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menstruation/periods making symptoms worse... is a hysterectomy the answer?

Discussion in 'General Treatment' started by EnduringAngel, Feb 6, 2013.

  1. EnduringAngel

    EnduringAngel

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    Like many people with M.E. and POTS I find that my symptoms are worse around the time of my period.
    I used to have the implant but had it removed after reading it can affect your immune system, I also didn't like the idea of messing around too much with my body's natural hormones.
    After being ill for so long (am now 30) I realise it's unlikely I would ever have children. Having EDS3 means it could be passed on and I know there are genetic links to M.E. so I feel it would be cruel to have children.
    But am wondering if a hysterectomy would help or would it make me worse?
    Would love to hear your views esp from anyone who has had one.
    Am not great at biology etc, so how would it affect my body, would I need to take HRT and what is it for anyway?

    A x
     
  2. Ema

    Ema Senior Member

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    I think it is likely that you would exchange one set of problems for another.

    There are some good forums out there for women who have had hysterectomies (hystersisters.com comes to mind) and it might be a good idea to read around a bit to get some idea of what other women have experienced from those who have been through it.

    As far as HRT, I think it depends on whether or not you have your ovaries removed along with your uterus as well as the state of your adrenals (since they also play a role in sex hormone levels). I would imagine you would need some form of HRT to keep your bones and heart in good shape from the lack of estrogen.

    Have you had sex hormone testing and tried any forms of HRT (hormonal or herbal) now to balance your hormone levels? Personally, I think I would go a long way down that road first before making any irreversible decisions.

    Ema
     
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  3. peggy-sue

    peggy-sue

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    I've not had a hysterectomy, but I went through the change at ages 40-48. (I called it Climate Eric. ;) well - you get major storms called Typhoon Henry etc.)

    I became ill about half-way through that. My periods were erratic and I can't really remember too much how PMT affected my ME - I was still learning about my ME. It all got a bit confused!

    I didn't bother with HRT. I don't like artificial hormones and all HRT does is put the inevitable off. If you've got hot flushes etc, it can stop them - but you will get withdrawal hot flushes when you stop taking it.

    I did take some plant phytooestrogens for a short while, they made my hot flushes merely warm - but they made me put a lot of weight on.

    Not everybody has a bad time with the change, though.:)

    You do need to "up" your calcium (and also vit D) intake, to protect your bones.

    All I can say about now, being over it, is just wonderful. :balloons:
    I've ditched "that" collection of grotty once-white knickers you need to keep for the duration of a bleed - so you can spot when you're about start, or are having an "accident". :thumbsup:

    I don't have mood swings, I don't get boob pain, I don't get bloating. I don't get irritable and irritated.
    I finally feel like I'm a human being.
    I love being freed from the tyranny of my breeding equipment.

    I don't have children myself - there is nothing at all wrong with choosing to be child-free - particularly if you know you have a genetic susceptibility to troubles.
    I've got alcoholism in my genes, I wouldn't give that to anybody.
     
  4. caledonia

    caledonia

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    You might simply be deficient in essential fatty acids. I get a lot of benefit for PMS and menstrual pain from fish oil. You may need high dose pharmaceutical grade fish oil to get the most benefit. I take Sears Omega Rx brand (Sears as in Barry Sears of the Zone Diet, not the store). I've tried other brands, but this is the best. You may also need GLA or other EFAs.

    But don't go supplementing with EFAs willy nilly, as you can inadvertently make things worse. Since this is your year of research, get a copy of The Zone by Barry Sears (his very first book). It will explain all about eicosanoids, your body's natural painkillers and how to work with diet and EFA supplementation to turn them on.
     
  5. Valentijn

    Valentijn Activity Level: 3

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    An unnecessary hysterectomy is a very extreme procedure. Usually hysterectomies are done to correct medical problems when all other options fail. Getting an early hysterectomy also vastly increases the risks of cardiovascular disease due to losing your estrogen. It's also a lot harder on the system than naturally going into menopause, where there is a gradual decrease in the affected hormones and some ability to produce them remains.

    Speaking from personal experience, an elective hysterectomy on my ex-step-aunt sent her completely off the deep end, and she eventually succeeded in committing suicide after several failed attempts.

    If your symptoms are strongly associated with your menstrual cycle, I'd suggest that is a good place to start testing - hormone levels, etc. Removing a major body organ should be reserved for a measure of last resort and only in a very serious situation.
     
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  6. Sasha

    Sasha Fine, thank you

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    If it's an issue of heavy bleeding, there are drugs you can take to reduce it, such as tranexamic acid. You could ask the Well Woman clinic at your GP's about it, if you haven't already.

