Emily (paintedglass) wrote,
Emily
paintedglass

UofM Endo Consult Transcript

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[Both]: Hi.
[Dr.]: We met two times ago, when you were here.
[Me]: Yeah.
[Dr.]: I'm Dr. Brown. It's nice to meet you. . .
[Me]: Hi.
[Dr.]: . . . and then you saw Dr. Wahl, and she gave you Lupron-
[Me]: No. She didn't, she . . .
[Dr.]: Oh. I thought you'd . . . [SS] . . .
[Me]: . . . suggested for the second time that I take it and I refused it for the second time.
[Dr.]: OK. How are things going?
[Me]: Really bad. Worst ever. Um . . . nine hours after my ultrasound that had normal results, I had
the worst pain of my entire life . . . I would've probably gone to the E.R., if I hadn't already had a
traumatic experience going to the E.R. . . .
[Dr.]: Yeah.
[Me]: . . . with that kinda pain . . .
[Dr.]: Yeah.
[Me]: . . . and every single day since then, including today, I have had pain that shoots up to what
used to be a 10, and, only because of . . . the night of the 17th, the pain I've been in now probably
only rates . . .
[Dr.]: . . . [SS] . . . (*sounds like, "...so more normal...")
[Me]: . . . at like an 8 or a 9.
[Dr.]: Are you still having urination problems?
[Me]: I . . . am not sure, I think maybe the oxybutynin has . . . maybe made, slightly a difference?
[Dr.]: Ok.
[Me]: Like . . .
[Dr.]: How much, and how often do you take it?
[Me]: I take it every night at bedtime, one 5mg tablet.
[Dr.]: Mm-hmm . . .
[Me]: Um . . .
[Dr.]: . . . 'cause after you've been taking it for a while, you can go up on that too.
[Me]: . . . one thing I've noticed, it seems to have maybe possibly made- I mean I still have great
frequency, it's . . . still abnormal. Um, and bothersome. But, um, I have been making it through more
nights without having to use the little, thing under my bed . . .
[Dr.]: Yeah. OK.
[Me]: . . . but I've noticed that I've had like, just, re- in recent weeks I've had like, hesitency, where I
have the sensation of needing to go, and the discomfort of needing to go, and then when I start to go
it's like . . . [pauses] . . . and I have to like, focus my mind on letting everything relax . . .
[Dr.]: Is that usually in the morning? 'Cause that can happen sometimes with the oxybutynin too, do
you feel like you're emptying your bladder though, once it does get started?
[Me]: Once it gets started, most of the time I feel like I'm emptying it, but I do notice . . . that.
[Dr.]: OK, and um, how often are you going during the day?
[Me]: I mean, I wo- only actually counted, once, when I did a Pee-Log and it was like, 14-20 times . . .
[Dr.]: OK. That's . . .
[Me]: . . . but, um, I would . . .
[Dr.]: . . . still quite a lot.
[Me]: . . . I would say now I'm probably going about . . . 10-14, 15 times.
[Dr.]: OK. Um, and have you been able to make an appointment to see Urology? They're hard to get
into I know sometimes . . .
[Me]: Yeah, it was like really far off, and, I just, I didn't- I didn't make an appointment yet. I can, I can
make that appointment . . .
[Dr.]: OK.
[Me]: . . . but, I mean, I'm not even that concerned about my urination at this- right now. I mean . . .
[Dr.]: Right. A lot of pelvic pain . . .
[Me]: . . . I'm not . . . [SS] . . .
[Dr.]: . . . so, what do you want to do? I know you were here last time when we talked a lot about
different treatment options, um, two of the things we talked about trying are the Mirena or the
Lupron, have you thought more about those two options at all?
[Me]: Yeah, I've thought them both, to death, and I'm not doing either one, at this juncture, that's my
decision, I'm not doing it, I'm n- Mirena is . . . [SS] . . .
[Dr.]: No! Of course- I- no, that's, totally fine. I just, was curious if you'd thought more about themand
we haven't talked . . . [SS] . . .
