes, awareness is valuable to the extent that it is the first step to all of these. But on its own, awareness is not enough.

More Endo Talk

I was at the Planned Parenthood Advocates of Arizona Blog again yesterday, talking about endometriosis one last time. That post focused on endometriosis treatment and trying to sort out the pros and cons of various medical and surgical options.

If you are a nerd like me someone who likes clicky links to scientific studies (where free online) or abstracts (where the full text requires payment), this one is for you!

Endo Assumptions

So it’s Week 4 of Blogging for Endometriosis Awareness.

First, I would like to say that it’s about time spell checkers start recognizing endometriosis. I have seriously added it to my browser’s dictionary at least a dozen times; it keeps “forgetting.”

Second, the prompt for the week looks like this:

Your favorite things/tips/coping tools that have helped you stay encouraged in spite of illness (suggestions: endo survival kit, advice for newly diagnosed, top 10 most annoying things you can say to someone with endo, etc)

As it happens, one of my favorite coping tools is verbal venting. And that “annoying things you can say to someone with endo” thing? That sounds great. Only I’m going to change it to “annoying assumptions” you can make.

Note: I’m going to phrase this as a “you/me” thing because:

• Different people with endo have different assumptions made and find different assumptions aggravating. Though we may have points in common, I don’t intend to speak for all of them.
• As I write, I’m remembering various people who’ve voiced these assumptions to me over the years (where “over the years” includes the decade and a half when I was symptomatic but undiagnosed). It’s easier for me to write this way, but I am not trying to suggest that current readers have made any or all of these assumptions.

Dear humans of Earth (and other entities as applicable),

If you’re reading this, you know at least one person with endo: you know me. According to best estimates, the odds favor that you know at least one other person with endo as well. I cannot speak for all of them, but I know that some of the assumptions you make about my condition and my life have begun to… grate.

Consider this letter a plea to check those assumptions at the door.

Which assumptions? Glad you asked!

1. Don’t assume you can tell my pain level from my mood. — It’s true: Sometimes I have bad pain and am in a bad mood. However, it does not necessarily follow that being in a good mood means I have no or low pain. Sometimes, I can be in average-for-me pain and still in a good mood due to other happenings in my life. Conversely, sometimes I am in a crap mood for reasons mostly or entirely unrelated to endo.
2. Don’t assume you can tell my pain level from my activities. — I mean, yes, if I am curled up somewhere in the fetal position, chances of intense pain are pretty high. However, just like not all pain levels are the same, not all pain types are the same. There are certain situations — usually involving familiar situations and steady as opposed to spiky hurt — where I can participate despite a high level of pain.
   

3. Don’t assume being in pain means I don’t want to do something. — Sometimes this is true for me, yes. But other times, pain means I can’t do something or can’t do it safely. And sometimes, I still want to participate, but I’m not sure if my inclusion at this pain/focus/energy/mood level would be a burden to you.
4. Don’t assume my inconsistency is an excuse. — Endo is inconsistent; life is inconsistent. All pain types are not the same, and it may very well be that I could do Thing X in Y Pain last week but cannot this week. It doesn’t inherently follow that my actions were dishonest in either case.
5. Don’t assume that I’m always on painkillers, that I can always be on painkillers, or that I like being on painkillers. To clarify, I am referring to narcotic pain medications since I’m pretty sure no one is worried about me getting high on naproxen. First, I am prescribed too little medication for my pain duration and frequency. Naturally, I ration them as if each pill were made from liquid gold; the number of times my pain levels might warrant taking such a medication is significantly higher than the number of times I actually take it. Second, and another part of the reason for spacing out doses, there are a number of things I cannot safely do on narcotics (and yes, may be able to perform better with pain, given that I’m more experienced with the pain) — driving always, sex always, and sometimes cooking, teaching, and sleeping. Third, I am a decided non-fan of some of the side effects of narcotics. It’s counterproductive to feel drowsy or spaced out while, for example, writing a blog post or sitting in a staff meeting. Two pills of Tylenol 3 (or anything stronger) brings me hallucinations along with pain relief. And, um, have you ever tried passing hard, constipated stool through an endometriosis-infused bowel?
   
   Though they certainly have their place in my pain management arsenal, and though I certainly appreciate having them available in any amount, the bottom line is that my pain medication is not about getting high.
6. Don’t assume I’m interested in your endo management suggestions. — I’m assuming most people know by know that I don’t want to hear how your step-cousin’s grandmother’s landlady bested endo by giving up coffee and ingesting only free range, fair trade, certified organic unicorn farts instead. (On second thought, maybe I do want to hear that particular story.) But I also may not want to hear about the new endo medication you’ve read about — that may or may not be so new, that may or may not be so effective, that may or may not have risks or side effects with which I can’t deal. At this stage in the game, the same goes for endometriosis specialists and specialty centers.
   
