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Desperate in NJ Desperate in NJ

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Unread 12-28-2002, 04:14 AM
Desperate in NJ

How long does it really take to feel human again after a hysterectomy? It's been 16 weeks for me and I am miserable!

My gyn and my primary drs can't seem to figure out what is wrong with me. My worst symptoms are poor sleep and lots of body aches and pains. I see from reading other posts that so many of us have been diagnosed with fibromyalgia post op, and other similar conditions. Wouldn't that mean that a lot of our pain is hormone related?

I was on .075 estradiol patch but feeling crummy. Gyn felt that maybe I needed more estrogen and upped me to .1, but my symptoms got worse. After info from other hyster sisters, I upped some of my supplements and felt a bit better, but seemed to feel a lot better when I cut my .1 patch in 1/2. A few days later my gyn did blood tests and my estradiol was only 31 (post menopause level) so she told me to go back on the .075 patch even though I was feeling fine. What I thought was strange was that with a low estradiol level my FSH was also very low--usually it's high when our estrogen levels are low--so is that my body's way of saying that even though my estradiol level is low, it's enough for me?

I've been back on the .075 patch for about 2 weeks now, and all my symptoms (poor sleep, aches and pains, muscles crunching, joints cracking, etc) have come back. I've also started getting headaches. Even taking higher doses of the supplements (magnesium, zinc, B vitamins) isn't working. Everywhere I read that we should shoot for estradiol blood levels of 90 or so for optimum health, so that's the only reason I agreed to go back on the higher dose of the patch since my level was only 31.

Has anyone else felt better on lower doses of estrogen than on higher? Even though test results show blood levels lower than my dr. wants me to have? Anyone else here in NJ and have a dr. they are happy with? I'm 49 but now feel 89. I wish my dr would have done hormone testing before the surgery to know what levels my body was used to. I've been awake since before 2AM and it's now past 7, so I apologize if I'm rambling. But I feel a bit better just having written this, so thanks in advance for any advice or experience sharing any of you may offer.

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Unread 12-28-2002, 10:07 AM
Maybe I'm crazy

Maybe I'm unusual, but I had more symptoms when I was on estrogen than I was comfortable with. I have been on NO hormones for over a year and feel pretty darned good. I have FM and CFIDS but I had them before the surgery and they got better, not worse, once I stopped HRT. My doctor had told me that some women got better after menopause and for me that turned out to be true.

Unread 12-28-2002, 02:38 PM
Desperate in NJ

I think I have read AUDREY S mention being estrogen dominant. I think in the No HRT forum is where I saw this, which I noted since I wonder the same about myself, no surgery at this point, still checking out alternatives. Currently "the Girls" (ovaries) are sleeping due to Lupron and I have never felt better!!! Unfortunately Lupron is not a long term fix.

I think AUDREY S can help with the estrogen dominance question.

I'm not a Doctor. This is just my experience.
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Unread 12-28-2002, 03:52 PM
Desperate in NJ


I, for one have felt less anxiety and much fewer and less intense headaches since lowering the amount of estrogen I take. (Using USP progesterone cream has helped my anxiety and insomnia too.) Yes, I have heard a number of sisters say that they felt better with lower (or even no estrogen). Increasing either the estrogen or the progesterone increases my aches and pains. Every single woman is different and NOONE knows what all is produced by the ovaries and/or adrenals in every single woman - nor does anyone know what is needed by each woman at a certain point in her life. What the "average" woman has at 20 compared with what she needs at 30,35,40,45,50..... I dislike it when a dr. says that I will need a certain amount of hormone when I know that he/she doesn't have a clue other than what is common medical practice (to those who are simply trying to make a buck-the pharmaceutical companies).

I don't sound cynical to you or anything, do I?

I just know that each woman is the best judge of how she feels (she is the one who needs to spend the most time in her body). That's not to say that doctors can't be wonderful resources, but we can't turn the total responsibility for care of our bodies over to anyone else!

It's really good that you are checking out the resources available to you!

Unread 12-28-2002, 04:39 PM
Desperate in NJ

have you considered using progesterone? for many of us, including me, it got rid of all of the symptoms you speak of. it is true though that you want to be on the lowest hrt doses that you are comfortable on, but surgical meno with no hrt, sets you up for some problems...especially bone health. i highly recommend the compounded progesterone.
Unread 12-28-2002, 06:47 PM
Lower Estrogen


I understand your feeling better on the lower estrogen. I started out on 0.050 Climara patch, and was having some hot flashes, but otherwise felt good. When my estradiol came back at 44, Doc wanted me to jump it to 0.075 I did, but after a few weeks, I was so anxious I couldn't sit still. She kept telling me it was in my head so I stayed on the high level (for many months). Wish I had not, as my body was trying to tell me something and I wasn't listening. I just had my first mammogram since the surgery and I have nodules that were not present before, so I took myself back down to 0.050. I really think we need to listen to our bodies more. I am 54, so for me I think my body was used to lower estrogen, and it was like giving my body way to much gas.

