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

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.