[Me]: I have. I hav- It's, it's all I've, thought about is, is, what am I gonna do about this problem, and
that's obviously in the- among the things I've thought about, and I'm . . .
[Dr.]: Mm-hmm.
[Me]: . . . not doing either one right now, and I'm not, opposed, to doing either one in the future
but . . . I'm not taking Lupron, empirically. I'm not . . .
[Dr.]: OK.
[Me]: . . . and I'm not op- posed t- I'm opposed to taking it until I have a diagnosis, unless I'm- I have a
surgical diagnosis I'm, I'm opposed to taking it- Mirena I'm not opposed to, except for the fact that it
would delay, three-to-(preferrably)-six-months, at least, any further action, while we see if it's doing
anything, and if it's having, 1/7th the side-effects? A hu- the same amount of side-effects? Magically
no side-effects? You know, it'll be a while before we even know, so, I'm opposed to the delay
associated with the Mirena.
[Dr.]: Yeah.
[Me]: My life- I'm, tryin' to get married. I, I'm plan- I'm, I'm, telling people that I'm, 'planning a
wedding' . . .
[Dr.]: Mm-hmm.
[Me]: . . . I took classes, for the first time in five years, over the winter . . .
[Dr.]: Mm-hmm.
[Me]: . . . I only took two, and a lab . . .
[Dr]: Mm-hmm.
[Me]: . . . I got A's in them but it just about killed me.
[Dr]: Mm-hmm. [more of a protracted sympathetic vocalisation, N.O.S.]
[Me]: [pause] . . . I, I lost my job more than a year ago. [verge of tears]
[Dr]: Yeah.
[Me]: I'm not trying Mirena and hoping for the best, at this point.
[Dr]: Yeah.
[Me]: Once I know, for, actual real, what's going on with my body, then I'll consider, whatever can, you
know, Mirena might be able to offer, but . . .
[Dr.]: Well, as a standard of care . . .
[Me]: . . . there are things about it that I like.
[Dr.]: . . . as a standard of care at our institution we, try one of these treatments to make a diagnosis,
before we do surgery . . . and the reason is because, um, there's, more risk to you with the surgery,
than doing either of those two things.
[Me]: [nearly inaudible] Yeah.
[Dr.]: Um, if you really strongly feel like you want a surgury for a diagnosis, there are, other places that
do that, but we don't do that here.
[Me]: Yeah . . . that's what I figured . . . I have, an appointment in Atlanta, next Thursday.
[Dr.]: Georgia?
[Me]: Atlanta, Georgia.
[Dr.]: Are you moving there?
[Me]: No, I'm seeking care for my d- disease, down there.
[Dr.]: OK. Well, when you, see someone down there you know you're more than welcome to kinda
send us their records, and y'know you don't always have to go down there, you can come back here,
um, we- we can . . . [SS] . . .
[Me]: I mean, I, I am gonna probably- I mean, I'm gonna get their opinion, send my records to them . .
.
[Dr.]: Mm-hmm.
[Me]: . . . I wrote a 16-pg. narrative of my . . . menstrual life and history . . .
[Dr.]: Mm-hmm.
[Me]: . . . and they're gonna read it, and . . .
[Dr.]: . . . and your welcome to a- to have us send our records to them too, about the things that
we've talked about.
[Me]: I've, I've- I'm probably going to need- I mean, I'm not leaving Michigan any time soon, I'm
gonna need follow-up care.
[Dr.]: Mm-hmm. And you're totally welcome to come back here, people get second opinions all the
time.
[Me]: OK.
[Dr.]: Um, who were you gonna see down there?
[Me]: Um, it's c- it's a- called the Center for Endometriosis Care, Dr. Ken Sinervo, and Dr. . . .
something Albee. Um, they've been . . .
[Dr.]: Have you tried to get in with our endometriosis-people here? Dr. Skinner, and her group?
