Lupus and operations: I am scheduled for a total... - LUPUS UK


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Lupus and operations

Willow7733 profile image

I am scheduled for a total hysterectomy for the end of October. I was wondering if an operation like this will cause my lupus to flare? I’ve just had my first cat scan and ultrasound (since last December) that shows no new blood clots in my legs or lungs! Yay! Now that my disease is “calming down”, my gynaecologist says it is ok to go ahead with this major surgery. But I am scared. Anyone else had this done, and their lupus didn’t flare up???

45 Replies

Hi Willow I had this operation 6 weeks ago and it didn’t make me have a flare at all - good luck for the end of October ❤️

How are you getting on ?

I’m doing really well thanks 🙏🤗💕

Good morning Willow7733,I had a complete hysterectomy 9 years ago and I don't think I had any problems.

In fact during my gynaecology problems my Lupus was mostly non existent.

Best wishes jx

Hello Willow. I’ve not had a hysterectomy But I’ve had 4 D&C. Never a flare. Felt

Yucky but that’s pretty common. If you

Trust your Dr and now is the time Sounds

Like optimism is word of the day. 🙏🏻Titters

Good luck. I hope it all goes as planned.

Thank you so much! I few less nervous. My lupus has been giving me so many problems since December. They decided that a hysterectomy would help me a lot and hopefully lessen the DVTs and pulmonary embolisms I have been having since then.

Tanitani profile image
Tanitani in reply to Willow7733

Let us know if it helpes

Hi Willow. I am scheduled for left ovary removal, endo excision and fibroid removal on 12/20. Earliest date I could get. I am also very fearful of any surgery. They wanted to do a hysterectomy stating I’d need it in the future. I just couldn’t say yes at age 37. If I must go back then so be it.

Most people have a positive experience with hysterectomies. There is a really good hysterectomy support group on Facebook run by some amazing moderators. Reddit also has a hysterectomy support group.

I understand your hesitation. I even made a similar post to yours a couple of weeks ago. Feel free to PM me with your fears/thoughts. I’m in the same boat. I have aPL on top of SLE and haven’t been fully controlled for over a year. No one seems too concerned though. I guess I have some time to think it over.

Sending well wishes and hugs your way. ❤️xx

I was just really worried because I have been having so much trouble with blood clots (in my lungs and legs) and this incision she has to do will be like a cesarean, but vertical. I really don’t want to do something that will risk my life. The pulmonary embolisms I had were huge. What if it causes a stroke? I just really over reacting maybe…I don’t know. 🤷‍♀️

I don’t think you’re overreacting at all. I just have aPL without a history of clots and I worry. Sometimes, I feel like I’m overreacting but I’m young and it’s my body.

I think the best you can do is trust in your team of physicians. My surgeon has horrid bedside manner but I’ve watched his real time scope videos and he’s a master at endo excision. I was impressed. He also evicts uteri in record time. I sought out a formal second and informal third opinion to make sure I was doing the right thing because surgeons can sometimes be pushy. If you trust your surgeon and gyn then I’d say there is nothing to worry about. I’d also make sure your gaggle of physicians that treat your clotting and rheum conditions know about this and are on board. Some surgeons will not do due diligence on updating your other physicians.

Something else to ask is does anyone do laparoscopic minimally invasive hysterectomies? This might be less trauma for you and reduce post-op clot risk. Or does everyone do laparotomy (vertical/horizontal incision)?

My gynaecologist is so good. She has reached out to my hematologist, rheumatologist, and pulmonologist and had told me to speak with my pulmonologist to hear what he says and then make the decision. I can’t get laparotomy because the lupus has everything so swollen, she has no choice but to do the big operation. It is really causing me a lot of trouble right now. I have been bleeding non stop since February 10.

Aaaaaaaaw Willow. I’m so sorry. Sounds like you trust in your team and are making the right decision. Sounds like your team has your best interest at hand and has gone over ifs, ands and buts.

Look up strategies to deal with tomophobia. I don’t mind anesthesia. I love those naps. But relinquishing control, maintaining modesty and fear of waking up mangled had me almost say no to surgery altogether. Like I’d rather writhe in pain. I know surgery needs to be done esp as a physician myself. I’ve schedule an extra session with my counselor to talk it over. Our fears may be irrational but not nonsensical.