    POTS can be a blood volume issue in some cases - I don't know if heavy menstrual bleeding might make it worse.
     
  7. EnduringAngel

    EnduringAngel

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    Thanks Ema, I think like many people with M.E. I have hormone issues. My adrenals aren't good, so I take low dose hydrocortisone and also levothryoxine for my thyroid, am thinking of adding T3 maybe as my hypothyroidism still seems to be an issue.

    It's not that I don't want kids, I just think it would be wrong for me to have them.
    LOL at climate eric! am glad that one day I will be period free even if I keep my womb.
    Given than people with ME have a reduced life span, many people I know with ME go through 'the change' very early in life.When it does happen to me, I think I'd rather not take HRT.
     
  8. EnduringAngel

    EnduringAngel

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    I take something called VEGEPA http://www.vegepa.com which seemed to help my brain and lymphatics a bit.It's expensive but meant to be good for people with ME.
     
  9. peggy-sue

    peggy-sue

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    I take vegepa too - that's got a load of evening primrose in it as well as the EPA, that should have helped with Auntie Flo's troubles!

    I've been through alcoholic anorexia (as well as the actual boozing) and I don't have kids - these are things which are most likely to be at the root of my early change - and I started bleeding very young too, 11.

    I reckon if there is a god (which I don't) there could be no doubt at all he is a man.
    A woman wouldn't have put us through all this ghastly stuff, she'd have found a much better way.

    (I kind of like how kangaroos do it - so much better than "Alien".)
     
  10. EnduringAngel

    EnduringAngel

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    Thanks for that, I thought it may make things worse, and appreciate you explaining.
    Am sorry to hear about your aunt, my aunt committed suicide too, a horrible thing to happen.
    Do you think it was the hormones that caused it or the mental anguish of having a hysterectomy?

    I know my thyroid isn't working great and I also often have EBV like many people with ME do.
    It's not an issue so much of the bleeding sasha, more viral type symptoms worsening, swollen lymphs etc, I do also get diarrhea when I'm on my period but this is a nice change from my usual constipation.
    Apparently a lot of women get diarrhea when they are on, I don't know why though.
    Also my POTS gets worse, but I have a consult soon about the POTS so I can ask them about it.


    Thanks ladies I really appreciate your help on such a personal issue.
    Last thing I want to do is put my body through something as traumatic as an operation.
    Am trying to find anything that will help, but I wouldn't want to risk getting worse.

    Given my recent symptoms of irregular period and premature going grey, maybe my menopause will come early.
    Am looking forward to not having to 'surf the crimson tide'!!

    A x
     
  11. Sasha

    Sasha Fine, thank you

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    That alone is good reason to get checked out by your GP/Well Woman clinic, just to be on the safe side.
     
  12. EnduringAngel

    EnduringAngel

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    I started my period at 11 too, the NHS in this country give out free condoms, I wish they'd give out free tampons instead, would save me heaps of money!
     
  13. EnduringAngel

    EnduringAngel

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    Thanks sasha, I need to book a smear tomorrow as am well overdue one, so I will def speak to them asap about it.
    I actually was prompted to go for a smear asap after reading an article with an ME researcher, I think it could have been an interview with klimas where she said people with ME are much more likely to get ovarian cancer, so I will be passing on that knowledge to all my ME friends.
     
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  14. peggy-sue

    peggy-sue

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    oooh, now you're just making me remember thatcher the snatcher - who put high rate VAT on tampons as luxury items.

    ("female prime minister" my arse. she's not even human)
     
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  15. Sasha

    Sasha Fine, thank you

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    Don't worry too much - it's just a good idea to check out any changes, though! :)
     
  16. Dreambirdie

    Dreambirdie work in progress

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    Before jumping into removing organs from your body:eek::eek::eek: , I would seriously investigate your hormone levels and consider taking bio-identical hormones. I've often read that excessive bleeding can be a sign of estrogen dominance. If you google that, you should find a lot of info about it.

    Below is the link for the lab test I use to test my hormone tests. They test saliva for estrogen, progesterone, testosterone, DHEA and 4 cortisol levels--at various times of day, and test blood spots (from a finger prick) for thyroid (free T3, free T4, TSH and TPO). If you join the CANARY CLUB, you can get the same tests at a discount. I am not sure if this test is available for Europeans? But maybe there is some equivalent.

    ZRT COMPREHENSIVE FEMALE PROFILE: https://store.zrtlab.com/index.php?...uct_id=27&virtuemart_category_id=9&Itemid=597

    CANARY CLUB: http://www.canaryclub.org/
     
  17. Valentijn

    Valentijn Activity Level: 3

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    There was no anguish - she wanted the hysterectomy, and had to go to several doctors to find one willing to perform one, since she didn't need it at all. There probably was some instability prior to that (she was a bit obsessed with staying in shape, looking good, parents had been dysfunctional, etc), but was completely functional living by herself, working full-time, taking care of a dog, etc.

