Emily (paintedglass) wrote,
Emily
paintedglass

Endometriosis: full narrative

   I have recently had to confront the fact that I no longer clearly remember what it
really, truly feels like to have an experience, a single waking moment, that is not in some
way colored by the experience of pain. About a year ago, the same statement wasn't
true; the truth of that statement has been an actively developing fact over about the last
year of my life. In the last year, I've experienced a major and even rapid personal
decline in my ability to function, and major escalations in terms of increased pain and
new symptoms of relatively recent onset. I am writing the following narrative in order to
tell a personal story, in my own words, which I have never truly told before. Much of
what I have to tell has taken place over roughly the last 14 months. But the current state
affairs (medically speaking), such as I find it today, is something which has in reality
been more than 15 years in the making. In order to put the last year in its full and proper
context, I feel the history should begin at its most truly relevant beginning.

   My first period, which occurred a few months after my 13th birthday, was, for a long
time, one of my worst. It hit me like a swinging steel column, and brought on what at the
time was undoubtedly the worst, most intense pain I had ever up to that point
experienced (and I was at the time already a migraine sufferer of many years, no
stranger to high level pain). It started out with intensely cramping diarrhea. I had never
been one to get randomly loose bowels outside of the occasional 48hr stomach bug, and
even then, I had never experienced such terrible cramping along with a bout of diarrhea.
I was expecting that during the half hour I spent sitting on the toilet moving my bowels I
would begin to experience some relief in the unusually intense cramping pain, but to my
surprise, even as the diarrhea stopped, the painful cramping which preceded it only
continued to intensify. Menses were the last thing on my youthful, premenarchal radar &
so I remained on the toilet for a long time as the cramping mounted, expecting more
diarrhea to follow... None did, and after a certain point the cramps became so intense
that I started breaking out into a cold sweat, and had to crawl from the toilet on the floor
into my parents bedroom and onto their bed where I spent the next two hrs writhing and
sweating and breathing in ragged gasps until I passed into a delirious sleep. The next
day after school I began to bleed and everything, I guess, made more sense.

   This has always been what my periods were like. Early on in my adolescence, when
trying to develop my yardstick for comparison of my menstrual pain with what one might
call 'normal', I would be told that 'normal' was a range, and that some women just tend to
fall at one end of that range in terms of their menstrual experience, and that since
periods can be worse (more painful, more severe) during adolescence anyway, I would
have to just deal with it every month until it 'settled down' (hopefully) at some far-flung
future date...

   ...And so I dealt with it. Since I was a severe migraine sufferer for most of the school
years leading up to my first period, I had already been dealing with a chronic pain
condition that would cause me to miss school with some frequency. Luckily, by the time I
was 13 and starting my period, my headaches had started to improve in terms of their
severity and frequency and from that point on seemed to hit me more in conjunction with
my period pain, rather than at other times. Now when I missed school because of a
migraine, it was usually a migraine of menstrual origin and accompanied by bad cramps.
Even when I didn't have a migraine with a period (I always had insanely horrible
cramps), that's what I would say was wrong with me when my cramps hit. People were
always more sympathetic to my migraine pain than to my menstrual abdominal pain. So
that's what I usually said was wrong.

   Never the less, at this point my periods were still, despite being incapacitatingly
painful, usually of a mercifully short duration (1-3 days of intense-but-intermittent
cramps, 2-5 days of normal bleeding). The interference in my life that the severity of my
dysmenorrhea had was limited to my time of active bleeding, with usually no more than a
couple days affected.

   My periods and dysmenorrhea continued from age 13-15 mostly unchanged through
the end of 9th grade.

   At around age 16 I developed anorexia nervosa, and was hospitalized with a BMI of
14.4. I spent 2 weeks on the children's floor of Beaumont Hospital in Royal Oak (MI),
followed immediately by 6-8wks spent in-patient at River Centre eating disorders clinic in
Sylvania, OH.. I was released to my parents and began receiving intensive
multidisciplinary outpatient treatment including 2x/wk counseling with a psychotherapist
(Dr. Ann Weeks Moye, PhD) whom I currently still meet with on a weekly basis. I did not
get my period back until a few months after my 17th birthday. *********************

   Over the next three years (age 17-20) my periods became increasingly painful and
severe. I would be essentially bed-ridden every cycle for as long as the cramps lasted,
only now when they hit, I would be in writhing agony for 48hrs straight and would find
myself taking high doses (esp. for my body weight at the time) of OTC painkillers and
living plugged into a heating pad. Sometimes, a given cycle (as bad as they normally
were) would surprise even me with its intensity, & more than a few times did I wake up
on the floor of my bedroom or bathroom after having apparently passed out from pain. I
would wake up shivering as if from a nightmare when the clammy perspiration began to
dry on my skin. It was traumatic for my partner at the time to have to sit with me while I
would be going through this, knowing there was nothing he could do to make it stop
even a little bit.

   My first and only period-related ER visit took place when I was 19 (and living in
Dayton, OH), and to this day remains one of my most painful and terrifying menstrual
experiences ever... I had been sitting with my heating pad trying to focus my breathing
and relax my muscles as the invisible monthly torturer gleefully went to work on my
every last nerve ending, when suddenly (impossibly! inconceivably!) the pain I'd been
feeling began to intensify further. It was so much worse than anything I had ever
experienced up 'til that point that I began to doubt that anything as 'normal' as a period
could possibly bring on such a response in my body. My heating pad seemed smaller
than a postage stamp; the pain was spreading down my legs, and up my back and
sides. It seemed like there was such an overflow of pain from my abdomen and pelvis
that it was referring itself to my ribs and shoulders and armpits and groin and thighs
and... I needed to apply heat to all these places, so I hobbled into the bathroom to fill a
bath.

   With the water running, I sat down on the toilet and, as if by the mere act of sitting,
had a sudden unexpected bowel movement (highly unusual for me at the time, as I was
at baseline typically more constipated than anything else, esp. after the recent toll of
anorexia on my body). The water continued to run, filling the tub at an excruciatingly
slow pace. I could no longer sit on the toilet, so I slid down to the floor and draped my
arms over the side of the tub waiting to get in. By the time the tub was somewhat full I
could barely think straight with all the pain, and could do little else to get in the water
than to roll myself over the edge of the tub with a great, floor-drenching splash.
("Mission accomplished.") It was within less than a minute of being in the water, though,
that 'all hell broke loose'...