I think we’ll both be fine but know you have a fellow worrier warrior. Message anytime you want to chat or something. We need all the support we can get. Our situations are complicated as are our feelings.

Thank you so much! It helps to talk with someone else who knows what you are going through. I find lupus is really something you go through alone, as people can’t see what your are feeling. I also work in the medical field, started in the ER, then neonatal ICU, neurological ICU, and now in the ER again. I am usually a pillar of strength to my patients (am an RN), but when it comes to me, I am a chicken. lol I don’t mind going to sleep for the operation. In fact, I have to admit, when I was in the ICU this December for 6 pulmonary embolisms and large dvt, I really was impressed how well dilaudid worked! I loved it! lol You don’t feel anything! I was ready to go home, and they were “no”. 😂

I was thinking the other day if they have someone staff at my hospital can go to for counselling. I would love to speak to someone about my clotting problem and the anxiety it brings. When the embolisms happened, you are discharged and told to come to the ER if you feel anything is off. Then you go home and wait for the other show to drop. It is a mind game. And this whole hysterectomy came out of the blue.

Hi Willow! I had a total hysterectomy in 2012 and had no flares.

Willow7733 profile image
Willow7733 in reply to Lupus008

Oh good! So relieved! I came so close to dying twice since last December due to lupus complications, I don’t want to risk it with this. I am just tired of not knowing what my body wants to throw at me next. 🤷‍♀️

Good luck for the operation sounds well planned prepped and prepared. Wishing you a speedy recovery 🤗

Thank you!

I didn’t have any trouble but I was 31 and I did have to go on the lowest dose of HRT because they removed both of my ovaries at the time. I’m now 47 and just come off HRT.

Willow7733 profile image
Willow7733 in reply to Lisa-2021

They want to leave an ovary because I had really bad DVTs and clots in my lungs, that she says HRT is not an option for me, and I am still too young for entering menopause. I am at the point of “just do whatever because I can’t take it anymore”. lol

Lisa-2021 profile image
Lisa-2021 in reply to Willow7733

I have Antiphospholid Syndrome APS i am on warfarin for life

No advice but just wishing you good luck for the operation Willow. Also wondering whether it might improve lupus symptoms as I know with some if us they can be hormone related? Xx

Oh wouldn’t that be amazing if it does! I have had a hard time since last December. It is like my body hates me. lol

Hello Willow, I wish you well and positive thoughts go out to you ❤🙏 X

Willow7733 profile image
Willow7733 in reply to rosebud52

Thank you so much!

The very best of luck !

Willow7733 profile image
Willow7733 in reply to Harry19

Thank you!

Hi Willow, I have had hip and knee replacement , and breast op . it was scary , but my Lupus stayed in check. you will be fine , you have all your consultants conferring so they know whats the best for you.Try to stay calm and dont stress yourself out....easier said than done I know !!!!!!.

Take care

Willow7733 profile image
Willow7733 in reply to TGSHJ71

Oh wow! I hope you are doing well. Stress is something that I am trying to manage. Not easy, but it helps when I get advice from here and people who know. Thank you. I feel better about it now.

Hi there, I have SLE and APS and had a hysterectomy about 4 years ago.

I was absolutely fine. I was told to stop my immunosuppressant whilst the wound healed over. Mepacrine too as it would interact with the morphine. I started them again after about a week. I was extremely tired and achy but I wouldn’t say that I flared.

Good luck

Good luck Willow. It is scary to have such a large surgery let alone with Lupus in the mix but your gynaecologist seems on the ball and is liaising with other consultants which is very reassuring. Xxx

I am getting really good care so I think you are right. I need to just trust that things will be ok. One day at a time. 😊

Look at how life will be improved for you afterwards. I had mine the day before my 40 th Birthday. I was severely anaemic and in awful pain. Let us know how you are doing xx

Hi Willow, When I had my complete hysterectomy many years ago, I had been dxed for about 9 months and not all right. I had lost 30 some pounds, many other lupus symptoms and probably not the right time for a major surgery. My incision was lateral and all across my stomach. The issue for me was that I did not heal internally and did not know that. I thought that all the pain I was having was me being a baby. So I kept pushing myself to do things. When I went back for a check up, the doctor was surprised that I had not healed. It took forever to heal internally. The best advice I can give is to make sure you are built up enough before the surgery and then take really good care of yourself after. Trust how your body is feeling. It sounds like your doctors are taking everything into consideration and I think you will be all right.