    The change after the hysterectomy was drastic. In some ways she was acting very manipulative in a transparent and child-like way, and she was very emotional most of the time. She also had strong opinions about not taking pills, so no hormone replacement, etc, and wouldn't stay on psychiatric meds either after the first suicide attempt (train).

    Hence I think it's important to keep in mind that a hysterectomy is viewed for good reason as a last ditch effort, usually to save a life or prevent constant pain, etc. Absolutely everything else should be tried first, such as seeing if there is a hormonal or other period-related biochemical change that can be treated. And even if the hysterectomy is the only option left, that's going to entail being on hormone replacement therapy, etc. So it's not a simple fix, and is really just creating more issues to deal with.
     
  18. Ema

    Ema Senior Member

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    There is a BIG difference between replacing your lost hormones with bioidentical hormones and taking artificial replacements.

    The former will preserve the beneficial effects of your hormones on your bones and heart and contribute to longevity and vitality while the artificial replacements do not and can increase the risks of cancer.

    Don't throw the baby out with the bathwater...just make sure to take bioidentical estrogen and progesterone. There are tons of options these days.

    Ema
     
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  19. Dreambirdie

    Dreambirdie work in progress

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    What she said!
     
  20. taniaaust1

    taniaaust1

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    As far as ME goes.. I think it can go either way with menopause. Ive heard some say they get worst while others say things for them improved. There is no way to know how you will be when that happens before it actually happens.

    As far as hysterectomy goes... that is surgery and its a well known fact that operations can for some cause worst ME due to the trauma the body goes throu and the anestheia can really affect some very badly with ME. So its another dice roll how you will come out of that surgery and if it causes a big crash or not.

    I was in your boat for a few years.. considering if I should have a hysterectomy or not. Two different doctors recommended to me that I do as I get severe (life threatening) symptoms at times (PMDD) due to my period about to happen. In the end Ive choosen not to do it as there was just too many "unknowns" around it all for me with the ME and other things (thou it would of fixed the PMDD and my occassional suicide attempts triggered off by it) . Fortunately looks as if I did make the right decision as my PMDD has majorly improved since I was put on a special diet for my insulin issues (thou PMDD still a bit of an issue but not most months any more).

    My thought is to try to find another doctor who will investigate what is reacting and causing you more viral symptoms at that time of the month. You probably have some coexisting viral thing going on which needs to be found and sorted out.

    I get diarrhea too at my period at times (thou constipation the rest of the time of the month).. That time of the month has a tendancy to trigger off IBS more. I have constipation predominant IBS. You could have the same issue. Fibre was recommended to me to take to help balance out this...
    ...........................

    As far as your irregular periods... the possibility of polycystic ovary syndrome (PCOS) should be considered and ruled in or out. If you havent had it done already.. you should have an ultrasound done on your ovaries to see if they are polycystic. Those who have PCOS tend to get other problems with it too.. not just irregular (or missing) periods... over 90% of those who have PCOS get diabetes or insulin resistance (hyperinsulinemia) before they are 40 years of age. One thing I can say cause i have both those issues..is I know that the female cycle also affects how body is responding to insulin and the insulin.. and suspect I think it may be higher just before the period due to the insulin reaction I was getting with my PMDD (or around that time.. I havent researched this enough but i have read our female cycles affect it).

    I mention this to you as Ive noticed my insulin raising more hits my immune system.. and my hyperinsulinemia will give me sore throats and make my immune system run down some. If you do have PCOS (its very common).. you could be having a similar thing going on and hence why the viral symptoms are coming up at that time they are.

    So my recommendations due to your irregular periods are get an ultrasound to make sure your ovaries arent polycystic. If they are. you are very likely to have PCOS but bee aware cause you have ME.. it clashes with the symptoms and diagnostic criteria of PCOS so doctors may then get confused at that point and miss giving a PCOS diagnoses due to your hormones.. eg in PCOS part of the normal diagnostic criteria (once the ultrasound has shown polycystic ovaries) is a certain hormone being too high, in ME thou, the ME lowers the hormones used for the PCOS diagnoses eg testosterone. (I used to have high testosterone.. typical PCOS stuff..but now have basically nil due to the ME). If you do have polycystic ovaries.. then you definately need to get a 2 hr GTT test done WITH the insulin included. To find out if you have the insulin issues happening yet or not... it may be the trigger (along with whatever coexisting virus you probably have) of your viral symptoms at that time of the month.
     
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