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Hysterectomy and Fibromyalgia

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Got fibromyalgia before needing a hysterectomy and before full menopause, did you have your Ovaries removed at all?
Yes had ovaries removed at same time and been better since their removal
yes had them removed same time, but now feel worse than before
No not at same time, but had to later cause didn't ease the FMS flares due to the hormonal fluctuations which affect FMS anyway
No not had ovaries removed and feel no better or am worse than did before the hysterectomy
No not had Ovaries removed and feel better than did before hysterectomy
No not had them removed, but am waiting for them to be removed now, or considering asking to get them removed cause hormonal fluctuation symptoms have not improved or gotten worse.
waiting for hysterectomy to be done and been told you'll be keeping your ovaries.
waiting for hysterectomy to be done and been told you need them removed cause of your FMS still being affected by leaving them in
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Total Votes : 1
Hello

I'm Almost 40 and require a hysterectomy, I've had very severe fibromyalgia (FMS) for well over 10yrs, which at time of my monthly bleed flares up badly, the worse and prolonged the cycle the worse and prolonged the flare, sometimes leaving me stuck in bed for days and I can retain up to half a stone of fluid, bloat out, get worse than my normal FMS pains in the abdomen, pain in the groin, and in my legs its a dragging heavy legs like they're made of lead feeling, it was suggested to me by a sn nurse that it was likely from ovarian pains (likely due to trigger points normal in FMS) causing referred pain to the groin and legs.

I'm going though the menopause and it was suggested I have been for well over 5 years, I get the usual hot flashes, night sweats, heart palps, and so on..

My monthly cycle has been very wayward length wise, heaviness and pain severe since it began in my teens, more recently last 2 years, its gotten a lot worse with month long flooding, the break through bleeding with clots (when not due on) with little/no warning its going to happen, very embarrassing if it shows through my clothing! Despite many years of trying umpteen hormone treatments, with a scan suggests my ovaries appear healthy. however for a short time one Pill did help lessen flow and keep it more to just the pill break week, but after an RTA where the soft bit above my pubic bone impacted hard in a downward motion on a hard metal frame and ever since then I've had all these really bad perimenopause symptoms, worse than ever before, also last 2 years in particular, my FMS is flared up more often by the increased off of sync bleeds, break through... Which doesn't figure for FMS alone..

I have missed cycles this year in between very heavy prolonged bleeds, when I have an early start cycle the FMS flares wildly too very much in response to bleed times, be they break through or actual due week, its really messing with my quality of life, partly cause I'm way too exhausted and elevated pain levels, partly due to if I'm out and I suddenly can look like I have just come out the Gym after a particular heavy workout, soaked armpits, soaked back, groin (if wearing thin trousers can appear like I wet myself and if sat on a plastic seat, I regularly leave a damp line on the seat, as if sat in wet/damp clothing, if that's not embarrassing enough, then their is the sudden flooding. The flushes are all cycle round now, were as previous to this increase it as 90% when actually in monthly cycle phase.

I'm not anaemic, have a pretty healthy diet, lots of fresh (over half is home grown organic) fruit and veg.

I understand already that FMS is affected badly by the wildly fluctuating hormones caused by menstrual cycle and perimenopause. however oddly or maybe not oddly during the months I have missed a cycle or 2, all the symptoms are lessened, the wild swings and major FMS flares and even the sweating and flushing are at a minimum at these times, however I know exactly when I'm going to have a bleed in the next day or 2, even if it isn't due for a week or 2 say, cause I start with feel very out of sorts, start retaining fluid and so on, plus the FMS flares, and sure enough I start early if the symptoms kick in early, so it can't be psychological, in thinking 'oh I'm due in a couple of days I feel rough!' cause I'm not expecting it if it decides to arrive weeks before due the pill break and have felt ok the day/s before.

So my Questions are: Although I am not quite 40 yet, should I consider having my ovaries removed or ask to keep them and see if just removal of the uterus will also stop the wild hormonal fluctuations, obviously it will get rid of the monthly bleeding and cramps, but will keeping my ovaries get rid of the wild hormonal fluctuations and therefore the FMS flaring? or are they likely to stay the same or even get worse?

