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lupus and hysterectomy???

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Posted 3/6/2008 10:48 PM (GMT 0)
my gyn is suggesting that i get a hysterectomy..i have been bleeding for 8 months with maybe a week break here and there.. i had tons of bloodwork done and i had an ultrasound of my uterus and ovaries.. uterus was fine but my ovaries have 3.4 cm cysts on both almost the size of my opvaries..my RE is suggesting have both ovaries and my uterus removed with NO HORMONE REPLACEMENT therapy... my gyn wants to leave my ovaries but if the cysts are present i want it all gone... would you say my RE trumps all...has anyone had ovaries and uterus removed with no HRT and did fine... im wondering if my RE is thinking my lupus will lighten up with having the estrogen gone... is this something even possible/.... thanks for reading

amy

Posted 3/7/2008 1:37 AM (GMT 0)
Wow. That's a tough call! I don't blame you for wanting it all gone. But no hormone replacement therapy? My doctor has said you can have "disease burn out" after menopause. This is just definitely over my head. I know someone will be able to give you some good advice. I don't know if one doc "trumps" another it would be nice if they'd sit down together with your records and come up with a good solution for you that is agreed on by both. Good Luck, Judy
Posted 3/7/2008 2:28 AM (GMT 0)
Hi Amy, I can't tell ya if it will help your lupus or not. I'm 50 years old and a cervical cancer survivor. I had a hysterectomy when I was 26. They left my overies in for 2 years because I was so young. Only to turn around and have to due surgery to remove them. They had large cysts in them. One was causing pain and when they tried to clean up around the other overy to save it there was a cyst that busted on the operating table. So they took it out too. I was offered HRT but there is so much cancer in my family that I was afraid to. Now 20 some odd years later and 8 years of steroids I do have minor osteoporosis. I do have to take something for that now. I basic blame it on the steroids more than anything but I could be wrong. If you do start having thinning bones you can get on a RT drug and they are very effective at replace bone loss.
So for my point of view if I had it to do over I would have had it all done at one time. Having to go back two years later was not worth it to me. I beleive you and your doctors are the best judge of that I just wanted to share what little knowledge I have. I wasn't sick with any autoimmune disease back than so if taking out my overies with no hrt was suppose to stop that I can tell you this much. It didn't.
Let us know what you decide to do. Rember in the end it's your body.
hugs
carol
Posted 3/7/2008 11:37 AM (GMT 0)
Amy, I had a hysterectomy done almost three years ago. I was diagnosed with Lupus two years ago. I have went with no Hormone Replacement and just recently started menopause. I am only 38 and the hotflashes got so intense that my Doctor finally put me on a non hormonal prescription to control the  hot flashes. It helps, I have went from 20 or so hot flashes a day down to two or three and they are much more easily handled.

There are other options besides Hormone Replacement Therapy after a hysterectomy. I don't want to get into taking any hormones after all of the horror stories you hear about.

Good luck, having a hysterectomy certainly helped me in the long run.

Connie

Posted 3/7/2008 1:19 PM (GMT 0)
Amy, I had rupture cysts at the age of 14, then 2 large one at 18, causing bleeding, after surgy 3 days later I had blood clots on my lungs. again at the age of 20, surgry all three times. At the age of 29 I was dignose with lupus. 2004 at the age of 48 I had leaking cyst they decided to remove my ovaries, but left my uterus. I had no HRT due to the of the blood clots. I do have bone lose, my rhumey says it's from taking preds. to long vitamin d 5000unt. I HOPE EVERYTHING GOES WELL.
Posted 3/7/2008 3:29 PM (GMT 0)
Hi Amy, How old are you? My SIL had a hysterectomy and ovaries removed at age late 40's. No HRT because she had endometriosis. She actually did extremely well. She does have hot flashes which are manageable, but I can't believe how much more pleasant she is . . . not sure how that happened . . . maybe as a result of feeling better from not having your body depleted of iron . . . I'm sure this is a huge decision for you. Keep us posted. Blessings!
Posted 3/7/2008 5:40 PM (GMT 0)
thanks for all your replies i definately have some thinking to do... I am 36 and i have 3 adopted children lupus left me infertile... soooto my uterus thanks for nothing Haha
Posted 3/7/2008 7:32 PM (GMT 0)

Sorry--didn't have time to read others' replies.  My mother, who had SLE, was put on medication to try to throw her into an early menopause.  She was told that menopause could help induce a permanent remission from Lupus.  Something to do with hormones.  I'd be careful here, though--I'm not sure medical science knows exactly what is up with hormones and autoimmune disease.  The only thing I've ever read is that more women tend to get AI disease, and this is presumably because of hormones. 

As far as your RE trumping your GYN?  If you mean rheumatologist by RE, personally, I wouldn't think that would beat a GYN doctor when it comes to hysterectomy.  That's like going to a podiatrist to have a brain tumor removed (maybe not quite, but you get my drift).

In any case, best to you.