   ...I felt instantly nauseous and dizzy. It seemed like whole sets of unknown muscle
groups were clenching and spasming without any control. After what was somewhere
between a few seconds and an eternity, I realized that I could not voluntarily control or
move my legs. I felt the need to get out of the water and sit on the toilet again but I
could not command my body to stand. I felt through the cramps my bowels starting to
move again and tried to gather all the mental control I could summon to hold my
continence until I could drag my self onto the toilet, but I could barely think or breath, and
I was delirious and nauseated and - before I could flop back over the side of the tub, I
felt a wave of stabbing involuntary abdominal contractions and realized that despite my
best efforts, I had accidentally shit in the tub.

   Horrified, I finally lifted myself over the side of the the tub, and once more I was on
the bathroom floor. The most stabbing of my pain seemed to be directly over the
location of the appendix and I was worried that the timing of the pain with my expected
period onset was possibly a mere coincidence, and I wanted to call my romantic partner
(who was working from his home office down the street) and tell him to come get me,
that I needed to go to the ER. My phone, however, was at the other end of my
apartment, and so I began the world's longest, slowest crawl across the floor toward it.

   When I finally reached my phone and got through to Mark (my S.O.), I was nearly
incoherent and barely able to gasp out the words to convey what I needed. He
immediately dropped his two young children off with a neighbor and came to get me.
When he got there, my condition was unchanged, and he had to carry me out to the car.
As we rushed to the ER I tried to tell him more about what was happening, but all I could
manage was, "Something's wrong. Something's... wrong." and, "It's probably my...
period... but... something... I don't know...". When we arrived, I tried getting out and
walking in myself, but after a few steps, Mark just picked me up and carried me into the
ER.************************

   After that frightening experience, I started reading up on "severe dysmenorrhea",
hoping to discover the possible cause(s) of my freakishly painful symptoms, and learn
what might possibly be done to MAKE IT STOP. It was at this point that the word
'endometriosis' first entered my vocabulary, and the more I read, the more convinced I
became that it represented the single most likely diagnosis, given my symptoms
(should they ever be investigated). I explored and entertained the possibility of other
diagnoses and, allowing for the chance that my symptoms were indeed merely outliers
within that nebulous range of 'normal', I entertained the possibility of no diagnosis. I
needed, like the ads on TV say, to 'talk to [my] doctor' about this. I would need them to
help me confirm or lay-to-rest my suspicions, or at any rate get to the bottom of it all, or
(barring that) at the very least offer me treatment to help manage my symptoms.. As
someone who'd relied for nearly the last 2 years on local urgent care clinics for the one
or two minor acute needs I'd had while living in Dayton, 'talking to [my] doctor' would
necessarily, for me, entail finding a doctor.

   At some point while I'd been living in OH (prior to the ER trip), the MI doctor who'd
handled/provided my general medical care since the time of my adolescent
hospitalization informed me she was leaving professional practice indefinitely to start her
family. Unsure of how much longer I would even be living in OH, I decided after the ER
trip to see a female GP back in MI from the general practice I'd gone to when still living
at home with my parents.

   In the exam room during that appointment, I told the doctor of
my menstrual worries and woes. I told her of my ER 'experience', describing it as the
major precipitating event that had led me to her office for the consult. I explained that
the problem had been been getting worse in recent months, that my periods were
becoming alarmingly more severe in terms of pain, bowel symptoms & blood-loss.
Sometimes, though infrequently, sex was painful (during or after), if I was on or near my
period. Sometimes having sex seemed to 'stimulate' the onset of my period, causing
immediate post-coital cramping and bleeding, even if I wasn't really 'expecting' one to
start just yet. It wasn't like this all the time, but when it happened it was bad.

   I told her that these extra-especially-intense 'super periods', like the one that sent
me to the ER, were becoming an increasingly frequent occurrence, and that the
crippling, mind-numbing pain they brought along with them was coming to define a new
norm for me, whereas once upon a time they were occurring only a few times a year. I
told her that in the past, even my most intense cramps still only usually occurred in a
single 1-5hr episode just prior to bleeding, and were usually followed by an otherwise
uneventful & unremarkable rest-of-the-period. I described my growing alarm, though, at
the fact that over the previous 6-12mo., the super-crazy pain of initial-onset cramping
(while always eventually receding somewhat from its peak intensity), was more and
more often coming to be followed by 36-72(+)hrs. of continuous, cramp-like pain. Like,
bad pain; take-the-day-off-work-or-school-pain, even if not rush-to-the-ER-with-apresumably-
exploding-appendix-pain. The 'new norm' now was generally 1-3 days of
the former type of pain following an initial 1-8hr. episode of the latter type. Also, I was
often cramping (often badly) in the 1-2 days leading up to my period as well...

   ...And this is what it had come to be like, basically every month, while I was
seemingly experiencing more pain and heavier bleeding with each passing cycle. I told
her that as a typically chronically-constipated person, I thought it odd and found it
interesting that my periods had started making me intermittently-diarrheal for the extent
of their duration, & that my now-monthly super-cramps had themselves become a major
trigger for either diarrhea, or the additionally painful passage of hard-formed stools
(Bristol Type I&II). I told her that as a new college student with academic disabilities, I
was struggling with the unpredictable loss of time otherwise budgeted to scholastic
productivity. I broke down and confessed that it had finally progressed to a point of
actually, truly, interfering with my life.

    I told her that the experience of going to the ER, especially with the 'type' of pain that
brought me in, was frankly traumatic. I explained that I had since made it a top-priority
Goal-In-Life never to have to go through that nightmare again, but that I needed her
help to get this thing under control... At the outset of our conversation I had hoped that
she would at some point bring it up herself, but, when she didn't, I waited for a good
opportunity, and hesitantly asked if maybe, possibly, it sounded like it might be
endometriosis.

