The Cure to What Ails Ye.

The answer, it seems, was under my nose all along.

Actually, it makes sense that it took me, and the medical team working with me, this long to figure it all out. The symptoms I was presenting with, though not unusual with what I have, did kind of present in a manner that was odd.

When I was in library school, I had a pelvic surgery done. When they were in there, they discovered a few rogue growths-- endometriosis. The surgeon burned 'em off, and told me, helpfully, to "keep an eye on it."

He didn't tell me what to keep an eye on, what to expect, what to look out for. I figured, hey, they burned em off. They're gone. I thought endometriosis was just periods that hurt like hell. So when didn't they hurt?

Surprise. Current thinking is that endo, at least, symptomatic endo, is an autoimmune response. It is a disease that is progressive, grows like a cancer (but isn't) and causes a lot of havoc, sometimes more havoc in women with fewer implants, and less havoc in women with more. But not always.

It is an enigma wrapped in a mystery.

Cutting it out usually gives a year or two of relief. Then the cycle repeats.

Yesterday I went to one of the top three endo specialists in the country. I told him what was going on... the headaches, the fatigue, the back and hip pain... and that the pelvic pain came three years into it.

Nothing I said surprised him.

Certainly, it seems like this could be it. The symptoms match, and it's been spotted in my body, unlike most of the other likely suspects... SLE, RA, and a host of other acronyms.

The bummer is, there's really no cure. They can cut it out, they can try to retard growth with drugs... But even hysterectomies don't solve the problem, necessarily. Sometimes (though it's not always the case) menopause doesn't even make it stop entirely.

And the pain might stop, for awhile, but the fatigue tends to be a hanger-on type of symptom.

It can lodge anywhere in the body... No one is sure exactly why. You can get it on your lungs, liver, or even, in rare cases, your brain. I know of a lady whose lungs collapsed every period from implants there.

So here's the plan: In early September, they're doing a day surgery (there was some concern, because I'm (cough) overweight, it would have to be a more involved surgery, but the doctor took a look at my gut and thought the laparascope would work all right.) They're taking a look at the general state of things, cutting out what they find, and doing some biopsies of the lining of my uterus.

The biopsies are not standard, but he's doing them partially because of my symptoms and partially because he's in there, why the hell not?

Then comes the drug treatments, which I will think more about after we know where the surgery leaves us. There are a number of drugs I could take... None of which are terribly pleasant. The most common are Depo-Provera, which I am not sure I can take due to a breast cancer risk (I might be able to), Danazol, which just has some nasty side effects and I don't think I want to go there, and Lupron. Lupron is actually a drug used also in late stage prostate cancer. It causes bone loss (which is scary), really bad hormonal swings (also scary) and weight gain (I really don't want to be packing more weight, but I would like my life back, too). These drugs are not drugs you can really take for any length of time.

So it could come back, if we get it under control, when the drugs are stopped.

What do we do then? Wash, rinse, repeat with the surgery, and hope for new drugs.

But that's probably two or three years down the road.

The kicker is I don't know as any of this will really help, but if I keep it from getting worse, and have a definitive answer as to what is wrong...

That's somethin', you know?

The sleep doctor had mercy and put me back on the focalin, 30 mgs. That dose will be increased, but we're taking it slow. 30 mgs gives me the ability to get in to the Hysterical Society for a few hours here and there. It's nice to be able to leave the house periodically.

Comments

I feel for you

You know you have to be your own physician these days, and you've seem to come up with the right answers. Hang in there.

Re:I feel for you

If I'm my own physician I'm in big trouble!

Best of luck!

Glad you're making at least some progress in this.

Bad GYN :)

Keep an eye on it... he could have told you what to look for. Smack the crap out of him.

Identification is half the battle. I would have given you some relevant literature citations but then again you are a librarian so it would only be duplicating effort. I do work for a big 4 firm but in the KM area we have lots of knowledge specific staff and I sit near a couple of physicians and a pharmacist. We were chatting about this over lunch and there is research going on about the use of Norethindrone Acetate in endometriosis and the QOL as compared to the quality of life with other txs.

