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Complicated situation and hysterectomy

In 1997 at the age of 32 I had a complete hysterectomy and a bilateral salpingo-oophorectomy after suffering from severe endometriosis for 15 years. Prior to my surgery I had Laparoscopy but the endometriosis returned. Because I was at my wits-end and in so much pain I opted to have the hysterectomy. At the time of the surgery the doctor found that my ovaries were severely effected by the endometriosis and removed everything. Since then I have been on HRT, mainly 1 mg of estrodial.

To make matters a little more complicated, my family has a substantive medical history of both breast cancer and dementia. From what I have gathered through research I see that having had my ovaries removed can increase the possibility of developing dementia later in life and being on HRT can increase my chances of having breast cancer. In addition to this, since having my surgery I have never felt quite "normal" in that I just don't feel the same as I did before. It is hard to describe accurately but it is just something I feel is DIFFERENT.

So, my question is this; knowing my background as described above, is 1 mg of estrodial enough for me and should I also be taking something else. I have heard that bio-identical hormone replacement is better than taking other forms however I am not sure about this. And when should I stop taking HRT alltogether? When I stop taking it the estrodial I suffer from pretty awful menopausal symptoms and I am worried about osteoporosis.

Thank you for your time and I appreciate any information you can give me. I have been to several gynecologists and have yet to find adequate answers so I am really hoping you can point me in the right direction.
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242601 tn?1216996647
MEDICAL PROFESSIONAL
Your problems touch a lot of women as evidenced by the response you have received. Here are some additional thoughts to share with you.

Estradiol you are taking is a bioidentical hormone. It is one of the main ones added in compounding pharmacies. One milligram is a therapeutic but low dose. It can be effective for many women but you were quite young when you had your ovaries removed and might need more than one milligram. In the women's health initiative (WHI) study that associated breast cancer and hormones, in women who had their uterus removed and who received estrogen only (in that study the estrogen was Premarin), there was no increase in breast cancer. Only women who took PremPro (a combination of estrogen and progestin) had an increase. If  you have a strong family history of breast cancer, talk with your doctor about being checked for the breast cancer gene (BrCa). The data are a little less clear about risk of estrogen and breast cancer risk in that case. But a dose of even 2 milligrams of estradiol is still in the range of the normal menstrual cycle level and is often enough estrogen.

There is a small risk of endometriosis returning while on estrogen, but it is small if both ovaries and the uterus have been removed. However, if the dose of estrogen is sufficient, you might not need either progesterone or testosterone. It is best to try one hormone at a time to be sure how it is helping (or not) you. You are also correct that estrogen appears to be helpful for prevention of dementia if started shortly after menopause. It might actually be worse for that problem if 10 years or more go by before treatment.  

When taking estrogen, it is best to think of it as a 5 year renewable option. New information is always coming out. For now, consider talking with your doctor about a higher dose of estradiol and give it a month or two. Then you can consider adding things if things are still not right for you. Every few years, discuss what new information has come out and if taking estrogen is still a greater benefit than risk. In the meantime, also ask  your doctor what testing you should be having for breast cancer detection. Would you benefit from MRI as well as mammogram and how often to get them are topics to discuss.
Machelle M. Seibel, MD
Helpful - 0
106886 tn?1281291572
Sorry...I meant to add that if  you go to the archives on the Ovarian Cancer Patient to Patient forum to look of past hormone discussions, I think a good place to start looking would be under the "general" catagory when asked which category you want to check.

Until Later,

Mary
Helpful - 0
106886 tn?1281291572
Hi,

First of all, I just did a google search using these words    

seattle physicians bioidentical hormones


And, when I checked the 8th "hit" down (I did not check all of the ones prior to that one) I found then hit  the word Cached (now for some reason that does not look right ...) but you know, where you have a choice to highlight the words you have googled. Anyway, I found a long listing of doctors in the Seattle area who apparently work with women interested in using bioidentical hormones.


Having said that, I will say I checked one other "hit" on that google search where there are some comments about these hormones and how they compare to using the synthetic hormones like Premarin. I am so thankful that doctors are getting the word out on these hormones, but again, I stress doing your own research as it sounds like you are doing. One comment was that the bio's are usually not covered by insurance. I have never been refused coverage in all the years I have used these. I might get less coverage, and there were times I had to pay full price for the hormones and then submit my own insurance claims, but I have always had about 70% of the price covered.

This does get confusing, though..doesn't it?   I have to run out to get my allergy shot (I'm really not a mess :)  so I cannot go into detail now, but I wanted to suggest you check the archives under the Patient to Patient Ovarian Cancer forum here on Medhelp.  You might have to go back a ways, but I know I did a lot of corresponding in March of this past year....before and past that, too, as I have been writing on this site for almost 4 years now, but there is hormone info from me and others in the archives. The tricky part is finding it....look for "To Mary 53" or of course, anything that says "hormones" in the topic.  

