Question for those who've had a hysterectomy

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Jenny S.
Regular Member

Date Joined Oct 2007
Total Posts : 80
   Posted 8/7/2008 11:38 AM (GMT -6)   
For those of you who've had a hysterectomy, did the procedure make a difference in your Lupus symptoms?  I often experience a flare around my menstral cycle due to the changing hormones.  My gyno has mentioned the idea of a hysterectomy but I would like to know what others have experienced. 


I have Lupus ... Lupus doesn't have me. 

Dx: Raynaud's(2000)·Lupus(2001)

Rx: Pletal 100mg·Norvasc 10mg·Prednisone 5mg·Plaquenil 400mg


Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 8/7/2008 2:27 PM (GMT -6)   
I got one when I was thirty-five, eight years ago, but I had been suffering for years with severe endometriosis, polycystic ovary, and then finally questionable pap smears.  Every two weeks, sometimes once a week, I would begin bleeding badly and usually ended up having to go to the ER for pain and bleeding. Then I would go with no periods for a month or two but feel awful and be bloated and have ovary pain.
I definitely felt much better after my hystero and getting on hormone replacement. I felt like a child again having a  constant steady dose through a estrogen patch, like I did before I hit puberty, no ups and downs. My mental state improved and of course the pain and bleeding was taken care of.
My ANA is elevated all the time, though it does go higher and lower as does my CRP. The ups and downs occur after having a hysterectomy while on replacement therapy, which I wouldn't do without due to problems with brain cell degeneration and osteoporosis.  Actually, I think mentally my mind was really bad from not getting estrogen, and when I got it, I felt much better. So if your ovaries don't work, you can feel pretty bad, though I felt that way all the time, the hassle of the severe bleeding and the rest definitely made things seem worse.
What was nice about my full hystero was that they could do accurate hormone replacement. Sometimes they leave the ovaries, but they areen't working to provide enough estrogen anyway and then become polycystic or whatever and they have to go in later and take them.
I would say the biggest factor I felt was not an increase or decrease in autoimmune episodes as much as total brain fog due to lack of estrogen, and sluggishness vs. more energy and better brain function once I got on replacement therapy estrogen patch. I don't like the pills because they cause a daily up and down. My doc explained that for an estrogen pill to work all day, it has to deliver eight times the recommended dose when you first take it and it normalizes toward the middle of the day and then for the last half of the day you are getting less and less.  So every day you have ups and downs vs. a patch which delivers a constant steady dose. I can't take the pills.
Anyway, I think there are a lot of factors about why it would or wouldn't make things worse. One doc tried to tell me that women felt more pain because of periods and I told him he was nuts, if anything, we learn to cope with pain better than men. Healthy men just downright don't get as much pain normally as healthy women do.  The guy was a real hack. I don't like docs that have a "gender" agenda, since it usually ends up with the female patient not getting adequate and compassionate treatment and can be a form of discrimination. I'm not saying your doc is going there, but you need to be aware that the converstation can open the door to comments and tx that you may not like.  You just have to trust your doc to talk about this stuff.
I'm sorry I couldn't answer you better. Best of luck, Jenny.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Regular Member

Date Joined Apr 2006
Total Posts : 169
   Posted 8/7/2008 2:27 PM (GMT -6)   
I had a partial hysterectomy, due to endometriosis, have lots of scar tissue. For me it didn't make much diff.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 8/7/2008 4:42 PM (GMT -6)   
Hi Jenny,
I'm actually having a hysterectomy in November!  It's a partial.  So my ovaries are staying, but the uterus, and cervix are gonzo.  I can't wait!!!  I will still have the PMS symptoms every month because the ovaries are still going to be there, but I've been told by my gyno that the PMS will be way easier to handle. The uterus plays a huge roll in PMS apparently..... Who knew!
I can't have my overies taken because I CAN'T go on hormone replacement.  Additional estrogen and progesterone will put me at a very high risk for clots.  I'm prone to those.  I had a stroke 6 years ago, and I have the antiphospholipid syndrome.  So HRT is out for me. Even when I hit menopause.  I'm 34, so I need my hormones to keep my bones strong.
That would be one very important thing to discuss with your gyno.  The HRT question along with our lupus.  What the complications can be and the risks.  Do you know if you have APS or the anticardiolipin antibody?  Either or both of those will mean you have to keep your ovaries.  If you want to talk about this more, I'm starting another topic on this, or we can talk about it in your thread! 
Good luck with your decision. It's a big one!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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