It was also noted that you can always sell the Focalin on the street for $20 each.

I always seem to work with wierdos. I think I bring that out in people.

Good luck.

Re:Bad GYN :)

Wow, you guys have great lunchroom conversations! :)

Believe me, when the pelvic pain started, light dawned over marblehead... I went through the ultrasounds, the CTs (Berry barium! Yum!) and everything came back negative... That's when that little voice came back that, jeez, the ol' gyn did mention endo way back, didn't he?

Since going in and seeing it with the scope is the only way it can be dx'd... It was a little serendiptious and a little annoying to know that yes, I know what's causing the pelvic pain, and damn, maybe it's been causing everything else.

All the treatments seem unpleasant in their own way. The doctor I'm seeing, though one of the best in the country, is also known as "a Lupron pusher." I think in the grand scheme of things, it might be what I try first. Most of the bone loss (heh) actually reverses, and some of the hormonal stuff and the bone loss isn't so bad with add-back therapy, and it might not be as risky as progesterone/Aygestin type drugs.

I just got my old surgical report today... Which states in no uncertain terms that it was in there, with exact coordinates. I guess, then, that's something.

Yeah, Focalin is almost as expensive at the pharmacy :) and I have to jump through a hell of a lot more hoops to get it at the pharmacy than I probably would on the street corner. Sigh. Pharmacy I've been going to regularly for four years now... and they need my ID every month, when I hand them the hard copy rx (because it can't be called or faxed in. And of course, no refills.)

Thanks guys.... (Blake, et al. :) )

Thanks guys... I figure as time went on, I'd either feel better or we'd reach some sort of conclusion... I actually sort of wish I could have just felt better, though. :)

Re:Bad GYN :)

Don't think it is all that interesting, earlier in the week we discussed how much we hate traffic and why it sucks to work in a building on the same road as Tampa stadium and only 1/2 of a mile away.

Last week there was an exciting discussion about the best cheese flavoured rice cakes. (Publix grocery store brand won.)

Librarian Mode...Don't Rush...Do the Research

Although after all this time it must seem great to finally know what's wrong...and although you already have a procedure scheduled....Join this group todayhttp://health.groups.yahoo.com/group/erc/Spend some time here unless you have alreadyhttp://www.endocenter.org/Some of the "best" specialists can recommend treatment that can make things WORSE...so it's time for librarian mode...become fully informed about what they are offering and what the pros and cons on before you go forward.You want to be well, you want your life back, bye bye illness...I understand... BUT be aware that the "cure" can be worse than the condition. Even the most respected doc can do the wrong thing convinced that they are right.When you are ill and vulnerable it's tough to say no, but say no until you are certain you will get the treatment that will help not hurt even more.Anyone who offers you Depo Provera is a BAD BAD doctor. Never ever take that poison.

Re:Librarian Mode...Don't Rush...Do the Research

It is just silly to say anyone who offers you X is a bad doctor.

Patients must actively participate in their healthcare and one of the ways we participate is by being informed about all of the choices available to us and having our physician explain all of the choices, not just the preferred choice, or the easy choice.

Using Depo Provera has certain risks including bone mineral density loss, but there are indeed patients - the most obvious being those who are not surgical candidates- for whom depo provera is a reasonable treatment to consider.

So being offered treatment options is what a physician should do. Not discussing every possible tx, including depo is not kosher if you ask me.