   It’s not that I never want to hear about these options, but by now, frankly, I’ve done a lot of the research. I’ve checked out the drugs, surgical procedures, and alternative therapies. Even among the brightest and best, a lot of them are not options for me right now — usually due to some combination of location, finances, the particular manifestation of my endo, and my personal priorities. It hurts to get my hopes up at the potential for better treatment only to have them dashed a few minutes later as I realize this newest, bestest thing is neither for me — and that is what happens about 90% of the time. Some days it hurts too much, and I just cannot fucking deal.

It’s not that these ideas are never true — at least, not most of them — but the presence or absence of them on any given day as well as the realities behind them are considerably more complicated than may appear on the surface. If it’s something for which you’d like an answer or a line of conversation you’d like to pursue, please check in with me before barging ahead.

– Me

Are you sick of me talking about endometriosis yet?

Because I kind of am. I mean, I’d really this were a much more manageable condition already and be done with it.

Not only is endometriosis not particularly manageable, but it’s also often not easily or readily diagnosable — which is what I wrote about yesterday at the Planned Parenthood Advocates of Arizona Blog. A small sampling:

Wait. So you’re telling me that killer cramps of doom aren’t normal?

It also includes some suggestions I’ve learned may be helpful (either from personal experience or from other people with endo) for dealing with dismissive health care providers.

Admitting

This week’s theme is the social impact that endo has had on my life.

I’ll get to this, I promise.

As some readers might know, I hurt my foot about… a week and a half ago (at least at the time of my writing). I was running, stepped on something funny, my toes were not happy. Now my foot is painful, bruised, and swollen — but healing.

However, my kids have also been working on video research projects, meaning they need space — separate enough so they don’t interfere with one another’s images or sound, open enough that I can keep an eye on all of them at once. Meaning we were on the practice athletic fields, where I could see them all at once but where I had to walk and walk and walk and walk to get from group to group for actual feedback.

On an injured foot. Not my brightest moment.

Our class schedule is set up so that each group filmed twice over the course of three days.

At the beginning of Day 1, I honestly thought it would not be a big deal. “Hey, it’s just walking.” You know, something I routinely do not need to consider as muscular effort or energy expenditure during the course of my day.

Ha.

By the end of Day 2, I was asking my kids to keep to the front half of the practice field (still fine for audio, not so clean for visuals).

“Why?”

Sheepishly, I pointed to my foot. “I can’t actually walk that far all day.” I needed an accommodation.

Here’s the thing. This was pretty much the ideal circumstance to be a person asking for an accommodation. I mean:

1. It was a visible injury. One of the pieces of support tape extended above my shoe. Or, had I taken everything off my foot, there would have been the aforementioned bruising and swelling to show them.
2. It’s a exercise-sustained injury — a pain issue that’s relatively easily understandable as well as one that’s coded relatively positively. I don’t mean that people are all like, “Yay! You hurt your foot!” But I do find that people are more likely to view such an issue as more… noble? forgivable? … than pain from some other causes.
3. It is exceedingly likely to be a temporary issue and one that required only minor accommodation.
4. Let’s face it: I’m an adult teacher in a classroom of secondary students. There’s an inherent power dynamic there that works in my favor.

And yet, despite that not a one of them seemed miffed that I asked them to alter their behavior for me, I felt really awkward and self-conscious in asking this from my students.

Compare that to endo:

1. It’s an invisible condition. From the outside, there’s no proof that it’s happening.
2. It’s often misunderstood. Moreover, endo is part of a broader category — period pain or “wimminz troubles,” depending on how you want to look at it — that are coded more negatively by society. In other words, more people who are likely to dismiss endo as exaggeration or “low pain tolerance,” to judge people with endo as weak, needy, lacking.
3. It is exceedingly likely to be a long term issue and one that may require a variety of accommodations.
4. Most of the people I need to ask are friends and partners — social equals — or employers, supervisors, or health care providers — situations where the power dynamic is skewed against me.

If self shame at feeling physically less than happens in the most innocuous of situations, how much more self shame happens where there’s additional pressure and stigma?