El


Posted 3/14/2008 2:08 AM (GMT 0)
Personally, I don't believe that Estrogen has anything to do with Lupus.  If anything my Lupus symptoms and blood tests have gotten worse since my hysterectomy (no HRT) September '06.  I had a total hysterectomy because of cervical cancer and didn't get the official Lupus diagnosis until 9/07, one year after the hys.   I had cysts on my ovaries too, and surprised when the path report came back that I had a tumor inside the cyst.  It was a good thing I had my ovaries removed. 
Posted 3/14/2008 3:57 AM (GMT 0)
The medical director of the Lupus Foundation of America told me that she does not think estrogen has a negative effect on lupus. They had just done a study that according to her, proved that. My rheumy and pcp agree with her. I wonder if we'll ever know for sure, but I know that as far as I'm concerned, estrogen saved my life. I started taking compounded estrogen several years before I was diagnosed with lupus. I had a hysterectomy a year or two after that, and I can't imagine what my hot flashes would be without it. And my moods. I was pretty hard to live with while I was going through menopause, at least until I started taking estrogen.
Posted 3/14/2008 11:20 AM (GMT 0)
I had a complete hysterectomy with ovaries removed last August. I am on the lowest dose estradiol patch that I could tolerate. Anything lower and I was having horrible hot flashes. My Rheumatologist said that I am better off not have the hot flashes and staying on the hormones. My lupus symptoms don't seem to be any worse - but definitely not in remission. At least I am not anemic and bleeding all of the time, which was the problem prior to this. It is nice to no longer have a period!
Posted 3/14/2008 11:22 AM (GMT 0)
oh yeah...and my moods are much better, as well.
Posted 3/14/2008 10:53 PM (GMT 0)
Hi Amy,

   I think we are all different....lol.  I had my uterus and cervix removed when I was 28 and 10 years later my ovaries. I have never taken estrogen and do well without them. I'm now 50.  I hope what ever you decide goes well and you have no problems. Keep us updated and take care. You will be in my thoughts and prayers.

                                                                               Babs

Posted 4/15/2008 12:10 AM (GMT 0)
 Thanks everyone for all of your comments on this topic. I have been having the most odd cycles. I was comforted to know that I am not alone. My rheumy was concerned because I am anemic so I will be going back to the gyn. again soon. Hopeful I will get some good news I am tired of surgical procedures I have had way to many to be 30.

Posted 4/15/2008 12:12 AM (GMT 0)
I forgot to mention I have had cyst on my ovaries in the past. My cycle leaves for almost a day and then it comes back this has been going for a couple of monthes. some one help.
Posted 4/16/2008 12:41 AM (GMT 0)
Hi AMy,

 

I'm another one who has considered a hysterectomy, for about 6 years now.  But I'm TOTALLY freaked out about the complications of surgery.  Even if it's done vaginally.  I'm creeped right out about the whole procedure.  But my periods are SO heavy because I'm on blood thinners for my APS.  Actually, even before my lupus diagnosis, I had major issues with my periods.  I'm never going to have children, so why the heck do I go through hell every month?  I just want to rip the sucker right out and be done with it!!! 

 

So I understand your questions about it all.  My gyno said I'm a very good candidate for a vaginal hysterectomy.  However, I have so much going on with my lupus, that it could really backfire on me.  My lupus is well under control right now and I don't want to upset the cart so-to-speak.  Definitely get opinions from all your specialists.  I wish you well in your decision!

 

Ginny

 

 

Posted 4/16/2008 3:07 PM (GMT 0)
I have PCOS so I've dealt with cysts since puberity. Have they suggested a 3-4 month course of birth control pills? The pills will shrink most cysts. It has worked for me every time. It also resolved the heavy bleeding. Depending on your risk factors, that might be a lower risk option right now than the hysterectomy. These are tough decisions. {{Hug}}
Posted 4/17/2008 2:05 PM (GMT 0)
Hi Amy:

I had a hysterectomy at age 32 it was a total one. I was started on HRT and was on it until Aug of 2007. So that would be 10 years on the HRT. I asked my rheumy if the HRT would effect my lupus and he said no, that there wasn't positive proof either way that HRT is bad for lupus patients. I've been on prednisone for 8 years now and yes, I've got osteoporosis but they feel it's mainly due to my prednisone usage. In August of 2007 I had a 2cm blood clot in my IVC and I had to stop the HRT. At first I had terrible hot flashes, but now I'm doing alright w/o the HRT.

I know this is a tough decision to make. I'd talk with your doctor some more and see what they recommend. Make sure that your rheumy's opinion is taken into consideration. I wish you the best of luck and I hope that you begin to feel better real soon.

Best Wishes,
Barbara
Posted 4/19/2008 11:25 PM (GMT 0)
Hi Amy!

Just like the others who replied, I also had a complete hysterectomy at age 40 and then, was diagnosed with my lupus at age 43. I did use HRT for the first two years but weaned myself off. I had so much trouble with hot flashes, though, so I now use bio-identicle estrogen/progesteren/testosterone that is compounded at a compounding pharmacy for me. I put the cream on twice a day and it does wonders for my hot flashes.

As for my lupus and RA, the hysterectomy might have brought it on stronger for me. Having a hysterectomy is a major shock to your system. I had my first major flare just six months after my hysterectomy and it took forever for a diagnosis. In looking back, it is most likely that I had lupus since my late teens but I had so many remissions that it was never really diagnosed. My family doc kept suspecting lupus for many years but nothing concrete in my tests would support his suspicions.

I guess what I am trying to share is to be careful. Listen to your rheumy and let her/him put you on some additional prednisone before and after this major surgery. This could possibly prevent a major flare. I had so much pain from my endometriosis and adnenomyosis that I would never go back. I feel much better after the hysterectomy. Well, except for this darn lupus and RA. What a trade-off!

Best of luck to you as you consider the pros and cons.
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