I have info  (That I had written and saved) on my hard drive concerning progesterone that I can find and post later. Do check on this very forum where I wrote to the woman who asked about over the counter Progesterone...I think it might be a page back from here.

Sounds like you are busy and congratulations on your recent marriage. Sad to hear about your Mom. My mother-in-law, our daughter's only living grandparent, is 87 and in the throws of the same type of dementia. It is so difficult, isn't it?

Keep researching, though...knowledge is power as we all know.

I will write back later.

Mary
Helpful - 0
Avatar universal
Hi Mary,

Thank you for your response and for sharing what you have experienced in your own life. I have read many so many things that I am just not quite sure what to do but what you are saying is something that certainly rings true amongst the research I have done myself.

Right now I am taking plain "Estrodial" and not a name brand like Premarin. I asked one of my doctors long ago to put me on something that was as close to natural as possible and didn't involve pregnant mares and urine. She put me on plain old Estrodial. At one point  about 9 years ago I was taking something called Estratest which included testosterone but for some reason the doctors took me off that and now for the life of me I can't remember why.

I have read a lot about progesterone cream but again I am not sure which kind to get and where to get it so I can make sure it is of good quality and will do me the most good. I also used to take calcium and magnesium supplements but don't anymore. I think I should include that in my regimen again though. I have just been so distracted lately with my mom's illness and recently getting married and suddenly having four step-sons after not having any kids of my own ever that I have sort of put myself last. This is a change for me since I was on my own for several years and only had myself to take care of until my mom became ill with Alzheimer's.

Anyway, thank you again for your help and I am going to get a look at that book you recommended and continue doing my research and try to find a doctor that can help me in the Seattle/Tacoma area.
Helpful - 0
106886 tn?1281291572
Hi, I hope the doctor doesn't mind me pitching in my two cents... but you might want to read the posts I responded to regarding HRT ..and, the post regarding over the counter Progesterone cream. I totally know, if I may say so, how you feel. At 47 I had everything removed and although I, too, was put on Estrodial (Vivelle Patch 1 mg.) right away, I did not feel right. Once I got on a small dose of testosterone and Bioidentical Progesterone (not Progestin, a common confusion) I started to feel better than my old self. Much of perimenopause's symptoms happen because a woman in her late 30's and 40's starts to skip ovulation, thus the release of Progesterone is diminished. Estrogen is then unbalanced and that is when the problems start.

Estrodial is a bioidentical hormone. If you said you were on estrogen such as Premarin, that would be considered synthetic and not bioidentical. You still certainly have to be respectful of the amount of estrogen you are using even if you are using bioidentical estrogen, but the chemical makeup is identical to what your body once made on its own. The synthetic estrogen is one molecule off, but that makes a big difference and that is also why it can be patented. Bioidentical hormones cannot be pattented so they don't get a lot of attention although recently more information has come about...but, in some cases it has added to the confusion.

In my opinion after 7 years of research, balance is sooo key. I meet with a nurse every three months to make sure I am in balance with my estrogen and progesterone and the testosterone, too...which helps not only with desire but with mood, clarity of mind, chemical sensitivity, and believe it or not, clumsiness (I can attest to that one!). I want to be on a small amount of estrodial (I am on .075 now seven years after the surgery) and will probably drop to .050 next month). For one thing, estrogen is thought to help keep the cell receptors for progesterone open.

I have already experienced osteopenia, close to osteoporosis. I was able to reverse that diagnosis by increasing my wt. training and adding extra calcium, Vit D and magnesium. At the time of diagnosis for osteopenia, back in 2001 (after I broke my wrist!), I had just started to take the progesterone, too. Where estrogen is thought to protect from bone loss, progesterone is thought to build bone.

I am not a doctor. I am a mental health worker. I guess in a way I am a crusader too. I am saddened that more and more women are left in the dark regarding this whole hormone situation. I was lucky in that my doctor was willing to help me research the whole world of bioidentical hormons and we worked with a compounding pharmacist. But, I have had people ask me why I am taking progesterone since I don't have a uterus. Well...we have receptors for it in our brains and in our lungs. My quality of life changed for the better once I started to use it. But, times have changed..women are living longer, having fewer children, which affects how one goes through menopause. But, the surgical menopause is something else. But, there is help although I truely recognize that this is such a personal decision.

Research is key so that you understand all of your choices. My understanding is that when you are in balance hormonally, you actually get the benefits of protection regarding certain cancers and dementia. "The Wisdom of Menopause" by Northrup is my favorite book. The woman has changed my life...

Sorry to go on and on..but, after surviving an initial diagnosis of Ovarian Cancer, I almost feel it is my duty to share what I have learned. I hope this has been  helpful.

Take care,

Mary
Helpful - 0

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