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on taking hrt post hyst, post endo ( we HOPE) on taking hrt post hyst, post endo ( we HOPE)

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  #1  
Unread 05-27-2007, 08:10 PM
Unhappy - on taking hrt post hyst, post endo ( we HOPE) on taking hrt post hyst, post endo ( we HOPE)

I am 3 1/2 years post hyst, after 3 years of endo surgeries and treatments. Needless to say, I wasn't going anywhere near hrt no matter what. But my new pcp is really insisting, as I am only 32. Then she had me have a bone scan, and found osteopenic spine ( everything else is normal). NOW she isn't taking no for an answer, and although I like her lots, she just isn't well informed on endo, and has proven it when we discuss it. I am shy to say "you don't know what you are talking about", but when I said that at least I should be taking some progesterone to balance the estrogen, she said, "No, you don't need progesterone because you don't have a uterus, and besides, progesterone causes breast cancer. " Now I begin to doubt my sanity, and the hours and weeks of research I have done when faced with things like that!
Can you girls give me some insight? Of course, when they put it like my first gyn who said "so you want to be in a wheel chair by the age of 50??? " you begin to doubt yourself a bit . I mean the only reason I would take it would be for my bones, but a chiropractor I know said that if I take calcium and walk a LOT , I don't need estrogen for bones.
It was hard to hear this kind, sincere doctor ( my current pcp, not the gyn) say " You know, estrogen is the best drug on the market for osteoporosis." when as an endo sufferer, it seemed estrogen was my worst enemy, and if I hadn't been estrogen dominent to begin with I wouldn't have had so many problems.
I am sorry for the long , run-on post, but I just can't find answers, and just keep avoiding the whole problem, and the bottle of menest from the doc.
HELP!!!!
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  #2  
Unread 05-28-2007, 11:17 PM
on taking hrt post hyst, post endo ( we HOPE)



Endo creates quite a tangled up world for us, doesn't it?! Estrogen of course feeds endo, but it also helps with healthy bones, heart, skin, eyes, etc. There are women who do use HRT even though they have endo. Their need for hormones out wieghs the risk of more endo. And often the estrogen is balanced by progesterone when a woman has endo, regardless of the fact that there is no uterus.

We each have to decide what is best for us based on our own specific set of circumstances and health needs. And having a knowledgeable doctor helps! Is there any way you can see an endometriosis specialist? Many women find that neither their GYN nor their PCP are the best doctor to treat their post hyst hormone issues. And those of us with endo really need a doctor who knows a lot about endo and hormones. You may need to start with an endocrinologist. Also, ask to be referred to a doctor who specializes in treating women with osteoporosis. A specialist may know of other treatment options that would be benefitial. There are many different ways to treat osteo and one of them might work for you, without needing to use HRT.

Unfortunately there is no perfect answer. You have to weigh the pros can cons for you. And talk to doctors who specialize in treating the specific medical condtions you have in your body. Then decide what treatment plan is best for you!

in there and best wishes to you!
  #3  
Unread 05-29-2007, 03:24 PM
on taking hrt post hyst, post endo ( we HOPE)

Taking hrt is a very personal decision when dealing with endometriosis and I won't try to convince you one way or another, but as a sufferer of severe osteoporosis at 34 years of age I will tell you that there is much more you can and should do to protect your bones than just taking calcium and walking. Vitamin D is extremely important, even more so than calcium, for helping your bones. You need vitamin D to properly absorb the calcium into your bones. Ask your doctor about it and how much he/she recommends taking. My rheumatologist told me to take 800-1000 IU daily. Researchers are finding now that the RDA of 400 IU isn't generally enough to really benefit from it.
Also, for post menopausal women without ovaries, at least 1500 mg of calcium daily in divided doses of 500 mg at a time (the body won't absorb more than that at once) is recommended. Of course diet is very important as well, and if you aren't big on dairy products (as many endo sufferers struggle with), there are other ways to get calcium and vitamin D from the diet...canned or fresh salmon, almonds, leafy greens, etc..

Walking is good, but studies have shown that walking alone will not generally improve bone density unless you have ankle weights on and walk briskly, possibly uphill. Weight bearing exercise is very important in building muscle to protect our bones and in increasing bone density. Using free weights, activities that involve jumping (dancing, jumping jacks...), running, tennis, stair climbing, some aerobics are all good weight bearing exercises. I have a book called "Strong Women Strong Bones" by Dr. Miriam Nelson that shows some exercises to do that have been proven to increase bone density. Some of them involve using free weights. You can do a google search and find more online as well. In her book, she recommends at minimum 1/2 hour a day, preferable more of exercise. Of course all this depends on your health as well. I started with a physical therapist who did an assesement and came up with safe but effective exercises for me that would not put me at further risk for more fractures. I already have several hairline stress fractures in my feet and right ankle. I also deal with fibromyalgia and pelvic pain that makes exercise a challenge at times. Still I make myself do it unless I am in extreme pain. I am NOT going to go down without a fight!

