Lupus & considering Hysterectomy at 19

I realize there are specific threads for this... but I figured I'd start out here.
I have SLE (Lupus) and every month I get a flare up, consisting of: light-headedness, sometimes fainting, low blood sugar, shaking, flu-like muscle aches and stiffness (due to arthritis), difficulty breathing.... I'm sure there's more I can list. All this along with the normal pms and abdominal pain. The influx of hormones really messes up my entire body. I've got two cysts on my left ovary, both are approximately 2 cm. Under normal circumstances they'd be considered too small to remove.... but I really want them gone. I've heard that some people with lupus go into remission after having hysterectomies... I say hysterectomy loosely; what I really want are my ovaries gone. I wouldn't use HRT either as the hormones negatively affect my lupus. Now here's my main issue... I'm only 19, but can't I use 'informed consent' anyway?
I don't want to sound like a stupid child, but I do not wish to have children. I don't want to risk passing on the Lupus gene. I wouldn't wish that on anyone let alone my own child. It would be both difficult and dangerous for me to conceive. When the time comes I'll adopt; there are so many children out there that need a home....

So my question to you is... Do you think this is a good idea?
And off the top of your head do you think my insurance would pay for it if I could convince my obgyn that it's 'medically necessary'

Thanks in advance for reading my long and poorly phrased spiel. Any advice will be welcomed.

Hi,
I sure hope I can help.
I was diagnosed with SLE at age 21, but I know I had symptoms as early as 17. I was always so TIRED in high school.

Initially I had just arthritic and sun sensitivity issues. (I ignored the doctors admonition to stay out of the sun, ignored him and paid the price with a terrible flare-up!

Lupus finally started to ignore my joints and progressed to my kidneys when I was 24. I went on dialysis at 27 and received a kidney transplant at 31.
During the time between the first signs of kidney failure and my actually going on dialysis, I was given HUGE doses of prednisone (which I flatly refuse to take ever again, certainly not 80mg a day - can you imagine?) and then, when I insisted on getting off the prednisone, I got Cytoxan, which is an auto-immune/immune-suppressing drug. The lupus flares ended while I was on dialysis (5.5 years) and I was blessed with a kidney transplant at age 31.

At 33, I had my right ovary removed due to a 7mm (cm?) cyst. I never once considered lupus to be related to my uterine, cervical or ovarian issues, which were limited to heavy and inconsistent bleeding and mild pain. When I got 2 abnormal pap results in 2000, at age 39 ('dysplasia': to what degree, I don't know), I jumped at the chance to, as I put it to my GYN: "get rid of anything that can get cancer." For me that was uterus, the remaining ovary and cervix. I was past the age of childbearing and had never once gotten pregnant during my marriage.

In all the years I've had lupus I have heard of lupus affecting joints, skin, the CNS, hearts, lungs, energy and, of course KIDNEYS. But I've not ever heard of lupus being related to female issues. Nonetheless, I'm not saying they aren't related. When you're young, lupus is typically at its most active. Once I had a transplant, the meds I took (anti-rejection) were the same kind of meds used to keep antibodies from attacking the body, which is exactly what lupus does.

I am not sure what, if anything, I can tell you. 19 is so very young to get a hysterectomy or a double oophrectomy. There are so many other less drastic treatments. But if you don't want kidsand have done due diligence regarding the side effects and risks of surgery, you should, of course, be able to do what you wish.

It is strictly my guess as to whether insurance would pay for an oophrectomy without a reason (like cysts.) I am 99.9% sure no insurance would pay for it just to try and get into remission, since lupus researchers who are experts in the disease, have never established that a surgery like that would be beneficial.

In terms of passing lupus to a child, it is also my long time understanding that it is highly RARE for a mom with lupus passing it to her child. It happens in a limited way, in very small numbers. Lupus is genetic, yes, but you're either predisposed to get it or you are not. Nobody in my family tree ever had lupus. I have always figured God gave me this challenge to learn from and to use as an encouragement to others.

You will be in my prayers.
Kim

PS: I am not a doctor, do not take this reply to mean I am offering you sound medical advice. That's for your docs to do.

But to get a hysterectomy to cause lupus to go into remission? That is not anything I would recommend. Lupus is wily and unpredictable. Nothing has ever been shown to permanently cause remission other than taking autoimmune meds that fool the cells into a "cease fire."