   Upon hearing my question, she smiled at me and asked if I thought that's what I had.
I said I honestly didn't know, but I thought it a strong possibility that bordered-on-likely,
and she asked what made me think that. I replied (somewhat perplexed), that
everything I'd just been telling her abou t constituted my 'reason' for thinking so, and that
I was telling her because I wanted her to tell me, in her expert medical opinion, if she
thought so too, or at least felt it likely enough to actively investigate further. I was
vaguely aware, from what I had read, that real definitive diagnosis of endometriosis
could only truly be made surgically, and with this in the back of my mind I was hesitant to
even bring up the general subject of diagnostic investigation(s) knowing that surgery
potentially lay somewhere at the end of that path. I wished, of course, to avoid the
prospect of surgery if at all possible, and I was also worried that I would sound, by
simply broaching the subject of diagnosing endometriosis, like I was somehow asking for
surgery... I would have considered it "bad form", at best, to request surgery or referralfor-
surgery from a PCP on the first consult and so I posed my question hesitantly and left
it open-ended...

   ...and I was genuinely interested in her thoughts on the matter and was curious as to
what suggestions she might make. What she told me was essentially this :

   She thought some aspects of what I described sounded like it could be
endometriosis, but that given my age (19) she thought it unlikely. As to the issue of
making a confirmative diagnosis though, this was, fortunately, something of a moot
point, as the treatment would be the same for me in either case; I didn't have to "have
endometriosis", diagnosed or otherwise, to get the benefits of her recommended
treatment plan. What I did need was a PAP and a pelvic exam, both long overdue. I was
to be put on an extended-cycle, combined oral contraceptive pill right away, and for this I
needed to promise to try to quit smoking. Given that what I basically was reporting was
problematic periods, the goal of the extended-BCP was to limit the number of periodsper-
year I'd need to put up with. Plus with any luck, she said, in time I might find that
even those periods I was still having, had nevertheless become lighter and less painful.
I could also look forward to potential improvement in my probably-hormonal acne (which
I'd mentioned earlier and was apparent on my face). I would be able to know in 3-
preferably-6mo whether the BCP was working/helping/whatever. If by then I was still
having "problems", or if somehow (god forbid) things had managed to get worse, I
should see her to follow-up.

   Frankly, it all sounded very reasonable, and I was eager to begin taking my
prescribed medication as instructed; cost, inconvenience and ADD be damned. The
birth control prescribed was Seasonale (levonorgestrel .15mg/ ethinyl estradiol .03mg, 84ct.
active), and since the Sunday on which I had planned to start the pack coincided with the
onset of my next period, I started taking the pills the same day (Sun.) that I started fullout
bleeding (I had already been cramping and migrainous for more than a day). The
pills did not seem to affect this period, which wasn't really a surprise. It was a bad one
though, nearly as bad as the month before. If perhaps not necessitating further ER
visits, this was only because I had come to view my last ER trip as a "fool me once..."-
experience; nothing short of a gunshot wound to the face would get me to return to an
emergency room willingly and no amount of pain, on its own, would ever again be
sufficient.
   At one month into the pack I was doing fine, the biggest challenge being simply
forming the habit of taking every pill at the same time each day. At around the time
when I would otherwise have been expecting my next period, I did notice that there was
some minor-to-moderate twinging and cramping, although I didn't bleed. But within days
it passed, and was significantly more manageable than my last two cycles had been; I
considered it an improvement.

   By two months in, though, the acne-improvement part of the hormonal experiment
was a decided failure. If anything it seemed to be aggravating my acne, to new neverbefore-
seen levels of severity.... Which would have actually been fine, but for the fact
that I was also noticing an increasingly-ever-present feeling of being painfully
premenstrual; like, despite the absence of menstrual flow, I was still getting
premenstrual(oid) cramps (as to be distinguished from primary menstrual cramps). This
cramp-like pain did not rise to the intensity level of menstrual cramps, and I considered
that a major plus. On the other hand, those had long-ago ceased being the only type of
cramps that plagued me, and I'd hoped that "saving [me] from having to go through a
period" would've meant more than just saving me from this one symptom. A month
earlier, the twingey bloated crampiness that I got around the would-be time of my period,
had passed and resolved in about as many days. At two months in, these symptoms
had begun like before but they quickly became a good deal worse... and this time they
kind of just kept on hanging around, like a period badly wanting to happen, for the entire
last month of the active pill pack. By the last month of the pack, I was getting IBS(oid)
symptoms, and I didn't know whether to look forward to or fear the white tablets at the
end of the pill sheet.

   Well, the correct answer turned out to be fear. I was visiting home when it set in.
 
   When I first arrived, I was breaking out so badly on my face that my mom started talking
(somewhere between insultingly and adorably) about scheduling me for an "emergency
dermatologist appointment" on her dime. I did not end up going on such a consult
during my visit home but I did have to post-pone making the return drive to Dayton due
to how bad the pain was and how long it lasted.
 
   At this point my sense of the time-line of events gets a little bit fuzzy. I did eventually
get that PAP and pelvic exam, the results of both of which were unremarkable. I know I
went back into the doctor's to follow-up roughly around this time and I don't remember if I
saw the same or a different doctor. Whomever I did see though, I remember telling them
about my poor response to the HBC treatment, and I know I was counseled to try giving
the Seasonale another 3-month-try, "just to be really sure". I'm pretty sure it was at this
point that I was counseled that if I wanted to "give up" on the birth-control treatment
entirely, as in, categorically, there were other, *stronger* medications to be tried, ones
that "turn off your ovaries", & "produce a chemical menopause". I do not remember if
the doctor prescribed me another course of Seasonale or not. If they did, I probably
filled it, but I don't recall how far into the pack I made it before ultimately discontinuing. I
did ultimately discontinue it though, for I was, even with consciously managed
expectations, worse than unimpressed with the results.

Blah, blah, blah, BCP, acne, BCP, pain, suffering, ultram, percocet, BCP, blah, blah,
blah...******************

   ...Over roughly the next 4-8 years, I continued to make the occasional half-hearted
attempt to re-open the topic for discussion with my various health care providers, but the
extent of my treatment (of any aspect of the problem) was very limited over that timeframe.