[Me]: . . . I . . . thought that's what I was, he- here . . . through- I called the number on the
'Endometriosis Center' webpage of the U of M Health System.
[Dr.]: Um, this's just the general like, resident clinic.
[Me]: . . . [lengthy pause] . . . Oh. Really?
[Dr.]: Mm-hmm.
[Me]: I thought I was, here . . . at the . . . [SS] . . .
[Dr.]: But the pelvic pain specialists, have another clinic in this building. That's not this clinic . . . but,
generally they have us try a couple of treatments before they'll see patients . . .
[Me]: Yeah, I . . .
[Dr.]: . . . but we have some specialists here, Dr. Skinner and Dr. Asani [SP] . . .
[Me]: . . . I wo- I would love to see Dr. S- Dr. Super-Specialist if, if, if they would see me but, I'm- I
mean I'm not gonna, do, a Lupron-shot just to get in the door.
[Dr.]: OK. Well I'm- I know Dr. Skinner really well, and she's, one of the the two doctors who leads
that clinic, and I can kinda let her know about you- your case , but, usually what they'll do is they'll
review people's records, before they can get into the clinic because so many people want to get into
that clinic . . .
[Me]: OK. [or possibly, ". . . great . . ."]
[Dr.]: . . . and if you haven't tried either of those treatments before, they probably won't see you.
[Me]: Yeah.
[Dr.]: Um, but, um, I . . . [SS] . . .
[Me]: Will they see me if I've had a . . . surgery . . . [laughs] . . . that shows in like, pictures and video,
what's goin' on?
[Dr.]: It's possible. I can talk to Dr. Skinner about it, and see what she thinks.
[Me]: 'Cause I mean, I do- I d- I mean I don't know what kinda follow-up care I'll need. It . . .
[Dr.]: Yeah.
[Me]: . . . I assume I probably will. I- in fact I assume I'll probably wanna go on Mirena as soon as I'm .
. .
[Dr.]: Done.
[Me]: . . . done.
[Dr.]: Yeah, and you're welcome to get that here, um, but, why don't you just follow-up, after you
come back, or, you know, when we can kinda touch base, y'know . . .
[Me]: OK . . .
[Dr.]: . . . and go from there.
[Me]: . . . [becoming tearful] . . . It's just that it's really . . . bad . . . [crying] . . . It's like . . . [pause] . . . I
can't ev- I'm, bed-ridden, for the last, since the 17th, this is like the farthest I've traveled outside my
house . . .
[Dr.]: Mm-hmm. Oh, I know . . .
[Me]: . . . [sobbing] . . .
[Dr.]: . . . but the reason . . .
[Me]: . . . I can barely get up- I'm, keeping my husband up, in the middle of the night, and he's the
only one able to work. I can't . . .
[Dr.]: . . . but the reason we recommend trying those treatments is because more people benefit from
them than benefit from surgery, and there's a lotta side-effects from having a, a surgery.
[Me]: I know.
[Dr.]: And surgery is riskier, people die having surgery . . .
[Me]: I know.
[Dr.]: . . . from unexpected complications . . .
[Me]: I know.
[Dr.]: . . . and more people get benefit- what is it about the Lupron and the Mirena that worries you?
[Me]: Well, I'm a severe migraine sufferer . . .
[Dr.]: Mm-hmm.
[Me]: . . . I can't have a shot that, could, potentially set off, a multi-week long migraine.
[Dr.]: Being under general anesthesia could do that too.
[Me]: . . . [lengthy pause] . . . They're- they- . . . [laughs] . . . there would be more- I think there would
be more benefit though, for that kind of a complication, the- the, trade-off would be different. I
mean, I don't- I'm at my highest weight ever, I don't . . . I don't wanna put on, 20 pounds, I don't want,
to get migraines . . . I, am already experiencing bizarre hot-flashes, I already have severe insomniasevere,
I've already sought treatment at the U of M sleep disorders clinic because of how life-long and
severe my insomnia is and that's a major Lupron side-effect. I already- it's all I can do to sleep at
night . . . [pause] . . . I'm, not, gonna put 20 pounds on, before m- I get married, and, and, have my,
already profoundly disrupted sleep disrupted, potentially further . . .
