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  • Lupus and Fibroids

    Hello ,

    I have recently been told that i have a large Fibroid that is growing into the membranes in my uterus and protruding towards my bowel , resulting in no other alternative but to have a total Hysterectomy. I am only 34yrs but very thankful that were blessed with a little boy despite 10 miscarriages .

    I was wondering if the fibroid could be Lupus related and more aggressive due to auto immune disease? I have suffered with gynie problems since puberty . I just wondered if any of you ladies have any opinions on this .

    Thank you
    Lucy xx

  • #2
    Hi Lucy!

    I think lots of women on this board have reported such problems (I have one small one on an ovary), though I have loads of friends without lupus who have them too. So, it's hard to say.

    I am so sorry that you have to consider a total hysterectomy because of this. Do you feel you are done having children? Miscarriages are so hard too--:hug:.

    I'll be curious to see what others say.

    Monica

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    • #3
      A fast growing fibroid was the main cause for my hysterectomy. The doctor didn't feel it was related to Lupus. The other inflammation I had she did attribute to Lupus since it was almost always present for no apparent reason.

      When is your surgery?

      Take care,
      Lazylegs

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      • #4
        Hello Lupy lulu

        I have 3 fibroids and am oestrogen inbalanced in my womb.
        that seems very drastic.....considering amount different operations available which i been told of by gynae.........yours being last option........
        usally its myomectomy first.

        they wont remove mine due to trying for child....
        i also have endometriois..............which is linked to auto immune problems.not been told mine are linked to me having lupus..

        i also like you always had gynae probllems for me i inheirted that...........

        you must be so uncomfy with such sized fibroid mine are only pea to potatoe sized,i was offered major surgery got 2nd opnion tunred out surgery for me not needed yet......so sorry hear you had so many miscarriages do you have APS aswell.....

        hugs good luck for surgery.
        countrylass

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        • #5
          I had 8 fibroids removed in June 09, was dx'd with lupus in August. 3 fibroids were left which were embolised in Jan 10-I flared after that as the radiologist didn't see a need for a steroid shot and I was naive enough to believe he was an expert. The embolisation worked on 2 of the fibroids but didnt on the biggest, which was retro-peritoneal (pushing on my bowel, bladder and some important veins/arteries) and I was very ill afterwards. I had an attempted myomectomy in Sept 10-they opened me up, did a biopsy and confirmed it wasn't malignant but said it was too tricky to remove without hysterectomy, I had spoken to the surgeon just before surgery and stressed I didnt want a hyster unless it was malignant and a life or death situation.
          Had steroid shot with general anaesthetic and no flare afterwards, despite the stress of the biopsy results waiting peroid. Had it finally removed in Jan 10 and had the steroid shot again and thankfully no huge flare. If a gynae is recommending hysterectomy for a benign fibroid its usually because they are not skilled enough to remove it, please try to find another gynae who specialises in myomectomy-fertility experts are a good starting point as if they cant do it themselves they will usually know of a surgeon who can.

          I asked the rheuma if the fibroid was connected to the lupus actvitiy and he said "maybe". My GP was convinced the embolisation would have affected it as the fibroid blood supply is blocked and it breaks down and is absorbed by the body. If I knew then what I know about lupus now I would never have had that procedure done and would have went straight to surgery. Its very difficult to get a gynae who knows about lupus, mostl doctors are locked in their own little specialisms. The interventional radiologist who did my emoblisation told me he had done the procedure on loads of women with lupus and they were fine-this I discovered afterwards was utter tosh. I'll probably never conceive but that wasn't the only reason I wanted to keep my uterus-HRT is complicated with lupus and steroids mean I'm vulnerable to osteoporosis anyway. My philosophy is if you're born with an organ and its not malignant then keep it as long as you can.

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          • #6
            You Can have a hysterectomy and retain your ovaries. Removal of the ovaries is what brings on menopause (or their disinclination to function). HRT is generally contraindicated in Al diseases, at which point you have to learn to live with hot flashes, should you be so unlucky. But that's down the road for you. Hysterectomy is usually less invasive than it used to be--and..no more periods is a plus!

            l doubt that there's any connection between Al diseases and gyno problems. The luck of the draw and possibly geneology!

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            • #7
              I'm 30 years old, and I had a hysterectomy last year for fibroids, excessive bleeding, and other related issues. Sure, they could have removed the fibroids, but chances are they'd come back, so I decided to go for it. They removed my uterus but left both of my ovaries, so no menopause. And can I just say... BEST. DECISION. EVER.

              Yes, the surgery caused a flare-up. However, between that flare up and the rheumatoid nodule they found, my rheumatologist finally decided that I definitely have a connective tissue disease and started me on plaquenil. So, in the end, it was a great deal. No more monthly pain, no more anaemia, no more fibroids pressing on my bladder and twisting (I had one that was on a sort of "stalk" that could twist), finally on plaquenil which seems to be keeping a lot of my symptoms under much better control, and my hormones seems to be better, too.

              I know it seems like a huge ordeal, but fibroids will continue to torment you and get rapidly bigger, and trust me... that's no fun. Look over all your options. If you decide to delay it and try for another kid, that's your choice, too. Don't let them pressure you into it, but don't be afraid of it either. It helped me a lot.

              Good luck.

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              • #8
                Hi like noughts and crosses,
                A few years ago I had small fibroids removed, no problem then I had a cyst on my ovary whilst they were doing the pre op check they found a tumor on myother ovary. I had both my ovaries removed almost three weeks ago. I am much older than you (58) so it was not a question of more children. The tumor was non cancerous, I am very very lucky. I have always, but always had gyno problems from being a teenager. SoI can't say if it was all related to Lupus (had Lupus about 23 yrs). I now feel fantastic, can't believe I had it done ,other than my stomache looking like noughts and crosses ,you wouldn't know. I also have to say I no longer have a back ache that traveled down my leg!!! If you still wish to have more children maybe 2nd opinions would help you.
                I wish you all the best
                Marika

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