   During this time, especially in the beginning, the nature of the problem was such
that I was much more able (relative to now) to go on basically managing the symptoms
on my own, by whatever means available to me. The quality and contents of my limited
# of medical encounters (those that even touched on this subject) mostly served to do
little more than affirm this fact in my mind. I variously tried this or that BCP, in a dabbling
expectant fashion, on and off, here and there. My experience each time would be more
or less a reprise of the first, with only minor differences. None of the various BCPs I've
tried have ever really given me any of the hoped-for benefits I'd been looking for over the
years, and all of them eventually presented me with a fundamentally similar set of sideeffects
(differing somewhat only in emphasis). As a result, many of the details of my
"treatment" over those years, particularly in terms of chronology, are a bit jumbled in my
mind, but can be easily summarized so Here goes nothin'...

   After the failed-try with Seasonale, I know I was at some point also tried on
Seasonique (identical to Seasonale except that in Seasonique the last 7 pills contain .
01mg estradiol), with possibly even poorer outcome. I know I was prescribed Loestrin24
Fe (norethindrone acetate 1mg , ethinyl estradiol .02mg), but as I recall this was just for
emergency contraception; I may have stayed on it though for while after that, but I don't
clearly recall. ...After hearing a friend sing its praises (at length), I did at some point go
into the doctors office asking for Ortho Evra (norelgestromin 6mg /ethinyl estradiol .75mg
weekly patch), primarily for its BC properties and the added convenience of its novel route
of administration. Around age 20-21, I stayed on the patch for a number of cycles,
3wks. on, 1wk. off, using the patch as directed. I sometimes noticed a slight decrease in
the heaviness and duration of my m. flow during the patchless 4th week of each month,
but heavy/prolonged bleeding (by itself) had never been a primary or major problem of
mine, and while the effect was obviously welcomed, I was chagrined to admit that during
that 4th week off, my pain each time was much unchanged.

   It was still so bad, in fact, that I eventually became tempted to try experimenting with
using the patch in a continuous, extended fashion. I decided to see what would happen
if I started skipping periods. My friend, I came to learn, had been doing so for the last
6mo.; I decided to give it a try. By the third or fourth month of continuous-use, I was
feeling about the same as I had on the extended levonorgestrel/ee regimen, but with
considerably more bowel urgency, bloating, and nausea. A doctor I saw about my
digestive symptoms around this time said, "IBS" and "avoid stress". I didn't mention
OrthoEvra as a factor since I wasn't taking it as prescribed, but I suspected a causalconnection.
Why would I suddenly have IBS? Yeah, I was nervous and stressed, but to
no greater extent than usual and in many ways much less so. I decided I'd finish
wearing the patch I had on for the week, and allow a natural (or at least withdrawal)
period to follow that.

   Within 24hrs. of that decision though I changed my mind and just took it off. The
extreme pain continued like always, but the "IBS" stuff cleared up after cessation of use
of the patch. That was the last attempt at HBC treatment I would try for the next several
years. My own personal "index of suspicion" was still highly raised when it came to
endometriosis, but I had been made well aware of what I could expect in terms of "next
steps" in the treatment of my symptoms, had been told diagnosis was a low-priority, and
had been made to feel like my pain was an even lower priority still. I was also, on some
level, vaguely afraid to escalate my requests for medical help since somewhere in the
back of my mind sat the one or two hysterectomy-related comments I'd gotten from
doctors (whenever I pressed them with questions), flashing on and off in neon colors.

   I don't really know if any one doctor ever actually sat me down and explicitly told me
that Lupron™ and Hysterectomy were my only options (after HBC), and I actually doubt
that they did since I don't recall any conversation at all in which options were ever
actually clearly laid out and openly discussed. But Lupron™ and Hysterectomy were,
nevertheless, the only 'options' that I believed would be initiated by any of the providers
I'd seen. Because of this, I kind of shelved the idea/question of endometriosis
indefinitely. *************************

   At some point toward the end of my time living in Ohio, while staying at my parents on a visit
home, I came across what appeared to be the remaining half of a >10yrs-expired bottle of percocet,
prescribed to my grandmother in 1991, the year she stayed with me and my parents in our duplex,
dying of cancer. I remembered that year clearly. I was in first grade, and my parents had just bought
a 2-family house down the block so they could move my mother's parents into the home and care
for my severely demented grandfather while my grandmother slowly died of colon cancer in the
bedroom upstairs. The bottle was dated to just a few months before she passed. It was a sad
reminder, but I was glad to have made the find. It was a relief to have something to keep in the
cabinet, like a fall-back, for those moments every so often when the pain would become more than I
could stand. Despite their fairly limited supply, I was able (through a system of strict rationing which
sought to balance the urgency of the present need against the fact of their dwindling number and
potential future need) to make that 1/3 bottle of percocets last well over 5 years, which turned out
to be right around the time I turned 25 and lost coverage under my mother's employee health-plan.
Losing my health coverage really, um... sucked. I had been continuing to see my therapist, selfpay,
on a twice-monthly basis, and I had exhausted the lifetime maximum for such care years prior to
losing coverage entirely (I was still active recovery from anorexia when that particular maximum was
reached, and had been self-pay ever since). It was at about the same time I was losing my coverage
that I started experiencing a severe worsening in my perennial respiratory allergies, as well as
recurring episodes of anaphylaxis, which were deemed officially to be idiopathic, but which I suspect
(on at least 3 occasions) were triggered by mold exposure.

   Previously in this narrative, I mentioned that no amount of pain would ever again by itself be
enough to get me to willingly return to an ER. The statement remains true, even to this day, but it
was not too long after I turned 26 that the anaphylaxis started happening at random. In a span of
less than 2 years I'd been back to the ER (covered head-to-toe in confluent urticaria, near-syncope,
face like a blow-fish) more times than I care to recall. I had to stop seeing my therapist in order to
pay for the rising cost of my allergy care, at first as emergency care in times of anaphylactic crisis,
then later in the form of immunotherapy treatment (which was desperately needed and has given
me my life back since commencing it).

   So while it's true that over the last 4 years there's been a continued decline in my
menstrual health, during the first 3 of those 4 years, the decline was more insidious than
rapid. It's really only been in the last year, though, that the decline has been precipitous.
A little over a year ago, with my allergies more or less under control, I decided it
was probably time, insurance or no, to establish an ongoing relationship with a single
doctor, so they could get to know me and maybe help me start getting a better handle on
my health in general. I started seeing Kendra Schwartz, MD, (WSU Physicians Group,
Family Medicine) as my regular PCP. She has been my regular doctor for about the last
year...

