Quit taking my estrogen...&

Discussion in 'Fibromyalgia Main Forum' started by karen_dean, Aug 24, 2005.

  1. karen_dean

    karen_dean New Member

    just needed to find out if any one else has taken estrogen and decided against it, and if so have you had any adverse effects or body changes. I guit taking mine around two weeks ago.

    P.S. Have been taking it for 13 yrs. since my hestrocectomy <<<<(SP)

    Would appreciate any feedback.

    Thanks alot

    [This Message was Edited on 08/26/2005]
  2. fivesue

    fivesue New Member

    I took estrogen for about 8 years. I had a partial histerectomy when I was 40, so my ovaries just kept pumping out the hormone...until menopause! AAGH!

    I just stopped this year as it didn't seem to be doing any good. I have some hot flashes, but very irregular and not really tied to the hormone as I have had them with.

    I started again once this last year because I thought estrogen might help with the pain of FM...read something somewhere. It didn't.

    So, I don't know your age or what other things happen, but it has not been a big deal for me. I do worry a bit about osteoporisis as my mother has it, but I am fine at this point. Have you considered that part of it?

    Best wishes!
  3. harrysmom

    harrysmom Member

    Dear Karen,
    I have had CFS for 9 years. I had a complete hysterectomy in 1991 due to endometriosis and the fact that both my mother and her mother died of ovarian cancer. I took estrogen replacement for about 12 years. A year and a half ago I tapered off and then stopped taking any. At first it was horrible - hot flashes and sweats all night and day. After about a year or so it started becoming more managable and now I get very hot about once or twice a night with little sweating and daytime is not bad at all. Don't notice any other side effects from quitting.
    Good luck.
  4. nanswajo

    nanswajo New Member

    Hi Karen: I have taken estrogen since a hysterectomy in my late 30's. I'm now in my 50's I stopped a year ago in April and did have trouble with sweats etc. What happened for me as my rheumetologist told me is that stopping probably triggered more pain. He said it can make arthritis pain worse--I don't know why.

    It definitely had a negative effect on me being off and it was worth it, despite the studies, to go back on again, but it wasn't magic.

    The Dr. told me he didn't know if going back on would reverse what had been done by so suddenly going off. If it had been up to him he would not have recommended me going off, especially since I was taking only estrogen and the studies had been done on the combination formula for women who still have a uterus.

    Oh well. But, I am back on and in some ways do feel better. I use a "Vivelle Dot" patch at the lowest dose and it is naturally derived estrogen (not from horses, though!) I like it.

    I have a history of osteoprosis in my family, too, so it is another reason for me to keep it up. At this point I don't care what the studies show--I'm staying on it, but everyone has their own important issues to consider. It just happens to be right for me now.

    Hope this gives you some useful info and is not discouraging in any way!

  5. elsa

    elsa New Member

    Hi Karen,

    I am taking bio-identical progesterone and DHEA w/ pregnenolone, but not estrogen. My doctor and I believe I am estrogen dominant, but I will still do a salivia test soon to confirm it.

    You didn't mention whether your estrogen was synthetic or bio-identical. If my test comes back low, ( which happens with these illnesses ) , then I'll start a bio-i.d. compounded estrogen.

    I feel taking the synthetic hormones are hard on your body. My mother has sworn by her estrogen shots ... highly recommends HRT. I agree with her on HRT, ... just prefer the natural bio-i.d. form.

    Hope this helps you some. I plan on replacing what ever I get low on for however long I can. Don't want to feel bad just because I have gotten "older" and that I should just except it as part of life.

    Take care,

  6. Mikie

    Mikie Moderator

    When I quit, I get heart palpitations. I also take the normal dose of progesterone. I seem to feel better with this regimen.

    I do not put any faith in the longitudinal study which is always mentioned as evidence of the effects of HRT. Only nurses were used in the study, so it is already so fatally flawed that it is of no scientific value whatsoever. Women should have been randomly chosen to participate.

    No one has more stress and is exposed to more pathogens than nurses. Both of these have been suspectied of playing a role in cancer for decades.

    I would say if a woman has a family history of breast or uterine cancer on her mother's side, it would be wise not to take estrogen. I have no such risks, so I am willing to take whatever risks there may be for the benefits I get from the HRT. I am at risk for osteoporosis and the estrogen may help with bone density. The jury is still out on that one.

    Love, Mikie
  7. Txslady

    Txslady New Member

    I have been reading this board for awhile trying to learn. However this is one subject I have information on.

    I had a complete hysterectomy (polyps, endometriosis, fibroids, ruptured cyst on ovaries)in 1998 at the age of 26. I did synthetic HRT (estrogen) from 1998-2002 the I swithced to Bioidentical HRT (estrogen, progesterone, testosterone) from 2002-2004. In June 2005 I was diagnosed with severe osteoporasis in my back. I am 34 years old and have the back of a 55 year old. My hip is not so bad it rates at the age of 37.

    I do not believe that HRT in any form stops osteoporasis or heart disease, I think they only treat the symptoms of hormonal imbalance. If you have had a hysterectomy I highly recommened a bone scan within 5 years whether you do HRT or not.

