View Full Version : Advice for upcoming surgery?

04-05-2004, 12:59 PM
I have SLE lupus with lupus arthritis. I take plaquenil and viox-and carbatrol to control seizures. I am "in-between" rheumies now, as my last one was horrible and new one cant see me until August.

I have to have a subtotal hysterectomy soon-and it is a 3 month recovery period. I have a toddler that I stay home with-and I will be able to get help from my mom and hubby for the first month or so...but after that I am on my own.

Does anyone here have experience with going thru surgery with Lupus? I am extremely worried that this will set off the flare of all flares for me, and make the recovery a horrible process.

Any help is appreciated-

04-05-2004, 10:44 PM
Sorry to hear of your upcoming surgery.
I to will be having surgery but just a tubal at the end of the month.I haven't had a period for 2 months. I think it is the plaquinil and Methotrexate but the ob/gyn says it's the birth control pills. I am so glad I had my 2 boys already.
I have a 8 and 3 year old and my husband will just be taking the week off. Since your immune system is low already, as you know recovery time is always longer. The more you rest the better for you. Unfortunatlely we never know we the flare will happen. I hope all goes well for you on your surgery and write and let us know how your feeling.
Your not alone.


04-06-2004, 08:15 AM
Thank you kitty for your reply. It helps so much to know that others out there understand.

I am so scared about this surgery and the pain and possible flares-every time I think about it I just break down and cry.

With my arthritis my house is a complete mess and I am behind on all my errands...and its hard to just let go and breathe sometimes.

04-06-2004, 08:17 AM
Oh and kitty-sorry I forgot to say this in last post.. I wish you a very speedy recovery from your tubal. Take care and God bless.

04-06-2004, 09:14 AM
Hi Frazzledfraggle:
I haven't had an opportunity to say hello and to welcome you to our forum.
I had a complete hysterectomy with Lupus. The only complication I had was that it took about six months for me to completely recuperate (well, not completely, but enough to get back to normal life) because of the fatigue and the slowed healing process. I did not suffer a major flare during or after my surgery. I was lucky in that my children were grown when I had my surgery and so I did not have to worry about child care. Also, my husband was very supportive and extremely helpful.
My rheumatologist and internal medicine doctor worked very closely with the surgery team prior to my surgery. I am sure that your doctors will do the same. But, do not hesitiate to express your fears to the surgeon, the anesthesiologist , your rheumatologist and to your primary care doctor. Ask as many questions as you can and "DEMAND" answers. You must feel safe and secure prior to surgery and it is up to your medical team to make you feel that way by providing you with all of the information that you need.
Let us know if we can help you in any way!!!
Best of Luck
Peace and Blessings

04-06-2004, 09:20 AM
Hi Kitty;
I also wanted to welcome you to our forum and to thank you for all of your input.
You are right about the unpredictability of our flares. When we don't expect them..they pop up. When we think that may pop up, they don't. It is madness sometimes!!! :?
Best of luck on your surgery. Let us know how you are doing!!

Peace and Blessings

04-08-2004, 04:47 PM
Hi Frazzled...

I had the surgery about a year and 3 months ago. It is really a simple procedure.

With having LUPUS this is what you can expect...

Your muscles won't want to be very active for a while. Most people recover this type ofsurgery very fast... With LUPUS it will take a little longer, (but not drastically long). Everyone with LUPUS is different so recovery time will vary.

I did not have a flare up either when having mine but I did heal slower and did have some compications that possibly were not due to lupus but due to a bad reaction to pain meds.

My advise is to have the surgery knowing that you will be fine. You will be uncomfortable when you wake up (everyone is). You will tire easier afterwards. You will regain your strength, and when you do... You will be happy to not have a monthly visitor anymore or the pain that comes with it!

Getting rid of the pain was the best for me. I regretted the surgery until I completely healed from it. (Healing could take months). Now... when I look back, even with the complications... I'm so happy that I had it and it is one less problem to deal with when having lupus.

Keep in touch and let us know how everything turns out.