   ...Fast-forward to the present day. Its hard to even describe the present state of my physical
health because its gotten to a point where many of the words that I'd have to use to truly,
accurately describe the quality and magnitude of my symptoms, are words which (at least until
very recently) I would have never imagined myself using in self-description. It's hard for me to
admit what describing my recent history and present state forces me to admit. For example, I
would not describe myself as bed-ridden, but only because I prefer the hair-splitting accuracy of
"comfy-chair-ridden".

   For the last many months, I've had chronic but intermittently-worsening pelvic/abdmn/back
pain that intensifies greatly on a cyclic monthly basis. I have only been keeping track of the
timing of my period-onset since the beginning of this year, but my sense of my cycle prior to this
is that it has always been somewhat irregular, but generally only mildly so. The dates of my
cycles since the beginning of the year are as follows:
Jan. - ?? (toward the end of the 1st wk. of Jan.)
Feb. - 4th
March - 19th
April - 18th (light spotting on 17th)
May - 17th (*)
(*... Worst pain ever experienced, ever. More on this later.)
 
   I've lived with my fiance, Ryan, in our current apartment for about the last year (15 months).
It was during the 6mo. prior to that, while we were living with his parents during our apartment
search, that I first noticed myself getting bowel urgency in a bothersome way. It was the first
time in quite a while that I'd needed to share a bathroom with anyone other than Ryan, and living
in a 1-toilet house with 3 other people (incld. another woman) was a surprisingly difficult
challenge. I'd never really needed to wait my turn like this (true), but then again, there really did
seem to be a marked uptick in the level of intestinal urgency I was feeling (sharing one household
bathroom with Ryan and his parents just served to make it more noticeable).

   It was also while living with his parents that I began noticing increased urinary frequency,
the abnormality of which eventually became undeniable. With our sleeping quarters located in
the basement, and on a different level from the home's only bathroom (ground floor), I found my
already chronically disturbed sleep interrupted further by the incessantly recurring need to make
bathroom trips upstairs. I have had severe difficulties falling asleep for most of my life, at least
as long as I can remember. I am usually very, very slow to fall asleep. It became frustrating to
have to schlep up and down the stairs, all through the house and back just to empty my bladder
before bed, only to find myself unable to fall asleep before the sensation of fullness and urgency
to void again returned to distracting enough levels as to prevent sleep. It started seriously
disrupting my sleep.

   I was working, at the time, in a quasi-supervisory capacity/position at an extremely
physically/mentally demanding job wherein I'd become the de-facto trainer of nearly all newhires.
I could not afford the further loss of sleep I was experiencing from all this increasing
bladder frequency, and so I improvised a temporary solution in the form of a nighttime chamber
pot (a sacrificed kool-aid pitcher, actually), kept under the bed and emptied/rinsed daily. I used
this nighttime system for most of the 6mo. we lived there, and as solutions go, it seemed fairly
adequate. By the time we were moving into our new apartment though, at the end of those 6mo.,
my urinary frequency had gotten steadily worse, and so I've never stopped keeping a nighttime
pee-container under/beside my bed. Screening/blood-work (fasting glucose) was negative for
signs of (pre-)diabetes.

   At some point, after mentioning my substantially increased bladder frequency (and now,
urgency) to my Dr. (and getting mostly blank stares in response, along with a change-in-subject
when I couldn't confidently calculate a daily pee-avg. from my variable daily experience), I
decided to keep a meticulous 24hr. Pee-Diary. I measured the volume of liquids I drank, the
foods I ate, and marked the times I ate and drank them. I noted the time of each void and
measured the volume of each output. My feeling was basically, the more data generated, the
better. When I was done, I brought it back in to the doctor and gave it to her. I gave it to her, not
just to read, but also so it could be put in my chart and made a part of my med. record. I was
disappointed not to find it in the records from her office that were sent me per my recent request
(I didn't retain a personal copy; who knows what she did with it?). Basically what I learned from
keeping the pee-log was that in the 24hrs. recorded, I urinated 14 times, and that'd been with me
trying to hold it for much of the day; had I actually peed whenever I first felt the need, the
number would have probably been closer to 20. The diary confirmed that I was not taking in
excessive fluids, not excreting volumes excessive for the amount taken in. In fact, the volume of
my individual voids was (unless I'd been painfully holding it for hours) actually quite low. The
daily volume overall was normal. The situation was diagnosed by my doctor as, "Probably a bit
of interstitial inflammation", and left at that. I told her about the sometimes marked worsening of
this symptom during, and in the lead-up to, my period, but she did not seem to find this very
relevant.

   About a year ago, during a particularly nasty episode of cramps, I started feeling a throbbing
ache in my right upper (inner) leg. Sitting in my chair, it was most acute in the inner-groin area
where the leg attaches to the body, but when I stood up and tried to take a step I felt a searing
pain shoot down the inside of my right leg, and upwards along the front of my hip to the right,
along my bikini-line. I could barely take more than a few steps at a time before the pain
collapsed me to the ground.  At work, I was allowed (begrudgingly, by my boss) to be put on
"light-duty" for a week, which still required that I spent nearly all of my shift on my feet, even
though just making the walk in from the parking garage was causing me to limp and bringing me
to tears. Beyond that week, though, I was made to understand, the sympathy would stop and full
duties would resume, whether I was fully ambulatory or not. And so I went back in to the doctor
to report/complain of the problem, which had emerged so obviously (to me) in conjunction with
my bad period pain. I had done absolutely, literally, nothing whatsoever to injure myself, in fact,
I had been seated when the leg-pain first started, clutching my heating pad, "handling" my
dysmenorrhea. What could I have possibly done, between sitting and standing, to have caused
myself an injury that would render me unable to lift or put weight on my leg on the first
attempted step? Well, I thought I should be scanned for cysts, and asked my doctor to order a
TVUS, which she did.