It’s tough admitting that I hurt, that there are things I cannot do — or cannot enjoy — because I hurt, that these limitations are long term and may be permanent. When I do so, I feel vulnerable, deficient. People could choose either not to help me or to demean me while helping me, and I might not be able to do anything about it. I mean, I don’t think my friends would — because there’s a reason I choose to have those people in my lives — but not everyone with whom I must interact socially is a friend.

To admit pain, vulnerability to an unknown entity, an unknown response? That’s scary.

Calculation

This week’s theme is:

Mental impact that endo has had on your life.

If there is an upside to endometriosis, it is that the condition has had a marked impact on my ability to calculate the benefits and drawbacks of a choice in order to find the optimal time to do something or to avoid doing of the same.

On birth control, I calculate how many days of breakthrough bleeding are too many before I should just give up and take a withdrawal bleed. In the event of special occasions — defined as any significant deviation from my normal schedule — I calculate the odds of getting through that event sans bleed, taking a preemptive MenstroMonster so that I’m more reliably in the clear for whatever event is happening.

I calculate how many months I should stick out Brand X birth control, hoping Y side effect will dissipate before resolving myself to the inevitable Conclusion Z: this crud is here to stay.

I calculate my pain medication like it is my second job. Do I take one NSAID for my first dose of the morning or two? The tablet or the liqui-gel? Am I taking acetaminophen today, too? How many? The extra strength or regular-but-time release? Importantly, how long after my NSAIDs am I staggering this dose?

Don’t even get me started on what happens when the possibility of codeine is thrown into the mix. The logistics — including teaching, writing, driving (or arranging alternate transportation), cooking, sleeping — could merit their own task force.

I plan workouts, though to be fair, I think a lot of people plan workouts. But I’m not sure how many people plan workouts with the question of, “How do I keep my pelvis and hips from seizing up and trying to kill me?” as an ever-present underlying concern. How best to reconcile the facts that the movements that tighten the smaller muscles in my pelvis and exacerbate pain are the same movements that build up larger muscles and give me strength to — physically — bear it?

I calculate the best times for evenings out and other social events — choosing dates that are most likely to be manageable pain days, selecting the activities most likely to remain manageable should pain levels exceed my predictions, gathering all the supplies I need or want to have on hand in case of pain, along with how I will keep each one casually concealed.

I plan sex.

Because there’s endometriosis hanging out in my bowel, I also calculate the benefits and risks of eating this trigger food in that amount at this other time and place. Because, you know, some of my trigger foods are tasty and others are unavoidable. And, “I didn’t want to be hungry,” and, “Eating it was enjoyable,” both get to be legit reasons to eat food, regardless of the intestinal havoc they might wreak later.

I calculate whether it’s worth it to seek out yet another specialist who might have new meaningful insight into my issues — whether I’ll be able to get to or afford another consult, whether the news will be any different, whether they’ll understand why I’ve already chosen to prioritize as I have, whether they’ll be condescending and pushy if I end up not wanting their next new thing, whether I’ll be able to afford the next new thing if I did want it. Or, you know, if I’m better off managing with mt PCP, who understands both what I’ve already tried and who I am as a person.

I’m continually calculating and recalculating whether it wouldn’t be better to push for a hysterectomy — balancing the potential to decrease the spread of the endo, pain, and weird nerve happenings against the potential side effects of induced menopause and possible add back therapy and the potential that the surgery itself would create adhesions and therefore new pain. For whatever it’s worth, my current balance sits at, Not now, but I’m keeping careful track of changes.

So when, for example, another teacher asks me how I plan a lesson or a unit or an assessment, sometimes it’s all I can do not to laugh. Not because I think this a skill that should be automatic — it isn’t, and they’re legit questions, and so laughing would be unkind — but because I have had so many opportunities to practice.

Endometriosis Awareness at PP

For folks who want some Endometriosis 101, there is now the first half of such a series over at the Planned Parenthood Advocates of Arizona blog. Part 2 to come as soon as I get around to writing it soon.

I Hate My Hips

In case you read my blog and are not aware, I have endometriosis. (Yeah, that’s what that MenstroMonster tag is doing in the sidebar.) In case you are also not aware, March is Endometriosis Awareness Month. In light of that, I’m doing this whole Blogging for Endometriosis Awareness** thing. The instructions are thus:

Each week there is a different topic that discusses the various ways endometriosis impacts our lives. We all know that the physical aspects of the disease is just on facet of life and it impacts our lives emotionally, socially, and spiritually.

---

The prompt for the week of March 4 is:

Physical impact that endometriosis has had on your life

And, well, yeah. Endo has done what a culture of misogyny, beauty myths, and fat shaming could not. I hate my hips. Which is not even actually one hundred percent true. It’s more like endo has caused unrelenting — but changing and sometimes unpredictable — pain and mobility issues in my hips.