Re:Librarian Mode...Don't Rush...Do the Research

Lots of docs get BIG MONEY from drug companiesto push their drugs on patients...Depo Provera,Lupron...are examples of such drugs. Who doBIG DRUG companies target? The "best" docsin their specialty.This profit machine means the docs push iton you without any concern for side effectsor push a host of other drugs on you to "counteract"the side effects...AND then they don't stay informed of new drugs whichmight work better with fewer side effects becausethey are not getting payola from those companies.Librarians have the skill set to find out whatthose new and alternative better treatments are.Here's a gizmo few know about EXCEPT the manymen who had prostate surgery...turns out itworks for uterine fibroids...most docs STILL do a hysterectomy for those...http://www.startribune.com/535/story/1356057.htmlI'll bet money that a doc that does not know how touse this or can't make a profit from it will throwa hissy fit and not discuss it or tell you it doesnot work. But IT DOES WORK!How to find a doc that's not so addicted to bigdrug money that he or she will consider a better drugor treatment for you that they are not getting payola from? Tough Challenge!http://www.nytimes.com/2007/03/21/us/21drug.html?e x=1332129600&en=8ab21926768519a3&ei=5090&partner=r ssuserland&emc=rssThe New York TimesDoctors’ Ties to Drug Makers Are Put on Close ViewBy GARDINER HARRIS and JANET ROBERTSPublished: March 21, 2007Dr. Allan Collins may be the most influential kidney specialist in the country. He is president of the National Kidney Foundation and director of a government-financed research center on kidney disease....Would a MAN take a drug that causes bone loss?Heck NO!And since as women age osteoporosis is a riskwomen should not take a drug that weakens bones.Google Depo Provera and Lupron and get ready forthe flood of horror stories and law suits.The treatment should not make your life worse.The treatment should not do permanent damage.The treatment should not be worse than the cure!

Re:Librarian Mode...Don't Rush...Do the Research

You really need to get a grip. I've been a RN for a decade and a half. No physicians I know get any money from any drug companies for prescribing their drugs. That is illegal.

Would a MAN take a drug that causes bone loss?
Heck NO!

Depo Provera has been used in the treatment of advanced prostate cancer for years. While there are other hormonal treatments more commonly used today, however for some patients Provera is the treatment of choice. Many protease inhibitors have been implicated in bone demineralization. However if you need a PI in disease states such as HIV having bone demineralization may be the lesser of two evils. I would say the same for prostate CA and bone demineralization. I'll up my calcium and exercise before dying. So yes men do take drugs that may cause bone loss.

And since as women age osteoporosis is a risk
women should not take a drug that weakens bones.

Yes bone demineralization is of concern, however that concern must be weighed against the benefits of any therapy. To suggest that any therapy should be condemed because of one side effect is absurd. The fact that bone demineralization and osteoporosis is significantly less common in women of the same age in Mexico and India demonstrates that there are significant lifestyle and dietary implications as well. So if you take a drug that is known to cause BDM take a walk for thirty minutes a day and eat a balanced diet.

Google Depo Provera and Lupron and get ready for
the flood of horror stories and law suits.
Is that before the UFO sightings? Can it wait until I send my bank details to the Prime Minister of Nigeria? Dignifying that remark with a serious answer would be a waste of my time and an insult to librarians.

The treatment should not make your life worse.
That is why patients must consult with their physicians about healthcare decisions. Try not to rely on the Internet it is full of idiots.

The treatment should not do permanent damage.
Tell that to the guy that cut off his own leg pinned under a rock rather than freeze to death in a blizzard. Tell that to the XDR TB guy that flew against CDC advice who had a lobectomy. Tell that to a mother who donates a kidney to her child. Again these are decisions one must make in consultation with their physician.

The treatment should not be worse than the cure!

That makes no sense. If you mean the treatment should not be worse than the disease, again that is a physician patient decision. My brother had total body radiation to prepare him for a BMT for AML. It was horrible, the concentration camps treated people like that. I am certain the treatment was horrible, but many people can endure a great deal if it will give them a bit more time with their families or improve their quality of life.

While I don't suggest everyone rush out and try Provera, I can't suggest that everyone rule it out either.

Sure I have received the occasional free pen or post it note from detail reps from the drug companies, and I've given away more samples to patients who could not afford their meds than I could ever take in my entire life. I know hundreds and hundreds of good doctors who treat their patients with dignity and care and I don't know any that are pushing any drugs to make a profit. Truthfully how could they do it, one doctor can't write enough prescriptions for any drug to increase his stock holdings. It is against the law for physicians (and any practitioner) to get kickbacks and the value of any kickback would certainly be much less than a career and the respect of their peers that would be instantly lost were they to be so stupid.

However I have known patients who said they were being killed by their toaster, or some drug is wiping out thousands (without any ADRs to back that up). They have always seemed nuts to me. I'm not big on conspiracy theories.