   A couple weeks later the doctor called to tell me the TVUS results were back and everything
looked normal; no cysts (nor anything else that might cause weird, sudden leg-pain) were
detected. She told me to call in a few weeks if the pain wasn't getting better. When I saw her a
month later (6wks. after the onset of the leg pain) I told her that I was shockingly still
experiencing significant pain in my right leg with lifting and weight-bearing, but that it was also
significantly lessened from before, currently manageable, and slowly getting better. She told me
that this sounded "very consistent" with a musculo-skeletal injury of some type, but declined to
speculate on how I might have sustained such an injury without managing to notice it. It took
upwards of 8wks before the pain from the (sustained-while-seated) leg injury receded enough not
to affect my gate. It took fully 10wks, truth be told, before it was finally gone (worsening briefly
during each of my two periods over that time). I had to take percocets (as much as I dared, on the
days I needed to drive and be mentally present at work) given to me by my soon-to-be mother-inlaw
(left-over in the cabinet from an old hernia op.) just to make it through the physical demands
of my day, on a number of occasions.

   The eventual resolution in the acute (suspiciously reproductive) leg pain did not mean, of
course, an end to my problems. My once-occasional intestinal urgency had progressed into what
at times was nearly daily diarrhea. Loose BMs multiple times a day. The altered bowel habits
during my periods had turned into altered bowel habits before/during/&-after my period, and the
symptomatic, "peri-menstrual" portion of my monthly cycle was expanding in both calendar
directions, seemingly taking over the entire month. It was getting bad enough, and a-cyclic
enough, that I started wondering if perhaps it didn't represent an independently occurring
problem on top of the menstrual issues. I had reasons to doubt the "IBS" explanation, but I did
feel it would be prudent to rule-out IBD, since my paternal aunt (dad's only sib.) is a lifelong
sufferer of UC. I thought it might be time to see a GI-doc, but at the time my GP seemed pretty
"meh" about my reported GI symptoms, so I resolved to try a gluten-free diet first before asking
for a referral.

   At some point in the last year, at one of our consults, I decided to go along with my GPs
recommendation to give HBC a 5th & final try before calling it quits. She wrote me a 3mo.
prescription for Ortho Tri-Cyclen (Norgestimate - .180mg [x7], .215mg [x7], .250mg [x7], .000mg [x7],
Ethinyl Estradiol - .035mg [x21], .000mg [x7]), which I took regularly but was forced to discontinue
after 10wks due to severe GI-related side-effects, severe worsening of acne (deep and painfully
cystic like never before), and a general lack of any benefit at all whatsoever. My periods stayed
painful. My periods kept worsening. I felt cramping, colicky nausea 24/7. My then-daily
diarrhea, believe it or not, managed to significantly worsen. I hadn't been on any form of HBC
for a number of years, but this experience differed from those of previous years only in the fact
that it was probably worse. So much for last-ditch efforts. I don't know why I expected anything
different.

   A few months later, I'd become symptomatic to the point that it forced me to leave my job .
 
   Eventually I went back in to the doctor; I'd been on the strict-gluten free (low-dairy) diet for
nearly 4 months and hadn't noticed any improvements. My menstrual & peri-menstrual pain was
still becoming an ever-increasingly heavy burden. The number of days before and after my
period on which I was having clearly menstrual pain was increasing at an alarming rate. I wanted
referrals to the relevant specialists, which I felt should include an OBGYN and a GI specialist.
She obliged me by giving me the card for her OBGYN colleague in an affiliated office down the
hall, and said she had no one in particular to recommend, GI-wise (I was uninsured at the time,
so a 'referral' was really little more than a professional recommendation, and apparently she knew
of no one to recommend.) I didn't bother regaling her with the details of all the other recent-orrecently-
worsening symptoms I was experiencing. I'd been seeing this doctor regularly for just
under a year and had already learned how largely pointless it was to bring stuff up to her.

   When I "injured" my leg, and was disabled by acute pain, she was unable to determine a
cause, reluctant to investigate, and unwilling to offer me anything whatsoever beyond "Wait and
See" (Read: "Tough It Out") to help me deal with the extremely severe and disabling pain. What
point would there be in now mentioning the fact that again, during my period, while sitting down,
I appeared to have somehow "injured" my lower-back? Or that the pain from this lower-back
"injury" which I apparently "sustained" while seated with a heating pad during the worst of my
monthly cramps, had improved slightly from its worst but still continued to bother me more than
a month later? To my ever-vigilant doctor, my severe and worsening bladder symptoms were,
"A little interstitial inflammation". My GI symptoms were, "...::crickets::...". My
"dysmenorrhea" was still an isolated problem that could be fixed with the right HBC, even
though I was now experiencing "dysmenorrhea" (despite normal bleeding) at least 3wks out of
each month.

   I didn't need to pay someone $140 (out of pocket) over and over just to shrug their shoulders
at me after 30-seconds no matter what I told them. To tell this woman I was experiencing
something as non-specific as "crushing fatigue" or "constant painful bloating" would have served
only to further solidify her impression of me as "that kind of (female) patient", and make her eyes
glaze over. I was also reluctant to mention that my pelvic pain had reached the point of being
chronic, because then I'd just be another female "chronic pelvic pain" patient, and from what I
could tell, from all that I'd read, these patients did not seem to be particularly well-treated. I
would just as soon have saved these observations for a specialist who might actually know what
the hell to do. When it came to my case, my GP was clearly not "on the caper" like I needed her
to be. I didn't hold it against her (not really), but instead took it as a sign to look elsewhere for
help.

   I decided to look for that help first in the form of an OBGYN that had come recommended to
me by my therapist (due to a conveniently located office down the hall in the same bldg.).
Dr. Cara Smith practiced at the Women Caring For Women clinic, (which might have more
accurately been called the Women Helping Other Women Be Pregnant & Have Babies clinic
because honestly that seemed to be it's whole focus; I was the only non-pregnant patient that I
saw the two times I was there). That was the clinic's focus, though as board-certified OBGYNs,
it's doctors were obviously willing and legally free to treat/manage the occasional endo. case that
might find its way through their doors. I met with Dr. Smith on Wed., 2/26/14. We went first to
her office for a lengthy and somewhat tense discussion of the problem (*this conversation is a
whole story unto itself but I'm already pages past reasonable for the length of this narrative), then
over to the exam room where she performed a rather painless internal exam. She didn't feel
anything 'weird'.