[Dr.]: Mm-hmm.
[Me]: . . . and, and risk, triggering migraines, that, already disrupt my life, as it is- I'm already
extremely migrainous lately, and, I can't handle going through life, with a continual pain in my
head . . .
[Dr.]: Yeah, have you seen a doct- . . . [SS] . . .
[Me]: . . . on the hope that it'll relieve the continual pain in my . . .
[Dr.]: Yeah, do you see a doctor for your migraines?
[Me]: . . . When I was a teenager, and young adolescent I took Midrin but it's off the market now. I . . .
[Dr.]: Mm-hmm.
[Me]: . . . [thinking of name] . . . Imitrex helps. My mother-in-law-to-be takes, Imitrex and she . . .
[Dr.]: Mm-hmm.
[Me]: . . . sometimes if I have a bad headache, so far, has just- I've . . . [SS] . . .
[Dr.]: Do you have a regular, like, primary care doctor that you see?
[Me]: Yeah, I have to- I have actually not, been back in to see her since I got insured. The reason I
haven't done anything is becuase migraine medicine's extremely expensive . . .
[Dr.]: Yeah.
[Me]: . . . so, I've . . . now I could probably . . .
[Dr.]: Yeah, why don't you go back in . . .
[Me]: . . . mention it . . .
[Dr.]: . . . to see her. And then please do send us the records from, the discussion you have in Atlanta,
or, we- you know, whatever happens there we're happy to provide your follow-up care, and then, I
think you should try to get in, to, the chronic pelvic pain clinic here, 'cause that's not what this clinic is,
this is a general, clinic.
[Me]: OK . . .
[Dr.]: So I think that that would be, good too.
[Me]: . . . OK. Ehh-
[Dr.]: OK?
[Me]: Can the webmaster . . . I'm serious, can the webmaster make sure the phone numbers on the
webpage for U of M's pelvic pain clinic . . .
[Dr.]: Yeah, but if you haven't . . .
[Me]: . . . are correct?
[Dr.]: . . . but if you haven't seen anybody in our system, they'd put you in a general clinic first . . .
[Me]: Oh, OK.
[Dr.]: . . . you know, to, kinda get evaluated, but, I can talk to Dr. Skinner and see if she'd see you, or if
she'd want more, information, or . . .
[Me]: OK.
[Dr.]: . . . or one more treatment trials [sic] first, OK?
[Me]: OK. . . . [sniffs, tearfully] . . . Alright. Um . . . [pause] . . . and then I was just kinda curious as far
as the ultrasound went, it seemed like it was a very basic ultrasound. It looked, I- I mean, they, they,
looked at what, my 'adnexa'?
[Dr.]: Mm-hmm.
[Me]: And, and, determined that, it was present, and, more or less normal appearing, but I don't
know what, 'softer signs' they . . . might've looked for, with the protocol the sonographer used. I don't
know . . .
[Dr.]: In general they just look at your uterus, and you ovaries . . .
[Me]: So they don't, check, for 'soft-', 'soft signs' like, mobility of the, organs, or any of the
gastrointestinal tract, or . . .
[Dr.]: No.
[Me]: . . . the urinary bladder.
[Dr.]: No.
[Me]: So, OK. So, that wasn't the kind of ultrasound I was getting when I . . .
[Dr.]: That's actually not something we offer here . . .
[Me]: OK.
[Dr.]: Um, 'cause there's not a lotta evidence behind that, but . . .
[Me]: OK.
[Dr.]: . . . we can tell the mobility of those organs with your pelvic exam.
[Me]: Oh, you can, OK.
[Dr.]: Yeah. And everything felt pretty freely movable . . .
[Me]: Pretty freely movable.
[Dr.]: . . . on your exam.