If your doctor is pushing you to take a treatment you don't want find another doctor. Certainly everyone should be as informed about their care as possible, however not to the point of paranoia.

Re:Librarian Mode...Don't Rush...Do the Research

Just so happens I'm taking Provera (not the Depo poison) different chemistry same manufacturer.So if my posts are psycho paranoid, that proves my point about what medications can do to you.I stand by my statement that many doctors proscribe what BIG DRUG companies presuade them to and don't stay informed of new and better drugs and treatments that we all have a right to know about and receive.We're probably getting into places that LisNews was not meant to go and probably embarassing Shoe.But...It's important not to accept what's recommended if there's a better alternative out there. If the doctor's not willing to consider those he or she is the wrong doc for you.

Holy Cow, I Go Away For a Day or Two...

:)

To AP... Believe me, I've been to those sites... plus drug sites, anti-drug sites, surgery sites, holistic medicine sites... When it occured to me that this probably is the problem, then I dug deeper. I just wish I'd known sooner.

The problem with the drugs, as I see it, is two fold... Number one, I am someone with a royally neurotic immune system. This means, usually, one of two things. It either takes the big gun drugs to get any effect, or getting me within two blocks of the active ingredient of the big gun drugs makes me break out in boils. And I don't know unless I try.

Number two, even for people without weird systems, these drugs... every last one of them sucks royally. These aren't pop a pill, and maybe you'll have a bit of weight gain, or inject a shot, and maybe you'll have a sleepless night... These things do really nasty ass stuff to your body.

My doctor may be a Lupron pusher. Maybe not. I didn't see it. He didn't push it on me. He actually laid out the options and said, "What do you think?"

Because I am in librarian mode, I already knew what I thought.

The other problem with drugs in general, and esp. this variety, is one has no frickin' idea what they're going to do in terms of side effects. What could royally screw someone else up may have no impact on me. I might get bone loss so badly putting on a shirt can break my arms... and it might not effect someone else that way at all. Unfortunately, I feel like it all involves a little bit of experimentation.

I took Orthotricyclen for years. No ill effects whatsoever. I still had crappy periods, but I didn't have any emotional problems. It actually helped that bit. But I know some people can't take it... because it makes them sobbing masses of anxiety.

The other thing I've been seriously considering is something my consultant doctor told me. He thought the initial move to put me on valium, waaaay back when we thought the fatigue was from seizures... Was quite wise. "Isn't fatigue a side effect of valium?" I had asked. He said, "The fatigue valium gives you is going to be a lot easier to deal with than what you're feeling now."

Matthew... I agree wholeheartedly that no treatment options should be withheld from patients. They should be made aware, and given advice, objectively, so that they may make the decision how to proceed. A doctor who says, "I won't rx this, period" had sure as hell better have a valid reason, tell me what is, and respect my decision to take or leave it.

Really, I think my options, as it stands, are kind of limited in the fact that none of them involve really feeling great after the fact, and the chances of any of them (even hysterectomy) eliminating the problem are slim.

Hysterectomy seems like a loaded gun, and an invitation to more problems. It might be worth it in a year or two. But to tell him to take everything out without knowing exactly how things have grown... Doesn't sit well. Neither does taking drugs, without knowing exactly what we're dealing with.

For that reason I'm taking the initial surgery... I want them to see how it's progressed from the last time they were visiting the posterior cul-de-sac (which, evidently, is where it was at). Once they see and remove what needs to be removed, short of taking out things that are supposed to be in there, we'll discuss it and see where to go from there.

Honestly, guys, I wasn't ignoring this thread... I had a little break, spending some time formatting a couple hard drives, and then rebuilding things... All I can say is, dual booting is easy, once you've gotten over the pain in the ass of installing the "Plug and Pray" Windows and all its drivers, and get the pure 45 minute pleasure of installing the real works-out-of-the-box operating system. ;)

Shouldn't you be doing this?

This post, and comments, reminds me of that TV commercial (for insurance?) where the guy is taking instructions from the surgeon over the phone on where to cut. And asks, "Shouldn't you be doing this?"

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