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Could it be back?

Hi, I had surgery on Monday, a hysterectomy, I haven't had any 'lupus' issues for nearly 4 years and have not taken any meds for 3 years. However following surgery I got an infection and am back in hospital, feeling terrible but they can't put their finger on what's wrong. An outreach nurse is coming to see me today, and I have to have a scan for the surgery tomorrow, but could it be back and Rhys why I am feeling so terrible???

7 Replies

Hi kelly

So sorry you are going through a very tough time with your health. You could well be having a lupus flare from the trauma of surgery or the infection. So tough when you hadn't had any lupus problems for 4 years and not been on any medication for 3!. That will change now, I do hope the hospital can soon decide what's happening, treat you and you can start your long recovery process and feel better soon. Take CareX

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Hi I'm guessing it could be the issue, my Crp which is the only result they would give me is 104. Now it all depends on whether my rhuemy will see me while I am still in hospital... So frustrated! X


Hi Kelly

He should do with a reading as high as that!. Could either be an infection or inflammation!. I know my Rheumy was very reluctant to see me when I was last in hospital and it's bad!. Hope you get sorted soonX


Hello, Kellyleg. I understand how you feel, and your concerns and frustration over what is going on with your body. The same thing happened to me back in January of 2004 when I had a hysterectomy. At first, I chalked up the horrible way I felt to the infection I got from the hospital, the ordeal of the anesthesia, and any other excuse I could think of related to the surgery. By December that same year, I finally gave up and went to my doctor. Long story short, no one would officially say that the surgery caused the health decline, but I am certain that it was the cause. It took 12 years and several changes of rheumatologists to get a diagnosis of lupus. I am now waiting to start Benlysta treatments. I wish I had the resources back then that we have now, specifically all of the forums and blogs from folks who had similar symptoms, because I would have changed doctors more frequently and been more outspoken. Search and read as much as you can and don't be afraid to as questions, speak up, and challenge nurses and doctors.


Hi Kellyleg,

just seen your post, have they said this infection is from the surgery as

I had the same op Jan 2015 and had my wound come open when the clips were taken out,( I could post a picture but it's disgusting) after a number of test done on the open areas and four different antibiotics it turned out to be E. coli inside and out on the wound. They finally gave me an antibiotics to treat it, but caused my tendons in my hips to flare up.

Hope they sort this out sooner rather than later. Let us know how you go.

Take care, noonoo x


yes i had a herni opperation was lupus free for 4 years then it came back 3 months later thing it was to do with this even though i felt allright.


Kellyleg, sorry about your experience with your hysterectomy and the infection and on going problems. I too had a hysterectomy in January this year 2 weeks after having bunion surgery on both feet. (Stupid, I know) but timing was everything for me. Anyhow I had started mcyo 2 months before so wasn't completely stable with lupus and long term kidney involvement. Long recovery but no infections from surgery. I do have to say though that I did get joint pain in hands and feet and still have this to date. Even after Rhumy upped myco. I did try self medicating with some prednisone which I always have on hand and this helped a bit, but med increase hasn't done a lot for me at this point. I think I read about certain pain going along with a hysterectomy and Lupus being very hormone related you may get a flare from these changes. I can't prove it but my pain seems to have come along with my hysterectomy along with hot flashes that have added stress on my system. This making sleep even more difficult than prior surgery. I started eating healthier and getting more exercise and my system is starting to feel back to normal but still not sleeping well and joint pain persists. My feet still feel achy and almost like I have been walking hours in hot weather and this had improved a few months back so I feel this too might be a flare caused from the healing , my Rhumy doesn't think so after a phone conversation about my low Neutro counts. My GP is looking into it with an xray to see what is causing the pain. Time will tell.

Sorry for going on about this. I hope your surgery goes well and you start to recover and feel somewhat normal again. Stay positive and it too will pass.

Good luck


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