Take care.
Unread 12-28-2002, 07:11 PM
fighting fibro, chronic fatigue and hormone imbalance

Now this is just personal testimonal stuff. Remember, I am a patient just like everyone else posting. Like some of the women posting here, I saw improvement in my hormonal imbalance symptoms after some tinkering in the last two weeks. Still some tinkering to be done. Progesterone added, much calmer, formication stopped, frequent hot flashes cut down in frequency, brain fog improved just a bit. More estrogen, other improvements. Testosterone, yet other improvements. Vaginal estrogen, helped other symptoms. Still not in balance but getting there. My opinion here but pre-op testing doesn't make a lot of sense since what was there with ovaries totally and drastically changes once the ovaries are removed. Nice baseline for what was normal once upon a time, but I think it is more useful to look at what is going on presently. Room for disagreement here.

I am not going to worry about lowering my estrogen doses to the bare minimum until about one year post op. Benefit of bone protection in the first year outweigh the risks from my perspective. Eventually, I plan to be off HRT in five years, gradual weaning. And who knows, as the tinkering continues, maybe the progesterone will do the pre-curser thing and lower my estrodial dosage needs. Or the nutritional or herbal therapies will do the same. Too early to tell right now. Only about nine weeks post op.

The fibro is something that I notice flares when I don't get enough sleep or overuse my muscles. Endocronologist did the exam and I have all the trigger points to make the DX. Endocronologist verifies that sleep disturbances make it worse and post-op insomnia comes with the territory. He also thinks my 12 past surgeries has created conditions that made me ripe for chronic fatigue syndrome. Waiting until the first of the year for a complete work up on this when my insurance starts paying for "routine physicals and lab testing". He wants to try some muscle relaxants and phenobarbital next to improve sleep quality. He also wants me to see a rheumotologist who is really the specialist for these diseases. I am also experimenting with some self-help sleep hygene stuff.

I am also exploring the more nature based treatments for what is going on with me, but I still have to do a second consult with my naturopath. Been doing chiro and acu as well, all contribute to my feeling better with some symptoms. Chiro is going to have to go since insurance dropped our coverage amounts to practically nothing at the first of the year. $750 limit per year is like 10 visits!

I also echo Lynn's sentiments since I know that most of the HRT education doc's get is from pharmaceutical companies. I think we all know about the seminars and golf outings paid for by the pharmaceutical industry so I will try not to rant here. Natural progesterone simply isn't being studied since there is no way to patent something that occurs in nature and no money to be made for the pharmaceutical companies. You can patent synthetic hormones and patch technology however. Compounding pharmacists were something I knew very little about either. Glad I found my CP, he has been a true ally as I fight my way out of the jungle.
Unread 12-30-2002, 12:30 PM
Desperate in NJ

After another horrible night of hardly any sleep, I took off my patch today. I'll leave it off for a day or so and then try cutting the .075 Climara in 1/2, to .0375 dose and see how I feel. I'm so grateful to hear that others actually feel better on lower doses of estrogen, too, so I know I'm not crazy. I'm just worried about the bone loss thing, but I don't think I can take a high enough amount of estrogen that they say I would need to prevent bone loss--the side effects are making me miserable.

It's amazing that a couple of you who responded mentioned feeling anxious. Lately I've been getting these weird emotional feelings, almost like a very intense sense of desperation. I'm just glad that they don't come when I'm driving the car as I'm afraid I just might crash. And my dreams have been totally weird, with me feeling actually conscious during them and sort of directing them. I don't actually get into a sound sleep long enough to have real dreams, so they seem to be more like daydreams, just at night. I know this may sound totally weird and make no sense, but it's really what I've been experiencing.

As for progesterone, I want to take it but my dr. is totally against it. It makes sense that some of my symptoms could be from unopposed estrogen, maybe even more so than from too much estrogen. I had tried the over the counter progesterone creams in a failed effort to shrink my fibroids, as well as the usual herbs, but it didn't work. My dr. says that over the counter creams are actually converted into estrogen by our bodies, and, since I don't have a uterus anymore, she says that there is no need for progesterone and would not prescribe any for me. I've been trying to find a new dr., but any that I've gotten leads on that are even remotely near me, are not on my insurance plan. Pete Hueseman of Bellevue Pharmacy (one of this site's sponsors) just gave me some leads to try. If they don't pan out, I'll probably use his house physician. So there is hope!!

Thanks for sharing!!!

Unread 12-30-2002, 12:38 PM
I thought Pete was pretty great too!

but makes more sense for me to use the local compounding pharmacy instead of one 2.5 miles away in my case, who is used to working with my local gyn.

I know what you mean about the dreams! So vivid, so wild and so in my face! And a much more emotional reaction to them since menopause. Some of the reading I have done points to a shift in brain chemistry that makes the right side of our brain, the part that controls intuition more active. The Wisdom of Menopause by Christiane Northrup MD if it interests anyone.
Unread 12-30-2002, 07:14 PM
Desperate in NJ


Drs. have gotten much of their current hormone education from drug reps, who have told them that Provera (synthetic progestin) shouldn't be given to women who have had hysterectomies and the only progesterone receptors are in the uterus. I have seen (on this site and thru searches on the internet) studies/reports about the receptors for progesterone in the brain/central nervous system. None of these sites had any money to be made from their assertions, either.

That said, I have seen a number of negative reactions when women who've posted here or another menopause site that I frequent take the recommended dose on the tube of OTC progesterone. Especially for those of us who don't have any ovaries - the dosage seems, from those posts and my own personal experience to be much less.


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