My doctor is a search engine

[cjsmith]

The web is a wonderful thing. I've learned a few basic things in the last half hour or so:

1) Endometrial ablation, the removal of the uterine lining to reduce or eliminate menstrual bleeding, sounded great at first but is not what I need. It has no effect on menstrual pain. (It also isn't a surefire contraceptive, which is a scary thought. Conception with little or no uterine lining to nourish the embryo? Lovely. But not my problem, so I didn't follow that trail.)

2) Hysterectomy is a Big Fat Hairy Deal. We're talking a hospital stay here, even (if I understand correctly) if the whole thing's pulled out through the vaginal canal. We're talking probable early menopause (hot flashes, insomnia, bone brittleness, sexual unpleasantness, etc etc and hormone replacement therapy), even if the ovaries remain. We're talking increased (some studies say up to 4x) risk of heart attacks for the rest of my life, even if the ovaries remain.

There is no justice. Why couldn't I have been human? Why? Why?

3) There's a thing called a "myomectomy" which was obviously less drastic than hysterectomy. Looked into it. No dice: this is the removal of fibroid tumors. Unless I have a fibroid tumor this procedure will not help much. ;-) Got to see some really impressive pictures though.

4) I think I'd hope to qualify for a type called "subtotal hysterectomy" where the cervix is left behind. Apparently, this "may help with later sexual enjoyment" (NY State Dept of Health). However, I'd still need regular Pap smears and would thus remain a slave to some @#$! doctor. This surgery must be done through an abdominal incision (duh). Most patients are "up and walking" by "the second or third day".

5) Hysterectomy is way popular. According to the CDC, one in four women will have one. Given my experience of having a uterus, I'm only surprised the number isn't higher.

6) I like the name HysterSisters. (Dave Barry Voice: HysterSister and the Fallopian Tubes would be a great name for a rock band.)

Comments

[lkeele.livejournal.com]

Hey, I wonder if your doc knows my doc, google.com? ;)

Seriously, girlfriend, big hugs, and WHY THE HELL HAVEN'T THEY LEARNED HOW TO FIX THIS??? I know just what you mean, in other words.

Sending healing thoughts your way (and a heating pad and a back massage and a cuppa tea).

[cjsmith.livejournal.com]

WHY THE HELL HAVEN'T THEY LEARNED HOW TO FIX THIS???

I live for the day when one of those daily-more-numerous female doctors is a woman with unexplainable pelvic pain, and she gets PISSED OFF. :-) (If I remember right, the story of the first discovery of endometriosis went almost like that. The patient wasn't a doctor, but she went to a (then-rare) female doctor because no one else would take her seriously, and this doc initially didn't either -- she'd never had cramps, therefore no one else did, or some such -- but the doctor eventually believed in the patient's pain, and she kept at the problem, and voila.)

Sending healing thoughts your way (and a heating pad and a back massage and a cuppa tea).

(purrrrrrrrrrrrrrrrrr!) thanks! :-)

And to change the subject completely, how are you coping over there, sister-in-spirit? Are you and your family sleeping well? Any other effects reaching you?

[lkeele.livejournal.com]

no one else would take her seriously, and this doc initially didn't either

Sounds like my difficulties getting my own endometriosis diagnosed. I had pain so bad I couldn't *walk*, and went to several different doctors. The first was a generalist (of course, I mean why did *I* know it was menstrual-oriented?? I hadn't started my period at the time) who sent me to the ob/gyns. And the ob/gyn thought I just had bad cramps and couldn't cope -- after all, SHE had cramps every month, and she didn't go running to the doctor about it ....

Guess how my endo was diagnosed? I called my mother. She's a nurse, so I often went to her with medical questions. Turns out endo is why she had her hystorectomy at age 28. When I went to the doctors and said "I have probable endometriosis, though I know diagnosis isn't verified until I have a laproscopy" (thanks, Dr. Google!), they sat up and listened. Sure enough, once the lapro was done, I had one of the worst endo cases that doctor had seen.

So, given my difficulties getting a *known disease* diagnosed, I can imagine the difficulty getting someone to take you seriously enough to discover it.

[cjsmith.livejournal.com]

I think it's amazing that a patient would have to basically make her own diagnosis in order to get any treatment. WTF?? But I've also heard stories of doctors who were persistent and not at all dismissive, doctors who've gotten to the root of a really weird problem and saved the day. Too bad I hear more of the former than the latter!

That's cool that your mom believed you. Mine never did, so in some sense, I was perfectly prepared for doctors to dismiss my pain -- my own mother just kept telling me to shut up or she'd give me something to whine about. Well, at least I'm pursuing the question now.

During that laparoscopy, did you get the endo cleaned up (as much as they could) right then, during the same procedure? How long was it before your symptoms were bad enough again that you had to go back?

[lkeele.livejournal.com]

I'm pretty sure my mother only took me seriously because SHE had endometriosis herself -- and it was diagnosed, etc. My mother did *not* take me seriously about the migraines, which took me until age 26 to actually have diagnosed, even though I started getting them when I was 6. And this was because my mother had migraines herself, but refused to admit it. I mean REFUSED. Though it was a moral failure or something.

Yeah, during the lapro they also cleaned up the endo the best they could. It lasted about a year before the pain levels were pretty damned bad again. But that's in large part due to the fact that I refused to take the hormone pills I was supposed to to supress their growth -- the hormones just did NOT agree with me. I took them for a month and then just stopped. In retrospect, I might have tried asking my doc to try something different, but actually, the depression, etc. I experienced on these pills was similar to the reaction I'd had on other types of birth control pills, so I wasn't very hopefull -- and my doctor wasn't very willing to consider alternatives anyway.

Do you think your pains might be endo-related?

[cjsmith.livejournal.com]

Yikes. It's one thing to let a twisted sense of worthiness overrule practical sense in diagnosing oneself, but quite another to do that to a child! Have you managed to get good treatment for your migraines? I don't know to what extent those are controllable.

Hrm, a year... hrm... What hormone pills did your doc give you? Something like bc pills, or something weirder, like Lupron? My doc has mentioned Lupron and I'm not too keen on the idea. After that year, was that when you went in for your hysterectomy?

Yeah, my pains might be endo. Manual exam gives no evidence of scarring or adhesions, usually associated with endo pain this bad, but really we won't know until he goes in and looks. I had thought my doc had ruled out endo on the basis of my regular exams, but apparently not. Fair enough. Of course, one thing I'm secretly in-the-back-of-my-head worried about is what if it's NOT endo? But I'm trying to push that worry away. I am allowed to worry about that next Friday. :-)

[lkeele.livejournal.com]

Actually, I didn't have the hysterectomy for a few years after my lapro. I just suffered. Duh. I'm such a bone-head that way.

My endo didn't show any external signs at all (which is why I kept getting dismissed as just being a wimp about cramps); the manual exams turned up nothing.

What DID I take? No, I don't think I did the Lupron, that scared me. I think I took a strange form of birth-control pills. One of these new ones where you don't take sugar pills once a month, you just keep on with the same medicine -- it was at such a low level that I would bleed anyway. And they still messed me up. What can I say, I'm just super-sensitive to hormones. If you have endo, and can take birth-control pills, the laser treatment and then BC pills afterwards should ward off the problem for years. I mean, you'll still HAVE endo, but hell, *I* still have endo and I don't have a uterus! But it won't hurt anymore. The goal is to get rid of the pain *totally* -- and yes, it IS possible.

Good luck to you, I'm thinking about you and that up-coming lapro!