That Endo Moment

Or series of moments.

When you stop taking your blood-regulating oral contraceptives a month before school lets out, on the bet that the end-of-semester stress will keep your bleeding at bay better than the synthetic hormones.

And when you notice, a month later, that your gamble paid off.

And when you shrug your shoulders and tell yourself, “Huh. If that’s what it takes.”

No, I don’t think that end-of-year stress — especially this year’s end-of-year stress — is healthy or sustainable. But neither is living with chronic pain.

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.

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.

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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.

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** 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.

Pelvic Floor PT: The Office

Continued from here. Disclaimer about how this is not medical advice, nor is it intended to be universally applicable applies.

Q: When I think about physical therapy, I picture an open setting, where multiple people might be sharing the same gym-like or fitness room. That doesn’t happen with pelvic floor physical therapy, right? Like, other patients are not going to see my genitals?

At least where I went, this was not the case. While there were some common spaces — spaces where my PT observed me doing common, okay-for-public movements like walking and sitting in chairs — anything that involved touching (and yes, some things did involve touching; I’ll get to that later) took place in a closed, private room.

Q: So how does the first visit start out, exactly?

At the beginning of the first visit, I completed some patient history forms in the waiting room. It was fairly similar to other patient history forms I’d filled out in other provider offices: allergies, other known health conditions, past injuries and surgeries (types and dates), past pregnancies and childbirths, and known family histories of various health conditions. There was also a section I think was more specific to pelvic issues, asking if I experience — frequently, occasionally, seldom/never — period pain, urinary incontinence or urgency, fecal incontinence or constipation, pain with sex, difficult penetration (e.g., inability to have PIV sex or to use tampons), or other unexplained pelvic pain. I say “I think” because while I’ve seen other providers ask about virtually all of these issues (maybe not fecal incontinence or difficult penetration), I’ve not seen them all together like this.

Then a medical assistant called me back to what looked like a standard office triage area. She took my temperature, blood pressure, and weight. I don’t know why, specifically, they did it, and I didn’t ask at the time. I mean, I assume in general that a lot of offices use the temperature, blood pressure, and weight measurements to establish baselines and to note any marked change from the pattern. However, I’ve also been to some providers where it felt like the rationale for taking such measurements was “we do these things first because we have always done these things first.” I couldn’t say which it was here — though I’d like to believe it was the former — because while they repeated the process for every visit, they never mentioned changes because I had no changes worth mentioning.

After that, she led me into the exam room.

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.

I Like These Links

My Plate Does Not Have to Be the Same as Your Plate by Kath at Fat Heffalump [note for discussion of food policing] — “I’m really struggling to understand why people can’t see that what other people eat is none of their business, and what they choose to eat doesn’t need to be moralised or proselytised as though it’s the only way to eat.”

Bisexual Women Almost Twice As Likely To Be Abused As Straight Women [notes for sexual assault, domestic abuse] — “The first nationwide study to break down domestic violence rates by self-identified sexual orientation has found that lesbian and bisexual women are at higher risk than straight women, with bisexual women facing especially high rates.” (Found via Feministing.)

I Don’t Care If You’re Healthy by Sarah at Radically Visible [notes for discussion of ableism and fat bias] — “A person’s right to an enjoyable life, to be treated with respect and to have access to all the things I want fat people to have access to, such as quality medical care and clothes that fit, is not predicated on how healthy they are.” (Found via Kath at Fat Heffalump.)

Closed for business at Exile from Hysteria — “The assistant cheerfully noted my surgery plans somewhere in my file, then pulled her rolling chair in close…. ‘Ya know, I’d love to get a hysterectomy,’ she said. ‘I’m so tired of getting my period. I mean, I’ve already had my babies, so what’s the point?’”

Pretty by G at Running While Fat — “Then I got to thinking about the complicated relationship I have with ‘pretty’, and how pissed I get that pretty is the best and most desirable thing to be.”

Duckies

It’s a bad pain day, which makes it difficult to concentrate — with meds or without. Naturally, I am meandering through old episodes of Sesame Street on YouTube.

Because Sesame Street makes me happy. And is easy enough for my ouch-addled brain to follow.

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.