There are also several drugs on the market to treat osteoporosis (they arent generally given to those with just osteopenia but sometimes are). They aren't without side effects and long term health risks though so research them carefully. I was taking calcitonin nasel spray to treat my spinal osteoporosis but now have chronic sinus pain so had to stop it (I am HIGHLY sensitive to meds). I am apprehensive about taking any of the bisphosphonates (Actonel, Boniva, Fosomax) with all the bad publicity and with the risk of stomach problems (already have bouts of gastritis) but since I am already suffering and struggling with other issues that make exercise difficult sometimes, I am seriously considering it. I do personally take hrt but it has not been enough to slow the bone density loss. However, I can not tolerate testosterone or natural progesterone which are said to help increase bone density (estrogen generally protects your bones but does not increase bone density). I was a little worried about taking estrogen after a hyst for endometriosis but for me I could not tolerate the symptoms of surgical menopause. Also, being so young and having such a short exposure to the menstrual cycle (first period was at 16, last at 33), I am at huge risk for osteoporosis problems and other health risks that come with not having enough hormones. I did and still continue to have pelvic pain, but had another lap one year post hyst (having been on hrt most of that time) and no endometriosis was found...just adhesions and scar tissue. So as far as I know the hrt has not caused any worse problems with endometriosis. I do sometimes wonder if a specialist would be able to find endo that my regular gyn missed as sometimes the pelvic pain is excruciating (and a lot was left behind during my hyst). But then it could just be adhesions again or something else. I have had so many tests and procedures it is ridiculous!

I hope this helps! Good luck with everything and I pray for you that your osteopenia does not get worse. Neither endometriosis or osteoporosis is a fun disease to live with and my heart goes out to you! I know what you are going through!
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  #4  
Unread 06-01-2007, 10:11 AM
on taking hrt post hyst, post endo ( we HOPE)

Hi Macree,

I really struggled with the decision to use HRT or not because of my endo also. To save my bones as long as possible I ended up going with my doctors recommendation of a low dose HRT consisting of estrogen and testasterone. I still don't know if I did the right thing, but there is no way to really know until further down the line. If my endo starts to try and come back I'll be taken off the HRT and hopefully the lack of estrogen will kill it off again. My doctor says we're just trying to get me to 45-50 with good bones then I'll be able to get off the HRT. It's funny, before endo and the hyst I never thought I'd be thinking "If only I was older" so often.

I hope it helps just knowing you're not alone.

Take care and good luck!
Rose Garden
  #5  
Unread 06-01-2007, 04:06 PM
on taking hrt post hyst, post endo ( we HOPE)

Macree,

I don't take hrt and I had my tah/bso for endo.

I do use natural progesterone cream and natural estriol creme. I had a bone density done last year and everything was fine. I haven't had one this year, but I do also take calcium with vitamin D and calcium.

If I were to develop a problem with my bones I would most likely use something like boniva. I don't want to take estrogen because of family cancers.

best of luck to you.
  #6  
Unread 06-04-2007, 04:33 PM
on taking hrt post hyst, post endo ( we HOPE)

It is so nice to find a place were people are facing the same situations that I am. I'm 35 and exactly 2 months post-TAH with a histroy of Severe Endo, and Adenomyosis. I'm already experiencing several hot flashes almost daily. My endocrinologist and surgeon are both recomending that I wait a minimum of 4 months, and then from an "as needed" basis (meaning, if I can get away from not taking it, that may be good). I have also learned just exactly how important it is to have doctors that really do understand Endo. I'm planing to look at both natural methods as well as making sure I'm completely educated on HRT. I know one thing for sure, after 7 laporoscopies, plus my TAH, I don't want to have to repeat any of that if I don't have to. These posts have given me a lot to consider in making those decisions.

I wish you luck in your decisions on the best options, and I sincerely thank the others for some guidance on how to approach this disicion from an "Endo" point of view. (something not easy to find elsewhere)

Thanks
Mrscnfd
  #7  
Unread 06-08-2007, 12:31 AM
on taking hrt post hyst, post endo ( we HOPE)

  Quote:
Originally Posted by Macree
I am 3 1/2 years post hyst, after 3 years of endo surgeries and treatments. Needless to say, I wasn't going anywhere near hrt no matter what. But my new pcp is really insisting, as I am only 32. Then she had me have a bone scan, and found osteopenic spine ( everything else is normal). NOW she isn't taking no for an answer, and although I like her lots, she just isn't well informed on endo, and has proven it when we discuss it. I am shy to say "you don't know what you are talking about", but when I said that at least I should be taking some progesterone to balance the estrogen, she said, "No, you don't need progesterone because you don't have a uterus, and besides, progesterone causes breast cancer. " Now I begin to doubt my sanity, and the hours and weeks of research I have done when faced with things like that!
Can you girls give me some insight? Of course, when they put it like my first gyn who said "so you want to be in a wheel chair by the age of 50??? " you begin to doubt yourself a bit . I mean the only reason I would take it would be for my bones, but a chiropractor I know said that if I take calcium and walk a LOT , I don't need estrogen for bones.
It was hard to hear this kind, sincere doctor ( my current pcp, not the gyn) say " You know, estrogen is the best drug on the market for osteoporosis." when as an endo sufferer, it seemed estrogen was my worst enemy, and if I hadn't been estrogen dominent to begin with I wouldn't have had so many problems.
I am sorry for the long , run-on post, but I just can't find answers, and just keep avoiding the whole problem, and the bottle of menest from the doc.
HELP!!!!

Have you tried taking Actonel, or Fosamax for the osterprosis? I am 35 and have had osterperosis for many years now (due to having to take prednisone for Lupus) and I feel if you aren't having any other problems with hormone levels or heart disease maybe you and your doctor could compromise.
I am going thru the same thing with my doctors and they know I will make ultimatly make the decision~I mean they can prescribe it but that doesn't mean I will use it if I don't feel comfortable with it.
Although all my doctors know that I am stubborn and I always tell them up front that I know my body and I know when things just don't feel quite right. If you don't feel right about HRT then I suggest you talk with the doctor about just taking the prescriptions for osterprosis. I recently had another DEXA (bone density test) and my bones were better so I know it helps.
Just a thought. (sorry the answer was a tad long).
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