It is nice when I don’t need to be plugged into the wall.

Endo makes it feel like my hips have betrayed me.

Some people have endo that blocks their fallopian tubes and clings to their ovaries. Some have endo that lines their bladders and bowels. Me, I have endo that’s crept into the muscles, connective tissue, and nerves of my hip and pelvic region. To get slightly grotesque about it, endo is eating my hips.

When I talk about endo to people, I find there are a lot of folk who want to categorize it as a condition that consists primarily of “period pain.”

I mean, there are the people — including far too many health care professionals — who want to dismiss it as “just” cramps. To each and every one of them I wish a well-seasoned outhouse, copious amounts of urgent diarrhea, and exactly two squares of TP. One-ply.

There are also somewhat more informed people who understand that endo pain is typically more severe than are standard issue cramps — but who still generally think of it as uterus-centered period pain, only more intense. They don’t account for the potential realities of people with endo to extend beyond periods, beyond pelvises, beyond pain.

I don’t hate my hips because they cause me pain, though I don’t exactly love them for it, either. At this point, pain is familiar, predictable. Not that I don’t cuss out my “sawed in half” feeling from time to time, but I’ve had a lot of years to fine tune a lot of coping mechanisms.

But my hips — home of my “powerhouse” muscles, as so many fitness articles like to remind me — are becoming unstable. I get stiffness and range of motion issues that are roughly cyclical — worse when I’m closer to bleeding, better when I’m further away from it — but that still change wildly from day to day. This means that my baseline for how to perform simple physical movements — standing up, sitting down, walking — isn’t something I can take for granted. More complicated movements — running, negotiating tighter quarters (like a classroom with three dozen desks), practicing pretty much any yoga — require additional amounts of concentration and physical negotiation. In addition to endo in my muscular and connective tissue, the endo along my nerves means that my memory of how to perform these actions may need adjusting not just from day to day but from moment to moment.

The upshot is that I thwap into things with my butt a lot and sometimes stumble for no visible reason because I have trouble determining where my hips are in space. Which, in addition to the bruising, leaves me worrying that people are judging my fat ass.

And also leaves me with questions.

Is this my new normal? Will it get worse? Is there a way to predict how I will feel when? What are my new ways to cope? Why does no one talk about this when talking about endo?

Where are the people who can help?

I guess maybe I don’t hate my hips. I hate that my hips bring up so many unanswered — and maybe unanswerable — questions.

---

** I want to acknowledge that the author of that post uses some gendered language to describe people with endometriosis. While endo does disproportionately affect women, it’s important to recognize that not every person who has endometriosis — for example, some trans* men or some folks who are genderqueer — is or IDs as a woman.

Feeling Better?

I went home sick yesterday.

To clarify — I went home in excruciating, menstruation-impending pain.

Due to my school’s block scheduling, it was a day on which my planning period came on the last time block. The pain had been getting worse all day. I was supposed to have a meeting with my team teachers, but other than that, my lessons were planned through this unit. I did not, strictly speaking, have nothing to do, but in the real world of priorities — is was becoming progressively easier to prioritize this pain over the stuff that would not explode if I tried to handle it by email and/or let it sit for one more day.

So I got the formalities in order, let my coworkers know I was not going to be at the meeting due to chronic pain acting up, and went home.

Today — Well, today is my day of the high maintenance classes. I love them dearly, but — no, not but — and that is why I realized that to leave them either on their own for the next step of their project or with a sub-friendly (though less block schedule friendly) activity with a teacher who didn’t know them would interrupt their learning and do a disservice to everyone involved. Plus — not gonna lie — sub plans are more work than is actually being gone.

So I went in.

Two of my three teammates asked upon seeing me, “So I guess you must be feeling better?” Both framed in supposition of an affirmative answer.

Which, no. I’m not. Only I also don’t have the spoons to explain — at least not in the public, time-constrained venue of the hallway during passing period — that how I react to and manage — and yes, plan for — my chronic condition is about a lot more than just “feeling better.”

As an example, this time — I saw and seized a narrow window to carry over one spoon into the next day. Which has far less to do with helping me to feel “better” and far more to do with giving me the reserves to present that “better” face when I’m not.

Is Pelvic Floor PT for Me?

And other introductory questions. Continued from here.

Also note for brief mention of sexual assault.