[Me]: OK. . . . [long pause] . . . OK. . . . [pause] . . . I mean, I'm not get- . . . when it was just, really bad
dysmenorrhea, I was like, 'Well, if it's adenomyosis, I'm not, getting it taken out-' . . . [laughs] . . . '-until
I've had kids.'
[Dr.]: Mm-hmm.
[Me]: 'So, I'll suck it up, and, see what I can work out.' But, then, in the last, year and a half it's been,
insideously and then, rapidly, worsening to like, you know, constant, constant- My life, I'm . . .
[becoming tearful] . . . I can't even move around my own apartment, like, walk around . . . [begins to
cry] . . . so now, I guess I'll go, see what they say, and I'll probably definately be back to, follow-up . . . If
you could, m-m- mention me, to Dr. Skinner . . .
[Dr.]: I will, I will. But, I want you to know that we're not like, closing the door on you, it's just that as
our standard of care . . .
[Me]: . . . [sniffs] . . . I understand.
[Dr.]: . . . we offer treatment before we offer, doing a surgery. And, the treatment, especially the
Lupron . . .
[Me]: . . . medical treatment . . .
[Dr.]: Right.
[Me]: . . . versus, surgical . . . treatment.
[Dr.]: Right.
[Me]: OK.
[Dr.]: Because the medical treatment can give us a diagnosis, especially the Lupron, because, if your
symptoms are fixed then we know it's endometriosis that you have.
[Me]: I wanted to actually- on that point particularly, and I know this seems- this is about- this
conversation should probably be wrapping up, but, I wanted on that particular point . . .
[Dr.]: Mm-hmm.
[Me]: . . . about the Lupron . . . empiric Lupron . . . [pauses while pulling up document on ipad] . . .
This is from, the, Practice Commitee, of the American S- Society for Reproductive Medicine, and under
'Diagnosis' . . . [sniffs] . . . it says . . . [pauses] . . . 'Once endometriosis has been diagnosed, progression
of the disease is not reliably assessed by pain symptoms or radiologic tests. Gonadotropin-releasing
agonists (GnRH-a) have been advocated, to diagnose and treat endometriosis without performing
laparoscopy, based primarily on the results of one study involving 95 women with moderate-to-severe
chronic pelvic pain unrelated to menstruation who were randomized, to either receive. . . Lupron, or a
placebo . . . The underlying premise was that improved pain symptoms during the hypoestrogenic
state induced by, the Lupron treatment, might reliably indicate that endometriosis was the cause.
Citation, citation.' . . . [sniffs] . . . 'However, pain relief in response to LA for depot suspension was not
significantly different for those who did, or did not, have detectable endometriosis at laproscopy;
81.8% versus 72.7%, respectively. Therefore the resonse of LA, for de- depot suspension did not
acurately diagnosis endometriosis.' . . . [sniffs] . . .
[Dr.]: Yeah, I don't know the details of the studies, for which we, we set our guidelines . . .
[Me]: . . . [sighs] . . . I actually know, quite a lot about the details, for a lot of the studies, that a lot of
the guidelines get written on, and, I . . . that's why I'm goin' to Atlanta.
[Dr.]: Yeah, and I think you should have a conversation with our specialists here, and I'll get in-touch
with them and see if they can see you- did we get a referral in at your last visit? Have you gotten any
information about filling out information for their clinic?
[Me]: I've gotten the, the, two questionaires, and I've got them filled out, I just haven't- I mean I
didn't make the appointment so I didn't bring 'em back.
[Dr.]: OK . . . OK.
[Me]: . . . [sniffs] . . .
[Dr.]: Well I'm glad you have that stuff though and I'll let Dr. Skinner know about your case too, OK?
[Me]: OK. That'd be great.
[Dr.]: And good luck OK?
[Me]: Thanks.
[Dr.]: Yeah, you're welcome, I'll give you this 'cause they like to get that with the check-out, OK?
[Me]: OK. . . . [sniffs, clears throat].
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...So yeah, she was a dumb bitch.
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