Healing and hopeful hugs.

I plan on taking better care of myself than what I did when I was discharged from the hospital in December. I only took five days off, and was back to working full time. That was a big mistake as I still had the pulmonary embolisms and DVTs. This time I am not going to be able to do that, I know, but I am going to take much better care of myself and let myself heal correctly.

Willow, That is the best thing. We can't know what our bodies will do and neither can the doctors. I will keep you in my thoughts.

Many healing hugs.

I had total hysterectomy & i don't think I had flare, it was long time ago and I've had strokes & tias since then... so my memory isn't good. Blessing your surgery & recovery. I guess my answer doesn't help much. Will this surgery improve quality of life? My periods were awful! Heavy & full of clots! My hormones were on overdrive! I was either crying or really mean & bitchy. My periods lasted long time.... did I mention heavy? I was soaking back to back always overnight pads (that were all the way up the front middle and back of my underwear) in an hour or sometimes less. I could feel the rush of blood flowing down. By the end (before hysterectomy), my clots were fist sized and felt like they were being ripped off...I had cramps that made me cry & double over. So it was a real relief to get it out. (Insurance made me do ablation first, which didn't even slow it down) I felt so good after it healed. (I have so many autoimmune disorders)I take IRON twice a day still! So if you can get it done, if it's bad... I'd do it.

Willow7733 profile image
Willow7733 in reply to Tkt3699

It is bad for me too. My clots are fist size and I go through a super tampon and pad every hour. I have wake up every hour and a half at night to change before there is a mess. It has been like this every day since February 10th! I am so done with this. I am miserable and it is costing me a fortune. Working with this is awful and I have had so many accidents - I now go to work with change of clothes. I want this done and over with.

Usualy the day of surgery you wanna double your steroid dose to compensate for the stress. For major surgery probably even more. When i had tyroid surgery my surgeon had me take 100 mg of prednisone intavenously and i was on 20mg at the time

Willow I just want reiterate that surgery is scary. But that doesn’t mean you have to be Scared. If you are confident with your doctors and know how the aftercare will be

Sometimes they don’t inform you about aftercare enough. My first surgery at 48

Was a 7 hour surgery. Surgeon had to fuse

My neck in the front and the back because

It was so unstable. They actually strap you in and flip the table over to do the back. 🤪

Willow I was scared. But I also was quite at peace with the team, the informative process and aftercare. And the nice long sleep was pretty nice🤷‍♀️🙏🏻😊

I had a total hysterectomy in 2002 no problem what so ever with the lupus, if anything I was better for quite some time probably because I wasn’t bleeding very heavily every month! Only problem I have now is the hormone tablets Drs want me to come off them as been on so long but they keep my mood better and I would hate to go into full blown menopause immediately so I told them I was told I’d be on it for life I know the side effects I want to stay on it! So far so good! All the best for your op, best decision I ever made as far as I’m concerned xx

I amazed that I have yet to hear from anyone who had it, that they regretted it. Which is a comfort. My friends who have had it done tel me it was the best decision. I am so ready to feel better. Thank you for making me less nervous of the lupus side of it all. Looks like this will be a non lupus thing, which is great! Bring it on!

Hi WillowI had a total hysterectomy & removal of fallopian tubes and overies in March, like yourself I was really worried and especially with Covid also, family were not allowed to visit.

I can honestly say I was surprised at my recovery and was not affected by Lupus flares at that time , 6 months later I appear to be having thyroid issues.Howe wr I can say the op and aftercare went well. Just make sure you rest and don't lift anything until you heal. Best wishes and you'll be fine 🙂 we Lupies have got this 👍 love Lynne x

That is great to hear! So glad it went well for you. Sorry about the thyroid problems.

Hi Willow I had this op some years back and it did not effect my lupus

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