And before I even get started, I want to post an Official Big Ol’ Disclaimer: I am not an expert in pelvic floor or any other kind of physical therapy. I am one lay person, with no medical training beyond first aid courses and a lapsed CPR certification, who has had fewer than a half dozen visits of pelvic floor PT. Additionally, while the reasons I sought therapy and my reactions to it may not be solely limited to me, I do not intend to portray them as universal experiences, either. Basically, I would advise you to read this as precisely what it is: the personal remembrances of a short-term pelvic PT patient.

Anyway.

I’m going to try to hit on some questions that I hope are fairly pertinent — I know they’re ones I had — and answer to the best of my memory and ability. I have a feeling that even from this point forward, this will be a multiple post series, though I have no concrete idea of exactly how many posts it will end up being.

But.

The in-my-head questioning.

Q: I’m not incontinent, I haven’t had a recent baby or hysterectomy, and I don’t have a prolapse or anything. Should I even look into pelvic floor physical therapy? Could it help me?

It depends, of course. But I do know that before I started seriously researching PT — in an, is this worth all of the copays, drives across town, potential dismissals and failures to help, and hours of my life I won’t be able to get back? kind of way — I had certain misconceptions about pelvic floor dysfunction (a sort of catch-all term for when the pelvic floor isn’t functioning happily). Those misconceptions basically amounted to thinking that all pelvic floor dysfunction was hypotonic pelvic floor dysfunction (characterized by muscles with loose tone and insufficient strength). Partly, I’m sure, this is because a lot of pelvic floor talk is in reference to incontinence and vaginas becoming “looser” due to events like pregnancy, childbirth, and aging. In those discussions, the remedy for such problems is always touted as, “Kegels! Kegels! Kegels!”

Newsflash: Kegels are not the magic answer to life, the universe, and everything pelvic.

While I knew my problems weren’t on the hypotonic end of the spectrum, I also wrongly assumed that all hypertonic pelvic floor issues (characterized by tight muscles and inability to relax those muscles) were akin to vaginismus, whose symptoms also didn’t fully fit my experience.

Then I learned that pelvic floor issues are sometimes linked with endometriosis. And sexual assault. And PTSD. So I was like, “Maybe I will check this out.” It was unlikely to worsen my issues, and by this point, I was plenty used to people not being able to help.

Bottom line? There’s a whole heap of symptoms that are associated with pelvic floor issues: incontinence (urinary and anal), prolapse, pain with urination, pain with penetration (sexual or otherwise), constipation — as well as persistent low back, hip, genital, and pelvic pain. I wouldn’t suggest that pelvic floor PT is necessary for dealing with every incidence of them, but for someone who’s had problems finding a workable, lasting solution to such symptoms? I’d think looking into physical therapy couldn’t hurt and might help.

Pelvic Floor PT & Me

Once upon a time, I had health insurance that actually, like, covered things. After attending a yoga-related workshop on the pelvic floor, I learned there was such a thing as pelvic floor physical therapy that could sometimes help with chronic pelvic pain of various origins. I also learned that there was then a pelvic floor physical therapist relatively local to me. I wasn’t really sure if it could help with endometriosis, but I decided mentioning it couldn’t hurt — and so brought it to the attention of both my primary care provider and my gynecologist.

They agreed. Particularly, I think, as an alternative to prescribing pain medication and as a way to foist me and my chronic problems off on someone else. (Note: These are not my current providers. When I finally got someone to listen to my dysmenorrhea complaints, my former GP referred me to his golf buddy, the gynecologist. The gynecologist performed a lap, found endo he couldn’t remove, declared “everything okay for now” since there was no visible obstruction to my fertility, and was perturbed when I continued to complain about pain. So, yeah. Exes.)

Anyway, while only a couple of people have asked me in real life — and maybe 10 or so people have on the Internet — I get a fair amount of blog traffic from search engine queries related to the pelvic floor and to pelvic floor dysfunction. This makes me wonder: 1) if this is a topic that interests some people but that people might be hesitant to ask about directly; 2) if there is a lack of satisfying resources available about pelvic floor dysfunction.

So, in the interest of providing more pelvic floor sharing, I’m going to write about my experience with pelvic floor physical therapy. It was a few years ago; I went for a total of 5 visits, and then my physical therapist moved out of town. I debated trying to adjust to a new person, and in doing so discovered that my insurance only wants to pay for a total of 6 visits for a single issue ever. Sort of like if my pelvic floor had been injured in a fall, rather than having been fucked up by years of multiple chronic issues. There were insurance appeals; they were denied; I didn’t go back.

