Hi Everyone- you know how it is with RA- things settle down (for a bit anyway) and then something comes back again to bite us in the bum!!
I've had RA for about ten years (I'm 65 years young now) ,done mostly okay ( i think) during that time but my then husband died and i started to really REALLY flare about a year or so again, with very high ESR/CRP.
Nothing would bring it under control so i'm now on the biolgic Amgevita. It's sort of working as my CRP is under 1 now but my ESR still floating around 21. (My usual ESR was always about 7 )
Then out of the blue a little bleeding (tiny amount- like water really) pushed me to fast track a routine Transvaginal Ultra Sound which picked up thickening of the endometrium- not the best news. So if it is anything sinister (and the bleeding after menopuase no matter how light is not a good symptom) i want everything whipped out so my questions are as follows:
1) Anyone had a hysterectomy with RA- is there a better type of hysterectomy to opt for with lower risks- ie Key hole/ Laporoscopy?
2) Do i need to stop the Biolgics before the op? And when can i resume them? And if i flare during this time what happens?
I have read having RA and having a Hysterectomy is not good news at all and serious complications can arise so i just wanted to know of any RA warriors out there who can inject some positivity into me, any tips to prepare me before and after!
Thanks lots x
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magical1234
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I sailed through a laprascopic full hysterectomy with RA. How long you stop drug before and after depends on drug and rheumy advice. Only your surgeon will know best procedure for you as much depends on why you are having g it. A friend had it vaginally. That’s the least invasive but not always appropriate.
Not speaking from experience but years ago I knew someone having one and she took arnica before it for a few weeks then after.Apparently this really helped with the pain.
Morning, I was diagnosed with RA 8 years ago and underwent a full hysterectomy, vaginally with an epidural. My recovery was very good and like you I was very apprehensive about flaring whilst pausing my methotrexate injections and my biological injections. I think I missed two biological injections and 4 methotrexate (I was guided by the nurses in the rheumatology team)
I found I didn’t flare and it almost felt like my body knew it needed to repair somewhere else so gave my RA a break 🤔😂 (It was probably still my meds in my system though !!)
I wish you well for your operation and remember your medical teams are there to support you if you have any questions or queries. Take care 😊
Thank you, following on what Jackie replied I found during my pre ops on previous operations they couldn’t advise on my RA Meds only the procedure of the op in question and recovery.Hope this helps 😊
As with any surgery or in my experience you have a pre op appointment at the hospital for all surgery regardless of what it is. There you would get instructions on your meds . Also the procedure of the op.
ye I will be going through same procedure plus rectal repair after May( I have a holiday booked then so don’t want to miss it plus waiting time will be long anyway ) I have numerous health conditions on loads of meds plus warfarin n biologic. I have my pre assessment on Tuesday and to be honest am terrified of having operation so we will be together on this journey.At pre assessment they will tell you everything and you can ask too. Good luck.keep us updayed
I had a total hysterectomy and oopherectomy with no illeffects they just stopped my rheumy drugs for 48 hrs prior and post op and had no ill effects if you are on any blood thinners you need to stop 7 days prior any op . Good luck hope all goes well
Well, I shall be of no use at all, I’m afraid. But I do hope you receive some encouragement from other posters. We are a varied lot, so surely others have some experience of your issues. I can only say I wish you the best of luck throughout this recent hiccup - and I’m sure there is plenty of good advice out there winging its way to you.
Hi. I’m 53 and had a total abdominal hysterectomy last July. Was told not to stop my RA meds but I’m on methotrexate not biologics.
Happy to say that the RA behaved and was not a problem throughout the whole thing and I had an uneventful recovery. I had initially put off having the surgery as I was worried about any after effects but I’m so glad I had it done and would thoroughly recommend going for it- it’s liberating to be rid of my uterus to be honest!
I have a neat scar following the lines of the skin on my lower abdomen. I wasn't suitable for key hole surgery as the uterus was enlarged and they wanted a good look around anyway. I was off work for eight weeks - and regretted going back quickly (I was told 12 weeks then) as I still felt very easily tired (but had got very anaemic from excess blood loss before the hysterectomy). The histology showed no cancer which was a relief too ( although I hadn't realised that I was worried about that until I wasn't!)
I wasn't on biologics at the time but you need to find out when to stop and restart them.
I would advise against it. I had hysterectomy 15 years ago and was left with damage to my hip and abdomen. I contracted sepsis and nearly died in hospital. A damage blood vessel and Malrotated bowels. All I had to find out in my records none of the doctors told me. I had to seek second opinion from another hospital. I’m still living with the consequences of the hysterectomy.
I left hospital with massive inflammation problems. ESR and CPR off the roof. Diagnosed with reactive arthritis after hysterectomy surgery and fibromyalgia.
I regret being talked into surgery by the surgeon.
I have had a hysterectomy in 2021. I had the abdominal one (the cut was from hip to hip like a cecarian). I did ok, no major flare that I can remember, but we are all different. I had an added risk because I have been having trouble with multiple blood clots/pulmonary embolisms (due to APS). It hurt a lot, not going to lie, but I am so happy I had it done.
I live alone, so I was really organized. I made my bed on the living room sofa (my bedrooms are on the second floor, made pre cooked meals so I didn't have to stand too long in the kitchen, had snacks and water at the sofa/bed with everything I needed.
It is important to move. It may hurt a bit, but for the surgery and your RA, moving is important. Keep well hydrated. In two weeks I felt so much better. I am happy I had it done.
Hi Willow- those tips are so helpful- i live alone too and not a 'spring chicken' either i might add but being prepared and making home as safe and easy as poss to move around is a really good thumbs up- thank you x
Also, I forgot to add, I looked on YouTube and saw videos on people who have had the same hysterectomy as I was going to have, and they had such helpful tips! Even how to get up out of bed the proper way. I had nobody at home to help me should I need to go to the bathroom, or fix something to eat.
Hi Rheumatology will tell you when and how long for to pause meds. The pre op nurse I had didn’t know about rheumy meds. I did flare before op and did phone the pre op nurse who said I could take Naproxen until so many days before op (knee replacement) which was brilliant for me. This obviously isn’t medical advice as many people can’t take Naproxen. It’s just my experience. Good luck with everything 💕💕 xx
Some years back I had major surgery, womb and ovaries removed with a vertical cut from tummy button down, due to size of non malignant tumour. 6 days in hospital and 12 weeks off work. I advise listening carefully to the advice given by your consultant surgeon. We are all very different and need different surgical procedures. Also we all have different time and pace of recovery. Be prepared to feel absolutely weak and exhausted for the first couple of weeks.
I live on my own, prepared well for the first couple of weeks ensuring a stock of frozen meals etc. and someone to do any essential house work. Pain wasn’t an issue, ensuring that you don’t overdo it in the early stages of recovery is very important.
Your surgeon knows best follow their advice. “Do as you are told” was the best advice I was given in terms of my post surgery recovery as I can be a bit stubborn and independent. I listened and made a good recovery free of complications.
Some excellent tips given….a few more but firstly, if you’re having a general anaesthetic, it’s your anaesthetist’s/surgeon’s prerogative which medication you discontinue (or not), however they will usually (ask) defer to your Rheumy Consultant.
You’ll want to be avoiding stretching/bending too much and before your physio says it’s ok so you might like to take extra notice of everyday tasks in order to add more to your prep list…..hair washing; maybe have a friend/family in to do it for you…..organise crockery/cutlery (only basics) on work surface……ask at pre-op about underwear etc….clothes laid out on spare bed/table top….grab tool handy….
Best wishes…..enjoy those delicious ready meals …treat yourself.
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