I'm I wishing too much that keeping my ovaries for the sake of risk to my bones, heart etc.. will ease up these wild hormonal fluctuations causing the bad to severe FMS flare ups? I was wondering if it went "if I suffer worse FMS when I'm actually bleeding, if I'm not actually bleeding any more, once the uterus is removed but having Ovaries left in, will I be free/freer from these hormonal fluctuations that flare the FMS up and therefore have a better quality of life back? Or will it make no difference to having your womb there or gone, if your ovaries are still there, the wild hormonal fluctuations will still happen until full proper menopause?

Or if I lose my ovaries same time as my uterus, so won't have those up and down fluctuations from my ovaries - perimenopause related, is there a chance that as with the missed cycle months, my fibromyalgia is greatly improved as is my quality of life, or are these missed cycles and improvement in FMS and quality of life nothing to do with what my full menopause might be like?

So from what I have written, what do you feel might be the best option for me to accept, to have the ovaries removed or ask to keep them and see if it helps and if not get them removed at a later date??

Which ever you suggest, is their a possible chance you point me to some medical websites or send to my in box any related articles, so I can take to my gynae, so show him any medical reports and research as to why I ought to keep them or have them removed.

Be most grateful for any suggestions/advise before go ahead with the op and wished I agreed to have them removed or kept them.

thanks Crystal
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replied July 20th, 2008
Active User, very eHealthy
Welcome to e-health
I have had fibromyalgia for quite a few years as well. Had a full hysterectomy with ovaries removed almost seven months ago.
My experience is menopause symptoms. I have hot flashes and dryness. I find the symptoms mild. Before I had a lot of bloating. My concern was possible cancer for me, more so than the fibro. I also have kidney disease so I can't say I notice any difference myself. I use Black Cohosh for the symptoms as well as drinking lots of soy products.
I never actually found that much information on the web. I think that everybody reacts differently to menopause. They say the symptoms are more severe when it is surgical, as opposed to naturally occurring. Sorry I am not much help. I hope everything turns out well for you. Good luck.
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replied July 21st, 2008
Thanks Aflsh

There is suffer on the web, but you have to be a Dr to get to it, or pay so much per article and I thought well if i found the overall content not quire what i was looking for, then it would be money I hadn't really got in first place wasted. but with Fibro I found that peoples first hand experiences of the condition, can speak volumes, more so on the proper association type websites or site dedicated to that type of condition, with research info... I found stuff on hysterectomy and fibromyalgia, but using other keywords as well, most just snippets, but also links or research info to other results, which might not rate high on the search engines listings.

I found an article in a FMS website that is on about estrogens, saying FMS symptoms much worse before period with hot flashes and sweats, aches and so on (something i have suffered pre even a FMS dx! also says a trial of "Natural" estrogen like soya is better than the Premarin or other synthetic ones for FMS and CFS patients and also says on this fibromyalgia site "A hysterectomy, even with the ovaries left in, that the ovaries will cause low estrogen within two years, based on work done by a Dr Philip Sarrel at Yale Uni."

I'm already in the perimenopause and suffering badly, with the hormonal swings obviously reduced estrogen then, so going to get it lowered within 2 years according to that research if they are left in anyway, so will likely have to have ovaries removed anyway if not gone into menopause by then, cause for FMS reports research about hysterectomies and many having to go back and have their ovaries removed at a later date to stop the hormonal swings, ovulation pains and so on anyway. my argument is save me all that and take them at same time and then put me on a dose of natural replacement which is kinder to FMS patients and without ovaries swinging in highs and lows, body should take a daily set dose and not have the dose go up and down cause the ovaries are adding or lowing what's in my system still causing the hormonal swings and the symptoms.

oddly or not, seems to be a common comment in FMS, I mentioned one mid week part of my cycle that I had groin pains and it was more to my left this time and last time more to my right, ie knew which side I was ovulating from! others said they had noticed the same, I mentioned I knew which side of lining was stripping too, cause the pain and cramps where more intense, one place or another during the cycle. FMS elevated pain levels related or common to all women not just those with pain conditions?
Wonder if ladies already in a bad perimenopause had just as bad a time of it as those not in perimenopause at time of their op, surgically related..
sometimes peoples experience is also down to what other conditions they have too and what part having those play, like you with your kidney disease.

Well thanks for reply and well wishes
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