Which is a shame. I don’t know for sure that additional sessions of PT would have produced continual improvement for me — there’s always the possibility that it had already done what it could do — but that should have been a decision between my health care professionals and me, not one dictated by my insurance company.

Okay, and I will write more about the actual details of my experience. But that is going to get long, and this seems as good a place as any for stopping the intro.

Elsewhere on the Intarwebs

I’m guest blogging at Consider the Tea Cosy! — “I saved three lives today. At least, that’s what the sticker from the American Red Cross blood drive tells me.”

Have fun reading there, and stay tuned for one more guest blogging announcement soon.

Dear Endo

You suck, and I hate you.

Why Are You Taking That?

It’s pretty well known around these parts that I have endometriosis. Similarly, that the actual line-up of endometrial lesions in my body is a relatively atypical one. That is, a lot of endo tends to be centered on the outside of the uterus, ovaries, and fallopian tubes; I have precious little of it there, but I do have lots of microscopic lesions throughout my pelvic cavity tissues (muscle, connective tissue, and nerves).

Even given that, I’m on a very typical regimen for symptom control: oral contraceptive pills, a daily or near-daily dose of over-the-counter NSAIDs (in my case, naproxen sodium), and the occasional milder opiate-acetaminophen prescription pain reliever. It gets a lot of people, from all over the endometriosis knowledge spectrum, asking me, “Why are you taking that?”

There are laypeople who wonder why I’m on birth control when I’m already sterile. There are GPs and OB-GYNs with limited endo dealings who wonder why I’m not using Depo Provera, Implanon, or Mirena instead. (Hint: Because while they often do stop bleeding eventually, my hemoglobin levels cannot — as in my experience with Depo — sustain the 12 weeks of heavy, daily bleeding I got as “adjustment.” For Mirena, I fully believe that IUDs are often great things when they don’t fall out of my crotch.) Additionally, there have been at least a few endo specialists who don’t understand why Lupron Depot plus add-back therapy or radical hysterectomy plus add-back therapy don’t sound like completely marvelous ideas — since I’m not planning on kids anyway, you know.

There have been people who worry about my increased risk for heart attack and stomach bleeding while taking NSAIDs, just as there have been people who’ve wondered — if my pain is really this bad — why I’m not taking a prescription strength dose. (For the record, I am on days that I need to, but purchasing the OTC version: a) is cheaper; b) lets me take less on days when I need less.) Similarly, there have been people who worry about my impending opiate addiction while others have commented that I should — again, if my pain is actually that bad — be taking a stronger opiate or opioid instead.

I’m not going to say that all of my advice givers (solicited or not) are not knowledgeable about endometriosis — because that is certainly not true — but none of them are experts in what it is like to be me.

The latest round of, “Why are you on that?” started when I switched birth control pills a few months ago. I switched initially for financial reasons. Now, aside from mild breast intermittent breast tenderness (that does not correlate with where I am on any given pill pack), I have no noticeable side effects to speak of; this in itself is a first. Add to this the fact that it manages my bleeding levels — and consequently, my pelvic pain — better than any other hormonal option I’ve tried, and as far as I’m concerned, we have ourselves a winner right here.

I had mentioned this to a couple of people in person and online in the context of, “This is what I have been using and how it has worked for me; your mileage may vary,” which is my standard disclaimer when discussing any and all brands of hormonal contraception.

The response?

But that pill is dangerous! It’s the one with all the lawsuits!

Which, as far as the lawsuits go, that much is true. There are lawsuits for this pill I’m on now. There were lawsuits for the last one. There were lawsuits for about four or so oral contraceptives and/or pain medications I’ve used before that. While some medication lawsuits are well founded, we are, on the whole, a litigious society — and just because someone sues doesn’t mean there is merit in the suit.

But this one raises your risk of blood clots and stroke! It’s bad!

Again, yes and no. Yes, some studies indicated that this particular pill raises my risk of blood clots above the level associated with the levonorgestrel-containing combined pills. Let’s assume these results are correct; I certainly did when weighing my choice to try this pill. That said, there are other brands — other progestins and other delivery methods — that raise similar concerns; my new pill is actually not unique in this respect. In all cases, the relative risk when using these methods remains lower than the risk of blood clots during pregnancy and immediately postpartum.

There’s also the fact that these risks — even though blood clots are a serious issue — don’t exist in a vacuum. For instance, if I’m considering them happening to me, I have to consider that I have virtually no significant factors that place me at increased risk. I also need to weigh the potential of a blood clot against the reality of plummeting iron and increasing pain (and therefore increasing need for those above mentioned pain medications, each with physical and psychological risks of their own). Even when the tradeoffs don’t necessarily merit an ER-worth risk, quality of life still has value — and I’m the one entitled to assign that value to my quality of life.