     Over the course of our first (and I think only) consult, on the basis of things she said (about
endometriosis, its diagnosis and its treatment) she managed to help me realize that I probably
really should be seeking advice and care from a serious, legit, sub-specializing expert. Even
though by the end of our first consult I had decided that I did not desire any of the medical or
surgical services offered by this doctor, I had no idea where to find a more confidence-inspiring
provider. Until I found somewhere better to transfer my treatment, she was the only provider I
had, and so I let her schedule me for a 2nd TVUS and and 2nd PAP (I'd had both in the last year).
I told her I was in a monogamous, hygienic, 8-year relationship, and the results of my last PAP
were clear for whatever was tested, but she seemed to want to re-test and I was like, "whatev".
The TVUS I wanted to repeat anyway, as I was unsure as to the quality of the last one. I
scheduled them for the same day the following week, and had the TVUS done in the AM, with
the PAP scheduled at their 2nd location 25min. away. The sonographer commented that my
uterus appeared "premenstrual" (as expected given the date of my last cycle), but mentioned not
seeing any "prominent follicle" on either ovary... Both scans (TV & abd.) were done with
bladder full. I headed out for the other location. ...Just before arriving for the debatably-needed-
PAP, I got a call that Dr. Smith had been called into delivery and was very sorry so when could
we reschedule?

   I never went back in to discuss the TVUS results. I figured, if my next (better) doctor is
interested in the results they can have them sent. If they just want to redo it with their own
sonographer and protocol, then so much the better. Within a week or two I had gotten myself an
appt. at the University of Michigan Endometriosis Center (in Ann Arbor, MI) with Dr. Lindsay
Brown.

   ...My therapist has a lot of respect for the University of Michigan & generally holds the institution
in great esteem. I, in turn, have a lot of respect for the knowledge and opinions of my therapist, so
upon her suggestion I started looking into the various services offered through the UofM Health
System. I was excited and relieved to find the web-page describing what UofM calls its
"Endometriosis Center". [http://www.uofmhealth.org / medical-services/obgyn-endometriosis ].

U of M Endo Center - 1st visit , w/ Dr. Lindsay Brown :
● I met with Dr. Brown on: 4/8/14

● Told her the recent history of the problem and what had been done to investigate and treat it
so far. I was fairly impressed by the way the conversation went, particularly because she
correctly read early on that I had a relatively sophisticated understanding of the topics under
discussion and seemed willing to have a substantive conversation with me on that level; Dr.
Smith had not.

● She was the first doctor to show any real concern regarding my urologic symptoms (a 'plus'),
and had treatment ideas to help control them ('plus'). She felt the symptoms warranted further
investigation and referral to a urologist for diagnostic work-up, but was willing to prescribe
Oxybutynin (5mg/bedtime) in the interim. Her index of suspicion seemed raised for co-morbid
IC (or possibly for IC as alt. dx) but wanted Urology to confirm this. I felt this was reasonable
and prudent and so the referral was also a 'plus' in my mind. However, she also made it sound
as though the outcome of these urologic investigations (for IC) were somehow a controlling
factor in how far she could proceed down the path of diagnosing and treating my suspected
endo.. Like, as if the suspicion of endo. might go up or down depending on the outcome of the
IC work-up. As though she was unwilling to surgically investigate(/treat) my fairly probable
endometriosis until the urologist finished looking into it and... ...and what? Told her I had IC?
Told her I didn't? Even with a dx of primary uropathology to explain 100% of my urinary
symptoms, would the remainder of my symptoms/history not still warrant timely gynecological
investigation? I didn't like this "wait 'till literally all the results are in" approach to dealing
with the endo. question.

She performed a pelvic exam. She said she was going to internally press on 3 dif. muscle
groups and to say each time when it hurt. The 3rd place she pressed caused a significant jolt of
pain in the right side of the front pelvis and right leg. The rest of the exam was physically
uncomfortable but only minorly painful. But I was impressed by the fact that she was able to
palpate purposefully and elicit pain. Previous exams had only been incidentally painful and
never sharply so. Another 'plus'.

● I told her that I'd been to a first consult with a GI (Dr. Bortman) and was waiting on results
of prelim. lab-work, but that he hadn't decided to do a colonoscopy yet. She thought it was
good I was getting evaluated and expressed interested in the results of a colonoscopy. She bid
me follow-up w/ Dr. Bortman to schedule the procedure.

● Because I was so symptomatic, she wanted to initiate medical therapy, ASAP. I told her I
was not willing to go on Lupron at that time, especially not without a reliable (surgical)
diagnosis. She responded to this with visible disappointment, accepting my position while
urging me to at least go home and "think about it" (I guess one last time, or, more than I already
had). With Lupron momentarily off the table, her proposed treatment was a 3-6mo. trial on the
Mirena Coil. I told her of my negative past experiences with the 5 other HBC formulas I'd tried
and expressed reticence at the fact that even under ideal circumstances, with perfect symptom
control and no side-effects, I would still be no closer to having my pathology diagnosed or it's
areas of involvement characterized. I didn't feel comfortable agreeing to a 3-6mo. diagnostic
delay just to see if a hormonal treatment might effect an unknown level of symptom relief
without any of the previously encountered side-effects. I understood that Mirena was a
progesterone-only implant, with local>systemic effect, but this did not to my mind add up to a
persuasive argument to spend another 6mo. ultimately undiagnosed, risking side-effects while
hoping for 'adequate'(?) palliation. I remained unconvinced, but since I felt like I'd used up my
veto-power on the Lupron issue (and since Mirena did present somewhat novel aspects distinct
from my 5 previous HBC treatments) I agreed to go home and deeply consider the IUD 'option'.

Before the 2nd consult:
● A few weeks later, I had the colonoscopy. My bowel-prep. was "excellent" and my colon
was pristine. The lab-work was also back and unremarkable except for mild anemia.