  8. lilione

    lilione New Member

    and gald I did. I had been toying with the idea of stopping for a couple of years. Due to the fact, I still have my uterus, I had to take progesterone every three months to bring on a period, that in and of itself was not pleasant. I was taking it for osteoporosis, but I will have to find another alternative.
    My brain deceided for me that I had to go off, when I stroked last June 11th. I had absolutely no medical fators to cause this, and I still have all the Drs. scratching their heads.
    You have to really weigh these decisions. I will say though I've had no particular withdrawal effects from going off.
    I wish you luck and inspiration in dealing with this.
  9. Greenbean7

    Greenbean7 New Member

    I was on Premarin for about 4 years after my hysterectomy. I stopped taking it right after that study came out but for about 18 months the symptoms were so bad I just couldn't stand it (the info I read said that you should wear layers and take them off as you got too hot, I was down to a tank top and shorts at work and just didn't think going down any further would be a good idea!).

    My GP put me on estridol which is very low dose and even though I still have the occasional hot flash, I feel much better.

    Premarin is made from pregnant mares urine (hence the name) and actually has about 26 hormones in it, of which we only use 2. Seems like overkill to me!

  10. Mikie

    Mikie Moderator

    But the fact that one person got severe osteoporosis on estrogen does not make the case one way or the other. I do not take it specifically for that purpose, so whether it does or doesn't protect most women against it isn't my main reasoning for continuing it.

    I am very sorry about the osteoporosis. I hope you are on some kind of treatment which can help regrow bone tissue. They have made tremendous strides in treating this condition. Used to be that there was noting one could do. Women with this disorder just became bent over and suffered multiple fractures.

    Of course, when we are the one person for whom something doesn't work, it convinces us that our experience either contradicts or proves the popular theory of the day. That is why good scientific studies can be helpful. The problem is that it is extremely difficult to control all the factors which can skew studies. The longitudinal study was so obviously flawed that it should never have been done.

    There is no right or wrong in regard to HRT. We each have to consider the potential risks versus the potential benefits and make our own decisions with the help of our docs.

    Love, Mikie
  11. Connie3

    Connie3 New Member

    I have been taking HRT's for over 17 years after a complete hysterectomy. I have been taking Estratest for about 4 years and want to get off just to get off "one more medication". I feel like a walking pharmacy. I am trying it by taking one every other day, and then one every 3 days. Don't know if this will work, but I want to see if I can do without it after a while. Thought about trying the Estroven Extra-strength. Anyone tried that?

    It is so wonderful to have all of you angels to share these things with.

    God Bless, Connie
  12. Connie3

    Connie3 New Member

    Sorry about the double post...sore, unpredictable fingers are to blame.
  13. fivesue

    fivesue New Member

    Another experience...My mom has osteoporisis and had a compression fracture of her back in 1996. At that time, the disease was diagnosed. Since she had not taken estrogen because of side effects since her histerectomy in 1974, she began taking estrogen...much improved since the early 70's. She has gained bone density since then.

    So, I don't know. It's like everything else; everyone is different.

  14. The lowest dose of premarin, I took .0625 for over 20 yrs, then I went on .03. I had a complete hysterectomy. My sister weaned herself slowly skipping a day a week, then two days a wk, etc. I am afraid to go off them. I had a bone scan and it showed osteopenia and am supposed to start meds for that. You really don't know what to believe anymore.
  15. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    More and more studies show woman need more progesterone, not estrogen. Doctors seem to be like a one horse show about it. If you have any little female problem, from cramps, severe PMS, menopause, you need more estrogen, it's always about the estrogen. You'd think someone might teach them taht we need other essential female hormones, like progesterone, estradiol, testosterone.

    Oh, and pardon me for even lumping menopause in as a female problem, because it's really a natural evolution of life isn't it. Though because of poor Western diet, and a plethora of estrogen mimickers in our diet, water, plastics (that hold our food and water) we end up all unbalanced. Most of us have read the articles.

    I'm glad the FFC recognizes these problems adn addresses hormones. I've noticed few people being perscribed estrogen though, it's usually the other hormones.

  16. earn

    earn New Member

    Thanks for information about hormons. I just walked in from my ortho dr--have such severe pain in back and legs (long time) fibro, Rheumathoiid-and all the rest.

    He found my bones have thinned a lot since last tests--even have 3 small fx of neck. I can not drink milk,or fosamax--and calcium is not helping.

    He wants me to start hormons--so i feel that I don`t have much choice. Large history of cancer in family---but I am 71 years of age---guess I will go with the hormons.

    Five sue---your are so right---we just have to do the best we can. I ask the Lord to help me --it could always be worse. Can hardly sit at comp any more--I can live with that too.

    Guess I will try to do some research on which ones to take (natural or not)
    Thanks everyone for all help and time you give-Laverne
  17. karen_dean

    karen_dean New Member

    all so much for your feedback on this topic...there is so much that is "up in the air" about this. I guess in all honesty we have to use are own judgement. As mentioned I am rather "skeptic" after hearing about all the downfalls of HRT.

    Once again thank's!!


  18. Mikie

    Mikie Moderator

    I'm so sorry about the bone thinning and fractures. There are other meds besides Fosamax. Perhaps one of them might work for you.

    Good luck with the HRT.

    I take such a tiny amount of estrogen but it is enough to stop the night sweats and palpitations. The dose of progesterone is much higher so that I do not get estrogen dominant.

    It is an individual decision and as we all know, what works for one may not work for another.

    Love, Mikie

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