The truth is, my current regimen (medication plus other lifestyle choices) is not spectacular at managing my symptoms. If I suddenly found myself with a fairy godmother and a magic wand, we would definitely be having a conversation about a workable endo cure. But that doesn’t exist for me right now within widely available medical (and lifestyle) options. And the options I’m using right now are the ones that provide the best balance of pain/bleeding control against unmanageable side effects (e.g., the vivid and sometimes frightening hallucinations I get while on synthetic opioid medications). In other words, I’m taking “that” pill or “those” meds because they are the ones that best help me to live my life — with my priorities, as I decide.

Pacing

There’s a load of laundry in the dryer; I should take it out and fold it.

There are two more loads waiting to take its place; I should put at least one of them in.

In reality, I will pull out exactly one pair of clean underwear tonight — to wear for tomorrow. The actual folding of this load will happen tomorrow, and the rest of the washing I’ll save for a different day.

Sort of like, there’s a lesson plan I should be writing. It’s not urgent urgent — and it is planned in my head — but on paper (or on computer), I’m not as fully prepped as I’d like to be.

I should be doing it now, but in reality, I’m toying with the idea of writing it during my Wednesday morning staff meeting (where it still won’t be urgent urgent, but it will be getting there).

Also, this blog. I like to keep a certain amount of items in the queue, in case my Internet goes out or my computer explodes or I end up trucking some friend or creature (or me) to its respective emergency services provider. It’s been known to happen. Or just to keep from feeling like ZOMG! I have to write something NOW! or else there won’t be anything up for tomorrow. Exclamation point! I do not write well under pressure.

And yes, my queue right now is a little lower than I’d like. As with the lesson planning, it’s not urgent urgent — though apparently, I’ve decided it is more pressing than said lesson planning** — but I want to get writing a bit.

In reality, though, I will probably write this one real entry, maybe write one quick fluff pose (maybe not even), and call it good for a day or so. Almost certainly until after the lesson planning. Whether it trumps the laundry is anyone’s guess. (I have enough underwear to make it through the week, but some of my favorite Vibrams are getting pretty stinky.)

Today in my yoga practice, I still had enough energy to take every vinyasa I wanted to. But I made myself skip half of them so I’d be able to make it through my week.

I’m pacing myself, rationing my reserves.

You see, I started breakthrough bleeding today. (Hey, I can’t complain. I made it through 22 active pills, which is a near record.) On a Monday. (Did I mention that I queue posts, and so the day I’m writing is usually not the same as the day of publication?) Day before yesterday, the cramps started ramping up, and though part of me remained hopeful it was just a phase, a larger, wiser part knew what was happening. A period — technically, withdrawal bleed — is inevitable.

During a work week.

Due to a variety of factors — losing past instructional time, current major project, impending end of marking period, and of course, the fact that prepping for a sub is actually more work than is being there — taking a sick day is a last resort. No, really. An absolute last resort: I do not have the energy to plan to be gone.

And so, pacing myself. Holding back on the things I’d like to do today — when the pain is still pretty tolerable — so I will have something left for the things I’ll need to do when the pain is considerably worse.

Hi, endo — this is what I mean when I say that I plan my life around you.

** A note to non-teachers: Teachers procrastinate their lesson planning like students procrastinate their homework. About the only thing we’re worse about is our grading — which I am ironically all caught up on at the moment.

A Small Endometriosis Rant

Partly on the endo classification system itself, partly on how people tend to interpret it.

Short text explanation of how endo classification works — Upon observation (usually via laparoscopy), the surgeon makes note of the size and location of any endometriosis lesions they find. Each one gets a certain number of “points,” depending on size and location. (It’s like a game, whee!)

Interpretation mistake number one — Equating Stage IV (severe) endometriosis to more pain and Stages I and II (minimal and mild) to less pain. As many other sources will explain, there is no particular correlation between endo stage and pain. It is quite possible to have Stage III or IV endo and have minimal or no pain or to have Stage I or II endo and have frequent or severe pain.

Interpretation mistake number two — Failing to recognize the strong reproductive bias in the staging system. For endometrial lesions of comparable size, lesions rate anywhere from twice as many to four times as many “points” if they’re on the ovaries as opposed to the peritoneum (pelvic cavity). As for adhesions, the only ones that rate points are those that involve the ovaries or fallopian tubes.