● After my best effort at thoughtful reconsideration of hormonal Rx (Mirena), I decided that it
was more likely to delay, rather than prevent, the ultimately needed surgery. I felt my need for
answers should not have to be subordinated to my need for treatment, when the two could be
provided at the same time at surgery (at least to a greater degree). Mirena was an inferior
alternative, as far as I was concerned, at least at this juncture. In the meantime, the variablebut-
chronic lower back pain was insidiously worsening, with several alarmingly acute
exacerbations. I could no longer fit into or comfortably wear 98% of my clothes. The backpain
was becoming disabling, especially in conjunction with the incessant abdomino-pelvic pain
I was getting for at least a week before and after my periods, which themselves had taken on an
"out of this world" quality in terms of how intense the pain was. Even mid-cycle, I could no
longer find any comfortable positions in which to sit for any length of time without feeling
painful pulling/pressing throbbing aches that would grow into sharper twinging stabbing throbs
if I didn't shift my body almost constantly. Laying in bed I could still not escape it, though
laying in bed (with the heating pad) was sometimes the least aggravating. I developed a
nagging bi-lateral ache in the groin/inner-leg area that was worse on the right during my period.
My periods were again setting new all-time records for worst-pain-ever, and the pain brought
on with each period was continuing significantly beyond the end of my bleeding, sometimes
continuing into and beyond the following cycle. I was taking so much Tylenol (on a daily basis,
for months) it was seriously starting to mess with my stomach. I needed them to do better than
"Mirena".

● ...I'd made my decision, and called for a follow-up with Dr. Brown. Dr. Brown had nothing
available for well over a month, but "another doctor in the center" was available much sooner
and so I arranged to be seen by that doctor.

U of M Endo Center - 2nd visit , (w/ Heather Wahl, MD) :
● I saw Dr. Wahl on [5/6/14].

● Dr. Wahl was a doctor in the sense that she was a (presumably well-trained) resident with
absolutely no ability to independently make important treatment decisions. Nevertheless, I
explained my situation, filling her in on my symptoms. I informed her of my decision to
decline the IUD for the time-being and, when I attempted to explain my reasons, it led to a nice
little back & forth (between her, myself, & my fiance). After re-stating my position more
forcefully, she eventually interjected with, "So, to cut right to the chase, what you're saying is
you want to talk about surgery; you feel it's time, and you want it done. Right?" and I was like,
"Well, yeah." At that point she started talking about what I could expect in terms of next steps,
if we were to in fact go forward with surgery. She explained that I'd still need to come in for
another TVUS, but that pending that, so long as Dr. Brown (who would perform the surgery)
was willing, I'd be put on her surgery schedule (with a pre-surgical consult prior to that). Of
course, Dr. Wahl had to leave and go run all this by whomever it was in whose hands the
decision actually lay (her attending? Dr. Brown?). She excused herself and left.

● When she returned, I could see on her face that she knew I wasn't going to like what she had
to tell me. She had spoken with whomever (I think it must have been Dr. Brown), discussed it
with them, and had the following to report: On my prior visit with Dr. Brown, I had said I was
unwilling to agree to a 3-month shot of DepoLupron, and she'd then offered the Mirena Coil as
an alternative. I was now also declining the coil, and this decision apparently forced them to
put Lupron "back on the table". They were benevolently willing, though, to let me "opt" for the
1-month only injection, since I was "so concerned" about side-effects with the 3-mo. shot.

● Wow, what a pointless and stupid proposal! Give me something that could give me at least a
month of side effects, any one of which would be unacceptable, to give me equally temporary
pain-relief from my cycles but... they were only proposing to give it for a single month, and
specifically the month before they might potentially operate? Ummmmmm.... No. I didn't think
so; they were clearly either hoping to minimize/de-emphasize whatever side-effects I might
report while planning to try aggressively, after a month, to get me to submit to another-month-of-
Lupron-instead-of-surgery... That, or they wanted to use it "empirically" (which I would
never consider a valid or adequate reason to take a 1-3mo. shot of Lupron, for so many
reasons). I asked point blank if the 1-mo. Lupron shot being proposed was for
empiric/diagnostic purposes, and that's exactly what the intention was. I was like, "Uhhh, I'll
need to think about it, again.", and Dr. Wahl encouraged me to just go ahead and schedule it
when I schedule the TVUS, since I could always cancel the shot-appt. if I changed my mind.

● That was exactly what I did; I scheduled them both on the same day, canceled the Lupron
shot pretty soon after, and showed up for the TVUS on 5/16/14.

● The results of this ultrasound are included in my records. The results were more or less
normal (sm. amt. free fluid, "probably physiologic").

● Early in the a.m. on the 17th, about 9hrs. after doing the scan, I began my period with the
sudden onset of what I consider to be the absolute worst, truly most intense pain I have ever
experienced, by far, in my entire life... for sure. I have never been affected by pain in the way
this pain affected me. More than any other event in this narrative, my experience on that night
deserves its own re-telling. It was an experience like no other, involving pain like truly no other
I've ever endured. But at 16pgs. already, I'll leave the description at that, because what I've
been experiencing in the 2wks. since that night is equally significant...

● ...In the past 2wks., since the onset and conclusion of my #1 most-painful period ever, I have
been dealing with near-continuous pain that has been just totally debilitating, taking from me
what little strength I still had left to keep functioning even at the already low-level of recent
months. A few months ago, I was a part-time student (returning for the first time in 5 years!)
managing to still achieve A's in my relatively few courses. Sure, it seemed like it nearly killed
me trying to stay academically afloat despite my health problems, especially toward the end of
the term, when my menstrual symptoms conspired to occur/worsen during the most challenging
part of the semester. But even then, less than 2mo. ago, I was still able to push through finals
and finish with the 2 A's I deserved... whereas now I've reached a point where I'm barely able to
hobble around my own apartment, have nearly constant abdomino-pelvic pain with chronically intermittent leg/pubic/lower-back pain. I hardly have enough energy to do basic things for
myself. The pain wakes me up from sleep. It keeps me up at night. It even keeps my spouseto-
be awake at night (which to me is a *major* issue because he's already the only one able to
work at the moment). It shoots up to a 7-9/10 for extended periods on a daily/nightly basis. It
is more bi-lateral lower down in the pelvic region, but occurs intermittently higher up
abdominally and when it does it is worse (sharper, more frequent) on the left side.

● Hopefully when we meet I can better describe the relevant features of the pain as I currently
experience it. But there's a lot to it, it's actually quite complex in presentation, so I'm going to
stop the narrative here.
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