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

[dawnd.livejournal.com]

None of that sounds attractive, no. Please call Helena Women's Health before taking any of these radical steps. Just TALK to them. They might have something better to offer.

And yes, HysterSister and the Fallopian Tubes would be a great name for a band! When in Oregon some years back, I kept seeing a road sign I thought would be a good name for a band: Abrupt Edge. But I like HysterSisters better!

[cjsmith.livejournal.com]

Well, of course I'll call those folks before getting parts removed. I was doing the web search so that I could be a bit more educated, for a first meeting with anybody about anything, knowing what the ultimate steps might be. If anything, it's made me a little more cautious. This morning I wanted nothing more than a total hysterectomy. Now I'm wishing for alternatives.

I keep thinking "Fallopian Tubas". If I played tuba, I could be a Fallopian Tuba. I'm trying to imagine what the T-shirt design for that would look like. My mind gibbers.

[dawnd.livejournal.com]

Yeah, hysterectomies are pretty radical. I have another friend who had one in her very early 40's. She's OK, but it did take quite a while for her to recover. She had to schedule it very carefully, because we had concerts to do, and she needed to be able to stand! Glad to hear the research has made you more cautious, not less.

Fallopian Tubas! *lol* The scary thing is, I can imagine someone designing a tuba that looks like that. They're not that different.

You have a very twisted mind, CJ. I like that in a woman! ;^)

[cjsmith.livejournal.com]

I tend to be spoiled when thinking about surgical type stuff. What little surgery I've had leads me to believe I tend to recover very quickly and cleanly with vanishingly small amounts of pain. So things like researching long-term effects help make me a little less impulsive.

*grin* Glad to be of service by planting a twisted image. I'm sure you'll return the favor some day! :-)

[elflet.livejournal.com]

I keep thinking "Fallopian Tubas

Don't forget their groupies, the "French Hornies". Mais oui!

[cjsmith.livejournal.com]

Or is that the Freedom Hornies? (snicker)

Alternatives

[vellan.livejournal.com]

I am a nurse and am familiar with the procedures you've been researching and have helped patients recover from same. I'm not quite sure what's going on for you, but have you considered accupuncture? I used to have excruciating periods and after working with my accupuncturist no longer require the services of so much as an Advil.

Also, there is a procedure called a hysteroscopy which is like a D&C with an actual fiberoptic scope (as opposed to a blind sweep). This is a great diagnostic tool and can help you make a more informed decision with minimal discomfort. Good luck!

Re: Alternatives

[cjsmith.livejournal.com]

Thanks for mentioning acupuncture! Maybe I'm not insane to think about that. Yes, I have a lead on an acupuncturist who's heard about my case and said he'd do an initial consultation for free. He's an expensive guy to hire regularly -- from a purely financial viewpoint, hysterectomy would win (!!) -- but I'd sure like to know ALL the options. How often do you see your acupuncturist now? I'm impressed by the change you've seen!

I don't know what's going on either, as my gynecologists throughout the years have never found anything wrong with me besides pain. However, they haven't exactly looked very hard yet. After all, it's my pain, not theirs, and I haven't griped loudly enough. I believe endometriosis COULD still be in the running, but just barely, as there's nothing feeling like scarring or adhesion when the doc does a manual exam. (I got the impression that with 23 years of menstrual pain in my past, if it were endo I should be all crunchy inside.) So in my ignorance, I keep worrying that the only way to end the pain is to end the periods altogether.

Thanks for commenting! The more I educate myself, the better off I'll surely be...

Re: Alternatives

[vellan.livejournal.com]

I have been seeing my acupuncturist, John Nieters, for about 6 years now. I have some chronic health problems which would probably have rendered me disabled by now if it were not for him. At the time he began working with me, one of my problems was multiple PMS stuff and very painful periods. After the first treatment, I noticed a significant shift in the menstrual pain, nausea, breast and leg pain and now it is rare for me to have any pain with my periods at all. I was pretty skeptical about alternative medicine, at the time, but after multiple consultations with a wide variety of specialists for a whole host of problems and an unnecessary surgery, I defaulted to John, and I honestly believe the combination of herbs, acupuncture and a knowledgeable and caring practitioner saved my life.

Based on what you have described, endometriosis is a possibility, and that can be easily diagnosed with a laparoscopy which would probably not involve even an overnight stay unless they had to do a lot of surgical intervention. Even that would be much less traumatic for your body than the other interventions you discussed and you probably would be back to normal within a few weeks.

I hope this helps. Just know that there are a variety of treatment options available and even if you did end up have endometriosis and you opted for surgery, acupuncture and herbs could help prevent a recurrence. Good luck and feel free to contact me, if I can be of help.

Re: Alternatives

[cjsmith.livejournal.com]

Your comments about endometriosis and laparoscopy are reassuring. A year or two ago, my doctor and I were ready to go forward with exactly that: exploratory surgery to look for endometriosis. Instead we tried a new type of birth control pill which decreased my cramps to "survivable" again... for a while. Now the exploratory laparoscopy idea is an obvious next step. The fact that you have echoed this very idea makes me more confident that perhaps it wouldn't be rash to try that as an early step.

I do worry about recurrence, as you mentioned. I have a friend who went through an endometriosis "cleanup" (I don't know the right term), but not long afterwards her symptoms were back and she went ahead with a hysterectomy. The acupuncture idea intrigues me. I am stunned at what it has obviously been able to do for you. How often do you have to go for an acupuncture... session? treatment? You really have most periods with no pain? Wow. I can't quite imagine a life like that. I'm trying though :-)

I'm also scared that it's not endometriosis. If it's not that, and if it's not some weird intestinal hernia kind of thing, then maybe no one can ever fix it... (shiver)

Thanks again for talking this through with me!

Re: Alternatives

[vellan.livejournal.com]

I think it's a good idea to give your body a much support as you can right now--that means letting go of worry and speculation about what could be going on. At one point in my life, I would have scoffed at this idea, but having observed my own body and the disease process of patients, I am convinced that your cells hear everything that you tell them and process in your head. Fear and worry just add to what they are already trying to contend with so try to give them something positive to go on. I know that's really tricky when you are not feeling well, but just know that you can figure this thing out and get well and take it from there.

I have Leaky Gut Syndrome and I have experienced multiple "dis-ease"--fibromyalgia, interstitial cystitis, candida issues, etc. As a result, sometimes I have needed to be micro managed and other times I have gone for months without needing acupuncture. I also practice Tai Chi and follow a special diet (something that John turned me on to) and over the years I have gradually improved.

I have had a laparoscopy and a hysteroscopy and they are both effective tools for diagnosing and treating endometriosis. I think that would be something worth considering, given your history. Don't worry about hernias, etc.--that can be handled by a competent surgeon. Best of luck--just remember that you can manage this thing and that you can get well.

And, yes, it is rare for me to experience more that occasional bloating with my periods now and I don't even get that if I remember to take my herbs for the two week before it.

[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!

[firecat]

If you do Usenet at all, check out alt.support.menopause, which is a great resource for the kinds of problems you're having as well.

[cjsmith.livejournal.com]

I don't Usenet right now, but if it starts looking like I might need a hysterectomy I'll definitely go check it out. That would be a pretty big deal...