For instance, I have dozens — if not hundreds — of small endometrial implants in my peritoneum, at least some of which (the ones biopsied) are deep. Two points.

There is some posterior cul de sac (basically, the way back of the vagina) endo going on, but not enough for my surgeon to deem it even partially obliterated. Zero points. (Though the gynecologist I saw after I left that surgeon wondered if he hadn’t miscategorized it — so maybe four points?)

And there are also multiple pelvic cavity adhesions — at least some of which, as evidenced by biopsy, have endo involvement. Zero points.

So there’s basically a situation where endometriosis is running deep and wide throughout my pelvis but where the classification system labels it as “minimal” or “mild.” Not only is that a piss poor way of categorizing pain (which, fortunately, most people who are familiar with endo understand), but it’s also a woefully inaccurate way even of classifying the physical impact — the physical presence — of endo on my insides (which, unfortunately, even a lot of people who are familiar with endo do not understand).

5 Challenges & 5 Small Victories

I didn’t really write yesterday, but I think I can handle today’s blog prompt. It involves numbered lists, after all — and I love numbered lists.

5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges:

1. Increasing Pain — Not necessarily in intensity but in frequency and duration. Several years ago, I estimated feeling pain for about two weeks out of every month. That gradually increased to two and a half, then three, weeks. Then “most days.” Now I can’t honestly say that I experience days without endo pain. There are low pain days and bad pain days — and in-between pain days — but saying goodbye to the reality of pain-free days has been rough.
2. Decreasing Mobility & Stability — My hips and back are stiffer more often, for no apparent reason. Not like, I worked them hard the day before or I slept on them funny. And unlike stiffness from those types of causes, I don’t work out of it from everyday movement. It’s also more often that I can feel one of my pelvic or hip nerves cut out from under me for no particular reason. Just working and then — whoops! — not.
3. Giving Up on Menstrual Suppression — For a long time, one of the goals of my endo management has been to try to suppress my menstrual cycles, which has resulted in multiple methods of fail. I bleed all the time. I bleed all the time with bonus side effects. I bleed more normally, but the thing that regulates my bleeding falls out of me. I bleed sufficiently erratically that I have no idea that what I’m actually experiencing is a chemical pregnancy and miscarriage. (This, by the way, is not recent.) There was always the implicit promise that if I could eliminate the period-like bleeding, then I could also eliminate the pain. Well, I can’t and I can’t. My current best hope, it seems, is to wrangle the bleeding — and therefore the worst pain days — into a generally predictable schedule.
4. Invisibility — This encompasses two areas that sometimes conflict. One is my frustration that since I usually don’t appear to have any kind of impairment, then people — coworkers, people in the general public, sometimes friends — expect me to perform as if I’m healthy and able-bodied. Or that they expect me to prioritize my energy expenditures according to what makes sense to them (e.g., going out in an evening versus going for a run). The second is my discomfort with admitting — in person, to people outside my intimate circle — that this is not the case, as well as negotiating what that entails in concrete terms.
5. Trying to live up to everyone else’s expectations and blaming myself when I can’t.

5 Small Victories:

1. My Primary Health Care Provider — Who is unequivocally on my side. As such, she addresses what concerns she can and tries to refer to specialists when she can’t. (Though admittedly, the specialist referrals have been a bit of a crapshoot.)
2. Yoga — Sometimes people ask why, if I’m dealing with a chronic pain condition, I gravitate toward such a vigorous practice. The answer is that putting my body into a variety of postures that each demand strength, balance, and control, I am helping my “trunk muscles” (core, hips, thighs) compensate for the decreasing mobility and stability.
3. Tax Refunds & Flights — Recently, I received my tax refund from the government and used it to purchase a plane ticket to see my mom and sister this summer. Between the quantity of the refund (I know, I know — it means I’ve been letting the government take too much money all year, but whatever), scouring the Internet for the best rates, and admitting to myself that I Need This, I was able to get seats with extra room on four shorter flights (2.5 hours + 2.5 hours each way; as opposed to 0.5 hours + 4.5 hours each way) rather than risk the Dreaded Middle Seat on the standard flights from the major carriers at my local airport.
4. Carpooling — Even when I end up taking the bus home, somtimes it is the world’s biggest relief to know that I do not have to drive — and therefore potentially risk my own and everyone else’s safety — while in pain. (Or while on narcotic pain relievers, which is legally a bigger conflict.)
5. I want to say my current hormonal birth control pills — but that remains to be seen. There is a reasonable chance, though, that they will accomplish the predictability task set out for them.